The writer needs to read Gawande's Being Mortal. Comparing the needs of the frail elderly with that of toddlers shows that she doesn't understand what old people want....which is usually as much autonomy as they can get, with a willingness to relegate safety to second place.
109
My 88 yr. old father is dying of colon cancer that has spread and is now paying about $7000/mo. for round the clock nurse aids in his home. He is a retired physician so can afford the bills, but he's the exception. Without his savings, he would be miserable in a Medicaid nursing home or dead. Assisted living sounded great when it started over 20 yrs. ago, but like everything else in the US it sold out to for profit companies who charge at least $4000/mo. to provide an apt. with a couple meals/day and a nurse on call at night which they call "24 hr. coverage." Japan sounds like they have it right and after this country elects a competent president again, we need to adapt their system.
175
Assisted living is clearly not the answer for everyone, but it was the answer for my elderly father, who started out in an independent apartment at a continuing care facility one month before his 95th birthday. About a year later, he either fell, had a stroke or fainted and was found on the ground. After hospitalization and rehab at the same facility's nursing section, he moved into assisted living. After another 1.5 years, he began to fail physically. They allowed hospice to take care of him in the assisted living section, which was better for him as he would have become disoriented if he had been moved to skilled nursing. Dad was the pet of the staff despite his curmudgeonly disposition. He was the oldest resident there. The care was wonderful.
86
To all the unselfish posters who suggest their loved ones slip them barbiturates or push them off a cliff, they are meaning to be sincere and fatalistic but they are not helping the case. These sorts of gimmicky tropes are categorized as murder in all states. So the concept is not feasible and fails to offer solutions other than having a surviving loved one spend his or her last days in a state penitentiary rather than assisted living.
48
An analogy could be drawn between for profit and not-for-profit as it concerns both universities and residential elderly care ( and for that matter banks and hospitals too ). There are some very insightful suggestions that communal living may be a solution. Let’s take it a step further and make it a financial co-operative or mutual dynamic where the residents are principal stakeholders and have a smaller entrance cost, a more lean and more direct accounting of the operations which provide them the services and quite possibly a residual value if they depart.
30
My mother was in assisted living for 8 years, from age 92 to 100. It was a licensed facility in a 4 bedroom home in a lovely neighborhood housing six ladies. They all had memory and health issues. There were generally two caregivers, but sometimes only one. It is very hard to find compassionate help. There were times there was only one caregiver to help all six ladies eat, and they all needed help. The caregivers had no medical training whatsoever and were not allowed to give any medical assistance, though sometimes they went beyond what they were legally allowed to do. For $3500 per month it was a good deal. The care was ok, no one was injured, luckily. The main positive was that it felt like a home, not an institution, and so my mom was happy there. She did take an antipsychotic medication, which helped her be happy. If my mom had no money, the state would have paid for a nursing home. Then you get “medical” supervision, but the place feels like a hospital. And the medical care in such places is questionable, especially as they are now all for-profit institutions, making money from government health programs. She could never have adjusted to being in that environment, and I’m sure would have died much sooner. Would that have been bad? When all six ladies sat around the table at mealtime, looking at each other, but not really recognizing each other day after day, needing help just to eat, I wondered if there isn’t some better way.
67
Why tell us the average cost of assisted living without telling us the average cost of nursing homes?
40
Nursing homes are no panacea. My aunt fell three times in the six weeks she survived in the facility and no one in the family was notified.
31
Back when I had a primary care practice I cared for lots of elderly people. Some of them did things that were risky or bad for them. If they were risking other people - impaired driving, for example - I tried to intervene. Too often, though I was dealing with family members who demanded things like 'can't you make him eat less salt?' Or 'how can you let him walk on stairs?' Mostly these were mentally intact people who had made decisions for themselves about how they wanted to live and what risks they wanted to take.
Remember this, your human rights do not have an expiration date.
136
All the examples brought up by the writer should not have been in assisted living facilities,certainly people with dementia or significant physical impairmennt.
It is important to distinguish between Nursing home and Assisted living facility.assisted living should be considered the next step after downsizing!
24
As the end approaches, before making an admission of morbidity and taking to my death-bed, my plan is to summon my last ounce of strength to end my life. Timing is everything with such a plan, so I’m hoping for a terminal diagnosis before I’m totally debilitated. I have two methods in mind depending on the season. Winter, go for a walk in the woods and let hypothermia do the rest. Summer, take a long walk off a short pier. Or talk to my doctor to find out if this VT end of life law is more than a sham. Sorry, I’m taking my cues for this post from many of the others that sound adamant about ending it all rather than existing as a vegetable. I have a hunch it’s not that easy, for now.
73
Having been in medicine for over 35 years, I am ever more despondent about geriatric care. We have devised all form of medicines that can keep people alive - all at the expense of quality of life. With aging, the side effects of medicine become ever more difficult to manage, and yet, people expect the same quality that they had 20 years earlier. Patients with multiple morbidity issues are a nightmare to treat.
Ezekiel Emanuel once wrote an article for Atlantic Monthly about wishing to die at the age of 75 for this very same reason. Many people were outraged, but there is a hint of honesty that all individuals need to take seriously.
Medical interventions do not treat quality in the later years of life; they are survival remedies.
103
My 82-year-old father, who is still in good cognitive and physical health, tells me he would like to "end it all" should he develop dementia. I'm seeing a lot of this sentiment here in the Comments, too. Sadly, many dementia patients fail to recognize they have the disease and do not believe themselves to be sick. This is not uncommon with dementia. My mother-in-law was diagnosed at 79 and, despite the neurologist telling her so, it never registered with her and she was puzzled as to why we were curtailing her freedom (no more driving, in-home caregivers 8 hours a day). Three years later, she is now in memory care. She has good care, but it is very expensive.
42
I've had a good life, I plan to have a good death. But I accept that you must work for everything.
12
Geeta Anand has written a very interesting essay with specific recommendations based on her own experience of helping her parents. I enjoyed reading. Geeta, a Pulitzer Prize winner, is one of the rare creative writers. Geeta having lived in India and the USA, educated in India and the USA, has broadened her vision. I hope Geeta will find time to write more frequently.
I met Geeta's father Mohan Anand when I came to the USA 65 years ago and we were good friends.
21
My beautiful mother died at the age of 92 this past April. She was a resident of the most attractive assisted living facility in Bangor, Maine. She was intermittently not well over the last few weeks she spent there. Then she fell on a weekend. We had her on a schedule to see the visiting NP the next day. I was assured she would be checked hourly until then, because of the fall. I spent most of that day with her. I arrived at 9am the next morning to meet with the NP, and found my mother in the same place (her recliner) in the same clothing, having never slept in her bed. Her chairside table was overturned and her walker far out of reach. She was very somnolent. She had been neglected overnight, and NOT checked every hour as promised. The NP did not show up as planned so I took her to the hospital, where she was admitted for pneumonia. I spoke with her attendant before I left the assisted living facility. She told me she was responsible for that entire level of patients (approx. 45 people, and about 15 of them "lift assists". This is a humanly impossible assignment. So, I blamed the facility director and the for profit corporation for my mothers neglect. These places promise people the moon just to get residents in to door, and then they do not deliver. They under staff, and cut corners and the staff turnover is constant. All of it is to meet profit goals. I am completely disgusted that this is allowed to happen. These places definitely need to be regulated
258
I hope you are suing because absent regulations, the only thing that can keep these greedy places honest is fear of lawsuits.
36
Hate to break it to you all but by the time you need to ‘end it’, you will not be in control of the decision. You say you don’t want to live with disability, dementia, etc. and that you will somehow manage to kill yourself. Exactly how will you do that? Will you time it for just before the dementia leaves you too confused, just before the fractures from falls, just before the stroke? Do you have a loved one who will do it and risk prosecution? A living will generally kicks in when things are fairly advanced - and even then they can be overruled and it can be a slow passive death. Assisted suicide (homicide?) as decided by a named proxy could be the answer. Are we brave enough to legalize that concept?
177
We seniors have a responsibility to get our papers (wills, health care proxies, medical directives, funeral wishes, heirloom distributions, passwords, etc.), and affairs in order. We must clean out our closets, basements, attics, file cabinets. We must consolidate our bank accounts so our heirs don’t have to teach in ten passbooks accounts at four different banks (this happens, believe me). Downsize so our children don’t have to do all that gut-wrenching clean-out while they are grieving after we go to a home or die. We also have a responsibility to die with grace when it is our time. I’m not talking about hastening the process. Knee replacements at age 85, heart surgeries at 87, chemo at 90? The huge majority of elder medical funds are spent on the last 6 weeks of life. Just make peace with your maker -- if that’s your belief -- and your loved ones. Then go gracefully. That’s my plan. Jackie Kennedy Onassis showed us the way.
332
Will any one please also do a study from the point of view of these healthcare workers?
90
The answer is pretty simple, for me. If I see myself rapidly declining with no hope in sight, I am going to kill myself instead of burdening my children or society. There's no point in clinging to life if life is no longer worth living.
80
If you get sick, as we all do, you can be kicked out, no matter how well your bills are paid. Where do they send you? To a nursing home, where no one is really treated with decency no matter how nice the lobby and receptionist might be. I have seen several women, all over 85, weeping as they are taken away from an assisted living facility where they thought they could live in some comfort and peace. Stuck in a wheel chair and pulled away. Weeping.
71
The day I am unable to be in charge of my life, is the last day I will be here. It is up to me. It is not up to you. It is not up to family. Family is not the sacred beginning or the end. Nursing homes are institutionalized concentrated certified centers of abuse and torture. I was shocked to my core to see the "best" one in the town my grandparents lived in. I was appalled. Over a hundred elderly on beds, naked, in pain, in one big round room. The elderly are treated like cattle. The nakedness was abuse. What a sad way to end a life. America is a very sick and sickening place. American society will not dictate the time of day to me. I will fight, fight, fight, fight, fight, any dying of the light. I decide.
88
“Living” at all costs? No thanks.
86
This article is as good an argument as I have heard for assisted suicide.
167
Sorry, I couldn’t disagree more. Nursing homes are a complete sham, and I would much rather have my mother(or me) wander off and get eaten by an alligator than subjected to the assembly line “care” at one of them.
73
I want to document the conditions when I should be helped to die. In simple terms, killed. A few states have laws which require me to state the request when I am likely to die in six months. What if I cannot speak or write? I will have to suffer and my children have to endure it with me. Reality not fiction. Happened to my mother. Don’t let it happen to me. Let’s sell the USA to Belgium, so we can die without suffering.
68
We have assisted suicide in Oregon and I'll avail myself of it when and if the need arises. Hopefully it won't and I'll live out my days listening to the Grateful Dead...ironic?
54
Why sustain the life of a demented person?
"Assisted living?" No
Assisted dying? Yes
I am 77yrs old, so I must plan countermeasures against those who wish to keep my old body pumping long after my brain has scummed.
68
Unrealistic expectations by an American populace that refuses to care for their parents and grandparents. Don’t give me excuses, don’t tell me you don’t have the time, don’t tell me it’s the governments fault or the fault of these apartment complexes advertised as assisted living. Look in the mirror. My plan, suicide when the time is right. And who the heck would place a demented person in an apartment and then sue.
41
There is irony in this online article being peppered with ads for assisted living — maybe we should have Google solve this problem?
32
Assisted living... Assisted living.... Isn't that the place where they pull out all your teeth and replace them with cheap Chinese dentures .... or where you get a hip transplant just when you are about to die from cancer?
... new dentures, new hips ... these are real money-makers; cancer is what they call "the facilitator."
25
My mother has been in residential care for 6 years. From day one, I have had to hire outside help to ensure her medicine was given on time, give her baths, stay with her until she went to sleep. She has dementia and would wander out in the middle of the night. The facility takes no responsibility. They act like a hotel, room and board only.
The extraordinary lengths I have had to go through to protect her in spite of the facility are stunning.
This country really needs to put legislation in place to improve this catastrophe. Of course it won't, regardless of who is in control lobbyists control the legislative agenda. Can you say Fascism?
56
@maryrivka
I'm not convinced that your blueberries and salmon are what prevented you from developing heart disease. More likely it's that you don't have a heart.
33
Yikes. What a depressing essay.
21
For those of us without much money suicide is the only solution lest we wish to burden our loved ones and ravage their nest eggs. At the end there isn't much you can enjoy anymore anyway.
43
I cared for my grandmother and my aunt until their deaths in their nineties, moving them from their own homes to independent living to assisted care. That experience has caused me to tell my adult children that I will NEVER EVER go into assisted care! It was $5000/month to maintain them as vegetables. The waste of money was immoral! My grandmother spent as much in a year, sitting in front of a TV drooling, as she paid to put two grandchildren thru college. Ridiculous! Sickening!
89
If all you need is assisted living you are probably okay in your own home with home health. And the dirty secret of most assisted living fancy retirement villages is that there is no real medical care; CNA and Med Aides at best. So you are shelling out a fortune for not very much....
73
"...They put their money into the physical plant. It’s gorgeous,” said Cristina Flores, a former home health care nurse who has a Ph.D. in nursing health policy, lectures in the gerontology program at San Francisco State University and runs three small group homes for the elderly...
Sounds like something a former university admissions officer who has a PhD in psychology might say...
https://www.nytimes.com/2019/06/25/business/college-dorm-uber-amenities.html
Who now is visiting part-time faculty at three small – nonprofit, of course – liberal arts colleges...
PS
Here’s what was actually said:
“…It was crazy to see what was going to beat the last new thing,” said…a senior vice president and chief learning officer at Campus Advantage, which manages about 70 off-campus student housing communities around the country. “You were just asking, what’s next?”…
9
Do you remember how Edward g Robinson’s character in Soylent Green “went home”? That’s how I want to go!
16
Maybe there are better places than America to grow old.
65
The entire geriatric and disabled care system in this country is an utter disgrace. People get shuttled into it via algorithm and the type of insurance they have.
As a nurse, I constantly see the neglect that nursing homes inflict on their charges. Macerated buttocks from urinary and rectal incontinence. Nails grown to lengths you wouldn't believe. Fungal infections in skin folds. I shan't go on.
Euthanasia - to me at this point - for all is a higher priority than medical insurance for all.
80
I deserve the right to die to spare myself such miseries. I will die and leave the money to my kids instead of shovelling it to these hope merchants
35
HAHAHA! I keep seeing talk of utilizing "immigrants ". Correction: illegal aliens. Paid now the new minimum wages depending upon geography. How is that something you can possibly condone? Those people are not property trained or qualified. A most certain lawsuit waiting to happen!
9
Buddha warned us aginst desease, old age and death. 2500 years ago. Now profit seekers tell us we can beat all three !!!!! Hail Capitalism !!!!!
20
I hope there is a suicide pill when I decide I can no longer take care of myself.
40
This is an excellent article and beneficial to elders and persons with loved ones facing physical/mental health declines associated with aging.
My undergrad degree specialty was in Gerontolgy and I've worked professionally as a geriatric counselor, consultant, and educator. During the last 5 years of my parent's lives as they sunk into Alzheimers, diabetes, severe arthritis and mobility issues, my background allowed me to strategically put metaphoric 'pillows' under them to help cushion their increasing metaphoric AND literal falls that come with debility & advanced age. Creating a successful 'at home' assisted living is really an excellent option.
Note: Even with excellent 24 hour care and careful fall prevention methods, elders with health issues do commonly fall with increasing frequency with advanced age.
Also, a majority of elders over 80 have impaired mobility and incontinence is a common factor to be contended with.
Sadly, I've experienced entering a classy, upscale assisted living center and found a 90 yr. old friend in great need who had developed early stage dementia and diabetic related blindness. She was sitting alone in a chaotic, unkept room in her own excrement when I arrived.
At the 'sunset' time of life the prescription for having the best 'quality' of life is to prioritize bringing in close people who #1 truly care, #2 know how to help with real, physical needs #3 who are reliable, trustworthy and will 'be there' consistently.
47
We need the right to die.
51
In a country where it's an acceptable price of "freedom" to keep getting children murdered for being in a classroom, as long as guns are freely bought and sold, who cares about taking care of old people, unless there is a corporate profit paradigm involved? Get real, it's no use breathing unless some corporation is sucking you or your loved ones dry. Wake up and smell the fascism, 'Murica. You asked for it, you got it.
46
"All you need is a tiny bit of help." No, all you need is a gigantic wad of money. My friend's mother sold her house for $700,000, but every penny was eaten up in assisted living. Elder care - let's call it elder exploitation - is the biggest looter in the USA.
120
My three siblings and I could never convince my parents to move close to one of us, the closest living 3 hrs from them. My dad suffered with severe arthritis and Parkinson's for 6 yrs in a nursing home, then a year after he died my mother, at 90, broke her hip and moved to A/L for 8 yrs. The first few weren't bad, as she was less lonely and required minimal help. Then the dementia set in, things slowly went downhill, and her last year in the memory was pure hell. Her last three years we heard a lot of "I don't know why I'm still here!" (here, meaning alive) amidst her generally cheery disposition.
After seeing both grandmothers and then my parents suffer in facilities like that, we all agree that for us it will be euthanasia--legal or not! The money not spent on our care will go to help the younger generations, as it should be.
41
I have had 2 friends (both singe males with no family) commit suicide rather than enter what we know as nursing homes no matter what cutsie names they are given. With all the ageism, abuse and hate directed at seniors just because we are seniors, why would anyone subject themselves to the most undertrained, lowest paid employees in the country?
All I have to say to those who suddenly hate me because I was lucky enough to make it thru my younger years:
YOU are aging, too!......and by the way: don't call me "sweetie!" It is up there with the insincere version of the Southern "bless your heart."
68
"As Mr. Gamba told me, “There’s going to be lots and lots of old people dying left and right with nobody attending to them.”
I like the Eskimos practice of leaving the useless elderly out on an ice flow.
Then there's always suicide as a much better alternative to being wharehoused -drooling all day like steers in a pen.
Death is nothing to fear - just swallow your gun or pills - it's painless and you get a much deserved rest.
And give your children unwasted assets and peace.
21
Scary article, as I'm already old enough to be bombarded with offers for assisted living insurance.
It was a bit ironic that the ad placed by Google on the top of this page was for a "Senior Community with Assisted Living" facility in San Francisco, Obviously keyed off the topic, and geolocated by my IP address — but they couldn't detect the tone of the article, just the words. Not so smart AI, Google.
30
America is not a country. America is a continent comprised of many diverse countries.
18
I'm not sure why the writer adopted a 'bash Assisted Living' angle. They are expanding because of demand and they are in demand because people, by and large, appreciate them. Free market at its best. They're not perfect. Realize the elderly also die untimely deaths at home and in Nursing Homes.
Tightly regulating Assisted Living Facilities might be the worst idea I've heard in a while- they are by and large a success so let's add a blanket of suffocating bureaucracy(?)-
The author just as easily could have shared horror stories of elderly care in Japan- from the NY Times...(https://www.nytimes.com/2017/11/30/world/asia/japan-lonely-deaths-the-end.html)
Try being appreciative and stop believing the world owes you an ideal and that the government will deliver on that ideal. Grow up.
27
“There’s going to be lots and lots of old people dying left and right with nobody attending to them.”
I hope I'll be one of them. I sincerely hope there will not be an army of do-gooders trying to drag me trough a helpless, boring existence with dementia taking over my mind. The world is already way, way, WAAAAAYYYY overpopulated to cling to old, sick people and force a bad quality of life on us.
44
Psychologist and gerontologist here. The aging baby boom cohort is fast becoming a “silver tsunami”. Beyond exposing some of the dirty little secrets of the aging services industry, this article asks all readers to look in the mirror. We need to consider how we got into this predicament, and hold our politicians accountable. Their failure to pass firearms legislation is an egregious example of incompetence. But, as this article suggests, the failure of elected "leaders" to address the needs of our aging society may have ripple effects that are even more tragic and widespread. ##Vote2020
85
I'm scared and saddened by the fact that even physician commenters ask us to consider killing ourselves the solution to the burden that our old age or sudden illness will cause to others. Dogs are treated more humanely than the elderly. Yes, we will sicken, decline, and die. But we can also plan and pay forward through our tax dollars for this reality. We could receive tax rebates to retro fit houses and additionally benefit the economy. We could subsidize visiting nurses and home health care. We could provide free transportation for the elderly as is done for instance in Newton, Mass. (Uber! Lyft!) My mother couldn't stay in her home in Oak Park, MI., after she could no longer drive. We can provide subsidized neighborhood nursing care vs. expensive assisted living non-care. The Japanese model also makes sense. In short, education and health care should be regulated and public and paid for by everyone in the country. The opposite of killing yourself with a bottle of pills in anguish and loneliness. I know the Democrats will do better than Republicans scofflaws on taking care of the elderly. Vote for better in 2020!
84
My father moved back to Japan at age 85 to live in an assisted living facility here after living in the US for much of his adult life. His facility was in Gifu, a city just outside Nagoya, and was considered to be one of the high-end facilities in the area. When we looked for places around the Bay Area and Seattle, prices were beyond his means—250,000 to move in and 8,000 per month without any care at a facility in Oakland, for example. In Japan, he paid 8,000 to move in and 2,000 per month. Once he received a higher classification for care, and moved into a facility with more care, the monthly cost actually went down.
The Japanese system isn’t perfect. It’s based on the premise that a lot of the care is provided by the family until someone receives a higher classification for care, but as with healthcare, the entire thing is much more affordable. A relative with advanced dementia lives in a public care facility for under 1,000 a month.
I think the problem is the entire healthcare system. The US has made the whole thing about making a buck, not about maintaining health and caring for the sick. We need to overhaul the entire US healthcare system.
160
Assisted living isn’t an appropriate level of care for someone with dementia who falls and who wanders! It’s all about APPROPRIATE LEVEL OF CARE. Whose fault is it that assisted living facilities “fail” people whose level of care is way out of their league? I really don’t get this article. Maybe instead of bashing AL it’d make sense to focus on level of care standards being formalized for places that want to call themselves assisted living facilities, so that everyone is more clear about what this means . . .
54
That’s one of the most frustrating things there is; yeah we have the right to go up the stairs with his walker and die doing so but monitoring my own mother is sometimes impossible and really frustrating… Sometimes,You can’t get the horse to drink the water once you lead it to it!
9
I've worked in nursing homes, hospitals for a brief time, and state run medical facilities first as a nurses aide and then as an RN and a Nurse Administrator, and finally as an investigator of abuse and neglect.
The state facility provided the most comprehensive care and oversight. They were also more responsive to complaints.
However, when incompetence and outright abusive behavior was discovered union rules and timid management often translated into reassignments for infractions that should have been addressed through dismissal or, frankly, criminal charges.
I am now approaching what might laughingly be described as my golden years.
Over the years I have come to the conclusion that someone like Jack Kevorkian may be a golden opportunity in my glittering, gilded, fools gold senescence.
26
Reading this, I suspect most states in the U.S. have the same problem we have come to recognize in Quebec. While we have in place extensive regulations concerning the facilities...sprinklers, alarm buttons bedside and in bathrooms, emergency lighting in the corridors and so forth, but there is no certification requirements for caregivers and attendants.
This past January, in one of Montréal's most luxurious assisted living facilities, a fire alarm sounded at 4:15 in the morning, Mme Duceppe, the 93 year old mother of a former leader of a prominent political party, made her way toward the exit of her high rise building, even though the alarm had it's origin in an adjacent building. She exited the building into a courtyard between the towers. Hard of hearing, she had not heard or understood the announcement that her building was not being evacuated. Outside, it was -35°C (-31°F). Security cameras (clearly monitored by no one) showed her trying to warm herself at 5:45, at 8:30 she tries to shield herself from the wind, loses her hat and struggles to put it back on, 9:23 she lies down on the snowy ground, 10:11 a slight motion is seen in her legs...11:02 she is immobile, on the ground. The facility insisted someone was monitoring the cameras. At 8:45, someone checked the door she had left through because its alarm was still ringing. The guy closed it.
We are trying to learn the lessons of this one tragedy among too many. "Assisted" living indeed.
44
I question the wisdom of thinking you *have* to keep living after you’ve been diagnosed with dementia or other diseases that leave you unable to care for yourself. What’s the point ? Life has taken your self-esteem and self-respect. You’re just a burden.
My mother has neglected her body for her whole life and now she needs hundreds of thousands of dollars a year in medical care to stay alive. Medicare is paying for it - which means taxpayers like you and I. That’s not a sustainable practice for an aging population. We are going to have to cap the amount we spend on keeping people alive.
52
“The irony of assisted living is, it’s great if you don’t need too much assistance. If you don’t, the social life, the spalike facilities, the myriad activities and the extensive menus might make assisted living the right choice. But if you have trouble walking or using the bathroom, or have dementia.... assisted living already costs between about $4,800, on average, each month,”
Uh huh…this is an issue ONLY for the upper income - upper middle class & up. $4800 is just the fees to live there - $57600 a year.
Now add on Medicare premiums (Part B & either Part D prescription & a Medigap or an Advantage plan premiums + up $5000-6000 in deductibles/copays.) Health insurance (premiums, deductibles, copays) alone is heading north $8400 -$9800 per year. Now the income needed is $66,700.
Then personal care (hairdresser, clothing, dinner out, Xmas presents for family), so add on another $6000-10000. Now it takes an income of $72,000-76,700
Those costs - $72,000-76,000 are PER PERSON for assisted living - for a couple double it.
The median household of 1 person over 65 lives on $24,000+/- a year
The median household of 2 people over 65 lives on $36,000+/- a year
For over 80 -85% of those over-65, assisted living isn’t even a possibility – they CAN NOT AFFORD & Medicare does not pay
Even if they owned a home mortgage-free & sold it, in the normal (non-NYC) US, the house proceeds might - maybe- cover the costs for 2-3 years for a couple -then they are on the street.
25
@AnnS: The average assets of a 70 yo is $225,000.
6
Ah! The weakest link in US healthcare - low tech, high touch encounters. There is a real need and automation is not the answer. Who will fill these jobs? Restricting immigrants to Ph.Ds and scientists will only worsen the problem. Time for some creative thinking.
28
MY idea of assisted living is to stay active, ask for help when I need it, and rely upon my family when the time comes. I don't expect to live forever, but you my friend are a terrible cynic. If some older people can afford such luxury, let them have it, but I believe this country has a responsibility to take care of those in need, old, young, rich, poor, black, white--everyone of us. Time for us all to take stock of our selfish ways, knowing that we, too, will get old and infirm. Do unto others as you would have them do unto you. What goes around, comes around.
20
What's more, those "immigrants" Trump talks about, that he's trying to load up on busses and send back to wherever? They are the kind caregivers of your parents. They come from countries where caring for your parents is an honor. Cut off immigration and your parents will end up living in an assisted living facility that looks more like solitary confinement in an executive prison.
65
What a ruthless, unforgiving bunch we are becoming. After a lifetime of clawing and scratching and stumbling along the merciless gauntlet of existence, when it comes time to naturally fall sick and die (at least I heard that's the usual way one gets outta here, silly me), we are even held to blame for that.
I am not arguing that smoking and drinking and saying 'yes' to dessert is the one true path to a longer, healthier life, but I darn well will argue with every fiber of my being that it is no one else's business, no matter how they may try to contort my personal choices into their ultimate costs. Besides, what fun is life if one has to give up all of the things that make life worth living in the first place?
On my deathbed, I will place by my bedside a photo of a younger me, healthy, happy and in the pink. Let us imagine the healthy scold doing likewise on theirs. And if there's a dimes worth of difference between either of us or if the comparison is entirely free of irony, may I suggest you never go into healthcare.
But I know that the world is full of judgement, especially in healthcare. In which case, may I at least advocate for assisted-suicide laws in every state---true assisted-suicide, not the kind where the patient only thinks they have control, like in California, but when the time comes instead finds that the doctor doesn't think they're "sick enough" or in enough pain.
If you're going to judge me, at least give me a way out.
5
that describes only 1/3 of the people in assisted living. usually, places for old frail people do not advertise themselves as such, because old people do not think of themselves as old, and still see themselves as the young people they remember in the mirror. so you really cannot advertise the truth here completely in order to attract this population to a service that they need and want, but need a little bit of false advertising in order not to be driven away. if you continue being independent at something, you can continue for years and years in your 80s and 90s even, be it getting out of the car yourself or moving in/out of your wheelchair yourself. but as soon as you take a break and let someone help you and do it for you, you regress and it will take months to regain that ability. good luck! old age can be fun in the right company! and you can conquer the challenges, they are not as bad as fifth grade embarrassment or the SATs!
21
What a ruthless, unforgiving bunch we are becoming. After a lifetime of clawing and scratching and stumbling along the merciless gauntlet of existence, when it comes time to naturally fall sick and die (at least I heard that's the usual way one gets outta here, silly me), we are even held to blame for that.
I am not arguing that smoking and drinking and saying 'yes' to dessert is the one true path to a longer, healthier life, but I darn well will argue with every fiber of my being that it is no one else's business, no matter how they may try to contort my personal choices into their ultimate costs. Besides, what fun is life if one has to give up all of the things that make life worth living in the first place?
On my deathbed, I will place by my bedside a photo of a younger me, healthy, happy and in the pink. Let us imagine the healthy scold doing likewise on theirs. And if there's a dimes worth of difference between either of us or if the comparison is entirely free of irony, may I suggest you never go into healthcare.
But I know that the world is full of judgement, especially in healthcare. In which case, may I at least advocate for assisted-suicide laws in every state---true assisted-suicide, not the kind where the patient only thinks they have control, like in California, but when the time comes instead finds that the doctor doesn't think they're in enough misery or pain.
If I'm going to be condemned by caregivers for all my sins, at least give me a way out.
26
“There’s going to be lots and lots of old people dying left and right with nobody attending to them.” Hasn’t that always been the case? Old people dying without anyone attending.
12
Remember the dystopian future of Soylent Green so long ago? Time to think about the world we created with yesterday's solutions.
7
Statistics show that the aging “boomer” population did not save enough for their retirement. The idea of “assisted living” to many of them is a financial pipe dream.
Many adults in this segment have seen first hand that no one will care for their loved ones in the manner that they would. And these institutions employ staff that is overworked and underpaid. Which leads to this study:
https://www.npr.org/2019/07/27/745017374/isolated-and-struggling-many-seniors-are-turning-to-suicide
Suicide rates among this age group are rising faster than previous generations. Not everyone aspires to elder care in their old age.
16
No way we will solve this problem.
I gave up hope long ago.
Good bye
Good luck
13
Read Atul Gawande's book, "Being Mortal".
9
After watching my husband succumb to brain cancer and my mother die of Alzheimer’s I have reached the conclusion that I will leave my life while I am still in control of my faculties. An important discussion regarding assisted suicide for older adults needs to happen so people such as myself are not left to violent means of self destruction.
50
A scam. Get your loved ones care in their own home and you won't be ripped off by "assisted care." You and yours can write your own definition of what "assistance" means.
My mother just turned 97. She lives in her own apartment and owns a car with support from my two sisters. She strives for independence in every way she can. She is sharp, organized, and motivated. If your loved one doesn't have these traits they will end up warehoused in a nursing home unless you hire in home "nursing" care instead of "assistance."
16
Three isn't an easy answer. My mother lives in a pretty nice memory care unit. But she still often has soiled sheets,no toilet paper and terrible rashes in her skin folds. the residents sit and watch tv all day. Taking care of her myself would mean no job and misery for me. I don't think in home care would cut it, it's expensive and risky, for abuse and embezzlement. What are we going to do as more and more people are in this situation? I would rather be dead.
30
This article triggered PTSD for me. I had the same fantasy of assisted living homes for my dad. He got to a point with failing health, dialysis treatments, monitored diet and inability to walk where my mother and I could no longer offer the care he needed. We put him into an assisted living home in NYC. It costed $6k a month in 2016, the facility was a nightmare. Long story short we tried to get my father into a Veteran's home but sadly the wait list was years. After 9 months my father passed away from his illnesses, for the next year the facility kept sending me bills despite the fact that my dad's Social Security benefits were signed over to the home and any other fees were paid by Medicare.
This year my father's best friend called asking me help him find an assisted facility in NYC. Having no family of his own, I helped, pulling out my old research. I was shocked to see many of the private facilities are now $150k to $200k a year. The costs on middle range assisted homes have jumped to $8-$15k a month and the reviews of assisted facilities for people who aren't wealthy are terrible.
Looking at the direction of this country, my dream is to move to Japan or Denmark when I retire. Correct me if I'm wrong, but I don't see anything in America changing for the better. This country sees its people as disposable cogs to make profits. When we have paid a lifetime of taxes, we better die fast. The only people who can afford to grow old are the wealthy.
61
My husband and I cared for both of our fathers, each for about three years. I twas not until the last 9 months of their lives that we had to place them in assisted living.
While assisted living did allow my husband and I to keep our careers, not a day went by without a visit (or two) from one of us. These check-ins are vital to alert the staff to any health changes AND they serve to keep the staff on their toes regarding care and keeping of your loved one. If there isn't anyone checking on you... well... IMHO care may be compromised. Sigh.
32
I see no answers in this article. You state a problem, inadequate care at assisted living facilities, but offer no solutions. People don’t want to be in nursing homes. They want some semblance of dignity. They are not children and your comparison is offensive. Perhaps collectives would be an alternative. A bunch of old people with help but given the respect that they have earned and that they need. We throw away the old and unwanted in this country. Shame on us all.
499
The writer does point to Japan as a possible model.
66
@Downspout I thought the writer was also calling for
closer regulations in the assisted-living facilities.
46
@Downspout The author does cite an excellent solution, the mandatory system in Japan. It sounds like a good model. "Perhaps the United States can learn from Japan, which is a few decades ahead of us in grappling with how to care for its rapidly aging population. Japan created a national long-term-care insurance system that is mandatory. It is partly funded by the government but also by payroll taxes and additional insurance premiums charged to people age 40 and older. It is a family-based, community-based system, where the most popular services are heavily subsidized home help and adult day care. Japanese families still use nursing homes and assisted living facilities, but the emphasis is on supporting the elder population at home."
68
Yes,
I’ve had my mom in assisted living for the last 7 years due to numerous issues. Essentially they drug her into a compliant state where she doesn’t know who I am. Or that her relatives whom have died are not coming to visit. Her jewelry has been stolen. I get calls to take her to doctor appointments.
Where is the assitance? It’s a racket. What do they actually do?
25
This article is so spot on. It was a 3-year nightmare for my parent who ended up in AL in Northeast Ohio. The last 2 years were spent in “memory care” unit. He really needed a nursing home because of all his many physical and mental issues. Each time I asked management, they’d say: “NOOO. He doesn’t need a nursing home.” Only half the rooms in that memory care were occupied. So, of course they don’t want that person to leave.
I regret not having taken him out of there and moving him to a nursing home. He wouldn’t have suffered as much as he did in AL. The P-R people who sell these places give the rosiest views of what their care is like. It’s a big lie, for the most part.
About a year after my parent passed away in 2016, the name of the facility changed, as I’d see as I drove by. It had been run by one of the big publicly traded chains. Apparently, it no longer is. My gut tells me someone had the gumption to sue the big chain. At least I hope that was the case.
14
I'm 72, active, healthy, physically in good shape and engaged with family and friends and it's a scary thought to grow old :-)... but the alternative isn't attractive. Even at my young-old age, I find I'm pushed aside and ignored more than when I was younger.
My mother was 81 when she passed away from COPD, fortunately at home in her sleep. Mom didn't have dementia and was able to manage daily care in her own home, even after breaking her hip and losing her balance, though it was a hardship and struggle. Although, I deeply loved her and miss her healthy-self every day, during her last years I found myself becoming tired and resentful because it was one crisis after another.
I still feel guilty about my feelings, even though I did everything I could possible do to make things better and protect her. To be honest, it was a relief when she died.
I don't want my kids feeling that way about me. My mother didn't want me to feel that way about her. She had the same feelings about her mother and my mother wished she had not become a burden.
Most people can self-manage with some help in their own homes, if they don't have Alzheimers. My husband and I have long-term care insurance that will provide home care or institutional care if we need it. Hopefully, it will be a waste of money but if the time comes, it will reduce some of the burden on our daughter. I don't worry about our son, he'll go about his own life and pretend everything is OK.
33
As a former New Yorker now living in Helsinki, Finland, for the last few years. I will soon be 94 and I am grateful to live alone, do my own shopping, cooking, and baking, and when I have health problems, (which, so far has been rare) the hospital services are easy to access and very affordable. The people are pleasant and sociable and quite helpful. My memory has been not terribly great most of my life so I don’t feel much change as I approach adulthood. My last times in New York would have assured me of a comfortable cardboard box under the Brooklyn Bridge but here I can manage a bit better. Unfortunately the local politics are not quite as entertaining as now in action in the USA but the view from a safe distance is rather comforting.
84
“We need to let go of the ideal of being self-sufficient until death.” Also important: we need to let go of the practice of keeping people alive far longer than they should be.
36
I tell my son to let me die. I've had a good life. I fully expect the end to be horrible, for me to be wandering around demented and alone. Being eaten by an alligator actually sounds good to me. That is how human life is. let's just accept it. I tell him to please let me die the natural but horrible death we were made to die. Don't coddle me or protect me from the alligator.
490
@woman The only thing I would add is "Please minimize the pain, boredom and fear, if any of the final year/month/week/day. And do not feel guilty and live the rest of your life with "I should have" and "If I had." And don't let decisions about my care come between you and your brother or spouse and if I am sound of mind, honor my wishes when possible. And don't spend your last dollar on me. And don't accept the whole burden yourself. Tkae care of yourself and know that it takes a village to care for the weak, disabled, sick and dying. The nuclear family cannot do it alone."
128
@woman
There's no reason to assume the worst. Why not assume the best? It's more likely to come true that way. One of my acquaintances some years ago (much older than I) passed away suddenly sitting on her porch with guests. What a wonderful way to go, though disconcerting for her husband and friends, much better than going through chemo that she was facing.
52
My wife an I in our late 70's have been through the passing of our parents and many of our neighbors and friends. Those who did not experience dementia actually died very well. They were conscious of what was happening to them, but maintained their personalities until the very end. It is our profound hope that we will die that way. Dementia is our worst nightmare. It happened to my wife's mother, but fortunately she didn't live very long in that state. BTW her final care was very good, but cost over $10,000/month. We have several friends who have loved ones who have suffered dementia over periods of years. It is extremely difficult no matter what the circumstances. It just one more of the many things our society needs to deal with that requires more compassion and understanding that our current government is capable of .
24
Ms Anand is incredibly naive. The entire industry of senior care offers numerous alternatives. Conscientious family members and we ourselves need to carefully explore those alternatives to find the right fit. No doubt about it: These options are expensive. But that fact makes doing due diligence prior to purchase all the more important. Assisted living isn't the same as independent living. Neither of these options is the same as nursing home care. And then there's memory care. Tough decisions need to be made on careful research.
10
Assisted Living is the first phase, the following phase is "skilled" nursing care followed by a hospital admission or hospice, in the downhill spiral to death.
Americans avoid dialogues that truthfully address the problem with aging and finally death. So, we spend lots of monies either personal or federal toward end of life care, never changing the outcome. Worse is the elderly themselves, they lose everything in this sterile environment. But as with American healthcare, there is lots of money to be made, actual humane care is not one of them.
The best solution would be to stay in one's home with hired aides to assist as needed. Realistically, this option is not viable for most Americans.
20
My mother lived in an assisted living facility for a year after my father died, and it was the best thing for her. She was 94, lonely without her husband, and she had dementia, so she couldn't remember how to use the microwave or do laundry. She really enjoyed the socializing and, since she was a pianist, enjoyed having an audience at the facility. Unfortunately, she eventually fell because she had pneumonia, and after she recovered, couldn't walk without a walker. That meant she couldn't stay in independent living, and had to move to a nursing home. She really enjoyed her time in the "apartment" as she called it, and I just wish it could have been longer. Not all falls can be blamed on a lack of supervision. People in their 90s are frail and exposed no matter what you do. My father fell at home at the age of 94 and broke his hip, but until that time he and my mother had been completely independent.
20
It is more than just (which is significant) the lack of care that one gets, it also has to do with the quality of life. Has anyone been to a nursing home recently? It is not a pleasant experience to see people who once had dignity now functioning as barely people.
Please spare me.
21
I’m not sure what this author sees as an alternative to this type of home for an appropriately placed person. Certainly nursing homes are in as tough a spot as the assisted living facilities, because nationwide there is a shortage of workers. The situation is made worse for political realities now. Ideally, there would be facilities that can transition people into greater levels of care as their conditions become more involved. But in every level of care there is a shortage of CNAs who do the hands on care, and of nurses, who dispense meds, etc. Let’s get real and not blame the ALs. For many people they are a reasonable alternative to fully independent living.
7
Ms. Anand’s story makes a good tsk-tsk headline. While she and most whom she quotes are correct that some problems exist, including some people’s expectations of assisted living. But to jump from existence of problems to “more regulation is needed” is off.
The point of assisted living, from its beginning to today, has always been that it is a consumer choice. It requires as much attention as buying a home, though attending to different details. And one doesn’t buy a home and stop paying attention to how it functions.
My own experience with assisted living in two locations (same national company) for both my husband’s parents was all positive, from independent status to hospice care that Mama had, to Dad’s later memory care and eventual natural death from irrecoverable stroke.
Neglectful staff during those more-dependent years? The opposite! Okay to assume all was going well? Of course not! Frequent — ultimately daily — contact with Dad and the staff was necessary but the most serious problem was our having to insist they always contact us for incidents like minor falls, not automatically call in EMTs because hospital visits totally confused him for days afterwards.
Fix the public’s expectations, yes. Educate the consumers.
9
Facility care varies greatly. My mother-in-law is in a beautiful assisted-living facility. It's like a nice hotel. Wide, carpeted hallways. Private rooms. Delicious food. Even a grand piano in the lobby. Her long-term care policy covers the full cost of the bill every month. This facility does NOT take Medicaid and that makes all the difference.
8
The cornerstones to improving the aging process is: 1. Universal health care, including dental, is essential. Recent research suggests mouth bacteria may be related to a host of old age health conditions, including Alzheimer’s. 2. Provide more education along the way about the consequences of choices made when young and how that will impact aging. Smoking young men, for example, should know how likely ED by age 70 is; ditto for those with weight issues and diabetes, etc. 3. Curb the medical pharmaceutical health industry complex - they are prone to strip every asset from seniors via too many tests, consultants, procedures, prescriptions. 4. Give seniors, starting at age 70, information and choices about treatments and drugs that extend life whose main result is living too long and end up with dementia, etc. My 101 yr old grandma said “God must not want me” but she would have been “wanted” sooner if she stopped taking 10 different drugs each day. 5. Give seniors the right to choose a painless, dignified suicide at the age we feel is right for our situation, including looking into the future when we may lack the mental competency to do so. I’’d rather not choose a method of suicide that leaves my kids to find me, assuming I have the wherewithal to even do it. States that have Death with Dignity laws require mental competence, less than 6 months to live, and ability to self administer. Few of those in this article would qualify.
27
@Bruce 1253 When an elderly person reaches a stage where they feel they have lived long enough and are now dealing with multiply health problems and are ready to die, they can begin VSED at their home, which is legal in most states. The voluntary stopping of eating and drinking can be a mildly difficult process but as long as the individual has palliative care to help them through the process, death comes gently and fairly quickly. And since in most states this is not considered suicide, these individuals can have their family with them. If they have a terminal illness, they can access medical aid in dying in those states where it is legal. Old age rational "suicide" has been around forever but our culture and various religions forbid us from seeing the absolute reasonableness of this path of deliverance.
15
What you overlook in this article is the significant trend toward Assisted Living and Memory Care communities that are household-sized, rather than the hotel-style facilities you describe here. The Eden Alternative and the Green House movement have led the trend toward household-sized communities with higher staffing ratios. My own company is opening one that will have just 15 beds, avoiding much of the "move them in and let them make their own choices and face the consequences" mentality you rightly are concerned about. It is a refreshing alternative that corrects many of the neglectful models that have had real human costs in the senior living industry.
13
What is needed is clearer definitions of, and regulations of, the different levels of care provided in "assisted living" facilities. The best ones will have a gradation from "independent living" through "assisted living" through "memory care" and "skilled nursing," and will provide clear explanations to families of what exactly is covered at each level.
And they should all be nonprofit organizations, not out to make money for private owners or shareholders.
At the moment, let the buyer beware.
19
So many people living into their 90’s is a relatively new situation. There is no easy or comprehensive solution because the variability is so great. For many older adults, assisted living is just right fo them. For some it is miserable. Staying at home is dangerous without 24 hour supervision, which is expensive and a real challenge to arrange. Some facilities offer different levels of care, including memory care, as people age and need more close monitoring and supervision. Anyone who stumbles on the “right” way to age and is able to manage to do it is lucky!
3
@Jeana
There will be pain and sorrow. For some reason this continually surprises people. There is no way around it, and trying to find ways around it (like warehousing people for years) only causes greater trouble.
12
The lawsuits against the AL facilities mentioned in the article
only illustrate the America's inflated faith that some for-profit institution is always better at caring for a declining elder than staying at home with family.
Yes, the outrage over the deaths of wandering demented elders needs to prompt technological solutions, but for now the lawsuits will only increase the cost of elder care, the cherry picking of rich, healthier customers, and the difficulty for families in need in finding help.
8
My mother died of complications from leukemia at 63. My father died at 86 of Alzheimer's after 2 years in a nursing home paid for by Medicaid. (We had to hire an agency to get us through that application process, a whole other story.). Although Dad was a professional, he had no savings (his and second wife's fault) beyond a pension and Social Security. In the nursing home he got excellent care, primarily via immigrants of color who worked there. I shudder to think how little they probably were paid but we were so grateful for their care and kindness. (But hey, let's build a wall to keep them out and see how many Americans step up.)
In the end, my father's death was a blessing as he had not been "living" for a long time. Couldn't speak, couldn't swallow etc.
As I'm now nearly 65, my husband and I do have very expensive long term care insurance. We have an updated will and explicit living wills; our children are well aware of our wishes. I've worked in health care for years and realize there's only so much we can control but we're trying to control for what we can.
We have friends with parents 90 and above who are living that particular nightmare. Many 60 somethings seem to be in denial that yes, your parents are going to die. News flash: WE ALL ARE. Face it, make a plan and then LIVE every day that you can. Like many here, I do believe I should have the option to legally end my life if faced with an incurable terminal illness.
45
When we looked into assisted living for my mom- we found a sterile, super expensive, super small apartment where they said they wouldn't even help mom with her medication (unless we paid extra to do that- because that's a nursing home thing.) Which left the question - what exactly were we paying for?
Remote monitoring, and in-home care for mom was the answer for us. And it allowed her to retain the ultimate independence-staying in her own home. When I'm old, I expect a mix of apps, robotics, autonomous vehicles, remote monitoring, and human assistance will get me through. And this assisted living scam will be a thing of the past.
26
I think this article is creating a more negative picture of "assisted living" than is warranted. Certainly, this is a very broad brush and therefore can be misleading. Assisted Living facilities are not the same as Nursing Homes and not the same as Continuing Care Retirement communities. We live in a good CCRC, not terribly expensive, but not cheap, and unfortunately not affordable to those who don't have pretty good retirement incomes. Ours is a church affiliated community, a non profit. Most folks come in initially and live in independent cottages or apartments. I live in one with a husband who is severely disabled from a stroke. This place has enabled him to be more independent and to engage with more people than our previous home in an exurb in a lovely location further north of us in NH. I do at times, to be able to go places he doesn't wish to go, especially overnight, hire people to come check on him and help him out, including doing dog walking. On the other hand he/we can get most meals within 100 feet or so of the door of our apartment. He attends some programs here. I have met many interesting people and have greatly expanded my activities both in our CCRC and in the city we now live in. Although this is not a luxurious place, one of its undeniable benefits is that there are a variety of level of care and the safety, security, and attention to residents are all high priorities and from everything I hear, well done.
15
You said in your article what I have been trying to say for the last 17 years after my experience caring for my elderly parents who are now deceased. Things have not changed since my last parent died in 2008. Thank you for shedding light on this issue as most people think they will not face assisted living or nursing care as somehow they will know when they will die and will do something about it before they lose their independence. Unfortunately, even places that charge higher prices than average and tout their exceptional care provide anything but that care. We need to face facts and do something quickly as the boomer generation will soon arrive at this crossroad in droves.
12
A small point, but is it really necessary for people investing in long term care facilities to make 15% annual returns? Have we reached the point where every Alzheimer's patient is a profit center?
40
"We need to let go of the ideal of being self-sufficient until death." Well, we probably need to let go of the idea that we are ever self-sufficient, but we also need to let go of the idea that death is always to be avoided. My friends and I talk about taking our own lives rather than live with immobility, much less dementia. I don't know if we will kill ourselves (we might not be that self-sufficient), but most of us lost parents whose last years were awful and we vowed to ourselves that we wouldn't do that to our families.
25
I will turn 82 next month and am currently living independently--in fact I am spending a lot of my savings on travel around the world (103 countries and counting!) However, when my late husband showed signs of dementia we moved to an "independent living" facility, and he died of a major stroke 15 months later....our advanced directives ruled out the gastric feeding tube that might have kept him alive--but unable to walk or even read and watch TV as his central vision was damaged by the stroke. I only hope I am so lucky! My daughter, a 57 year old RN, has now quit her job to help care for her father, my divorced and never remarried first husband. His resources should last another 5 years. I do have 2 LTC policies, which I use to justify my spending on travel...also my monthly income is My son has his own family and wants help on his 2 daughters' college educations--plus his wife has a lot of mobility problems due to hip dysplasia. I left the independent living facility for a cheaper but larger apartment that caters to retirees but does not restrict tenancy by age. I have one gene for late onset Alzheimer's so I feel sure I will need memory care if I live long enough. Right now, except for microcolitis which is under control, I am fully mobile and reasonably alert mentally. And setting off for Easter Island and the Atacama desert of Chile at the end of September!
22
My 83 year old father took his own life after having a stroke. He dreaded the American way of dying more than dying itself. I highly recommend the book 'Being Mortal' by Atul Gawande. It inspired great conversations between me and my mother about her end of life wishes, and the dying process itself. We all want to age with dignity. I agree with the author that we need a complete systemic overhaul. What's happening right now is so horrific that death is preferable to some.
34
This article is a bit misleading. I work in assisted living, had my spouse in a nursing home, and have a 95 year old mother living in her own home albeit with round the clock supervision. There is a difference between 'senior living' and 'assisted living'. The former may have meals, housekeeping service, etc., and are minimally regulated. Assisted living will have this plus personal care, medicine and other monitoring, and various monitoring and security for dementia in its earlier stages. Assisted living is regulated on state and federal levels, though with standards that are less rigorous than nursing homes (skilled care facilities).
As with any system, there are better and worse suppliers of services. You have to do your homework, ask questions and visit the facility before and after your loved one enters. No facility can prevent falls or other mishaps short of strapping a resident down (a serious forbidden action almost universally). Even my mother has fallen, though thankfully with little harm.
Financially, any care is very costly to provide and is not covered under social security. Medicaid covers the poor, but many facilities will not accept those residents or severely limit their numbers because the reimbursement rates are so low they don't cover the cost of care. As with many things, low income areas are underserved and facilities of all types have a harder time providing quality service. And, of course, there are always some bad actors.
20
I am 87 and a large old house which I find to difficult to care for. Fortunately I have family members who live with me. Unfortunately, the family members try to help, but sometimes make my life more difficult. They need me more than I need them, but there is a bond that I don't want to break. My case is not isolated.
12
I don't think this article was very well researched or perhaps is looking to target specific states which lack sufficient laws. My own personal experience was in California, which has excellent assisted living facilities with progressive levels of care available. While I don't have current prices I do know that at the time they were not prohibitive.
I am surprised that a professor at Berkeley would write something so obviously misleading.
9
I took care of my mother in her home for the first two years of her struggle with late-stage Alzheimer's Disease, and she spent her last two years in an excellent assisted living facility here in West Michigan. The facility had recently been constructed, and included a beautiful dementia wing that was 100% secure and well-staffed. My mother's last two years were safe and comfortable, and she was well loved during her stay. But I have learned enough from the experience of others to know that my experience was anomalous; that many facilities lack security, care, or both.
The obvious solution is two-fold: first, if we insist on sticking with the for-profit model, then governments absolutely must enact standards for all geriatric care, whether at-home, assisted living, or nursing home care. Anything less is criminal.
But an even better solution would be to allow governments to handle the entire system - with proper oversight, of course. A special tax - perhaps connected to Social Security - could be levied, and any person - not just those with families - would be monitored and cared for in their old age, as appropriate to their abilities.
I'm 67, single & childless. I enjoy driving my own car and living in my own home. But I also know that there will come a time when I will be able to do neither. My only prayer is that when I reach that point, I will be privy to a system a bit more sane than most we see now.
22
I would hate to be a middle-class middle-aged person with kids headed to college and a couple of aging parents. This article, in combination with another regarding college costs, has ruined many a person's day today.
30
Here I am. 57 , unemployed in my fifties, one kid in college, a widowed mom who needs me in her house. The college savings is depleted, the retirement account is depleted, the job market for someone my age is flawed and if we were to pay someone else to care for our mother that would deplete her savings.
10
Why should any of this be a surprise to anyone? First off don't expect that 'putting' a loved one in assisted living takes care of the problem. Dementia is not like getting a cold. It doesn't get better after a couple of weeks. Thinking that a person with dementia can and will get by with minimal supervision and nothing could go wrong is naive. And wishing or expecting assisted living facilities to provide for more supervision than they do is shortsighted. Japan saw the storm clouds on the horizon and implemented a plan to address it. Here in the U.S., we widened the income inequality gap making two parent working households a necessity not a luxury. Then we decided that social programs were a burden on profit making. In America neither adequate health care, decent child care, and certainly not safe elder care are anywhere near the top of America's priority list. We are far too busy making sure our homes are filled with hate and guns and keeping government out of our lives to worry about such things. Because , unlike places like Japan and Europe, we are far superior and far more enlightened. Where else in the world can you die from an inability to afford insulin, go to school with an armoured lined back pack, and get eaten by an alligator in your twilight years?
54
I'm taking care of my aunt in a very expensive nursing home. I visit several times per week. The mistakes that are made from giving sugar -constantly-to a diabetic is unbelievable. Even when I'm in the room, a staff member comes to take her to the bathroom. After 10 minutes I walked in and found her asleep with feces in the bowl. I looked for the staff member I thought was in there with her and I was told she left for the day. I'm moving her soon. "We' pay extra for incontinence and this is the result. Nursing homes are a huge casualty for the elderly no matter what the cost.
19
In Massachusetts, the cost of "assisted" living can range from $6,500 - $9,000+/month. There is a smörgåsbord of "menu" choices that send that number upward. Assisted living is 100% PRIVATE pay - no health insurance or Medicaid coverage. The masses have no way of paying those prices for very long.
Nursing homes are about $14,000+/month. They do take Medicaid but one has to spend down all the resident's assets (spouses as well) - PAID to the nursing home and then one can apply for Medicaid.
The super wealthy, who can afford all this in the first place, have the irrevocable-give-up-all-control trust game (with the 5-year look-back) they can play to protect their assets from the nursing home.
Here's another gem . . . if an assisted living facility has an attached nursing home and sells the concept of "continuous" care . . . the full court press will be applied to get someone who needs some assistance with daily living tasks (but not skilled nursing care) moved to the nursing home. And, guilt is laid on thick - "don't you want the very best care for your parent?" Resist!!
All of this is just another money grab and has nothing to do with care. Expensive facilities do nothing to improve quality of life. Furthermore, the caretakers (many are recent immigrants) are paid dirt and turnover is high. It has become a much diminished model for elderly care at a time of life when folks are against the wall and funds to pay are limited.
25
Wow - I've got lots of thoughts here. And I'm pretty qualified to comment, having helped my parents adjust to a fine independent living facility in Silver Spring, MD, then watched my mother rot in the associated skilled nursing facility, then moved them to a fine assisted living facility in Novato, CA.
The independent living facility was great. It offered pottery classes and language lessons and guest speakers. Dinners were in one of 5 restaurants; it was a great way to age, much better than aging alone in a home in suburbia. The big failure was the the other half of this facility's business model; once your health failed, they offered assisted living and skilled nursing. Looked good on paper, but the higher level of care my mother needed had her sitting in a room all day with a few dozen other failing individuals, all drugged to a stupor. It was like a scene out of Cuckoo's Nest.
I got my parents out to California and put them in assisted living. Yes, the term seems to have no legal meaning, but what was provided was exactly the care that my parents needed. After Dad took a fall, he was hospitalized, then moved to a skilled nursing facility. You don't want to be in a skilled nursing facility, unless you're afraid of dying. Assisted living, on the other hand was a fine resource once independent living was no longer an option: help showering, help eating, help toileting. Yes, your parents will die. But to sue the facility that they managed to get hurt at - that's evil.
18
I have a different solution in mind for myself. Quality of life is much more important to me than quantity. I wish our society was evolved enough to allow older folks who are losing the ability to function independently and/or developing dementia to choose to be euthanized (and provide the service so that their deaths could be as painless and peaceful as possible), but I don't see that coming any time soon. We're too much in denial about old age, and too afraid of death. So I will have to accomplish it on my own, but I will accomplish it. Whether that's 20 years down the road, in my 70s, or 40 years, in my 90s, I don't know, but I have no urge to stick around after my quality of life has so severely declined.
25
“You don’t just allow people to do unsafe things.”
Or so says a professional who earns a living by managing the elderly. Who is she to decide what is “safe” for me? As I age and become increasingly more infirm, am I going to be deterred from pursuing my own interests and goals because “Big Nurse” decides they're unsafe?
I have no interested in being controlled by a busybody. This article helps explain why more than a few of the elderly prefer to live on the streets and under bridges rather than submit to invasive, over-policed “managed care”.
Being forced to cooperate with someone else's opinion of “unsafe” is patronizing and demeaning. I now understand why those who are aging often prefer a quick, relatively painless death rather than dwindling into irrelevance and dementia as their bodies and minds betray them.
17
These are real issues, both for older people and for their families, but the author lost me at the end when she compares older people to "toddlers". This type of language and assumptions make it harder to solve these problems. What we all need are options -- lower-cost options for growing old with as much dignity and independence as possible. As a society, we also need to shift our thinking about growing older. Old people are not children. If someone has the capacity to make decisions for themselves in their old age, they do have a right to make those decisions whether we like them or not.
9
Agreed, however one hurdle is how much the world has changed and how complicated and expensive it is to navigate the last years. Hence, a good many of our parents while of very sound mind don’t have the information or criteria to make the soundest decisions.
3
The problem is far more complex than this article allows. I've been on both sides -- working for a nonprofit, faith-based home for the aged and caring for an aged parent who refused to live with any of her children. Our attitudes have changed from the time when I was growing up, and my grandparents lived with us. I don't think they felt less of themselves for living with children they had raised and sacrificed for, and I am grateful that I had the opportunity to spend time with him. I worked at an amazing nursing home -- all private rooms, no sterile hallways. My aunt spent two of her happiest years living there, after living in her own in an apartment complex after all her friends had moved or died. I had to make an appointment to see her between puffy paints group, bingo and jewelry making. Frankly there was little difference between the condition of the people in the assisted living and the skilled care, but the assisted living people believed they were in better shape and got very angry when they had to move into the other section. They also refused to socialize with the skilled nursing residents so we had two Yiddish clubs and separate programs.
3
My mother, in her late 90s, died earlier this year in a small memory care home after being evicted from her “assisted living” apartment for needing too much assistance. The small group home we found for her provided excellent care during the last months of her life. If you will be taking the lead in the care of an aging parent, take a close look at small group homes with a high caregiver to resident ratio, and spend time talking with the staff (not just the sales rep and management). I also urge you to establish a durable power of attorney and a medical power of attorney before you need them. If your parents live as long as my mother did, prepare to handle their financial and health decisions, or those decisions will be made by people who do not necessarily have your their best interests in mind.
13
We did NOT have this experience with my Dad, who passed away at 94. He had a lovely assisted living apartment and as his level of care increased it was provided , although we paid extra for it. Or should I say he did. They took great care of him, and the staff became our friends. I will say it is not easy work whether you are a nurse or especially a CNA. I do agree with the writer that the boomers will need help with long term care.
9
In a country whose culture is oriented toward youth, only a sea change of thinking about the aged as valid members of society can real change occur. We are not like other countries such as Japan where old age is celebrated.
What is needed in America is legislation and budget allocation to truly aid our seniors, who have been supporters of our society by the virtue of their lives work and paying taxes.
10
Ms. Anand:
Thank you for a very informative and well written article. I know only too well the enormous pressures on children left to take care of their aging parents - I took care of my mother after my father died, for five years. She lived in the tiny house where my husband and two, young children lived also, and her needs were extensive. She was legally blind and on many medications, had trouble getting around, and eventually succumbed to dementia, which made her combative at times. It was then that I knew she had to go to a nursing home facility - that I could no longer handle the 24/7 care she required and take care of my family's needs as well.
It's very sad and as my husband and I face continuing age related declines in our health, I worry, too, about burdens placed on our two sons, now 28 and 35. I don't know the answer and only pray that the Lord will be merciful to us all.
Thank you again for a very informative article.
8
Hats off to the author for taking such good care of her parents even though it meant giving up so much including moving with family to India and giving up her job. Not many can or will do that.
My relatives are in Mumbai, India. As they have aged they have tried to devise ways to live at home with assistance from hired help. Hiring a person full time to take care of someone is cheaper in India than it is in US. But even then, it is for the well-off, not those with average incomes.
The other drawback is that with an employee living in the home full-time one has to give up privacy which is unacceptable for some.
I wonder if living in a group home with 3 or 4 others with a full-time caretaker whose wages are also shared so that it becomes affordable, is an option.
12
@Meenal Mamdani
Excellent recommendation.
2
My parents entered a “stepped” assisted living facility, where increased levels of care are available as one ages, in their 70’s. It was a high quality facility and, while not perfect (of course), overall the facility delivered as promised.
It is important, however, to understand one inherent challenge in the “stepped” facility concept. The residents are fighting hard to maintain as much independence as possible. Thus, as facility staff determines it is time for a resident to move to a facility location that offers more care (and less space, surrounded by less healthy neighbors), most residents resist. Heck, who wouldn’t? Facility staff recommend but it is up to the resident and their family to make the final decision. Very few are able to make this decision in an objective and timely manner. Any child who has had to have the “talk” with a parent about no longer driving understands what I am talking about. The result? A sizable chunk of assisted living residents are living in a different “step” in the facility than is appropriate for their health. In my parents’ case, this manifested itself in a situation where my parents were living in a “step” of middle-level care intensity, and hiring an outside aide to provide services so they did not have to got to the next step. I hope my observation helps others considering this option to be more clear-eyed about what to expect from a “stepped” assisted living facility as their parents continue to age.
15
I knew three separate people in assisted living who died accidental deaths, entirely preventable, due to lack of attention. It was three separate facilities in two states.
This is a common and serious problem. A woman paying $8,000 month for premium care should not choke to death on a hard candy, the call button in her hand, but nobody coming until her body was cold.
13
While America’s brutal “health-care” system could and should be improved, this is a trickier problem.
Sadly enough, even with the sort of compassionate health-care systems other developed nations enjoy, there is no simple answer. Hiring more human helpers to watch over elderly folk, plus paying them a living wage would be a start. We did this for my parents. They nearly died broke.
Japan will be a test case for the rest of the world.
6
I am taking care of my 93+ year old mom, in my home.
I am also very fortunate that she can, for the most part take care of herself, but for how much longer ?
The biggest problem I see with her and others in similar conditions is loneliness - not being socially engaged with other people.
How much bad daytime TV can one watch to "pass the time".
Which is the real problem; Just passing the time !
Being semi-retired myself does afford me time to be around a lot - but it is not enough.
Her quality of life is suffering by the simple lack of engaging with other people.
Of course I have checked into several assisted-living alternatives and from a social point of view, they appear to be an improvement of what I can offer -
However - mom wants no part of this, as she sees this as "the next step" towards the end of her life -
She wants to be at home with me.
Very sadly, America does not only have a problem with Healthcare for the somewhat "healthy" - we are peering into the abyss of long-term-senior care as the Baby-Boomers are rapidly approaching a time in "our" lives, were we need to take a real hard look at what opportunities will be available for us.
Just like too many Americans cannot afford quality healthcare - We are also even less financially prepared to deal with the costs of Senior Care.
14
@Leonard Dornbush You make a very good point. I truly believe that loneliness contributed to my Mother’s early death.
2
You may be able to track down an Adult Day Care program.
4
What about a co-op sort of thing? An assisted living sort of place with, maybe, half of the staff being seniors like myself. I’m 67 years old, retired now for two years from teaching high school, live alone in an apartment, still very active and trying to keep in reasonable shape. I would be willing to move into an assisted living co-op, where part of my fee for living there was helping take care of the place and other seniors who need more assistance than I do. With enough regular paid professional care givers, of course. As attrition occurs (from seniors needing more than what the co-op could provide or from “natural causes” or self-selection), bring in more newly retired people willing to take on the work of the seniors getting to the point where their ability to help others has diminished.
Or is this too much the flavor of the Sixties and early Seventies, with communes and other group living, coming back?
29
@AS Pruyn My aunt lived in such a situation in Wisconsin for 8 years till she died. A couple in their early 60s, opened up their large home, got certified by the state and housed 5 elderly people who were in various stages of mental and physical infirmity. An RN was in the home a few hours daily. Every time I visited, they were all quite happy, well taken care of, and you should have seen them shouting out answers to Jeopardy!
Contrast that with my dad who refused to live with us, refused help at home, was a cantankerous old grouch and generally miserable the 3 years he resided in assisted living. Some people are just not pleasant as they age.
15
People with dementia should not be in an assisted living facility. There was an incident some years ago where a resident choked to death on food but only one staff member was present who was not trained in the Heimlich maneuver. The problem is nursing homes cost a lot more money so some family members assume their loved ones will be looked after. It's true you can't force someone to not do something like the man who walked up with stairs with his walker. Some old people are very stubborn. Not only that but they will complain to their relatives who will respond by saying they should be free to move around uninhibited. Assisted living is for people who are independently ambulatory. They don't have to deal with maintaining a home or apartment. They know today's date and who is the current president. But maybe greed is why people with dementia end up in there.
3
My experience with assisted living for my mother (age 93-98) with age appropriate dementia is exactly as you described. Underpaid staff who are spread too thin, help only with medications-- and when we needed to have 24/7 help because of the lack of help at the facility, they wouldn't let the aide into the dining room to assist with her food. Said it might disturb the other residents to see an aide (code for race).
I am angry, bitter and would never consider this an option-- but what are the choices for me 15-20 yrs from now when I reach my mom's age. This is a crisis in the making as boomers age. Thanks for writing about it!
13
It is even more important to begin a discussion of the euthanasia taboo. Many facing dementia wish to die BEFORE they reach the point where they can't live independently and require Medicaid-supported warehousing in a nursing home.
27
My parents lived in an independent living/skilled nursing complex.
When my father died, my mother’s Alzheimer’s worsened. We were able to pay for a home health assistant for 24/7 health care. Even when she transferred to the skilled nursing side, we had someone come in to make sure she ate.
The one lesson that stuck with me was the importance of elderly parents living close enough to family so that it is not difficult for them to visit on a daily or every other day basis.
17
I took care of my mother with dementia until she had one too many falls and went into the hospital, contracted pneumonia, and mercifully died on hospice care before moving into a nursing home.
Having one child, I worry about what stress I may put on him before I die. I have a living will and try to plan financially, but don't think I can afford long-term care insurance.
As my mother's hospitalist observed, modern medicine makes many people live beyond the time they have any
quality of life.
12
I’m surprised that, towards the end of this piece, the author mentioned Japan as a potential solution. In Japan, elder care is heavily dependent on the family, usually daughters or daughters-in-law, and it is crushing the families and destroying women’s careers. Because of the ageing population, they are facing the reality of the elderly caring for an elderly, e.g., a ninety-five year old woman cared by her seventy-five year old daughter, who herself needs assistance. I think the US should learn from the experience of Japan so that it does not fall into the same trap.
16
There is a difference between “assisted living” and a “nursing home.” People often think they are just interchangeable names for the same thing.
Assisted living is just that. The people are pretty much self functional, but have some difficulty doing everything. A nursing home is for people who are alive but pretty much can’t do anything on their own whether due to physical incapacity or incapacity by dementia.
My mother was in assisted living when she had early Parkinson’s disease. When the disease progressed ( despite all medications) to the point where she could do hardly anything by herself, the assisted living people correctly informed us it was time to move mom to a nursing home. And that was the right move...if there is any “right move” watching a loved one’s ultimate demise.
I’m 74, and luckily quite independent at this time. Believe me when I tell you this subject is constantly on my mind!
22
Our aging demographic is compelling and we urgently need practical, evidence-based solutions and financing models. Among the solutions considered should be expanding palliative care and hospice, coupled with the right and means for every person to end their lives peacefully after proper consideration. The current models force too many to live miserable final years while bankrupting their families.
22
Absolutely correct. The model currently is to extend life as long as possible even when the person has no desire to live, and who is suffering. At least when the person has funds or insurance to pay for it.
8
MY WIFE'S MOTHER Died at a fine facility. As she had sufficient funds, she was able to remain in her apartment with her belongings until she died at 98. We were most fortunate to find 4 wonderful caregivers who were with her. Still, we were on call day and night. She was in "independent living" with private care. When she moved into the building, she was independent. She enjoyed the social activities, made friends and looked forward to dinner--the main event of the day. She'd sit near the elevator giving thumbs up at everyone who passed by. Still, it was very difficult for us to provide care for her after she was unable to do much of anything for herself. We went shopping weekly or more often for supplies. She had a washer/dryer in the apartment, without which she could not have remained there. The assisted living program in the building looks like a warehouse, where they line people up in their wheelchairs where they can watch people move through the lobby to the elevators. Most people there have significant limitations. The activities are minimal. There are no easy answers. After getting to know the facility, I have made a decision that I'd prefer to leave with dignity on my own terms than to put my family through the hardship of caring for me if my condition is irreversible. I can't predict what will happen when the time comes, but I know my wishes now. The aging in place idea underestimates the work involved to care for seniors.
15
There are no perfect solutions for the elderly. Every bad story people tell could happen anywhere. We'd like to believe that if only the proper level of care were provided that the elderly would never fall or never wander off or never be lonely, but that's a fairy tale.
It's an unfortunate reality that aging brings increasing deficits, and our ability to mitigate those deficits is limited. Most elderly require increasingly attentive care, but a level of care to protect against all risks isn't realistically possible. There will always be preventable incidents and accidents.
My own experience (through an aging parent) with retirement homes, assisted living facilities, nursing homes and skilled nursing facilities was positive but far from perfect, but in this human world who can reasonably expect anything approaching perfection?
We all love our parents, and when they suffer we suffer too. Growing old is a process of loss. A common progression begins with loss of the ability to walk without assistance, then loss of driving ability, loss of continence, loss of ability to bath oneself, loss of ability to brush one's teeth, and so forth. At a time of life when they are least able the elderly are faced with the greatest challenges, and we face these challenges with them and suffer with them, whether they are at home or in an appropriate facility. This is just a reality of life.
15
My wife and I are only children and we have no children, nor any close relative to help care for us at the point we no longer can do that for ourselves.
We plan on going into assisted living when the time comes. What other choice do we have?
8
An eye-opening op-ed this is! It would be helpful to know of other options in the U.S. within our existing senior and health care system. Are there safe affordable facilities or types of care available for seniors besides assisted living?
2
As a Presbyterian Pastor, I spend much of my time journeying alongside families as they make decisions about elder care. Elder care hinges on two difficult issues: maintaining the dignity of our elders and acknowledging that death is inevitable. This author seems to forget both of these issues. Our elders are NOT toddlers, they’re adults in the last phase of their lives. It’s not a fantasy of independence that leads people to assisting living, it’s the desire to still have a robust and meaningful life at 85. Of course some facilities fail and some deaths are the result of malfeasance. But our unhealthy fantasy is not that elders want to be independent, it’s that we all want to live forever. We don’t. Death is inevitable. If living a life imbued with dignity leads to an “early” death at 85 then I think we should consider that grace. I’ve seen many nonagenarians suffering greatly as their dignity and independence is stripped of them while their bodies slowly slowly let go. This is a difficult matter but not so difficult that we need to let fear overtake our compassion.
33
There is an option between prolonging life at any cost and outright suicide. At a certain age, when you are ok with it, stop treating your illnesses. Don't take antibiotics, give up on Plavix and statins, and for heaven's sake don't go through chemo! Let your body die naturally.
Does an 85 year old with dementia need a cardiac stent? Why??? Does someone with heart failure need to treat their skin cancer? Why???
As a family friend who was a nurse used to say "Pneumonia is the old man's friend". Infections, cancer, heart attacks, strokes. In the fragile elderly, these can be a sign that the body is ready to go.
33
@Martha
Unfortunately the physical problems aren't always there to end life, as was the case with my 98 yo mom. A blood pressure pill, diuretic and Vitamins, along with occasional use of painkillers after a fall were all my mom took. We were afraid that stopping the blood pressure meds would lead to a stroke, not an earlier death. Her last few years were miserable owing to dementia, not her physical condition.
8
@Annie
That is really hard. I get it. I have fear that my Dad, who has Parkinson's and Lewy Body dementia, will live on long after he is unable to truly be alive. Aging is a monumental struggle, and watching loved ones age can be heartbreaking. My sympathies to you.
8
A great topic for discussion and ongoing articles given the US aging population. A reputable assisted living facility will even not accept someone with dementia or someone who might be confused and wander off or who doesn't understand how to exit the building in a fire.
These facilities serve a purpose but they are no panacea. Each family situation is unique. Sadly, many couples find themselves in a situation where one person is more independent than the other but assisted living and memory care facilities are rarely physically connected.
This is a financial time-bomb for most families that should be an important topic of discussion during the presidential campaign.
17
My wife and I are currently at home and healthy enough to remain but we are getting old. Years ago we took out Long Term Care Insurance. Now we are facing our 4th raise in premiums. The first 3 were somewhere around $100 a quarter, manageable, though irritating. This one shocked us coming in at a $400 plus per quarter. Drove me to do some research--found out that the company was suffering so badly that it ended up being rescued by Chinese financing. If I were to believe that it would pay out when we needed it, I might bite the bullet and pay. But, so many horror stories about payment when you need it are out there that I don't think they will pay. I don't trust them anymore. Time for a government program or at least better regulation.
33
The crux of the matter is having a trained and caring staff to care for an aging population. The challenge is paying that staff a living wage, especially in this country, now. Especially with a demented president who wants to destroy the health care system in place, however could continuity be assured? ACA is hardly perfect, we all know that, but it is a start; there are possibilities and options to improve it, to learn from the Japanese approach. But such improvement needs to have a basis, a platform to build on, not the wasteland encouraged by rapacious legislators.
14
My mom is in assisted living. There she gets good care with people always keeping an eye on her and she enjoys going to the movies and lectures etc. She has major cognitive issues so I have someone helping her in the morning to get her organized for the day and she had L-T insurance which covers this. Her assisted living experience (and mine) is excellent so I wouldn't dismiss it as the author seems to be doing.
14
For those who need round-the-clock care, nursing homes are the sensible answer. Expecting adult working family members to toilet, dress, cook and feed, medicate, and exercise an incapacitated elder is untenable. We needed help, and the system of home caregiving that exists is inadequate, unprofessional, and unsafe. There was no affording assisted living, and it was clear to us that it wouldn't meet her needs anyway, so my mother-in-law lives in a nearby long-term care facility, where we visit her frequently. She is safe, medically well cared for, fed, clean, and she has made friends. My only wish would be for her to have her own room, rather than having to share with a roommate.
20
I live in a CCRC and yes it is expensive, however the employees of these facilties are difficult to find because of the low salaries and the difficlut task of taking care of residents AND I feel this article is a little :"one-sided". I live in independent living but volunteer in Memory Care and skilled nursing and believe me working in those areas is no easy task!
15
"Part of the problem is a lack of regulation."
That's the other side of the "we want to be free to do what we want to do" fantasy.
15
I am seventy-two and care for my 100 year old mother at my home. I use assistive living as respite care two weeks a year to go on vacation. It was obvious from the experience that she could not receive the level of stimulation and emotional care that I provide in our home, care which I consider much more important than constant monitoring for falling.
Caregiving is difficult work, and I am obviously not living the full retirement that many of my friends are living, the "trips of a lifetime" that are depicted in the retirement brochures. I don't resist my situation as resistance only makes it worse.
In this Instagram world we live in, there doesn't seem to be a place for the nitty gritty of growing old. Either we are given visuals of vigorous and gorgeously aging people or we speak of some sort of assisted suicide when we have reached a certain age that offends the young.
I do believe when we are living in unrelieved pain we are entitled to a humane end, but we need to be careful of wholesale cutting off of life. We are already a violent and brutal society.
Caring for the elderly is God's work and maybe has a redemptive component. As I will have no members of my family of origin when my mother dies, I deal with anticipatory grief as well as fatigue. So be it.
Each case is different and we must do what we can without judging ourselves harshly. When my mother needs to go to a nursing home, I will put her there.
Old age, ours and those we love, requires surrender.
59
For all the comments that swear off nursing home care: The trouble is not the fall that kills you. It’s the one that doesn’t. In the meantime, whether it’s the fall, a heart attack, sepsis or something else that catches up with you, get a medical order for life sustaining treatment completed (MOLST form in New York) and hang it on your refrigerator. Those paramedics will resuscitate you otherwise. And then fall or illness, unless you’ve got long term care insurance or lots of cash, and live in an area that still has plenty of home health aides (fewer and fewer as the border tightens,) the nursing home will follow, like it or not.
18
I am dismayed that so many of the comments advise assisted suicide as the solution to our very broken long-term care system. There is tremendous moral hazard in making suicide a standard back-up plan. We need to fix our long-term care system, rather than forcing elderly people with limited resources to view themselves as “burdens on society”.
Those who have worked hard all their lives and contributed to their communities and families deserve care and dignity in their later years. I am not saying that suicide can’t ever be the right choice, but that it may too easily become a coerced choice.
There are real solutions to this issue—not easy or cheap, but necessary: resources for aging in place, a national long-term care insurance program, moving away from a for-profit health care system, changing our attitudes about what “the best life” looks like.
8
@Bamagirl
As a stong advocate of euthanasia, I have to say I've never encountered a discussion in which we supporters would want it to become a coerced choice. Suggesting that is no different than the Repugnantcans saying Obamacare would lead to death panels. Stop it!
7
The author is confusing an 'assisted living' facility with 'independent living' or 'active senior' housing.' The former are much close to nursing homes, offering assistance with walking and bathing, providing onsite medical care and meals, along with simple programming such as bingo, music, or very simple exercise. My mother lived her final three years (the last year in the 'memory' unit) in an assisted living facility in Vermont, where she received excellent care. She died there in hospice with my sister at her side and lots of kind support from staff. I'm not arguing there aren't some bad facilities in the mix, but do some research--'assisted living' is a very viable if costly option for eldercare.
10
My vacation reading list includes "Being Mortal" which addresses the harsh reality of our errors in the treatment of the elderly. Freedom to choose and being connected to what soothes our soul, e.g., pets, people, plants, etc, makes a very positive difference. Also, service to other beings so that our lives continue to make sense is on the 'list' of how to stay 'alive' and not just 'living'.
11
Same can be send for 'independent' living choices for special needs adults. What they actually need is more guided social opportunities with a 1 to 3 ratio. But states offer (if you are lucky) housing and workshop opportunities for independent living.
It's a nightmare for those of us who have kids who want to be social but can't without care. Our son now 26 spends most of his day with his mom. What 26 year old wants that?
5
Based on experiences of my own parents, my advice would be do not choose assisted living unless the facility has higher levels of care available at the facility once more help is needed. It is especially traumatic in the case of an elderly couple, if one person has to be moved to a different facility than their spouse because they develop a need for the services a nursing home provides.
8
People need to realize that they have an expiration date at which time quality of life becomes atrocious and plan for it accordingly.
19
Come to Carousel....?
2
One thing not mentioned...elderly care staff are notoriously low paid. This brings undertrained, if well intentioned, people on board. Wages need to be raised.
Promises made should be promises kept. More regulations and oversight are in order.
Five thousand dollars a month should bring more than three squares and a bed.
27
Watching an elderly friend become more fragile incrementally day by day has raised a lot of questions for this observer. The friend is mostly bed bound, slightly delusional and confused at least as to where she is and what she remembers of her life. She is in no condition to decide to terminate her life, here in Ontario where that is allowed. Without the power of attorney, I simply visit and try to help her maintain a sense of her identity. The care in her new and publicly funded facility is excellent. I remain astounded at what the province is willing to spend on her care, and to what end? Here the government is maintaining an identifiable reverence for life despite the fact that increasing numbers of its citizens reject any kind of religious belief. (I am not among their numbers).
14
Unfortunately, I don’t see the Japanese model taking root. As soon as the words “mandatory” and “payroll tax” are mentioned the idea of a government sponsored senior-care program will be squashed like a bug. We can’t even get health care right. As long as we have a for-profit model we will continue to be treated as a revenue stream rather than individuals.
42
People should be allowed to make informed decisions about ending their lives when they no longer have the quality of life they desire. There is a misconception that it is always better to live when sometimes that is not the case.
This is about choice. We treat our animals better than humans in this regard.
There are many people who don’t have religious affiliations who would welcome the ability to get a prescription from their doctor to be used at the appropriate time of their choosing.
36
It is equally booming in India with the increase in the number of parents living alone-empty nestors.Often children are working elsewhere in the country or as is more common now abroad. You are encouraged to move to senior citizens gated community where you are expected to "be happy sharing similar vocations and experiences" I am nearing 80 and I would never ever want to be part of this.To me the dignity and comfort of my home is more important in my sunset years than be in some alien co -living space.
6
I have researched extensively as my father has grown older. I came to the conclusion that the only real advantage offered by assisted living is the possibility of more social contact than a person might have living at home. For some people, this benefit is important, for others not as much.
15
My own plan is to self-terminate while I still have my physical and mental faculties. I'm at the age where this would be the right time (as in, say, later this afternoon). Unfortunately, I still have a dog who needs me. And a wife who does too (maybe, not sure). So I must live healthily, go to the gym, etc until I've outlived them and can proceed. Everybody needs to plan ahead.
32
Yes, I’m hoping that euthanasia is legal when I get to the point where I’m noticeably deteriorating. I have no desire to live a life that is a burden to others, while simultaneously offering me less comfort and happiness.
25
Excellent analysis. All I can add is some sarcasm: "What price freedom."
2
This article alludes to California’s “board and care” homes. These are licensed and regulated by the state. We found one for my father as his dementia worsened and his physical needs increased. The small residential setting was perfect as he could not participate in much activities any way, and it felt like a home. The staff grew to love him (they sang to him!) and worked with us when he needed more to hire an extra worker for bathing and moving him and to rent a bedside lift. When he passed away there, they cried with us and still remember his birthday on Facebook. It was a loving and home like place and even with the extras that we paid for was 1/3 the cost of a nursing home. Why are these not available in other states?
32
@SGS
Good question. Having lived in California I am familiar with the Board and Care facilities. My friend and I used to visit her mother in one of these homes. Her home was in a residential area among other single family homes in a very nice area. The care givers lived in the residence, cooking all the meals and took care of personal needs. It is not for everyone but the cost is much lower than traditional assisting living facilities.
5
My mother has early-onset Alzheimer's, and her assisted living facility has been, I'm convinced, literally lifesaving, as being extremely lonely in her house was contributing to a deep depression that I'm sure would have killed her sooner. This depression was noticeable even when my father was alive and doing his best to take care of her, and in the time after his death when my sister tried. Now, with company and different things to do all day, my mother is happier than I have seen her in at least a decade.
Now granted, she lives in a specialized place where care is mostly focused around dementia, from mild to severe. She has a scheduled day and people keeping her on track, and spends her day with a group of people in the early stages of dementia like her. Over time, she will move to other groups. The problem here is not the facility itself, but the cost: it's enormously expensive, and only inherited money from her own parents allows my mother to pay for it. My dream is for care like this to be more widely accessible (and yes, better regulated), not less accessible because we somehow think suffering is better for parents or that people won't fall down at home.
15
The reporter is very hard on ALFs, using extreme examples. She doesn't go into detail about her own parents' specific needs as they aged or how help was given or paid for.
My own mother is now 91. She lived independently until 86,
She moved to a ALF. It was very hard for her to make the transition. She enolled in PACE, a program that manages the medical side and partners with DSHS to pay the ALF charges and their team has been great.
They got on top of all her medical problems and she stabilized and spent 3 great years there, getting that extra support, meals, laundry, help with bathing that she needed. Her memory continues to deteriorate.
Sadly, she is now recovering from a broken hip in a nursing home and it is an open question whether she will be able to return there with increased support.
It is when the elderly get to the point of high physical needs and are cognitively impaired that our system falls down.
The writer does not mention Continuing Care Facilities as a model. Only available to the well off as of now, the facility guarantees care at the level needed for your whole life. They provide high level care to those who need it, assisted living to those who require less.
I'm a nurse who sees in the hospital exhausted daughters who are caring for their parent with high needs at home. The parent's needs are beyond what they can provide, often coming in with bed sores.
Continuing Care needs to be there for everyone, maybe someday we will provide it.
17
We live too long. We are blowing what could be great launching pads for our children and wonderful charities. The dream is to enjoy your silver years; you’ve earned them, but the reality is, for many, super high medical cost burden and care burden for rare “good days.” We need really cost effective alternatives for communities where it is acceptable not to get every hip replaced, or treat every cancer in all elderly individuals and where one can enjoy giving to the world not taking in our final days.
31
Yesterday afternoon my sister and I had to make arrangements to move my Dad into a VA nursing home only one month after spending 10k for an assisted living residence where he resided for only 5 days. He was in decline but could still get around with his walker and use the toilet independently. My sister and I thought he would get the help he needed and the socialization would be good for him. As soon as he needed extra help it became apparent they were not capable of supporting him although we were led to believe the help would be there. They twice sent him to the hospital where he was treated for almost a month before release. We should have done more research and found an AL facility who could help transitioning to nursing and eventually hospice care however those facilities cost anywhere from 17k to over 20k a month here in nyc. America is not prepared for what is to come. Baby boomers in the next 20 years will crush this current system. Like everything else lately in America, there is gridlock in Washington and nothing is being done. We need to step up and look closely at the Japanese model for the welfare of our people.
27
My mom moved into an ALF about 18 mo this ago. initially it was great but sadly we ran into some of the issues mentioned in the article. the facility itself is really great... but really designed for people who require minimal assistance with activities of daily living. My mom has dementia that either was worse than we realized and/or progressed. She was doing fine until she had a shoulder replacement in December. After a stint in rehab, she was discharged back to the ALF. But required 24 hour care. So we had to pay out of pocket for that. after it became apparent that she needed 24 hour care, we made the decision to place her in a memory care unit in a nursing home. She is, I think, better off there.
My main complaint is that the system and options for care a frustratingly opaque. And I have worked in health care for the past 30 years as a clinical pharmacist. What you really need is an advocate to help negotiate the options available. Things are so disjointed and expensive. There's no roadmap. we could do so much better.
18
Assisted living is not about trying to stay young, but rather, avoiding the complete medicalization of becoming old. Wanting an environment to look inviting is not the problem. However, the expanse of the industry as a for-profit, chain ownership model might very well be. Why would an assisted living (or nursing home) have too few staff on duty to meet the care needs of people living there? Profit. Nursing homes are not the answer. Designing community-based, affordable care is.
30
I completely agree - the problem is that the majority of assisted living and dementia care facilities are for-profit and the care standards vary by state and are mostly unregulated. Corporations offer the promise that our loved ones will be happy and well cared for, but without regulations to assure reasonable staffing ratios and training standards for staff, many assisted living and dementia facilities fail to adequately meet the needs of their residents. Buyers need to beware and keep close tabs on the service and care their relatives receive. But overall, more federal and state oversight of the assisted living model is needed.
1
We’ve improved lifespan without improving health span. My mom developed lymphoma at 82 and I figured that was it, that she’d had a good life. At 82 she was independent. She beat the cancer but the treatment left her weak and the after care drugs she was put on caused weight gain. Almost 8 years later she’s in assisted living, sits in a wheelchair all day and doesn’t have much going on. Sometimes I think we try too hard to put off the inevitable and these problems are the blowback.
36
Most of us learn about elder care when we need to manage our parents through the process. There are three levels of care: Independent, Assisted, and Skilled. The latter is what we over 50 remember as nursing home care. In all cases, staff shortages are common. Many times families are faced with sourcing additional care persons to manage their elderly loved ones.
We were grateful the care community our mom resided in had all three levels of care. With relative ease, she could move from one level of care to another without actually leaving the facility. This is a tremendous benefit to the residents because it represents less disruption. For their families, there is some continuity in the facility’s staff.
In the end, having someone who can visit regularly, get to know (by name) the people hired to watch over your loved one, agreement with other family members when decisions had to be made, and patience with the process helped our family manage this for our mom. When will we use this knowledge again? Sometimes friends seek my advice when they’re facing this juncture, but mostly I think about in relation to my own elder care. How can I plan ahead so as not to burden my own children with the choices that will have to be made.
5
Being safe is not the greatest wish of many seniors. We are all going to die so the question is how do we best enjoy our last years. It is not easy to be old, but it is better if we are allowed to be active, socialize, and do some things that are not "safe" for us. I know people who live in assisted living that are quite happy. If they require additional help later on they can get it, but in the meantime they have a decent quality of life.
20
This is a relevant and important article I did not enjoy reading it. Reality bites! Perhaps it's better to dwell in the fantasy of a lightly-assisted independent life, and spend a lot of time in the gym, eating Mediterranean, and going out in a blaze of dark chocolate and champagne. (I am more serious than you might think.)
26
Assisted living worked well for my father. However, in my fathers case, as he aged I had to hire private sitters to assist him and take him to meals, etc. The story of the woman who fell three times is indeed unfortunate, but no facility in the world is going to have someone with a resident 24/7. Families need to be prepared to augment the care of their relatives as necessary to their circumstances.
11
What I don’t understand is the blind desire for longevity at any cost. The life saving measures technology and medical science has developed, is prolonging our lives past our natural “expiration date” costing us our dignity and right to choose when our lives should naturally come to a close. We automatically submit to expensive medical procedures that prolong our lives - but to what end? Choosing when to die should be a choice rather than something determined by greedy investors or the medical industrial complex. At what point did we become a commodity that is shuffled around between lucrative care facilities, draining our loved ones of finances and energy, while we await our ultimate demise. We are not commodities and should be assert our rights to make this final choice in a thoughtful and dignified way.
44
@Robert
I so agree! And yet, who do we know who has said, when a dear friend needs a pacemaker in their 80's- "You've lived long enough- don't do it!" If your parent has a heart event and needs a stent put in, would you say to them- "Don't do it! You've lived long enough!" If a teenager gets a cancer drug that saves her life, would you say she should have died instead? I am not saying the answer should be to let them die- or Christian Science- but where do we as loving individuals begin to change this? I know that for me, the answer is getting clearer and clearer; I'd refuse these things. I say that now- but wonder what I will say when the time comes to make a choice, if there is the good fortune to have a choice at all. If there were a choice, a moment of decision, my answer would be based on whether there were still meaningful things, important to me, that were still within my capacity to do.
It's when the whole thing goes beyond this point that the real tragedy begins.
We live like gods. We die like humans. We do not understand our circumstances.
8
Your comments are spot on! Add to this dilemma the confusing mix of religious beliefs that advocate keeping someone alive artificially- rather than allowing them a death with some modicum of dignity - that does nothing but complicates our process of growing old. I have a friend who has multiple sclerosis, is pushing 80, and has deteriorated to the point where she’s barely independent. When I ask her what’s the next step...she always replies “I have an escape plan.” I will be most proud to hold her hand...as she escapes...
4
Senior care in this country is an obscene joke. Nursing homes are regulated and inspected? In many places that’s a cruel joke. Where I come from (rural south central NY) many of the nursing homes are worse than warehouses for the elderly, where sanitation is minimal and some on the staff abuse, neglect, and even steal meds from the patients. Even the “nicer” ones, which charge more than $100,000/yr, are understaffed. I know all this because I had to do due diligence on them when my parents needed care.
15
We are keeping Mom in her house for now after two broken hips, a lack of stamina and a need for some household managerial support. We as siblings with a recently widowed parent are ‘fortunate” one of us is an unemployed, empty nester so he can stay full time at her home ( his childhood home ). We have investigated assisted living on Long Island, it is priced between $7000-10,000 monthly. It is basically a newly built dormitory suite in a hotel styled building with common meals and some arranged activities. If she needed real assistance by her side, she would still require the hiring of an aide which would cost her another $5000 a month. While she stays in her home as she prefers at a cost of $2000 monthly in property taxes and minimal aide needs just family on premises, she is safe, happy, economizing with her neighborhood friends and family.
18
Because the U.S. will continue to give tax cuts to corporations and billionaires while carrying a bloated military budget, human life is too expensive and expendable. This is why suicide by humane means should be an option for all citizens.
31
Soylent Green😁
The new reality of a longer lifespan is that some older people will need some level of care from simple assistance to total care. One needs to plan for this when one is working and not expect that adult children will be their solution to care. The same way that one plans for illness can be extended to care when one needs it. This should be part of one's "retirement planning". Should dementia come into the picture, plan on needing total care in a specialized facility This care is expensive just as an acute illness is expensive.
14
The article is setting out a contradiction in terms. Assisted-living is not for the self-sufficient, hence why the occupants are being assisted in their living.
3
My mother wanted the big stroke that would do her in or something else before she got to the assisted living or nursing home.
Thankfully she got her wish at 87 and had a massive stroke.
I pray for that as well.
Through modern medicine we are "living" too long.
26
My grandfather's widow (he remarried after my grandmother died) moved into a facility outside Portland when my grandfather died and lived there till her death 25 yeats later.
At first she lived on her own apt. taking such meals as she wanted but at at least one each day in a communal dining room.
The facility provided cleaning and laundry services, game rooms, transport to doctors,
organized travel locally and abroad. Ad she aged and was less able to care for herself she was moved into a shared room with more services provided but still semi-independent able to participate in a more limited way with common activities. Finally as she slipped into dementia she had round the clock care. There were registerd nurses and a doctor on call. All on a beautiful landscaped site.
Seems to me the ideal setup, assisted living through total care all in one facility. She was luckier than most I guess reading the article and comments.
14
@expat
You make no mention of the cost. It sounds ideal but I don't imagine that most of us could afford it.
9
@Renee Richmond This happened 40 years ago. I do not remember the financial adpects but she paid a substantial buy-in fee and then monthly fees. I have no idea what those would translate into in today's dollars. She was far from being a millionaire but I suppose today's upper middle classes would have adequate assets and income to do the same.
2
Assisted living is one of the many options available to seniors. They typically are not medical facilities. This type of arrangement is not for everyone and it is certainly not the best option for seniors who need assistance beyond the activities of daily living (housekeeping, laundry, meals) and general observation. As with everything in the entire world, it is critical to observe and understand as one size certainly does not fit all. I wish my parents understood this.
My parents are in their late 80s. They refuse any sensible input or attempts to plan ahead. They landed at an assisted living facility via a series of crises that left them few choices. This facility can no longer handle their growing medical needs (in fact, they recently transferred my mother to a nursing home, this is supposedly temporary). My parents choose to imagine conspiracies, they threaten and vilify the staff and administration rather than let us help them to make reasonable choices, plan ahead and face reality. As usual.
Nothing in life goes as smoothly as one would like. Planning ahead and educating oneself to the realities available is a critical first step.
15
@June3. Good point. The “dig in their heels” attitude that is a frequent element in caring for elderly parents.
3
There is a conspiracy: to make one's last days on earth as miserable as possible, and to take every penny of an old person's assets, including their home and all their possessions.
5
Assisted living was a HUGE improvement over living at home for my mother-in-law. She was so lonely, and we were spending a fortune on help, home maintenance, and so forth for her. She got five good, sociable years in assisted living for much less than we had paid to keep her in her own home. As her dementia progressed, we have added services at the assisted living place. Hospice will be available when it is needed.
13
I guess we should all move to Tennessee. I kept my mother at home and did most of the work while a caregiver came in during the day so I could go to my job (ie, so I wouldn't lose my health insurance). While in home day care cost more than my salary, asst'd living would have cost double or triple my salary.
11
My father was in a wonderful assisted living facility. But that was in France. We really need to look elsewhere in the world for other ideas, as the author points out. While the French system has its weaknesses, the family is considered responsible for their parent's care. There is no opting out. Private room with assisted care, including socialization, visiting doctor, physical therapy, cost us about 4,000 euros per month and to a large degree covered by the equivalent of his Social Security retirement payments and the French version of medicare for all. This was a private enterprise, not state run. It was clean but the physical plant old. He was taken off all sedating, 'chemical handcuff 'type meds. His only medicine at the end was a glass of wine with lunch and one with dinner. I am grateful for the dignified care he was provided.
We have been hoodwinked in this country to believe that free enterprise competition is the answer to quality. As a physician, I still don't understand how politicians can still fool us into concentrating on reimbursement tactics instead of delivery of care and affordability strategies. Americans have been brainwashed into thinking that choice means quality, despite groups like Kaiser Permanente, Geisinger, and Rocky Mountain Health , that continue, even as network plans, to receive the highest quality awards. Our medical system depends on a mass hysteria, worthy of a Saramago novel, that politicians are knowledgable about delivering care.
33
But what do people do if they have no family to assist them, or their children have moved overseas?
3
When my dad passed away, my mom (in her early 70's) moved into a 2-bedroom apartment in a residential facility in Sun City, Arizona, with common dining room and multiple activities. She was completely independent, yet had access to a Healthcare Center in an adjoining building with full-time nurses and visiting physicians who were on-call 24/7. She paid for this through the sale of her home, and a monthly maintenance fee. She enjoyed having lots of friendly neighbors, drove to the shopping center, participated in aerobics classes, played golf, and proudly displayed her paintings in the hallways. After her health failed, she moved to the Center, where she passed at 94.
My sister and I, and especially, mom, thought that she had made an excellent decision. Because of her outgoing personality, she fit in easily, but, obviously, this would not be suitable for everyone--certainly not for folks who don't enjoy mixing with others. The Center was a definite "plus," as care was available night and day, and we knew that she would not have to be moved to another location when her health worsened.
I would imagine that this situation is much more expensive now, but if one can afford it, it is well-worth considering.
13
This article is far too damming of an important service for our nation's elderly. There are a myriad types of ALFs in the country and it is necessary to seek out facilities with the care focus and service capacity to meet the needs of individual residents. It is very expensive to provide even modest oversight to residents with only minimal needs such as medicine management (the greatest need for most residents). Assisted living is a godsend to a vast majority of residents who enjoy a social life far more enriched than they would get even if they lived with their children. Also, ALFs are regulated in all states and have regular inspections. Although staffing is difficult due to low pay and irregular hours, most staff sincerely care about their residents despite the fact that many elderly can be cranky and difficult at times. This article is not a fair review of the industry.
16
Regulations on ALFs are minimal in most states.
2
Staffing is “difficult “??
What you mean is that the for-profit ALFs don’t pay a living wage to the people who work there.
Pay people a living wage and they will want to work there
9
Maybe it's better in Maine, but one assisted living facility in NJ had a lot of drugged up residents and cost at least $6000 a month (the good one was $8000 and this was 6 or 7 years ago - I'm sure it's up to $10,000 or $12,000 now). I looked at the drooping heads and said "I can drug up my mother at home, thank you."
3
The long term solution will need to be a rational move toward wellness that rejects the massive amount we now spend on dealing with the effects of hurt and harm and making high tech war our "security". We see nothing in our governments that indicates any interest in wellness. We are going to wait until the crises grows into an emergency that necessitates change. Then someone will figure out that care like everything else should neither hurt nor harm. And that people are vastly different. We will have a care society that is more considerate and better regulated than our present dysfunctional one.
4
The author really suggests that nursing homes are more appropriate for many elderly, but really does not examine that option critically. Nursing homes with high quality are hugely expensive and many cannot afford them. Medicaid will pay only after leaving the elderly with very little money. In addition, nursing homes may be better regulated than assisted living facilities, but they are far from perfect. Especially those with Medicaid-dependent residents. There have been many well documented reports where they fail patients also. I think the Japan model cited is a good answer, but good luck getting yet another deduction from our paychecks. The saddest part of this is that the end of life for many with dementia is horrible, for them and their families, who have to watch their loved one deteriorate into someone that cannot recognize them. I suggest anyone who wishes to depart this world with more dignity and concern for their family consider a medical directive. And do it today. The directive can state your wishes if you reach the point in dementia where you cannot communicate or feed yourself. Just let me go naturally at that point. Some of you probably agree with this, others will not. I don’t care. It’s my choice.
27
The statements regarding the oversight of nursing homes in the states begs credulity. My sister spent the last two years of her life in a nursing home in Michigan where the "attending physician" was scarcer than hen's teeth. The facility was grossly understaffed, the food was institutional (horrible) and the care was almost non-existent. As a part of my education I did several clinicals at nursing homes in California and Michigan. None of them had adequate staffing and few were trained professionals. The pay is so sub-standard that nursing homes cannot attract good help or retain the people they hire. Be afraid!
15
Whatever the validity of this argument, it overlooks a critical concern. Nursing homes cost twice as much as assisted living facilities. And unless you are independently wealthy, that has to be factored in.
14
My father's nursing home (for rehab care) cost a lot less than the assisted living facilities we looked at for my mother, which ran from $6000 - $8000 a month, 7 years ago.
2
As expensive as this care is, it is really cheap. $100,000 per year pays only $11 per hour. And that's not counting food, insurance, shelter, recreation, etc. And the staff are looking after many beds and are underpaid. The true cost for adequate care would probably be closer to a half million per year per person. Will never happen. Legalize euthanasia.
24
Japan's model is the wise suggestion, but it will take a shift in the societal mind of America to make it work. That doesn't seem likely but as the Boomer generation grows increasingly feeble I suspect someone will introduce a variation of it here.
John~
American Net'Zen
9
The author is spot on. "Assisted Living" is the equivalent of "Forever Young" in the beauty industry. It does not take into the fact that we get old and need more than good food, games and movie nights. Also, some of these families are very naive. Putting somebody with dementia into an assisted living facility will not permit that person to make new friends. People with dementia live in their own worlds, have their own "friends" (like children who have the make believe ones) and have no sense of reality. Jumping into a pond is just going for a swim for them.
Of course it is a lucrative business. They are cashing in on the lack of the public's knowledge. And they should not be allowed to take in people who really need assistance - of the medical kind. It is far too easy to say "oops" when a person dies out of negligence.
13
At age 83 after a stroke and a heart attack caused by medication, I still walk my dogs, pump iron, and do all sorts of chores. Assisted living and nursing homes are not some things that I would do. My choice of an ending would be taking my life with whatever I thought made sense. Living like a helpless animal is not one of my solutions. Suicide as we call it would be more preferable. It is unfortunate that more of us don't consider that ending better than lingering.
37
@Jim Dwye
Good for you, Jim! There is nothing better for body and psyche than staying engaged. My husband still stacks two cords of wood every summer, maintains an acre, walks three miles a day and otherwise is very active. I wish you many more years of being a fully functioning man.
6
I placed my Dad in an "assisted living" home, in a "memory care" unit in May of this year. Prior to that, he sat at home, watched TV, and, we hired someone to come in to help him.
Neither I, nor my sisters, have the wealth, time, or the desire to quit our jobs and spend all our time taking care of our Dad.
The facility offers my Dad excellent food, good oversight, some companionship and activities, and, they do prompt him to keep moving and do something besides watch CNN or Fox News all day getting riled up about whatever propaganda those networks are feeding to their geriatric audience today.
Yes, it is expensive. Sure, I wish I was an investor in that facility.
But, they solve the real problem that America faces: Old, White people have health care. pensions and Social Security that keeps them alive long, long after they would historically be alive, and, long after they can take care of themselves.
If nobody in the family can take care of them, they either starve (some do), or, they go into assisted living.
I say: Thank Goodness for assisted living. Nothing wrong with making money off of old, white people who have money to burn in their old age.
13
I will only look at facilities run by non-profits. Maybe we need a law making them all non-profit. It may keep greed out of the equation and allow most of the money to be spent on patient care.
19
My mom, who passed away three years ago, lived several years in a gorgeous assisted living facility in suburban Boston. They had an art studio, outdoor jazz concerts during summers, a gym, pet visiting days, the whole nine. What I especially liked about the place is that it had a dedicated passcode-protected memory unit for patients with Alzheimer's (or as my mom used to call it, OldTimer's) and dementia. In retrospect, it was probably the tiniest bit early to put her there, but since I'd been called at work a few times by kind strangers who found her wandering around busy streets on the way back from Walgreens, it turned out to be the right move. The staff was terrific, but even they couldn't be there the morning she got up at 4:45 to make herself tea, tripped, and cracked her head on the floor.
Besides being infinitely grateful to my mom, who was 90 when she died, I'm grateful I bought LTC insurance in 1997. It ended up being nearly $600 a month for the last several years, but when it started paying those $14,000 a month fees it was a godsend. To anyone who hasn't, meet with an elder care lawyer about transitioning your parent/s' assets at least five years before they go into long-term care. It can make a huge difference.
19
In Israel, where I live, people with dementia may not reside in an assisted living facility. They must reside (if not at home with some caregiver, hired or not) in a locked facility, so they don’t wander off. Unfortunately, most of these facilities are horrid places. There are a few exceptions, with long waiting lists (you have to wait for someone to die to get your parent in there). If someone is in an assisted-living facility and then is struck with dementia, unless that facility has a special unit for people with dementia, they need to leave. Some places permit such a person to say if they have a full-time caregiver (who are almost all foreign workers here, from the Philippines, Sri Lanka, India).
3
Many nursing homes are not much better. They do have staff there 24/7, if you can find them. They are often poorly supervised, poorly trained CNAs and the turnover rate is very high. The nursing staff may consist of one nurse whose main occupation is to distribute medication. When we tried to bring our complaints to an omsbudsman, they never returned our calls. Families need help in keeping their loved ones at home if possible. We are stretched too thin with jobs, caregiving, and the daily tasks in life.
21
My mother has dementia and as a result forgets that she can not safely walk. There is a pad next to her bed to alert the staff that she is trying to get up but with five other residents to keep track of they can not always get to her the moment her feet hit the pad and as a result she often falls. I do not blame the faculty for this as they can't be with her 24/7 any more than I could when she was in my home. Short of tying her to her bed (which would be illegal in her state) or hiring someone to watch her literally every second (ie. no bathroom breaks), this can not be prevented. Sometimes the care a person needs is simply impossible to give at any price.
44
Assisted living? Interesting how we still avoid talking about assisted dying and death. And if it’s dignity you want to invoke, where is that in our nursing home, geriatric, long-term — really, all medical systems of care in this country today? By any measure, what we have created is horrifying.
42
@JC.....I couldn’t agree more! Life without quality is simply existing. I would like to be able to determine my exit, say my goodbyes and leave with some dignity and grace. Our culture will never allow this, but should you be shot in a mass shooting, don’t even think about suggesting bringing back the ban on assault weapons! What a country! Life is only precious in the womb or will it can be used for profitability. We have really lost our way.
4
The USA cannot even implement a system of universal healthcare for its citizens - don't expect it to be able to deal with affordable longterm care for the elderly. USA is DOA on just about everything. And for us who must live here - it's DIY.
76
@Randé
And this is the richest country ever, in the history of the world but our elderly are still considered disposable.
We have a political party that can’t wait to get rid of medical coverage for untold millions of people.
So many other countries thrive and still take care of the health of their people. Why can’t America?
Greedy and hateful politicians, that’s why.
9
Someone needs to write the companion piece: How to Grow Old in America because as Bette Davis often said, "It ain't for sissies."
My plan is to avoid the life extending medications such as blood thinners (aka rat poison), pacemakers, etc. and let nature take its course. So many elderly friends and relatives have lived long miserable end-of-lives. I'd prefer to pass as my grandfather died of heart failure, suddenly while asleep in bed. I figure if I avoid the life extending miracle drugs/devices, I will increase my odds of having a comfortable life at home until the trumpet calls.
54
@whipsnade
Now at the end of the ‘golden years’, everybody should sit down and make a living will, and discuss it with their doctors and family. Make sure as best you can they understand and will abide by your wishes.
Because of many health issues I have many health providers and a great daughter and son-in-law and I have warned them all I will haunt them from wherever if they don’t abide by my wishes!
17
@whipsnade, that pacemaker made my mother's life amazingly better. Before she had it she passed out in her bathroom. Luckily her neighbors checked on her and called 911. She had a severe case of pneumonia but then they discovered the real reason for her illness was Afib and she needed a pacemaker. If she had not had the pacemaker her dementia would have gotten to a very bad point because of the lack of oxygen to the brain. She lived another ten years, to the age of 95, with only mild cognitive impairment.
1
If we don't have time to care for our aging parents, and assisted living facilities can't provide the necessary care, and no one wants to go to a nursing facility, and we can't afford adequate in-home care, then we might need to radically reorganize our priorities or offer physician assisted suicide for those who stay alive far longer than people used to but fail to retain the necessary cognitive and physical skills to survive in the current infrastructure. This sounds harsh but is more humane than leaving them to roast unattended in the scorching sun. We would then have far more money and resources available to provide health care for the young and middle aged. We already make severe choices, perhaps we need to make more practical ones.
33
@Grunt - Yes, you and I await the first New York Times column on this subject. I believe that in connection with articles on Universal Health Care - called socialized medicine by many - Republcan or even other voices may have coined the term death panels. I believe but have not and cannot google right now that it was said that with so-called socialized medicine it would be necessary to have death panels.
I am sure there are Times readers who are better informed than I about this. In Sweden, with Universal Health Care, we have the opposite. When I turned 86 my health care already almost free became totally free. UHC wants to keep me alive as long as possible.
You and I can hardly imagine how introducing that topic into 2020 presidential campaign might be handled.
Only-NeverInSweden.blogspot.com
Citizen US SE
20
Many of my fellow citizens are deluded, by the basic nature of the society they form a part of. Products are sold to us, according to our assumptions about what is 'good', 'desirable' in later life.
We're slow to stop to think: 'Is this the best resolution, what I really would most want (to spend my savings on)?'
Instead, we buy in, relatively thoughtlessly, and the investors' profits surge.
When will people be taught to chill, even in old age, to consider what they are signing up for?
6
As long as our eldercare is designed by the invisible hand of competition between institutions seeking to make money from care for the elderly, it will fall short and abuse the elderly. The urge to make money must be tempered by rules and regulations so that the only way to make money is to provide decent care. Within such a framework, competition will work the magic ascribed to it. When such a framework is lacking or inadequate, competition will be a race to the bottom.
20
My 86-year old mother, went into hospice care at an assisted living facility this past February. She lasted 5 days. In those 5 days, and despite my father being at her side 10-12 hours a day, mom fell out of bed 4 times during her stay.
Now, four months following her death, my 88-year-old father went into the memory care unit of an assisted living center due to issues surrounding a bad mix of prescription meds that caused psychotic episodes. I consider of his stay there as a type of "de-tox" in a relatively safe environment. My brothers are taking an active role in his care as they live in the same town as dad.
He's doing remarkably well despite the lack of opportunities for exercise (he's always been very active), nutritionally unbalanced meals, and inattentive staff. Neither assisted living nor a skilled nursing facility seem to be the right fit. And no one in our family has enough time off, nor the ability to quit our jobs for his care.
My hope is that his stay time away from the home he worked so hard to build will not be long. But between these medical mistakes, and limited care options other than a care facility, seems he'll be at the facility indefinitely. It's been a long, complicated, very messy, and sad turn of events.
Regulation is clearly needed as quality of care takes a backseat to the love of profits...in any facility. Equally clear is how much elder care and quality of life needs to be addressed --- not a single one of us is getting any younger.
16
My mother, who had dementia, died at home in her bed, and had some limited hospice care for about 2 or 3 days (I had requested it a week before). Keeping your parents home may kill you (it nearly killed me), but you will have less guilt in the end.
1
I am uncertain what kind of assistance there is in this expensive apartment living model. There can be a van to shopping (usually for an extra fee) and doctor appointments within a given radius, a movie and popcorn on Saturday and some religious services on Sunday. The access to friends of similar ages who live in other apartments should not be as asset from which Brookfield and many others can make a profit.
Residents take a test before they move in to gather information regarding physical and mental abilities. If both members of a couple pass the test, they can move in to ‘assisted living’! If only one of the couple passes, they will be split up based on the needs with the memory care building usually being down the block.
The model reminds me a bit of college dorm life sans the exorbitant costs.
5
Assisted living is a part of a scaffolding of options for people when the grow older. Home care, assisted living, memory care, and hybrids all exist. The key is financial planning. My parents 83, and 90 are in an assisted care facility that is wonderful. They are highly practical and the facility offers the capability of likely scenario that one of the two will require additional levels of care. They were of a generation where consumption was frowned on and savings lauded. While each of our generation is fortunate to have the capacity to help, my parents both worked into their 70's (my father was 79 when he retired), never made significant amounts of money, but saved, never going into debt. The real challenge is to imbue a savings mentality into this generation
9
@Chris This argument is easily disproven. The notion that people today have the same disposable income as previous generations to maintain a “savings mentality” is not remotely based in fact. Wages have not kept up with basic living expenses, period.
15
Costs of assisted living and memory care facilities depend on where in the US one lives. The author writes that "assisted living already costs between about $4,800, on average, each month, and nearly $6,500 if dementia care is needed." The concept of "average" doesn't help us, because my mother lives in San Francisco, one of the most expensive cities in the country. She moved from a one bedroom apartment in an assisted living facility, which cost $8500 per month, to a tiny bedroom in the memory care unit in the same facility, at $9200 per month. She is getting excellent care at this place - but once her moneys run out, which will be by next year, I wonder whether they will let her stay on. If not, we have no idea what we'll do.
18
@Karen P.-As I note in my comment accepted 15 minutes before yours, I am less well informed about how this situation is handled in Sweden than I am about medical care in general, for me completely free since I turned 86.
I will go out on a limb and state that I can be sure that care at the center I mention, with Swedish name Styrsöhemmet, 100 meters from where I am writing this, costs very little for those who qualify. I have close friends, dual US SE citizen husband like me, and SE citizen wife, where the wife's mother spent her last year or years in Styrsöhemmet. They could tell me for at least that n = 1 example what that cost and what the conditions were.
Will try to find out.
Only-NeverInSweden.blogspot.com
5
Well written insightful article for the remaining middle class families in MAGA.
Poor people in the U.S. do not need to worry about assisted living. If homelessness and lack of access to medical care doesn't speed you to heaven's gate, a brief residency in a Medicaid nursing home will do the trick.
33
Poorer people often keep their parents at home. Most of my friends kept their parents at home.
3
Aging parents who have mild to severe dementia and/or in denial of their needs seem well represented in these comments. Financial issues as well. Bottomline though is if we don’t plan for aging when we are cognitively capable of doing so, those decisions will be made by family members and in too many cases, strangers. And will likely cause emotional stress for all involved. We boomers are particularly susceptible to magical thinking about how independent we are, and how little help we need from others when the reality of being human is interdependence. The time to move to Assisted Living is before you need it, and planning financially for the additional 24/7 care many of us will need given the proclivity of medicine to weigh quantity over quality of life. Given that so few Americans seem able to save for retirement, let alone the additional cost of long term care, the US is entering a crisis in aging adultcare that will challenge the economy, communities and families for decades to come.
18
I lived in the Skilled Nursing Facility for four out of the last 6 years and can tell you that these places require extreme supervision. as a former attorney I can assure you the liability is extensive. the night staff spends most of their time at the nurses station looking at YouTube. people of designated as dead at 5:30 in the morning because that's when there's a staff change and someone bothers to check on beds. The food I can understand is plain because there are so many people with so many different needs. but there is no excuse for not having activities or spiritual support. all we have is cable television.
the staff represents themselves as being professional when they are anything but. the Physicians on staff or on call are usually foreign trained and first became employed at this country in psychiatric situations which is to say that no one trusted their medical judgment to which I concur. Ditto w many foreign nurses They could have killed me were I not alert and had prior experience in the medical insurance field. I even saved the life of a roommate from hospital incompetence w inst.
Learned helplessness is what the staff offer, so one day I just walked out I'm thankful to my roommates for falling into that malaise and thus alerting me to their retention technique.
I am thankful that I was able to recover sufficiently to go back to my tiny apartment and am self-sufficient for now. It will not last and I don't know my next move, figuratively and literally.
37
Beautifully written. I am 82 and have the rare privilege of working and earning enough to live comfortably with my wife who is my age. We have been together since high school.
We have had the experience of taking care of my wife's mother for many years and it was a wonderful experience for all of us. Then, she had several strokes and her health went downhill until death.
I have a fear of either my wife or I going to an assisted care facility but I can see the financial handwriting on the wall and will continue to work until the Senate decides I am too old.
I am away for most of my work day and commute by automobile to the Capitol on a hellish commuting route.
I have a concern about dementia because I know many of my friends who are in their 90s who are experiencing early stages of memory loss.
One interest that keeps me going and happy is researching policy to fit our future society. So, reading and talking to the young adults at work about my research interests is rewarding.
I have worked on energy technology and applications for most of my adult life. I have been a Navy Officer, a U.S. Senate staffer, CEO of a nuclear waste isolation R&D company, and I have been engaged with Dr. James Powell, who passed away on Memorial Day while a resident of an assisted care facility, in trying to promote a Superconducting Maglev transport for passengers and freight trucks (www.magneticglide.com) in hope of deploying a 300 mph guided transport to reduce congestion on highways.
17
Alarmist media reports about assisted living were a major factor in my stepfather's decision to keep him and my Alzheimer's inflicted mother at home. My siblings and I urged them to seek AL solutions, especially one with a graduated system of care and supervision as their needs progressed. But he always cited "scams" and "nightmares" reported in the news, such as the alligator story, and insisted on going it alone. When my mom's disease was in its early stages, he could barely cope with caring for her while maintaining the house. As her dementia and care needs increased, he and the house started falling apart and my mom's health rapidly declined to the point where we needed to step in. He died before she did, likely from the strain of it all. By the time my mom went to an AL with a memory-care unit, it was already too late for her to have any positive experience there. Had my stepfather been exposed to more positive reporting about the AL industry (surely reflecting the majority of experience and not the outlying abuses and fraud), he might have added to the length and quality of their final years by moving them into a better care environment.
13
A dear friend was in an assisted living facility that is rated as one of the top ten in the country (in Virginia). Wonderful when she was healthy and mobile, the care as she got really old was appalling. Finally moved into the “nursing wing” (a separate building, even more expensive) where the care plummeted. I mean appalling. I’d pop in unexpectedly and red call lights would be blinking up & down the hall while the staff sat around and gabbed. The medically trained staff. As many have said here, the immigrants with less med training were SO much better at caring for the patients.
Her daughter who would pop in daily before during and after work said “ it would be so much easier if she were IN my home,but she wants “independence!”
I was carer in her home
for an elderly friend single who had no siblings and died with no real family. I just hope I built up karma with her - and some unsuspecting young person will be MY carer when I’m older and need it!
13
It is so different in Japan - a private top of the line nursing home for Alzheimers patients with private room which looks like a resort is after subsidies 750 US dollars a month. This will jump to 1400 a month when my mother in law moves from mild to full blown Alzheimers and hospitalized care is required - no hidden costs.
But then we are talking about a country where a CT scan is $1.80 and my father in law's two week stay for heart surgery cost less than my overnight visit to the emergency room ( no surgery) for a gallbladder attack. His out of pocket was 200.00, mine was 4000.
We are the richest country in the world - but something is out of whack - and some things shouldn't be for profit.
51
We are going to grow old, and most of us will grow old in the USA. Those of us with means are likely looking for alternatives.
Assisted living works okay for my 99-year old mother who owned a house when Microsoft boomed in our hometown, then cashed in and still has most of her marbles. She structures her day around trips to the "wellness center" for medications, with an early supper in the sumptuous dining room with her cohort of wheelchair-bound but lucid ladies catered to by nice kids earning minimum wage. I, on the other hand, am looking at converting my basement into a separate apartment, so some nice kid going to the local community college will find me before my fallen corpse goes putrid and the cats eat me. Such are modern times.
46
Assisted living facilities can be much better than described in this article. Some are better and some are as described. My mother, who suffered from dementia, lived in an assisted living facility for several years before she died. The facility had 24/7/365 care provided by at least one nurse on each unit together with a significant number of aides. As my mother became sicker she would relocate to a unit with a better ratio of staff to residents. My siblings and I visited often; her care never suffered. It wasn’t cheap, but it was as good a quality of living as dementia would allow. Obviously not all facilities meet this standard, but it is possible. I do believe we need some form of government support and oversight for these facilities. Most people are not able to afford these high quality places. I for one would gladly pay higher taxes in exchange for better care for everyone as we age.
20
This article made me angry. I'm 78 & relatively healthy. I can certainly take care of myself. I'm happy to be alive, but I would rather die, than be a at the mercy of caregivers in a nursing home. If I get to a point where I can't care for myself, what I would want is a guarantee of assisted death. All of us die eventually. We need to accept that. So much better, I think, to end life, before it becomes a nightmare, which can only get worse. In any case, it must be for the deteriorating individual, not relatives or doctors to make that decision.
62
Remember Death Panels?
when the ACA was debated, a Republican law maker suggested that doctors should be reimbursed for talking to their patients about end of life care. Obama picked this up as a good idea. the Republicans cried foul and the death panels were born. it was probably one of the driving force if the tea party movement.
and yet, we still need individual discussions about how we want to grow old. how much really we want to live another day. we need this discussion with our peers, our children, our doctors.
18
For once, I cannot do as I often do here, compare a medical care situation in my USA with the care I receive, cost-free here in Universal Health Care SE at age 87. That is a good thing. Why?
The short answer is very simple. I might suddenly need such care.
I write on an island off the coast from Gothenburg in a house about 100 meters from Styrsoe home, a center known for its ability to provide high-level full-time care for people who can no longer care for themselves. In other words, the model for such care is just a stone's throw away and we have known friends or parents of friends who got such care there to the end of their lives.
But we have known others in seemingly similar situations who had to be taken care of at home or in a place in the city of perhaps lower quality.
This article just scratches the surface and uses only an indirect approach. Why not one that simply tries to identify places like the one I identify, Styrsoe home, and then ask what percentage of the population that needs such care can get it?
A formidable research problem. One that perhaps should be tackled by two-country research teams. Such USA SE research teams exist.
Only-NeverInSweden.blogspot.com
Citizen US SE
Imagine the research challenge faced if I were a researcher and wanted to compare care available to population sample x in a single county in Sweden with a population sample y in New England of the same SES defined level.
Formidable.
6
In the USA, we pay taxes so that we can make endless wars, and so that billionaires don't have to. It is not a capitalist system, but a feudal one. I'm surprised people have not risen up to overthrow our government, because they ought to. I would welcome an invasion of foreign troops as a liberating army, to free me from this tyranny.
13
@Larry Lundgren I have a reply to Grunt that concerns his/her comment on assisted suicide - choose your phrase for that - that is relevant. Here is the URL but Grunts comment is just a few minutes after my comment here so you can just scroll up to find it. The subject is of extreme importance.
https://www.nytimes.com/2019/08/29/opinion/sunday/dementia-assisted-living.html#commentsContainer&permid=102278256:102278291
1
Just vote for Bernie. We’re going to fix this.
1
My mother is now in assisted living at a retirement community where she has been for several years. The good part is that 1) she is getting excellent care at a well-staffed, well-run facility, and 2) her monthly price actually stayed the same when earlier this year she went to assisted living. The downside is that every small additional thing they do for her comes with an added a la carte fee, much like the airline industry. A ride to a doctor appointment at an on-site facility costs $20. A nurse gives her prescription eye drops daily, with an additional fee each time. The costs add up very fast. But this has to be okay, because with both of her kids working full time, family could not give her the same level of care.
9
Assisted living is certainly not the right fix for our old parents. My father was left lying on the bathroom floor for hours after he fell. He was finally discovered by the morning staff who came to get him to the dining room. He had just been there for one week. No one checked on him through out the night. He was 90 years old and unable to walk steadily after a stroke. Subsequently he died from the fall.
We need our government to regulate the system and keep it under inspection for license renewal. And, immigrants would be happy to get this kind of job in assisted living as they come from strong family connection, and cultures with much more respect towards aged people.
I wonder if this article explains why Trump keeps marrying younger women as he ages along.
21
Thank you for writing this, Ms. Anand, and I must say I find all the comments on here to be overwhelmingly sad. Far too many people in our country are faced with horrible problems with a broken "system" exactly at moments when support, compassion, and understanding of unique situations is what is most needed. Watching people suffer and die is hard enough; having few to no choices about how to manage that suffering is something akin to a living nightmare.
Like many people posting comments here, I have been through various horrific iterations of the medical industry, from watching my teenage sister die of cancer to being with my beloved grandmother for months on end while she languished and slowly rotted in a hospital bed, despite asking with complete cognitive awareness and logic that she not be made to suffer any longer.
I have seen the benefits of assisted living. However, it was really only a benefit as long as my own mother drove 120 miles several times a week to oversee medications, nursing reports, doctor visits, and other monitoring. In truth I don't understand why we paid them; they should have been paying her.
It seems a general truth now that no matter where one falls in the medical system, having an advocate is a primary necessity. I need not point out the profound and tragic irony of needing a companion to guard one against the very machine that claims to prevent and alleviate pain.
26
As a paramedic who responds to one of these facilituies here in town several times a week for falls and other emergencies I can tell you these places are only out to make a buck. They are not qualified to handle the respective population they house. Often a token RN ison scene 9-5 and never on weekends. Ours in question starts at 6k/mo. and you get a "friend" - an unskilled and unlicensed helper (not even a CNA) who should not be put in that position to begin with. The turnover in this job is very high. The facility provide all kinds of entertainment, wine country day trips etc...everything but what you really need- trained medical staff who know what to do in an emergency and can deal with long term problems in the aged. Every time there's even a small emergency (bump on the head etc...)they call us and can't wait for us to take the resident to the ER and out of their hair. They simply admit their incompetence by calling us 7-10 times a week or more for everything. We need to plan for an aging population but these overpriced hotels claiming to preserve your dignity through "independent living" is not the answer.
76
@Way better.... This was my experience with my mother, grandmother, MIL and FIL at both for-profit and not-for-profit assisted living facilities and SNF. Call the ambulance for every fall or bump -- this avoids liability and hands the problem off to the ER. The family will be called and everyone has to spend hours in the ER while the patient gets the million-dollar workup, all of which could be avoided if the facility weren't so concerned about liability and had someone competent to assess the seriousness of the injury in the first place.
7
People with advanced dementia fall. They also lose the ability to swallow properly. My mother fell over 70 times in the last year and a half of her life. She had wonderful, AMAZING care givers who worked very hard to keep her safe, but she was basically impossible to keep up with 24/7 facility or otherwise. In California as apparently in most of the country, it's illegal to restrain seniors in bed or wheel chairs. The industry standard in nursing homes are alarms which often don't prevent falls. Even they are considered restraints in some places and not allowed.
It's also impossible for private individuals to get someone admitted to a nursing home which would be more appropriate than assisted living in many cases such as ours. Mom had to dive out of a wheel chair and break bones before she qualified for a nursing home. Then it went to 11K per month at Oceana County Medical Care. The laws & regulations while needed are not keeping up with life spans and now are not logically applied. The facility monthly rates given in this article are also substantially lower than what I encountered in 2015-17. In the end we blew through the life savings in about 2 years.
As far as the family suing because their 96 year old Mother fell 3 times in one month. Expectations of perfection aside, before qualifying for the nursing home my Mom fell 18 times in one week because she could not legally be restrained or tied down and we could not afford round the clock constant attendants.
21
Having read many of the accounts written here, I am struck by how caring and compassionate people are. My father is almost 95 and he now lives in an assisted living facility near me. It’s very expensive and we hope he does not outlive his money. He has multiple health problems including dementia. He is a retired physician with genetic longevity and he always exercised, never smoked and followed a mediterranean low-fat diet. But the inevitable decline of old age caught up with him, as it will for all of us who are fortunate to live long enough. As I contemplate my father’s and my own mortality, I can tell you this: healthcare and care for the aged should NOT be a for-profit business in our country. It’s time for a change that puts people’s basic needs above corporate profits. It’s time for compassionate end of life options that people can put in their advance directives before they have cognitive decline or worse - yes, assisted suicide should be legal. It should be a personal choice. And all of you out there, you have a choice. You can support candidates for public office who will implement policies and programs that help people like you and me and our parents and not just kowtow to the greed of industries that profit from human misery, such as the long term care, pharmaceutical and health insurance industries that reap billions in profits while average working people can’t even afford healthcare. Please listen to your conscience. Please vote.
76
The quoted prices--$4800/month for assisted living, $6500 if memory care is needed--is what we paid recently for my uncle. Well, HE paid. He could afford it, fortunately. We'd been down this road with my father years ago, who had more limited means.
Each facility is different, and each person is, too. While assisted living is not for everyone, staying at home isn't, either. In his case, he needed 24/7 supervision, which would have been incredibly expensive in his home. Plus the expenses of the home. Plus, and no one thinks of this: who manages the caregivers? Once in the AL facility, he relaxed. The anxiety of running the home ebbed. He was relatively well both physically and mentally, so it was a good fit. One issue: his wife led their social life. Because she was gone, he was not interested in socializing with new people. Not a perfect end of life; he just wanted to be with her. But as these things go, he was well taken care of, and close to the family. (None of us could provide full-time care in our homes.)
Moral: choose carefully, and don't be wedded to what works or worked for someone else.
13
Wow, I didn't realize Connecticut would be so much cheaper than NJ, where prices are now about double what your uncle is paying.
This article is written for affluent Americans. For many if not most, assisted living is not even an option because of the cost.
78
I cared for my late aunt at the end of her life, and she had paid into the long care term insurance, and I believe she spent thousands of dollars for this. When it came time to collect on this insurance they treated her like a criminal and did not want to give up the money for Homemakers and Companions, which cost $18 an hour for a total of four hours a week. Out of all the thousands she paid into the plan, she only collected $600 for the service. If she had placed her money into an index fund and let it increase in value, she would have had the money on hand to pay out of pocket. This is how I am planning for my end of life care.
48
This opinion piece reads like a one-sided hit piece against Assisted Living instead of addressing the bigger issue that demographic trends will leave us without an adequate caregiving workforce to safely care for our older adults -- no matter their location. The skilled nursing facilities where I work as a physician struggle to hire and retain sufficient personal care aides. A nursing home is a medical institution that is an undesirable place to reside long-term unless 24/7 supervision with skilled nursing on-site is truly needed. Even then, the bad outcomes described in the article, like falls, also occur in nursing homes. Long-term care in a nursing home is more expensive than Assisted Living, and the mounting costs, usually covered by Medicaid, will strain our social safety net in the years to come. Layering in support in the community (whether Assisted Living or at home) is far preferable, but again it can be difficult to find sufficient paid caregivers to support aging in place in the community, especially at the rates paid by Medicaid for low income older adults. Family demographic trends (including fewer children and children living further from parents) leave us reliant on paid caregivers, although it is difficult, injury-prone work with low wages and is often performed by immigrants. We've got a problem on our hands, and it's not Assisted Living.
22
It's weird that we can find money to give billionaires a tax free ride, but can't find money to care for the homeless, for children and the elderly.
3
Here I am, on the cusp of my 67th birthday, still employed full-time, active, exercising, traveling, etc,, and in complete denial of what's to come because I honestly do not have a plan for growing old. My parents both died quickly, younger than I am now, and at the time I thought it was a shame. But then we cared for my 90-year-old mother-in-law in our home until her death from dementia at 93, and I now think that my parents had the better deal. It was awful. I cursed the doctor who had performed a triple-bypass on my MIL when she was 80(!), allowing her heart to continue to pump life through her body long after her mind had left the building. I don't want to live like that, nor I am interested in giving all my money to an assisted living place to play bridge all day (I don't even know what that is). What I'd like to do is to keep working, and die in a plane crash on a work trip, and let my kids collect the bonus $250,000 they'd get if I die on a work trip. How do I arrange that? It seems no more a fantasy than coming up with the $9000 a month I'd need for assisted living.
67
My parents both died suddenly in their early 70s. After reading this article I hope to be as fortunate.
4
My mother is 96 and in an assisted living facility. Before that, she lived with my family for 7 years. She is my mother, and I love her, but ... it was a horror. Our house is less than 900 square feet, and even though my family only consists of me, my husband, and our teenaged son, we had little to no privacy or family life. Mom sat in the living room, with the TV on CNN constantly, and criticized and complained about everything. I had to quit working when I realized she could not be left home alone: she would try to “manage” things by herself and end up breaking things, starting fires, letting strangers into the house, falling, etc. She refused to participate in any organized “senior” activities, and would only consider doing things she once enjoyed but no longer has the stamina to do (such as going to museums). And even though she has difficulty walking and has mild dementia, she is otherwise very healthy and wouldn’t “qualify” for nursing home care. And most assisted living facilities were way above our price range ( more than 3 times our mortgage!) Nobody seemed to have any helpful suggestions until I contacted a senior advocate, who helped us find a facility that accepts Medicaid. It took a year of spending down her meager assets and preparing the paperwork, but she is finally settled into a relatively good situation. She actually has more mobility and socialization there than at our home, and it is much less dangerous for her. But we were lucky to find it.
39
Half of all US health care dollars go to 5% of the people, and an outsized sum of this– hundreds of billions of dollars – goes toward the last weeks and days of life. If, instead of performing a dangerous organ transplant to a 94 year-old patient who might walk down the hall three more times, we could think more of the 37 year-old Veteran with an autoimmune disease, we’d be living better.
18
Yep. And let’s also recall what we spend on care for hopeless newborns. Not ro mention the brain-dead.
After my father in law passed away we moved mom to an assisted living and hired an outsider care giver to be with her also, but shortly there after, she was moved to memory care within the same facility. Even though it was a very expensive place, we still had outside help for her 24/7. Otherwise, she wasn’t going to get the car she needed. They were the lucky ones, financially well off to afford the best money can buy. They worked hard and saved for their old age, and either my husband Or I were there every day to make sure she wasn’t neglected.
Not everyone is financially well off, So thousands and thousands of old folks are housed in hospices, nursing homes, and assisted living facilities. My husband and I volunteer at 2 hospices, and it is very depressing. Most patients are incapable of doing anything for themselves. They need to be changed, bathed, fed, and mentally unaware of who or where they are. Our medical advances are keeping people living longer without quality of life. Every time we’re there, we imagine ourselves old, sick, breathing being cared for, but no quality to our life. We have talked about finding a way to die together with dignity, long before getting to that stage.
24
My father had polio while in college, so his mobility was always impaired and it degraded as became elderly. Then dementia crept in. My other cared for him in increasing capacity for 56 years, the last couple requiring outside help. He died at home only because we were able to adapt their home. He did not want to die in a nursing home, it was one of his greatest fears.
My mother, after a year alone (but in essence for longer), moved to a continuing care facility. She is fully independent, and her social calendar is robust. There is progressive amounts of care provided (even a special memory unit) with ever increasing costs. But it appears ideal for her, and she is very happy. A cousin spent the last months of her life fighting brain cancer there, so I know firsthand the care can be outstanding.
But as mentioned by others, it really is dependent on so many factors; personality, facility, needs. Some folks thrive, I know my mother-in-law would never leave her room. Regardless, it takes some real investigation by the client and their family before making a commitment. I am glad we did (and didn't just take my mother's word for it).
6
So I, a single only child with a bohemian lifestyle took care of my mother for 3 years at home on her teachers retirement and social security. I visited the "facilities" people asked me to put her in and they were sad and deplorable. If you can't give up 10k, the places are warehouses. My mother had never shared a room with anyone since her husband died. I totally sacrificed to find her HOME care. I gave up my social life. But you know what? My mom knew me until the end. She did more for me
her lifetime than I had ever done for her. I was honored to care for her. Was it tough? YOU BETCHA!!! But worth every moment of sacrifice. Unless you're parents have oodles of savings don't even think about it. Everyone has to make their own decisions. Mine turned out well with all the struggle it entailed.
32
But who is going to take care of single only children when they get old?
3
People who have the money can buy Long Term Care (LTC) insurance. It is pricey, and like life insurance, costs more per month the longer you wait to get a policy. And of course those facilities that are more expensive are usually better staffed and have more amenities. When my dad was a candidate for a memory unit at a local nursing facility, the business office described him as "golden" upon hearing of his LTC policy. Yes, the nursing facility would get well over 6K per month until his death. Perhaps the Japanese have something here...provide for everyone who gets old. But that won't wash here, at least while the GOP is calling the shots. Comfort to the financially fittest.
15
Ms. Anand,
Not everyone wants to end up in a SNF or Assisted Living situation. I have no intention of paying large sums of money to exist in a place where there is minimal caring and maximum profit going on. There are many ways to die with dignity in this country, but aging in a facility isn't the way for me.
20
After reading all the frightening comments here, I am glad I learned Spanish fluently many years ago, as there is abundant help here in my agricultural town at $15/hour.
Or, I can join the hundreds of thousands of expat Americans who live in paradise in Mexico on peanuts, and hire a compassionate, competent Mexican to care for me in my home there. Though the Mexicans generally speak sufficient English, so it's not a problem for the expat Americans.
That is my best plan, as I do not want to give up my children's inheritance to assisted living or a nursing home.
23
Initially, assisted care was a great option for my grandmother. In her "apartment" she had as much privacy & autonomy as she wanted. Make simple meals, read, whatever. Or she would go to the dining room/join activities when she wanted company. Her life long friends had stopped driving or died - so our family got a lot of comfort in knowing that if she was alone during the day - it was by choice. But, as this article points out, these facilities go only so far. As her health and faculties diminished, family still had to make sure she was eating. The dining room became way too far for her to get to on her own (who designs these places??). Rent continued to go for activity buses that she could no longer use, but there was no one to monitor her medication. Move your loved ones into these places for the social aspects. But realize that you are not off the hook for providing care and understand that assisted care is only a temporary solution.
17
Nursing homes are designed to keep the residents safe. Period. Safe. I have let my kids know- "Please don't try to keep me safe."
Most of us are not gonna get out of this life without some sort of unpleasant dying experience. I know there are no guarantees, but given a choice between 5 years in a nursing home and a fall that kills me, please, please, let me have the fall. And don't go blaming anybody for my fall. Bad things happen, especially to old people. I have no desire to be warehoused for five years causing my family financial ruin.
73
No one is safe in a nursing home.
2
Well said.
1
They have doctor assisted suicide in your state, no?
1
In Florida the situation is even worse. The key is that an ALF is a corporate structure and is liable to the same pitfalls that afflict other such structures. Namely, satisfying greed, corporate boards based on ther bottom line and shareholders seeking a return for investment, along with associated corruption. The seniors relegated to such an existence are merely fodder for a profit orientated scam. All at he cost of
aged seniors who have little or no choice. An audience held captive.
F3
10
It is so stated that perhaps the fastest growing population is that of elders. The title of this article speaks to the essence of it all... that is the reference to the" Assisted Living Industry".... It is essentially a for-profit capitalistic organization which should and must be held to a very high standard. It should be constantly monitored in order to provide the very best care for its clients and hopefully not always monitored and protected by the 'mighty dollar'... but the human condition...
5
My mother lived in assisted living until she could no longer take care of herself. We put her into a full care facility; she was dead within 6 months. Full care facilities are for cripples and people with full dementia. Once there, surrounded by people who can no longer function as full humans, you may as well be dead already. You quickly lose interest in living. If you don't have dementia already, you'll soon go crazy living with people who do.
That's why people want to live in assisted living as long as possible, even if there are risks of injury or death. Assisted living is still living. In a full care facility, you're just waiting to die. There's more to life than "safety". My Dad is in assisted living, and hopefully can stay there for several years more. I'm not going to push him to move because he'll get better "care". He knows the deal; he'll take his chances.
29
Sorry, she was going to die. Who says another year, two , five or so is an entitlement or better than the inevitable -- which is death?
I am a nurse who has worked with the geriatric population for around ten years. Believe this article. I used to wonder, when I was younger and more naive why more Assisted Living facilities were being built rather than Skilled Nursing Facilities. The reason there are so many Assisted Living homes is because it is a good business model for shareholders. Skilled Nursing Facilities are not a good business model. That's it. NYT, thanks for the responsible journalism.
90
I have told numerous friends and my children that I will throw myself down a flight of stairs, drown myself swimming or take an overdose of pills, before ever living in an Assisted Living facility. They are a complete scam - business first, health care second.
My mother was moved 3 times to different facilities unfortunately, due to siblings disagreeing over what was "best for Mom".
All three were very attractive facilities and all three were lacking in caregivers to give the proper attention and care to their residents. Therefore another common characteristic became apparent at each facility. Any family with financial means brought in outside help to stay with their parent in order to make sure that they were properly taken care. I wanted my mother to stay in her own home with 24 hour care and she had he means to do so, but my siblings disagreed. My mother took the situation into her own hands, god bless her, and passed away a few weeks after she started to refuse to eat.
15
The person who wrote this doesn't understand what assisted living is all about. Not all older people need a nursing home or round the clock services or have dementia, etc. A former NY Times reporter and university professor should have performed more research. As my mother and father turned 90 their health deteriorated. They did not want to want to move in with one of us. But they couldn't drive anymore. We could not continuously leave our jobs in New York to fly to North Carolina. They moved closer to us. They enjoyed a better lifestyle in the assisted living facility. There was a medical center on site with all different types of specialized doctors working different days. They no longer had to worry about driving to the doctor's office. They could take an elevator. There was a fancy restaurant on-site - with take out if they wanted to eat in the apartment, as well as a cafeteria-style deli. A small grocery store was in the main lobby. My mother did not have to cook if she didn't want to. She chose to have a cleaning lady every other week. The windows were cleaned by the facility-inside and out, two times per year. There were daily buses to the supermarket, as well as to Broadway shows. My mother and father were able to live an independent life with all of the conveniences at hand. When they had a medical emergency there were buttons all around to call for help-which showed up in less then 3 minutes. And living close to us we saw them every week.
27
These types of facilities are for the wealthy. There is a facility like this in Mystic, Connecticut and it is beautiful and very high-end. Unfortunately, it is unaffordable for the regular working class blue collar worker. I wish there was more for this population.
19
@Tom
With respect, this is precisely what the author describes as being the definition of an assisted living facility: a place where people who don't feel like cooking anymore don't have to, where people who want to be driven to a film or a show or go pick up treats at the market can do all that and still feel taken care of.
Her exact point is that most elderly people get to the point at which such a life is no longer even possible. Dementia, pain, ailments too many to mention slowly deprive many elderly people of even thinking of a nice communal picnic much less taking one.
Ms. Anand makes the point several times that these facilities are fine for people who can still function. They are expensive, dangerous, and possibly pointless for those who cannot.
I am glad for you that you were able to watch your parents have an apparently smooth decline. But I think Ms. Anand's research shows that your experience is somewhat in the minority.
As someone who has been present for the long slow decline of three grandparents, my experience is that these places can be wonderful, but there comes a point at which, for many, it would be far better to replace "assisted living" with compassionate dying.
24
Poorer people keep their parents at home. I had to hire someone to come in during the day (I tried daycare, and they drove her back to my office after 30 minutes - because she cried) and it cost more than my salary, but I could not leave my job and lose my health insurance. Luckily mom had some savings - the gov't took a hefty chunk of what was left after she died. I keep hoping foreign troops will invade and liberate us from Scamerica. I've had enough of this ripoff country.
3
The descriptions of assisted living in most of the comments are grim, but here's a different example.
My parents' situation in central Iowa was completely different.
It was the or one of the first "life care communities" and is a not-for-profit organization. My parents shared a 2-bedroom apartment for about 10 years with their own kitchen (and 2-car garage). When my father lost his mobility, he moved into the "health care center" (skilled nursing) where he had a private room with bath, and meals in a small dining room--two floors down from my mother's apartment. And later my mother moved to the Health Care Center and was also beautifully cared for.
Many of the other residents were former neighbors and colleagues. My father took up playing pool with other guys. There were so many activities to share or ignore.
The nurses and LPNs and nursing assistants like their jobs and tend to stay for years as this is one of the best places in the area to work. They create a wonderful atmosphere for each other and the residents.
24
@SPPhil Very lucky you/your parents could afford this.
2
This is a great editorial. My family went through many of the same experiences when we put my parents in an assisted living. The people who ran the place promised a lot of things they never delivered on. Also I would say that this country has to start paying the people who work in these places more money. I talked to staff who were working other jobs and barely making ends meet. If we can't pay workers who take care of our most vulnerable population a living wage, what good are we?
40
@Peggy Sherman Workers who care for children, the disabled and the elderly are paid little because we as a society do not value any person who is not "productive." That is a terrible indictment of our capitalist economy.
4
@Peggy Sherman
Oh so true! Every caregiver encountered was worth their weight in gold to us!
1
Ms. Anand suggests that we in the Unit
ed States might look at Japan for guidance concerning long term health care. According to Ms. Anand Japan has mandatory participation in such a program. Moreover, when a citizen turns 40, he or she must pay an extra tax to support that insurance. Japan has confronted the reality that caring for its aging population costs a lot of money
When we consider the political struggle over the Affordable Care Act since 2010, with opponents declaring that they don't want to pay more taxes to sustain its programs, how will we convince U.S. voters to support higher taxes for an even more expensive long term health care program?
I assure you, notwithstanding the rationality of the Japanese insurance program for its aging population, the usual right-wingers here will be spitting fire against high taxes and the loss of personal freedom if the United States tries to adopt a similar program.
I applaud Ms. Anand for giving us her perspective on this very important issue which our youth oriented culture fails to address. I hope that it will help stimulate discussion that leads to a political will for a resolution of this
problem. Unfortunately, I really think that such a program lies decades in the future.
14
More than half my income already goes on taxes and health care.
1
They treat symptoms. It’s alarming how many elderly are falling and go through the “healthcare” system where my mothers broken hip cost $87,000. Medicare paid $10k. With literally millions falling they should be in therapy learning balance and experiencing fake falls with a harness. They found an amazing ability to balance afterwards.
Instead we have an assembly line of factory surgeries and ship them back to the fields. The incentives are all wrong.
12
Originally from Oklahoma I have lived 50+ years in England. That means that my family and I have had the benefit of the National Health Service over those years. Most recently I attended a series of classes for people with balance issues and/or osteoporosis. The classes were conducted by NHS physiotherapists in my local community hospital.
Although "in good nick for my age" (75) - according to my doctor - I found the classes hugely beneficial. In the past I have had several falls while out and about, breaking my nose and my right shoulder on different occasions.
My balance has improved, my posture is better, and incidentally I've lost a couple of inches around my waist - and I'm not overweight.
In my long winded fashion I am agreeing with HowMuchIsEnough about training on balance.
Even more I am again praising the National Health Service which provided amazing care for my dear husband when he was ill with a rare cancer, has provided hearing aids and batteries for both me and one son and on and on. . .
I cannot, for the life of me, understand the objections to Medicare for All.
10
An assisted living facility is there to assist, not provide comprehensive care.
12
Falls and injuries are the major worry for most children of those in NH or AL facilities.
Yet even with someone in the room, other than stopping someone from getting up, there is little one can do to intervene with gravity doing what it always does. And most floors are not padded (clean up needs over rule carpet) even if that may help protect a few from injuries.
I read the section about Japan being decades ahead of us in care, but failed to extract what the secret was that provided improved safety. A bit more detail would have been welcome, but as for now, there is just the hint that somewhere else there IS a secret, but I'm thinking not really or it would have rapidly spread to other areas.
Growing old is a burden. The financial cost to families and medical care after a fall or other injury is enormous. As has been told many times in the past, these are not our golden years.
14
95% of the assisted living and semi assisted living businesses in the US are complete dumps. Insanely overpriced and almost all are severely understaffed on purpose so the owners can pocket as much money as possible. I've personally gone in person to dozens of assisted and semi assisted living businesses over the years in a few states and they were all dumps.
The only area that was nice was the room they had you go to look at brochures and figure out how you would come up with the money.
26
A very good article. I remember that, as a twenty something I felt impatient with the needs or situation of the 'old' people. But a moments thought and one knows that they will be there someday, unless they die early. So it makes sense to think about it today, and try to contribute to design of a system that can handle it constructively.
11
If you get hit by a car you will find yourself instantly transformed into a helpless old person.
3
Yet perhaps not poor.
When my body and mind will preclude me from a reasonable normal life , let me go .
We need more legislation, detached from various religions and zealous politicians , to allow us to depart this planet .
Nederland is a leader in assisting citizens to end their lives with dignity.
31
My wife is in a licensed assisted living/ secure memory care facility with stage 7 Alzheimers. She is 67. It is a safe modern caring place designed for the special needs of dementia patients. We are in a high cost area and the facility is over 8000 a month. She has no co morbidities. Nursing supervisions is excellent . This is a miserable disease but she is as well cared for as possible
13
This is no way to live, and no way to die. We need more discussion of assisted suicide.
66
Truth is that end of life is rotten. I hope to pass quickly before the worst. Barring that, I hope to pass quickly when the worst is here.
18
Honestly, if I develop dementia, I would rather die in an accident at home than fade away slowly in some ‘memory care’ unit.
There are fates worse than death, you know.
41
Thought provoking articles like this are the reason I read the NY Times.
26
I'd rather go with the alligators than caged like an animal in a urine-stinking nursing home in a shared room with no privacy and nothing left of my life but an institution's hospital bed and strangers 'nursing' me. The minute I can't care for my own needs, I'm checking out. I will not be a 'toddler' again in my life. I wrapped that up in the first couple of years. Better to be gone than an infantilized prisoner.
53
Anyone who believes people with dementia (more than the most mild form & that typically progresses) are appropriate for assisted living is fooling themselves. And if agencies are suggesting otherwise, shame on them!
Retired RN
30
Like healthcare in the USA -- obviously the living situation for the elderly (and yes 85 is an age at which many of us will need assisted living or even memory care) needs to be regulated by the government and must not be a FOR PROFIT enterprise. 15% return predatory capitalism at its very best. The problem with assisted living IMO is it's America -- if you are NOT in NYC, you probably have to have a car to get anywhere -- because of ridiculous urban planning -- where cities sprawl so people can have backyard. We must build for density so we can have neighborhoods with coffee shops, bakeries, actual stores (good bye Amazon already!).
Bloomberg's plan for small apts. was a good one for the elderly. I have visited many an assisted living facility even in NYC and they are not as ridiculous or awful as this silly essay makes them out to be. If the person (incarcerated my cousin says) needs supervision with medication that usually involves an additional fee. I know nothing about transitions from independent units to memory care -- supervised units. The assisted living where my blind, somewhat senile but fully ambulatory uncle spent his last years had decent meals with wine. But unless a family member was there to go across the street with him to the park there was no place to walk. Many of the people in were in wheelchairs.
Does including horror stories in essays make them better? Perhaps, high school seniors could be paid to help in such facilities- "senior sitting!
6
In addition to assisted living, there is "independent" living units in these assisted living facilities. These are an even bigger crock; my mother's best friend, who was still very sharp and had some mobility issues, had fallen in her apartment and was not noticed for three days even though the facility said it guaranteed daily checks.
That said, my 89 year old mother had an extended hospital stay and required a few weeks at rehab (ie. nursing home) to get physical therapy and occupational therapy. Due to a flu outbreak that quarantined the rehab floor, my mother was housed in the long term care unit (the nursing home). It was supposed to be the best facility in NY, but it was woefully understaffed and residents just were left unattended. Even worse (and this was not a memory unit) very few of the residents had family visit them. My mother's roommate, a lovely woman of 97 who was legally blind and almost deaf, never had a visitor in the 3 weeks my mother was there. Her son and daughter in law, who lived five miles away, were too busy. So sad how we treat our elders.
20
The book “being mortal” addresses this topic in depth. While safety is an understandable priority, there is also a risk of sacrificing too much to achieve it. The question is not how to keep someone alive for as long as possible. It is, how does this person want to live, and how do they want to die?
28
"The irony of assisted living is, it’s great if you don’t need too much assistance."
That is the point!
It is only a short term bridge between completely living on your own and needing assistance for ADLs in a nursing home.
The writer seems to have no understanding about the different circumstances.
11
I work with disabled elderly, mostly in their own homes. I visited an ALF awhile back and was appalled. The people were in fact supervised 24/7 because it was a locked facility. Basically it was a prison. They received meds, meals, and help with dressing and bathing as needed. There was zero social or recreational stimulation. They were literally waiting for death. I'd rather be eaten by an alligator.
28
I find it interesting that this OpEd seemed to be insinuating that nursing homes are categorically better and safer, due to their being more regulated. Have we not heard the horror stories of certain nursing homes? Heck, even the best of nursing homes still feel very clinical and sterile.
Americans tend to want to avoid death at all costs (which is obviously futile) and/or prolong it for as long as possible. This OpEd suggests that nursing homes are a more realistic way to accomplish that.
However, one might argue that a shorter life, well-lived in an assisted living facility, would be preferable to a longer life by way of a nursing home. Quantity vs quality. Each individual and family must decide for themselves, which is best for them.
21
I for one tried to bring my mom to US to stay with me once my dad passed away. She refused saying she would be around friends and some extended family. We have arranged people who take care of her and to be with her every day, from my dads pension and retirement savings and it has been working fine. There is zero concept of nursing home or assisted living in many countries on earth, but the helpers can be hired at a fraction of the cost to help out.
12
My dear. My mom’s memory unit in CT is amazing. I know them and love them.
8
Commenters are making general comments about quality of care in assisted living facilities. I don’t know the statistics, but I do know that it is a very small percentage of Americans who can afford assisted living. It is very, very expensive and really for the wealthy. Maybe that is the issue we should be talking about regarding this nation’s policies to care for elders.
34
So where’s all the money going if the staff aren’t paid living wages? Somebody is getting very rich off of this.
18
@SmilodonThey are for profit places, big profit. I read an article here a few years ago that said 40% profit. Article was by Catherine Hawes, found it in the NYT archive.
1
This article seems like an ad hominem rant. It is hard to get old and requires financial planning. As a physician I can tell you most people do very well in assisted living. It is important to be realistic about the level of care you need. Dementia is a separate problem and requires at least memory care or a CBRF. Demented patients fall often even in the best of circumstances. Families should be realistic. If I have advanced dementia I want to be in hospice. It’s the right thing.
22
@MMS--Unfortunately, you can't be "in hospice" unless you have a physician's certification that your life expectancy is six months or less. Dementia can go on for many years -- that's what's so horrible about it.
32
@me: Exactly. Dementia is as much as a death sentence as terminal cancer; but dementia can go on for years. No hospice help provided - yet so direly needed. It will absolutely deplete funds and lives of not only the victim but of the victim's family. Dementia/Alzheimers is a catastrophe on the highest order and with all the aging populations in the western world, it will hit like a tidal wave if it isn't already. For those of us who have no family, children, or SIGNIFICANT savings - not just adequate - SIGNIFICANT - a massive disaster is just around the corner. No one is addressing what will be done with the millions of seniors - most of whom are certainly not wealthy enough for ALF or Nursing Home. Will we all just be wandering the streets like zombies until something or other takes us out? And that is a serious question. Or warehoused in facilities to stew in our own juices for hours or days on end alone in a wheelchair? We don't need to live this long. Not all medical advances are good or necessary.
12
My family has had good experiences with assisted living, both for my mother in law and for close relatives who lived in them for several years. Like any institutional facility, the quality of care and support varies greatly. A good assisted living facility that provides food, activity, and strong supportive services is worth every penny (usually a lot more costly than pennies!). If the quality of care is poor, then the so-called assisted living might cause more problems than it solves. So it is a buyer beware situation -- look out for the negative facilities, but be prepared to be pleasantly surprised and relieved when assisted living works out well for a senior citizen.
10
To be super clear:
None of the patients you described could have lived in higher care facilities without paying for it . Not way can most of us afford that. Nursing homes aren’t just ‘yuk’ they’re very very expensive and insurance does NOT pay for it without specific skilled nursing needs (i.e. wound care).
So what you are saying, and I agree, is there are currently essentially no viable options for elder care for the average person in our country.
79
I wish that, in addition to presenting all the problems, you had also provided some alternative options which are more effective. Presenting Japan as a model for a different National approach is good information. But, does anyone actually think that, in our current state of national discord, our country can create a system for elder care like Japan???
17
@Howard Parnes. Exactly -- Japan and other countries cited as good examples for us are usually much more homogeneous societies.
2
The most important thing for people whether able bodied or in decline is a sense of purpose. What's needed is community care where younger residents with capacity contribute to recreation and social aspects of care for less able residents. Isolation kills the soul. We are all going to die. It doesn't need to be draconian or clinical forced and determined by economics. It can be embraced by the community and celebrated in a supervised and dignified manner. Let's create the world we want to live (and die) in.
15
There's a huge cultural aspect to this. Living with parents is the norm in Asian cultures although round-the-clock nursing help at home is being increasingly used by those who can afford it (in India). I'm not sure whether the author's suggestion of following the Japanese model is practical in the US. Whatever is the model, it is a fact that taking care of physically dependent elderly is an exhausting task. It's hard to imagine that any third party would do a good job at this.
15
I just buried my mother six months ago, my father five years ago. Both moved into assisted living in 2012 so I’ve been dealing with assisted living and dementia memory units for seven years. I know a little about it.
Their care wasn’t perfect. But it was pretty darn good. Both had dementia among other issues. With my own wife fighting cancer the past four years, I really don’t know how I could have managed their senior care, handle my wife’s care, and run my business all at the same time.
Is there room for improvement? Absolutely. But it’s not a model that should be scrapped.
38
I hope to be as self sufficient as possible for as long as possible, to be followed by a quick and graceful exit from this world.
But ending up as a meal for an alligator isn't it.
I always say, half jokingly, half seriously, that I may ask to be taken out to the back yard with my 357 magnum, and have some targets spread out for informal target shooting. And if I should have a serious accident, so be it.
14
I am disappointed that this Op-Ed offers mostly anecdotal info and zero solutions. One of the primary things that has to happen amongst generations of family members is the conversation around elder care and EOL. Legal doc's (such as DNRs, trusts, POA's) need to be executed. And in relatively "young old age".
My Mom had everything in place and updated after my Dad passed at 72YO. My sibs and myself lived/worked all over the country and overseas but we were able to keep her in her home, the last year w/some CG support, until she was 91. In excellent health all her life, it was the catastrophic falls/breaks/ER/surgery/Rehab cycle that did Mom in.
I can testify to nice AL for those that need little help, absolutely atrocious though supposedly highly rated Memory Care in which Mom w/only MCI was the only verbal person in her group and almost entirely unsupervised, to excellent care in an AL run by a RN, Medical Director on staff, many RNs on staff, very little turnover in 4 years.
So yes, it's highly stressful and emotional and requires a lot of work on the part of the family members/ CG's. The local Alz.org (though my Mom didn't have Alz) was most helpful and I will continue to donate to them.
9
Important and useful story; assisted living is essentially a hotel with a few overworked med aides and often one nurse on call for dozens if not hundreds of residents. It is not full nursing care. Families wind up providing lots of additional care.
In our health system, patients (and their families) are advised to endure grueling procedures, surgeries and treatments, which may have little benefit and be exhausting and have few positives for patients.
Hiring in home health care is difficult but could work for some, and may work out better than assisted living with families providing lots of free care in the facility.
The really important thing is to file Advance Directives and be sure that family and physician understand your wishes--while you can still articulate them. Yes, it's possible to say no to extreme treatments; and we should all plan and allow for a future where we can't take care of ourselves.
6
I disagree with the premise of this piece--that physical safety trumps everything else in elder care. I would put happiness first every time. Safety and enjoyment are always a tradeoff, but I would vote again and again for enjoying my time in a facility.
37
One of the problems with hiring a service to provide daily or overnight care is that the service keeps changing who they send to the house. This was very disconcerting to my parents. Just as they got used to a service provider and started to really like that person, the service would change the person they sent and they would have to start all over with someone new.
27
Most of these jobs pay little for demanding work. Until this country decides that we are going to value caregivers & pay them decently, there’s going to be high turnover.
6
Obviously, there are plenty of people who can afford $4800/month or more for assisted living but my husband and I aren't among them. I want to stay in my home, or if more convenient for my children, in a private apartment near them until the day I die, even if I'm in a wheelchair. And I don't want to live among strangers or with my adult children, either. I would hope that minimal home services would be available as needed and family, neighbors and friends would check on me by phone or visit if I don't answer the phone. Death comes to us all. I am not afraid.
19
I have a 94 year old neighbor who lives by herself. Every day she sits outside in her wheelchair with her nurses aid and waits for the bus to take her to the church senior center where she has lunch, plays cards, listens to music. Her son and granddaughter visit often, do her shopping. She has a cleaning lady who also does her laundry. Neighbors look in on her. She always has a smile.
7
@Zejee Thanks. I needed to hear that "happy ending" story!
4
My almost 94 year old mother has been in assisted living for about 4 years and loves it. Lots of bridge playing!
I live a few miles away, my 3 siblings and all my nieces and nephews live 2k miles away. My Mom has 4 children she can count on to take care of her.
What about those of us without children or a spouse.? I fear for my decline as I do not know who will be there to advocate for me.
It scares me.
37
There’s an anecdote in the article about a 96 year old who fell and was injured, and the family acts like this is something that could be prevented. Short of restraining an ambulatory person from walking at all, it is likely even 24 hour supervision would be inadequate to prevent all falls. I have had 3 grandparents who lived past 95, one with dementia who is still around at 97. It is basically impossible to 100% ensure that they do not injure themselves. We are all going to die of something. I know my grandmother would rather risk it and walk than just wait to die in her bed.
My point is we cannot eliminate all risk and we are probably spending too much money already eliminating marginal risks for people that even 25 years ago would never have lived as long as they are now. Watching my grandparents survive well into their 90s has been very unpleasant for everyone and there are no good solutions, even the expensive ones.
52
@Big Cow. I recently watched the movie "Harold & Maude" again for the first time in 40-45 years and was glad I did. In the movie Maude kills herself on her 80th birthday, while still active & in good health, wanting to avoid the awful that often happens after 80. Sounds like a good idea to me.
1
@Big Cow
My grandmother, who lived to 103, never incontinent, survived 2 broken hips -- one while living independently when she just sat on the couch and did not even realize her hip was broken, and the second time simply getting into bed for the night with her son standing right by her side.
There is no way to eliminated all risk.
3
My mother, 85, deteriorated quickly after her husband died. We had 24/7 care provided at home for three months before her stepson, demanded possession of the house which was left to him by his father.
But actually, the forced change to assisted living was a blessing. Despite the dementia, she thrived in the new setting. She was in good physical health and spent her days helping less mobile residents and wiping down the counters of the communal kitchen. She enjoyed the interaction. The staff members, (who were wonderful) let her do her thing.
Three important tips for kids facing this situation:
1. Tour the facilities at length before making a choice.
2. Choose a location close to your own home.
3. Don’t take anything valuable - even the nicest dementia patients tend to wander away with each other’s things!
10
Re Christine Flores's comment in the article, "People’s defense against something horrible happening is, ‘Well, they have a right to be independent,” she said. “‘Yes, he did walk up the stairs with his walker and fall down and die, but he had a right to do that.’ That’s a horrible defense. You don’t just allow people to do unsafe things.”
Isn't it interesting that this judgmental comment comes from someone who "runs three small group homes for the elderly"?
The whole idea that adult children or others are in the position of "allowing" or "not allowing" elders to take risks under any circumstances reflects a philosophy that some of us don't subscribe to.
Moreover, some of us are actually willing to acknowledge and accept the risks that come with independence -- our own or others'. This includes things like lying at the bottom of the stairs in pain for three days before dying -- especially if it is between that and living in a warehouse among strangers for weeks, months, or years with no privacy, no control over our lives, and forever at the mercy of underpaid, overstressed individuals working for corporations that put the bottom line and concerns about legal liability ahead of all else.
Flores is certainly entitled to express her personal and professional opinions that reflect her values and experience. She just shouldn't make the leap that hers are the only "right" ones.
18
My husband and I are responsible for the care of his cousin, also his godmother, whose only son died nearly three years ago. She was an orphan as a child--her father disappeared from her life and her mother died when she was eight years old--and in a way she is an orphan now. She was cared for by her aunts when she was a child; the son of one of those aunts (my husband) is her guardian now. She has dementia and is in assisted living, and the people looking after her are caring and attentive, but still she falls, she becomes ill, she is bored and unhappy. And we constantly worry about paying her bills and what could happen if the money runs out.
There are few happy solutions to a situation such as hers, and as we deal with all of her issues, I can't help but wonder who will be there to see that we are cared for, when we become old and helpless. We have no children, and other family members have their own concerns. We have long-term care insurance, but dealing with an elderly person's problems involves so much more. I truly don't think our society is ready for what is about to happen as huge numbers of people grow older and need care.
43
I have recently been diagnosed with Alzheimer's disease at age 67. I watched my mother suffer the indignity of becoming a non-person. I will not allow myself that indignity or put my children through it. I will choose to end my life. Laws generally do not allow a person physician assisted end of life unless competent and within 6 months of dying, which puts patients with Alzheimer's with little help in making important choices for themselves or able to end life with dignity. I hope I have the money to take my children and myself to Switzerland where there is humane assistance. If not, the other choices are very grim. We need to look at how to help patients with Alzheimer's explore their options and provide humane choices.
91
@Raye
I'm sorry to read of your diagnosis. I am writing to encourage as many readers as possible -- both people living with dementia and their caregivers -- to explore using the Bredesen protocol developed by Dale Bredesen, M.D., author of The End of Alzheimer's. We began using the protocol with my dad nine years after he was diagnosed with non-specific dementia and started seeing improvements in his behavior and appearance within two weeks. Of course, no program or treatment will work for everyone, but I believe Dr. Bredesen's program is worth knowing about and trying. Deborah Gordon, M.D., of Ashland, OR, has a DIY version of the protocol on her website. Once there, go to Health Topics, Brain Health, Memory Healing in Alzheimer's.
4
There is no way not to grow old in America. Growing old just seems to happen...in America as well as everywhere else. The difference is, in America growing old has become a business. Lots of money can be made from our aging mothers and fathers...and our fervent wish to make their final years comfortable. Those carefully photographed catalogs depicting happy seniors playing golf, engaging in water aerobics, dining on lobster, snuggling with youngsters belies what comes next. What comes next is growing even older. Needing assistance ambulating, bathing, eating, toileting. And then the costs increase. It's a pretty good money making proposition. And, I think, really awful.
14
My husband is a geriatrician who works with several assisted living facilities. He read this article & said it was poorly researched and contains many falsehoods. The author took anecdotes and wrote a column around them as if they represented The Truth. They do not.
22
@Liberal N. Proud I'm sure your husband, the geriatrician, is reaping the benefits from treating the residents in the 'several assisted living facilities'. Geriatric patients (especially those in assisted living) are cash cows. My advice to you would be to read the article yourself. And make your own observations. Your husband can contribute his own comment.
11
@Liberal N. Pro How many patients does he have ?
@Liberal N. Proud. I think it's just an opinion based on the author's family experience .
1
GETTING OLD
The Golden Years, like Santa Claus, do not exist:
I wrestle short-term memory and lost the drive
that kept me on my toes when I was young; but
I am glad that I am still alive. Now, over ninety, I
appreciate those genes my ancestors passed on to
me: my legs keep up with those of my small dog,
my brain still operates at full capacity. Assisted
living is for folk that have to struggle to live
normally. I need to live without compliance and
restraints - I’d rather die than loose autonomy.
Could use a hearing aid and I’m incontinent; yet I
am always busy and embrace my shrinking future.
Should I become aware that I am loosing it,
I’ll fly to Zurich with a smiling face.
34
God bless you. Get a hearing aid. Honestly you’ll like being able to hear better.
2
This essay is so spot on - exactly what we learned when our father with early onset Alzheimers needed assistance. We had endless financial resources thanks to Dad's hard work and great insurance policies, but even throwing money at the problem was not enough to provide him decent care and assistance.
I was happy to share my story to the multiple law firms against Aegis the largest culprit on the West Coast. Their chief marketing officer will likely respond to this post as he always does.
I hope those law firms drive these chains out of business. The laws need to crack down on these fraudulent businesses.
5
My friends moved to an assisted living complex when in their mid-80s. The assistance they get is three meals a day, plus social activities and scheduled shuttle service for shopping, library, and entertainment. She didn’t want to cook, he didn’t want to drive, so it was perfect. New friends for bridge, volunteering at the food bank, no yardwork. Now they’re in their 90s, and one of them might need more. Their kids are looking at nursing homes. Assisted living is not meant for folks who can’t get to the bathroom and comb their hair. That’s a nursing home, but we don’t like that term.
15
My grandma Rose was "put" into an assisted living/nursing home facility when her children, my mom included, "could no longer care" for their momma. Grandma was rational and able to take care of herself.
Though not quite 20 years old, I stood helplessly by as my grandma sobbed and begged her family not to send her away. She then tuned to me and pleaded with me not to let this happen.
I've never forgotten that day. Now 77, in reasonable good health and still physically active, a small group of close friends have vowed to take whatever means necessary to insure each other's independence, whatever the consequences.
18
@Norm
Then, if you are being a rational adult about it, you carefully consider quality of life issues. Adopt weight training, yoga, mobility exercises, and test yourself on cognitive decline over time. And accept that in our society that you either accept a peaceful voluntary end to your own life as a possibility, or accept the high probability that one day you will be warehoused as you lose who you are to extreme old age and dementia.
8
@Norm
I had a similar situation years ago with my spouse's 90 yr old grandmother. She came here from Greece not speaking any English when she was 20 - came over on a boat and landed at Ellis Island. His grandmother in her old age had basically stopped speaking English anymore. People said she had forgotten how to speak English.
Grandmother was hospitalized with an infection and while she was there, a second breast cancer was discovered and her eldest son - a doctor - scheduled
her for a second mastectomy without caring if it was what she wanted. She had argued against it but the entire family was ignoring her wishes. When I was left alone in her hospital room, she spoke to me in perfect English, weeping and begging me to help her avoid having the mastectomy.
I had no influence with my spouses's big domineering ethnic family but I carried my guilt for not helping her for years after her death. Many of the elderly are not as childish or helpless as we believe they are. She had gone years without speaking English but could do so quite eloquently when she had something she needed to say. I was sorry they didn't care what she wanted.
5
These comments are certainly downers. I know that everyone has a unique experience and some have more problems than others but I am astounded at all the negative comments about assisted living facilities. I am aware of a few excellent assisted living facilities in my town. Most are not luxurious but have pleasant surroundings and very good employees. My mother lived in one for several years before her death. Another relative was in assisted living temporarily while recuperating from an accident but has moved back home. He is lonely and would like very much to go back to the assisted living facility. He could afford it if he would just agree to sell his home. We had help from A Place for Mom, which gave us a list of facilities that matched our needs. We visited them and decided which was best. When I can't live alone anymore, I would love to be in assisted living.
9
@Katherine Cagle I think assisted living is great. If you're wealthy, don't need much in the way of ADL support...what's not to like? There's bridge, golf, book clubs, trees, social events...the list goes on and on. But you go on, too. And eventually you DO need ADL support. What happens then? No more bridge or book clubs. Difficulty navigating hallways. This is the point where hiring someone to help for a few hours a day comes in. Soon, assisted living begins to move into skilled care. And this is where, unless you have an awful lot of money, things get tough.
13
@alabreabreal, I am not wealthy but do have enough money for assisted living in my community. If I moved 80 miles west I could afford it even better. If I moved to Northern Virginia where my daughters live it would not be so affordable. I hope that I inherited my mom's healthy constitution because she was able to live in assisted living until she was 95. I do realize that nursing home or Alzheimer's care is prohibitively expensive anywhere.
It is surprising that there is no regulation. I believe that in Illinois, assisted living facilities are regulated. My parents went to assisted living when my mom had mild dementia. Perhaps because the state of Illinois supports some patients in assisted living, they are obligated to regulate such facilities? My parents were penniless and it was fortunate that Illinois Medicaid supported the 3 years at the assisted living facility. My dad died a year after, but mom kept going there for another 2 years. When dementia became moderately severe, the director told me she had to have more care than the assisted living facility could provide, and that I must move her out. I thought that all such facilities would know their legal and caregiving limits.
4
They are regulated, by the states, and the regulations (at least in our blue state) are not minimal, as the author asserts.
3
A 83-year old man with dementia dies and his family is devastated? I am sorry, but people of that age are supposed to die, and we should celebrate that they lived and thrived as long as they did. This is truly magical thinking. I saw both my parents die in their 80s from dementia and Alzheimers and there was nothing pretty about it, not for them and not for their children. I for one have no intention of following in those particular footprints.
37
The industry will make trillions on selling Denial to the Boomers (I know our narcissistic ways--I am one). Half a decade ago, I saw a documentary about this industry. The CEO of Aegis seemed like a grim reaper, waiting for us all to come. His beady eyes lit up as he started to describe the gullible, 75 million customers rushing toward his demographic doorstep.
Problem is, the life insurance industry already beat him to the scam. As the "nursing home" industry (regulated) was skating like Uber into the "assisted living" industry (unregulated), the companies started selling Long-Term Care Insurance which, conveniently, covers nursing homes rather than "assisted living" which simply is a nursing home without licensed medical or nursing staff, where they dump people with medical needs.
Even as the industry configured services immune to insurance claims, dozens of Long Term Care Insurance companies (Conseco, in Penn., for one example) dumped their policies on the state and liquidated the shell company that wrote the policies. The lies the Long-Term-Care insurance companies tell make Trump's fantasies look like the God's honest truth.
It's a hard, cold fact. For many people, once that "usefulness " wears off and you start collecting instead of paying (retirement, Social Security, "entitlements"--thanks Ryan), then nobody wants you anymore. If some of the small government types could round us up and make us drink Kool-Aid, they would. They want us gone, after being drained.
14
Again, assisted living facilities ARE regulated, just not by the federal government. I'm sure red states don't regulate as well as blue ones, but i can assure you that the regulations in my blue state work quite well to ensure the safety and well-being of residents in assisted living facilities.
3
Most long term care insurance plans cover costs related to your “care” - but not your room and board. So, depending on the level of “care” you need, you can use your long term care insurance benefits in assisted living for things like paying an aide to help you with activities of daily living.
2
@Michigan Native Most long term care insurance policies have a 90 day waiting period. That period begins when it is documented that you are unable to perform at least 3 ADLs. It's tracked. So if you recover even one ADL, the waiting period starts all over again. Long term care insurance is valuable if someone has a stroke. Or early onset Alzheimer's. The family will always pay out of pocket for the first 3 months...after that long term care insurance will kick in. Insurance companies offering long term care insurance have figured out (accurately) that most people will die before they will be eligible for long term care insurance benefits.
2
This article makes a simple and blazingly obvious point - that assisted living is good for some old people, but not those who require a lot of care. And it does so with about 100x the words required to do so
18
The Japanese system might work for some but there have been numerous articles in the past year about the elderly committing petty crimes for the purpose of going to jail. This is particularly true of those who are poor and do not have family support. Jail provides accommodations and company.
8
Kind of a scatter-shot condemnation here. Assisted living works very well for some patients. Level of care assessment is very important for success in any kind of facility. If you want to be assured of being with your loved ones when they die, keep them at home and stay home with them.
12
@Frank Basically, it all comes down to money vs psychological stress. If you have the money, go for assisted living (and be prepared to then go for skilled nursing which is even more money). If you think you can tolerate the stress and sadness that eventually comes with caring for a loved one at home, go with that.
1
This is great and all, but you also have to insist on the reality that you owe your family certain things on the basis of nothing but the fact that they are your family. The only thing that frees you of these responsibilities and obligations is if your family is deeply and chronically abusive.
The myth of total self-reliance that we've peddled in America feeds this trend, but so does the equally damaging myth that the only people you owe anything to are people you explicitly opted into relationships with and that you can forgo those obligations whenever they make you unhappy.
9
I live in a continuing life care community that has independent living, assisted living, memory care, and nursing home facilities on the same campus. The average age of those living in the community’s independent living apartments (which are absolutely beautiful) is 88. Many should be in assisted living or memory care: some wander the halls unable to find their apartment. Other residents try to help them but it’s so very sad. Many of the residents of the assisted living facility should be in nursing homes, which of course no one wants to go to. In my early 70s, I enjoy the camaraderie, numerous activities. and truly delicious food. I’ve heard from some industry professionals that this is common: people want to maintain their independence and move into independent living at the urging of their children when they should be in assisted living. Those who should be in memory care or nursing home facilities are being admitted to nursing homes.
9
@Anonymous Baby Boomer I'm an anonymous baby boomer, too. There are so many things to consider at our age. Independence is at the top of the list. But then there's wanting to remain relevant. Wanting to maintain social relationships. Wanting to care for others. Not wanting to be a burden to our children. Wanting to grow old and die gracefully. Wanting to be remembered. It's a difficult time and I don't think there's one specific way to achieve that.
4
@Anonymous Baby Boomer. This is how these places make money. A person might need a nursing home, which can cost $15,000 a month where I live, but the parent resists a nursing home and the kids are happy to consider AL at half that amount, if for no other reason than it helps "preserve the estate" for them.
2
No, we are not all complicit but ageism is against effective organizing.
So, we need to make it an issue.
6
It is beyond an individual's control about how to grow old. My father who turned 100 earlier this week on Monday was self sufficient until he turned 98. Then he fells a couple of times and it has been agonizing to witness his dependence on 24 hour care and being fed via a tube unable to taste and enjoy feed like he did. After the falls he has been bed ridden enduring bed sores, muscle atropy, bone degeneration, fatigue, difficulty communicating. His mind and brain has become prisoner in his body unable to express his feeling.
All of us have to plan and prepare for growing old. It is not fun but it is not something most of us are going to escape. An important lesson from father's final 2% towards his century is AVOID DEBILITATING FALLS AT ALL COST. We need to invest in ensuring that are bathrooms are not slippery and there are raillings to hold on to and a way to alert care givers if there is a fall. Another important lesson is not to stumble in the dark and have well lit surroundings.
As people live longer a key consideration is to ensure financial support while growing old. The assisted living industry boom is a need for the aging society but it should be regulated and properly held accountable.
26
@Girish Kotwal, this is why Hospice care is so wonderful. It makes the person comfortable but doesn't provide extreme care just to keep the person alive. That is what I want.
8
@Girish Kotwal
Putting a feeding tube in a 98 year old is a choice. Bathrooms have water in them. Even little spillage of urine can be slippery. Can’t make them 100% slippery free. Old people will stumble in the dark because well they are old and even young people can stumble in the dark. Can’t make life 100% safe.
6
Nothing in this story surprises me. America, is, after all, primarily about money and greed and profit. Everything else is a grand illusion.
Nor am I surprised that there is no discussion of how to stay out of both nursing homes and assisted living facilities and indeed be self-reliant to the end.
The myth we need to end most is the belief in "get-sick-and-die." What happened to get OLD and die?
15
@Christopher Ross "old and die" is the best way to go. May we all go that way. Unfortunately, it often doesn't happen that way.
The author misses an important point. For those with the means and the right situation (which works for a substantial portion), the combination of assisted living and around the clock private nurse assistants works extremely well. For many only eight to twelve hours of help is sufficient. It worked for my grandparents. Of course, many cannot afford tbe cost.
7
@D Most can't afford the cost. But it's a nice thought. For those 'with means', take note.
3
My 90 year old father moved to assisted living about four months ago. He’s thriving there- exercising more and sleeping better, making friends, playing bridge, and going to concerts and movies in the facility. Everyone who works there seems very happy and helpful. They clean his apartment, do his laundry, give him his medications, and provide all meals. I’m nearby now and have taken control of managing his medical and dental needs, so he’s getting better medical care too. Obviously, he may decline in the future and need more care, but for now the situation is ideal.
14
I have the responsibility to care for a dear friend. He quickly developed dementia after a couple of strokes. He was living at home, which had stairs, which he tripped and fallen down, couldn’t and wasn’t bathing, couldn’t and wasn’t eating after having set a fire after he tried to heat up food on the stove on a plate. He is currently thriving in memory care assisted living, at great expense, which he had saved for. After what I know was a somewhat lonely life, he now has some camaraderie, trips to places he would never have gone, but which are interesting (he told me), and regular food, hygiene etc. I am so thankful for the people and the facility. There is no way his care would be nearly as good, were it at home (even more $$$$$), or if he were living with us, which had been offered.
The cost is prohibitive for myself, tho. At 50, I’m thinking about all this and what will I do in these circumstances? Do you invest in long term healthcare insurance, that costs a fortune and may never need? Who knows?
What I do know, for certain is that the Japanese have it all over us. Their whole social safety net (socialized healthcare, long term care, etc) seems incredible and so inspiring. Wish we had even a fraction of the thought behind their policy.
21
On a planned exit.
We regularly discuss if it would better to feed the wolves, polar bears, or the fish with our corpses. Sky burial might be O.K. .
Just how to do it so the animals won't get the blame.
Would they choke on a stent? Would a stainless steel ball joint possibly break a tooth?
16
Please, please, if you want a peaceful natural death, then create a written and notarized advance directive. Tell everyone you know that if you go into cardiac arrest, you don’t want to be resuscitated. Tell them you don’t want a breathing tube or to be put on a ventilator. Talk to your doctor about this. Because if I start CPR on you, even if I can get your heart to restart, I cannot guarantee that your brain and the rest of your body will ever return to your previous state of health.
117
@A Doctor. Yes. We did that for my mom, with her guidance and preferences. The document is in her chart at the assisted living facility where she now lives. Living at home was untenable. She finally has the assistance she needs. We could not have provided her with enough help at home . It would have been unaffordable. Assisted living has been a godsend. We visit often. The facility is well kept and well staffed. With this support, I believe my Mom will spend her remaining days in dignity. I have observed the care of residents who require a much higher level of care, and they are accommodated. According to this article, this facility is an exception.
3
A Doctor - are you a medical doctor? Because as a nurse who has worked with populations of terminally ill patients and in nursing homes I know that advance directives are pretty much meaningless. Poor institutional communication, heath care professionals who willfully ignore them, nursing homes that ship residents to hospitals at the drop if a hat and our society’s twisted notions about “the sanctity of life” all conspire to make this so. I grant you that having an AD plus a medical power of attorney (hopefully, someone with the guts to fight the medical system) is better than nothing - but one cannot assume that it will work.
10
I am a medical doctor, and I spend many hours every week with older patients shipped to the hospital from nursing homes because their FAMILIES refuse to honor their advance directives. Many of them have paperwork specifying comfort care only, do not transport to hospital, but as soon as they get sick the FAMILY wants them sent to the ER. And then the family want “everything” done even if the advance directive specifies the exact opposite.
11
I want the option to die peacefully when I am no longer enjoying life. Like our pets.
56
Perhaps William Savage Landor was correct about old age when he wrote:
IS it not better at an early hour
In its calm cell to rest the weary head,
While birds are singing and while blooms the bower,
Than sit the fire out and go starv’d to bed?
19
When I get to the point where I need a nursing home I will end my life by assisted suicide.
31
That may not work as planned. Suffer a massive stroke with NO warning and you’re in a nursing home and physically/intellectually/emotionally able to control your own destiny. Happened to my aunt and she languished for years that way.
13
@Barbara
A very specific (and properly witnessed) advance directive declining pretty much all medical interventions other than aggressive pain management(including NO tube feeding) in such a situation can help with that.
8
@Margaret--For assisted suicide (in states where it's legal) you need a doctor to certify that you're terminally ill. It's not enough just to be old, frail, weak, in dementia, etc.
2
"We are all" nothing of the sort.
"...assisted suicide...euthanasia..." I don't recognize the world in which I live anymore. What ever happened to growing old with grace?
@India
There is no grace in dying from (or with) severe dementia. I watched both of my parents endure this, and my grandmothers as well, and it was dreadful. They all had very good care, and they all were absolutely miserable, alternately bored and agitated, and with these dementing diseases the arrow points in one direction only. Self-deliverance or suicide or euthanasia, call it what you wish, is a far more peaceful (and graceful) option than a long stretch of dementia.
1
@mary rivka
Disappointed. I expected Mary Rivka to discuss how people in the Blue Zones don't suffer from our callous indifference. I am 51 and in half-decent health, fully employed, walk in circles, smirk. I live an active life. Dinner was fois gras, toddler spleens, sawdust and blueberries. Typical. I never eat out. I'm at my high school window peering in and I’m off my meds. I don't know anyone who takes half as much effort. My case worker knows that at any point if I can't live without assistance to let me go as expediently as possible. You write about people who are “self-induced” sick old people, what you think of them, and how it’s all their fault. You have revealed yourself. When and if you ever retire, stay away from the children -- our future -- You could give a fig about empathy or human kindness. You had your chance. You blew it. Maybe the next commenter can get their act together.
9
@Henry K
Terrific response. Literally couldn’t have said it better myself. I had read @Mary Rivka’s comment several hours and was so disgusted by it, could not bring myself to submit a comment on it. But I do remember thinking: she should stay away from children, and from anyone with compassion.
2
My parents moved into assisted living and lasted for two months. Fortunately they had not sold their house yet, and we're able to add a ramp and redo the bathroom to accommodate their needs. Their independence is a million times more important than their safety. Even having a full time aide supervising your every move cannot prevent accident and death. They have been so fortunate to be healthy until now, and everyday they get something out of life is a good day. Honestly, if I found them both crumpled at the bottom of the stairs, I would still know they lived their best lives, and we've all been incredibly lucky. Falling and wandering are a part of getting old. People that don't expect their elderly parents to have a catastrophic event that eventually kills them are clueless or just looking for a payout. I dare any of these complainers to volunteer at a dementia until for a week and let us know how that goes. Believe me you will pray for help from the family to get YOUR mom to the bathroom.
18
I have seen enormous differences in assisted living facilities--my 98-year-old mother lives in one--and the one she's in is, fortunately, very good. I'm not sure regulation is the answer--regulation can just mean lack of affordability in the long run. What is really necessary is a thorough inspection of the place, before and after the elderly person moves in. The assisted living movement grew out of the horrors of the over-regulated nursing home, where old people were sometimes safer but never felt at home. http://www.thecriticalmom.blogspot.com
5
My mom lived her life by her own terms in a rural area until she couldn’t drive or see to cook. I live 300 miles away and my brother is 700 miles away. No other family and most friends dead. I brought her to my city after she was released from the hospital to skilled nursing care. I have tremendous guilt for doing this. I never lived in her town. Knew nobody. It was rural without any medical support. The closest doctor was in another state. She refused to stay in my home and hated paying for assisted living. She is with my brother now.
7
We tried a retirement facility for one year which was all I could take. Living in an apartment without a garden didn't cut it. And having to eat dinner with all the other residents (even though the food was pretty good) got to be a burden rather than a pleasure. When my daughter suggested we join her in New Hampshire and share a three generation house, we jumped at the chance. I have a garden again, my 26 year old granddaughter has the privacy of the third floor and with four of us in and out of the house we don't worry about my 91 year old husband who uses a walker and a stair-chair. Chances of having to put my husband in a care facility is low although he does have long term care insurance. but it only kicks in after a year and most care facilities cost a bloody fortune these days. Our independent living facility, although non-profit , still cost over $5000 per month and the supposedly included medical care was a joke! Friends out in Seattle are paying $8000 per month for their apartment in for-profit independent living! Crazy.
8
Has anyone noticed the number of comments here advocating the freedom to commit a dignified suicide? And the number of recommends they have attracted? This is a frequent topic of conversation in my 70-plus set. Three different close friends have asked me, unknown to one another, to eventually be the other half of their "Thelma and Louise." Many of us who want to exit on our own terms watched our parents' lives miserably prolonged in nursing homes.
Yet few younger people seem even to realize this conversation is going on. And certainly most writers for The Times do not. When is there going to be some NYT coverage of this important topic?
222
Don't praise Japan so much. The sad fact of the situation is that usually one of the middle-aged/aging children is taking care of the parents at home, to the detriment of their own careers, health and sanity. Often it's the daughters-in-law. There are frequent stories in the news of caregivers killing those they care for out of desperation, and then often killing or attempting to kill themselves. There also is a huge dearth of any kind of residential care facility; those that there are, are either way too expensive or way too oversubscribed.
Japan does not have the answer either.
39
Great piece. This is a conversation that needs to happen at the national level , not just for those who are currently caring for aging parents. Some of these “children” who are caring for elderly parents are in their seventies. A huge issue and thanks for writing about it.
24
The definition and regulation of "assisted living" varies from state to state. It would have been a service for the writer of this article to report on which states have appropriately tighter standards and regulations on care, and thus a more viable community of assisted living facilities. How about reporting on a successful example of assisted living done right? How about guidelines on what family members should look for? As it is, this article is merely a handful of troubling anecdotes.
My mother resides in a fine continuum-of-care style community in Massachusetts, with consistently high evaluations from residents and families. My impression from my research is that there are many well run assisted living facilities in New England--such places should also be publicized and their models replicated. Elder Services offices in every state provide the framework for assisted living in that state. Families do need to do their homework, but assisted living is often a much better, and more economical, solution than full-time care at home.
8
I have first hand experience with trying to find a place for our Dad when it became clear his dementia had progressed. He lived in two places at the end of his life, one a large corporate-owned facility and one a 6-bed residential care home.
Both lied about their capabilities. Staffing was too low and untrained in the larger one, and the RCF lied about how much memory care they actually did.
The huge fees you pay are usually bundled, i.e. you don't see the components. But it's clear that the fees are primarily rent for which there are a lot of tax benefits to the landlord; then covering marketing expenses for the facility i.e. making it seem like Disneyland for seniors; and then, a distant third, the personal services, including meals, for the residents.
In facilities where there is both assisted living and memory care, the memory care fees, which are tremendously higher, subsidize the assisted living area, not the memory care unit. It was implied that there was a full time nurse in the memory care unit but she was not often there but elsewhere in the building.
Finally, if you use a consultant to help, you may wind up with a charlatan who steers you to the most expensive facility that you can afford because she gets a bigger finder's fee, or with a well-meaning one who doesn't do enough due diligence with the facilities he represents.
It's a minefield out there.
28
My parents, ages 89 and 90, have been in assisted living for a year. They don’t have dementia, but my mom had a mild stroke and my dad is there to be with her. They are much more active and social than they were at home. My dad, who used to perform in community theater, has found a new and appreciative audience. Assisted living may not be for everyone, but it’s working out well for my parents.
710
@Diane....Very happy for you and your parents. I would, however, make 2 observations: 1. Neither of your parents, at 89 and 90 YO, have dementia and, 2. They are both still alive and together as a couple! I think your parents are (happily) outliers for people their age. Power on!
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@Diane
"Assisted living " are "nursing homes" for the rich.
Nursing homes are quite different unless you have $.
41
@SouthernLiberal. I heartily agree with you. The inequality all but the wealthiest of us are experiencing is crushing the “American Dream” on both ends and squeezing the middle like an aluminum can. The story (above) is told from Diane’s perspective; I wonder if her parents have a different slant on this story? My own family is grappling with “what to do about Mom” now that Dad is gone. Mom is fit and healthy, but can’t do the job of two people — this does not require rocket science to solve, and the burden should not fall on family members to deal with. It takes a village, remember? And villages, sad to say, are disappearing. I’ll let you all know how this story develops, as more time goes on. As for me, I look to New York State for solutions, since the governor seems to have down-to-earth programs for seniors there.
21
This topic is such an important one and this column raises some of the critical issues at hand. We are staring down the barrel of a looming crisis of aging baby boomers and an inadequate senior care infrastructure to care for them. My father suffered from dementia and suffered terribly. In the early stages assisted living was our first choice, but he quickly needed more care than they could provide, as many tasks are considered medical tasks and he had to move to a nursing home. Except: most of them had 6 - 8 year waiting lists. Yes, that's right. He finally got into one where he died a long slow slow death, and where my brother and I had to constantly pay surprise visits to ensure they were actually bathing him and giving him basic care. For about $8k/month. More oversight of the industry, and better and more training for staff is critical if we are to prepare for what inevitably is coming down the pike for society.
9
All the training in the world isn’t going to help when poorly paid workers are taking care of too many people, while tired from the 2nd jobs they need to pay their rent. There’s limits to what human brings can do.
7
My father was in an assisted living facility for about 9 months. We had to pay for a caregiver to be with him every day from 7 pm to 7 am. The AL facility really offer no "assisted living" in any way other than having someone at a front desk to sign people in and out. If anything ever happened they just calledan ambulance to come and pick him up regardless of what the issue was. On the weekends the staff was nonexistent. He paid about $100K a year to live here. It was a total rip off. Save your money and hire live in help at home. It is cheaper and easier.
1256
@Sarah99 Actually, hiring around the clock 24 hour care (or even 12 hour care) is fantastically expensive. But if your parent can afford it and there's someone else available to provide the necessary care during the the uncovered hours, it's definitely the way to go. This is kind of a wealthy person's dilemma. So many of us aren't wealthy...and yet we'll grow old, too. Without the benefit of hundreds of thousands of dollars.
213
Home care is great if the people who need help can keep their house in a relatively safe and sanitary condition. But that’s not always the case. My grandparents’ home had a horrible rat infestation because they couldn’t keep it clean, and my mom hired and was eventually rejected by several home care organizations before my grandparents moved to assisted living. The companies kept running out of aides who would agree to work in the house in squalid conditions.
47
@alabreabreal
Right you are. I once did a tax return for a family that hired 24x7 in home care. Cost in the mid '00s $200K per year. Ended up in a nursing home eventually still.
79
Japan does not bear the massive Defense budget which we in America have to pay for. Therefore, it is better able to provide social services for its citizens.
17
@TWM Japan's social services budget isn't great; in fact, they're talking about pushing back the age at which you can receive the public pension, supposedly to allow active elderly to keep on working but in reality because they want to put off payments in order to keep the system solvent.
2
I have been through the US healthcare grinder with my father before he pass about a year ago. If you are a senior and go to a hospital it is automatically assumed that you want everything that could possibly be done applied to you. Quality of life is not a consideration. You become a case file, subject to procedures for the hospital's and nurse's benefit & convenience.
If you are transferred to a Skilled Nursing Facility (SNF), you are now in a medical warehouse. Even in good facilities there are too many patients for the staff to care for in any compassionate way. If the family is not directly and frequently involved, your loved one will lay there unattended for hours.
If you decide to discontinue treatment to give just palliative care, be prepared for a huge fight. You may have to move your family member to another facility to get it.
If your family member decides they do not want to go through that, and wants to end their life while still in possession of their wits, now you are in truly uncharted waters. Some states will call that suicide, others will call it murder, including any who help.
Consider someone who is in full awareness, who doesn't want to go through that, and wants to pass on surrounded by warm, loving family and friends, who celebrate the gift of his/her life, before they pass in comfort and dignity. Compared to what we do now, how can this be a crime?
1898
@Bruce1253 One experience doesn't make a trend or a rule of practice. Years ago I was shocked by the hospital's eagerness to have a family member removed from treatment and transferred to palliative care in a hospice. Now I regret giving in as my family member was not ready to pass even if gravely ill and in need of constant care.
You are pushing an agenda (euthanasia or whatever term you find less pejorative). Your "huge fight" over ending active treatment argument is hardly a universal norm, as my own experience with a hospital (church run no less) demonstrates.
26
@Bruce1253 This conversation highlights the importance of having a living will and an advocate to carry it out. It is possible with hospice help to have death with dignity.
96
@Unworthy Servant I am sorry to hear of your experience but I would rather go early than later and IMO Bruce's experience is more the norm in the US I think but I don't know of any rigourous statistical studies.
In fact, I'm ready to go now but my wife and kids will probably object (and I'm 47). I've had a happy full life and know it can't last unfortunately - if I could live forever, I would but since I can't, I've accomplished everything I wanted to accomplish when I was a kid and then some. So I'm doing more now (only thing I can do) but it's extra time I didn't think I'd have for whatever reason.
51
We have been caring for my father in home for the last 7 years and my wife’s parents in assisted living for 3. My father would not survive in assisted living. He is too quiet. My wife’s parents would be bored to death being stuck in our house. It’s silly painting everything with one brush. People are different. The only thing you can say is generally true is that it is impossible for everyone to get all the care they need. Period. And that includes the caregivers!
1387
@Exasperated Could not agree more!
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@Exasperated
Amen! & also the resources to pay for it all
26
Exactly. One size does not fit all. . .This article infuriated me. My parents died within 4 months of one another a couple of years ago. They were in "independent" living but calling them independent was a stretch. Fear of losing control is the issue and who wants to do that?
26
My father was in an assisted living facility for ten years. During the last two years we hired an outside caregiver to be with dad for 14 hours of the day - to feed him, bathe him and keep him clean, and make sure he watched the sports events on tv and could go outside at the facility when he wanted. They became good friends and it made the end of dad's life much better. But the cost threatened to run through dad's assets in another two years. The staff at the assisted living facility were great, but their jobs did not include the care provided by the outside caregiver, who, btw, was from Eritria, and had trained as a nurse there. Without immigrants, our aging parents will be very much at risk.
2734
The assisted living doesn’t provide much more than if you lived in a hotel and ate downstairs in the restaurant. Our relative was in great shape, just couldn’t see well. All he really needed was somebody to stop by twice a day and give him his meds but that would have been an additional $10k a year!
102
@Eero You mean, without trained compassionate people we can pay a pittance? We need to start valuing these positions, and teachers, and, housekeepers, and ditch diggers and others, and pay them a living wage, and stop counting on a slave class of impoverished immigrants. Not that this is your fault, but as a society we can't keep doing this. The center will not hold.
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@Eero
As Trump changes immigration standards to focus on people who will not be "a public charge" unfortunately this excludes many who are needed as staff for "assisted living" facilities, the industry will need to pay higher and higher wages thus pricing out many middle class families who saved for their own retirement expenses.
The USA is not "full"; there are many jobs in the "care" industry which require only short courses in training.
107
We need to approve assisted suicide on a national basis. I shudder to think of living with dementia, I would really, really rather be dead. As a teenager, I worked in a nursing home with many dementia patients, it's an ugly life. I realize this doesn't solve the problem for most people, but for those who are brave enough, it's a way out of the problems described. And yes, I would make this decision when still in my right mind because I know what is coming.
84
Some if us are living too long. There isn’t no good way, or affordable way to care for people with dementia.
We shouldn’t allow people, if they choose, to ensnare their life when over come with dementia.
15
Please write another article with possible SOLUTIONS !! My only idea is NOT trying to live forever - having a DNR on file, re-writing my healthcare directives to include dementia as a terminal illness, etc. I’m looking for ways to allow me to die w dignity, NOT extend my life if I’m no longer enjoying it. Highly recommend reading the thoughtful book, Being Mortal by Atul Gawande !!
32
Therein lies the problem. There aren’t any good solutions.
3
Americans don't do well when it comes to taking care of one another. We're too selfish and too quick to judge those who can't afford it as freeloaders. Our values are also evidenced by how little we pay those who care for those we claim to cherish the most -- our children and our aged (not to mention the disabled). Direct care workers, childcare workers, teachers (especially early childhood teachers), teacher associates (who are assigned the most difficult children) -- few in these jobs earn a living wage and our most vulnerable populations suffer (and die) because of it.
38
Let’s start tackling this problem. I think the solutions are realistic. All these immigrants that want to come to America for a better life but are put in cages at the borders or housed in detention centers are the answer to our problem. Let’s teach them basics English and basic caregiving skills. Bingo a win-win for humanity. Immigrants get jobs in America and America gets the sorely needed help for an aging population.
12
And America gets more taxpayers.
1
If you think inadequate staffing is a problem in assisted living facilities and nursing homes now (and it is), just wait ‘til Trump succeeds in deporting all undocumented immigrants. Who will take care of Grandma then, unemployed coal miners?
66
"Memory care," a classic euphemism, has replaced the much-more-disturbing "dementia care." My mom suffered from dementia toward the end of her life. The facility was tricked out to resemble a 4-star boutique hotel, but it eventually became unaffordable for us. It was not funded by any government insurance. The second place was in a private home - very clean, with a pretty garden and in a good neighborhood - but it struck me as a step down in care and quality.
I have mixed feelings about long-term-care insurance. How much of it is a scam? It is really worthwhile, or are you better off just "stockpiling" your savings? Perhaps the NYT could do an article about this.
13
It's quite telling that so far the two most recommended comments are not about assisted living but about assisted dying.
23
I’m determined to bow out when I’m when my health reaches a tipping point. I believe in quality of life not to pursuit of “life no matter what”.
The Right to Life is sacred but also is the Right to Die.
Michael
20
@Michael--The problem with that plan is that you may not be able to implement it when you need to. If you have a stroke, or a massive heart attack, or an accident that renders you unconscious, you will be in the hospital and hooked up to machines before you recover consciousness and know about it. And if you suffer cognitive damage, it will be too late--you won't ever be able to choose to "bow out". The only truly safe solution is to commit suicide early, while you're still healthy and mentally competent, and I have certainly considered doing that (I'm in my 60s). But I'm not quite ready yet. So, like most of us, I just put it off and hope all will be well in the meantime.
10
“The huge government apartment complex where Mrs. Ito has lived for nearly 60 years — one of the biggest in Japan, a monument to the nation’s postwar baby boom and aspirations for a modern, American way of life — suddenly became known for something else entirely: the “lonely deaths” of the world’s most rapidly aging society.
“4,000 lonely deaths a week,” estimated the cover of a popular weekly magazine this summer, capturing the national alarm.
To many residents in Mrs. Ito’s complex, the deaths were the natural and frightening conclusion of Japan’s journey since the 1960s. A single-minded focus on economic growth, followed by painful economic stagnation over the past generation, had frayed families and communities, leaving them trapped in a demographic crucible of increasing age and declining births. The extreme isolation of elderly Japanese is so common that an entire industry has emerged around it, specializing in cleaning out apartments where decomposing remains are found.”
From an article in The New York Times dated November 30, 2017
12
Given the intractable problems of the health care an insurance industries, the best solution is to die early.
4
I can't see why people want to hang on so long once they've been diagnosed with on set dementia or their body breaking down to the point where they need constant care.If I can't live the way I want then I'm checking out under my own power and with my own hand.
9
@RJM You don't necessarily get a diagnosis like you do for other diseases. By the time my mother was 'diagnosed' she did not have the mental capacity to consistently retain or believe the information let alone check out under her own power and would not be considered capable to give consent for assistance in the matter. It's horrible.
9
Felt very horrible to read it. The system is cruel doesn’t matter whether it’s India or America. I can’t imagine myself in that position but it’s not in my hands. By the way I am 70 years old.
4
I would encourage more people to just have their elderly parents move in with them. My mother has dementia. She lives with me, my husband, and our two youngest kids. In the summer when the kids are home from school, on the days that my husband and I both have to work,we pay the kids small sums to take care of grandma, make sure she eats, has her meds, listens to some music, takes a nap, watches funny animal videos on the internet, etc. When school is in session, on the days where both my husband and I have to work, I take my mother to a non-profit senior center near my workplace; it is only $65 per day, including meals and activities.
At home, we have a good time. Sure, my mother sometimes thinks that I'm her niece, or that my husband is her father, or that my kids are neighbor kids who have come to visit. But we listen to music together, talk about things long past, look at old photos, etc.
I fully understand that there are families where this isn't feasible. And I also understand that there are parents who are so unpleasant, or who were so abusive when they were younger, that it would be utterly unjust to expect their adult children to care for them.
But if having your elderly parents move in with you is feasible, why not at least give it a try for a few months?
47
So what do we do when we don’t have children to move in with?
5
Is Japan the country where most women stay at home, at least after having children?
If so, it most definitely is not the "model" for the US.
That does not mean enormous significant reform is not needed in elderly care in America. Just as for our youngest citizens, our oldest citizens need a support system that extends beyond families whose resources cannot match their needs or what they deserve in a society as rich as ours.
While dementia can be cited as rationale in the actions of some of our senior citizens, one wonders what biological, disease or other rationale "explains" our politicians' absence of connection to the reality lived by tens (hundreds?) of millions of Americans,
6
I was extremely fortunate to have both parents die in their own home. They had daughters close by and wonderful neighbors. My father was 93 and my Mother was 88. They also willingly allowed themselves to age without an excessive amount of medical intervention. Congestive heart failure and metastatic breast cancer were the causes, but they refused the intervention when they were aware that "buying time" was only delaying the inevitable.
I think that is another conversation to be had. At what point is a person no longer living and merely exiisting? Most people do not have the financial resources to cover the expenses of years in a nursing home.
We also need to start thinking about dying as a natural part of living.
38
My 90 year old mother died last April after (yet another) fall in her very beautiful assisted living facility in Glenwood Springs, CO. Having cracked several ribs, she eventually developed pneumonia a few days later and died. We were prepared for her inevitable death but were horrified to discover that they had not notified my sister nearby until 24 hours after her fall and only then upon my sister’s insistence did they take her to the hospital where she met them. Horrible. The care she received was substandard and everyone there presented falsehoods regularly about their actions and intentions.
17
Great article that is well researched & relevant to us all, even to our young who will age or perhaps care for elders. I did quite a few summary take-aways(excerpts) which illustrate strong issues: 1. … care of elderly. Just too much for family. 2. hard for us ... Really, it is impossible. 3. … assisted living offer… 4. … have dementia and sometimes wander Assisted living is for the very healthy non-dementia people. 5. … monitor and assist … There is never enough personnel for this. 6. … national long-term-care insurance… Japan (& Singapore) far ahead of most. 7. … longevity… you and me It will be coming for us all.
Artificial intelligence must be used immediately to create body attachable tracking & health monitoring devices with programming to detect most any dangers. The present state of the arts make such devices a piece of cake to build starting with location GPS & safe go/unsafe no go areas.
The last is the hardest, extending the health of people for longer years of life. There must be tangible rewards for doing the hard but required for extended health, physical items for brain & body resilience. Humans can be much better, live longer & healthier than we do now. Adding the full care of elderly parents would be a crushing burden.
I am 78 & exercise strenuously continuously daily. Creator of Flexercise© to make sure I never have to use a gym or appliances. The Well Section of NYTimes is like a Bible of fitness to me, it was my health genesis. Live long, fit & Well.
6
At the request of the assisted living facility, we paid extra to have two aides help my father at certain times of the day. Because he was still mentally sharp, we could question him about his care and get an accurate answer. He told us it was extremely rare for him to see more than a single aide.
One evening, I found him slumped in his wheelchair in a public are of the residence. No one else even noticed and it took some time to revive him. We got him to the hospital and he died there the next day. Who knows how long he might have sat there if I had not come by?
Assisted living facilities, for the most part, are a scam. The fancy drapes and brass chandeliers are put there to assuage the guilt of the children. They can leave the building thinking mom or pop are in good hands in such a nice place. The truth is that they are not safe there.
29
Not so sure I agree with anything in this article. Maybe we are lucky, but our mother is in a continuing care facility (where you can migrate from Independent, to assisted, to nursing/memory care). She has early to mid stage alzheimers, and it is perfect for her. They help with her medications, perform all her chores, provide her meals, get her to her doctor appointments, and check on her multiple times/day. She could not live alone without close to full time supervision, but she does not need to be warehoused/jailed at this point. The solution is perfect for her - and she loves it. Yes, at some point she will have to go into memory care, but they are doing everything they can to keep her in assisted (where she is happy). And yes, there is a chance something bad could happen to her. But who wouldn't want to have two or three happy years with a quality of life instead of five or six years sitting in a bed/chair in a Nursing home waiting to die - just to make sure you don't have an accident or mishap in your final years.
15
I am 69 years old. My spouse is almost 67.
My father-in-law had a massive heart attack at age 56. He went from being a strong , physical man to being a near invalid, but never recognized the profundity of his limitations. He died on the job of a second heart attack at age 60. Lucky guy.
My mother-in-law lived independently as a widow until age age 93. Dementia set in. Her daughters got her to assisted living until she was overcome by Alzheimer's and transferred her to a skilled nursing facility where she lingered until she died at the age of almost 97. Good job kids.
My dad was in generally good health and living independently until age 91 when he developed community acquired pneumonia and died in the hospital after only a few days of treatment. Lucky guy too.
Afterward my mom insisted on living alone despite her clear inability to do so. My sister was given sole power of attorney by my socially isolated mom, who was challenged by the simplest activities of daily living mom. Mom soon descended into Alzheimer’s dementia .
My sister stole all mom's money and the courts made my mom a ward of the state. She went into a horrible little memory care unit at an assisted living facility where she lingered until age 100. My mom’s state appointed guardian listened to my inputs and recommendations during this time. Thanks.
There is no solution. We are all ticking time bombs. Deal with it now as best as you can to spare your loved ones.
28
So true. We Americans can not accept that we age and die. Then we or our children want to blame someone.
6
Many families are surprised to learn that Medicare does not cover:
1) residential long term care whether in an assisted living facility or nursing home
2) long term personal care in your home
3) care coordination services (with some exceptions)—this is basically the running around, scheduling, paperwork filing, transporting etc that is largely the unpaid work of adult children (mostly daughters).
Assisted living means different things in different states and is regulated (or not) as the states decide. What is disturbing is the number of facilities that accept residents whose care needs exceed what they can realistically provide. They are essentially taking in people who in the past would have gone to nursing homes, but they lack the nurses, staffing, and expertise to care for these residents safely. In some cases families are being sold a bill of goods and then pressured to spend more money on additional health aides to provide the needed care. It is not easy to navigate and while there are quality facilities at all levels of care, many are either unaffordable or have incredible wait lists.
And for those who think immigration is evil, consider that in many facilities the majority of aides are immigrant women of color.
40
My mother is 97. She now lives in memory care facility in San Jose.
I believe it is approximately $9200. a month. While they do take good care of her, she is very lonely, and she would be much happier living with our family.She has been patiently waiting to die ever since she arrived. I am 68, hope I die before i ever get put in one of those facilities...
26
@John Lindsay I'm similar situation. Please don't be glib. Why isn't she living with you? We need to be grateful that she has to money to afford it. My mom is lonely, but I'm not willing to stand up; neither are you.
6
@ckeown My father lived in Independent Living and then Assisted Living. My house was built around 1895 and has steep stairs. We have a floor furnace that does not heat the house evenly. My father could not live with us. In fact, I do not want to live here either, but my spouse refuses to sell the house and move to a single-story house. Some people don't have a safe house for elderly relatives.
11
Some people live in tiny apartments, they simply do not have the space or the money to get a bigger place.
1
I am very sympathetic towards the writer and many others, who have had to take care of severely ailing parents or elders. I understand that there are plenty of problems associated with it including finance.
The writer Geeta Anand found difficulty in taking care of her ailing father in America and as such decided to work in India. However unfortunately her father expired in 2017. Having known the problems faced by the severely ailing senior citizens in America due to heavy cost involved in the treatment etc, how come she chose to comeback. I am very much curious to know.
5
They should just change the name from Assisted Care to assisted theft.
Unfortunately most older people, and rightfully so have a builtin fear of nursing homes. Many were and still are horrible places to go die, but they're still better than most "assisted care" facilities where care is minimal at best and prices are so high they essentially just rob old folks of their retirement money and then from their families if they live long enough. My 90 year old father lives with us. He's absolutely terrified of the prospect of a nursing home and I've made the promise to him he'll never go to one even though he's a pain in the...neck most days.
9
Maybe this article addresses the wrong problem. Assisted living, memory care, skilled nursing care, whatever end-of-life care one chooses for one's loved ones or oneself, there's ultimately a denial about END of life. Was that 96 year old woman never going to fall, ever again? Do we really need more lawsuits filed on behalf of people who didn't die exactly as they deserved to do? As the Late Hank Williams sang, we'll never get out of this world alive.
28
This is true. However, it is also true that these facilities charge huge gobs of money, then understaff their facilities with workers paid starvation wages. Where’s all the money going? I realize any business must make a profit, but it doesn’t need to be obscene. Less spending on fancy facilities and more on staffing would be helpful too. You don’t have to live in a palace to be comfortable.
4
The elder care industry in the United States is, on average, designed to extract maximum money from their clients while providing a minimum of care. I hope that if I ever need to enter that particular system that I still retain the ability to end my own life before being warehoused to languish until death.
24
I am middle aged. Personally I like nursing homes to me they are just regulated group homes. I would be fine in being in a nursing home. What I think the writer of this article is getting at is that we need to be realistic about aging. There is some sort of fantasy that we can live like 50 year olds until the day we die.
The reality is that the majority of us will need some sort of care. And the likelihood that it is not a relative will be the norm. And a lot of us will needs years and years of care to get along.
14
@Elise, I spent two months in rehab in a nursing home last summer. The staff was fine, but I couldn't stand the food!
3
And I believe it's perfectly okay to die at 96 wandering around, oblivious to danger. How nice is that? Quick and natural death....I it were I who experienced that I would rejoice for a long life cut short by adventure, whether cognizant or not.
She was 96 and could still walk around in the middle of the night!! Did anyone here read of the award winning phycist who died 2 days ago at 61 while HIKING with her husband?
To each his own.
25
My parents hoped to "age in place" but after my mother fell, at age 89, and my father could not lift her, we decided that assisted living was a good option. Staying at home, even with a caregiver, is socially isolating and cannot provide the stimulation a dementia patient needs. I know some facilities are less good than others but we were fortunate to find a place where my parents could interact with others their age and be cared for far superior to what I could deliver with my family responsibilities pulling on me. They had two good years there and always marveled at how the ;adits took care of them. Each case is different but a good AL facility is a godsend.
19
So, we want maximum independence and high quality living facilities, round the clock care, prevention of any mishap or misfortune as we decline, but at a cheap price. Or perhaps we should learn that a dignified life requires anticipation and preparation for death - perhaps a voluntary one while retaining the best of ourselves, our self respect, and our own identity as people and not shadows of the people that we once were.
38
While this is an eye-opener, we started looking for a new house to retire in 3 years ago. We wanted out of NJ and congestion, and I wanted to move into a ranch or at least have the living, laundry and 1 bedroom on the first floor.
Shocking news is that only 10% of homes in the entire country are able to allow an elderly person to age in place, as very few have door widths larger than 30-31 inches wide (wheelchairs need 32 minimum).
My husband has already said that if he starts losing it, give him a strong drink with a dose of something in it or take him out back and take him down.
27
@mainesummers
Most housing in the US is not suitable for the elderly since cars are required, too.
14
@Djt
We found a ranch with 10 acres in NH that has a host of delivery services for meals, and town volunteers that bring people to doctors and errands once we can't drive; but, you're right, and most towns don't have this.
9
@mainesummers Have you looked in to an active adult community? My apartment has all the amenities you describe.Not perfect,but one of the better options
3
People who are not bedridden now have many options that weren’t available when Obama decided to ignore the part of the healthcare law that provided for nursing home and assisted living insurance coverage for people who cannot qualify for Medicaid. Most things, including food and medicines can be purchased online and arrive in a day or two. Doctors visits can be done remotely. News is delivered by the internet. No need to go outdoors into bad weather to get a paper. Uber and Lyft make traveling to see friends and to participate in activities easier without owning a car and driving it. Relatives can keep watch on events and conditions inside a home remotely by using cameras and the internet. Many people may therefore be able to remain in comfortable, familiar surroundings for years longer than before.
15
@Richard Wright yes, provided that you have no memory issues which accounts for a large segment of this population.
7
@Richard Wright
Obama fought tooth and nail for everything in the ACA and was obstructed not only by Republicans but by so-called "moderate" Democrats like Joe Lieberman and others who are Democrats in name only. I'm grateful he managed to put as much into it as there is. It's not perfect but for folks like me who were denied health insurance for over a decade because of a pre-existing condition, Obama is a saint. There are millions of Americans who, without the ACA, would not have insurance. If Trump ever manages to tear it apart, life is going to get a lot harder and more dangerous for more than 40 million Americans who will lose their coverage.
3
Assisted living is a godsend when it is well-run and properly regulated.
If laws are changed to require assisted living facilities to provide the same level of care and attention as nursing homes, they will become unaffordable.
5
@Merc Would proper regulation include mandating a higher minimum wage for those who take care of the aged, disabled or children?
9
@Thomas
That's a good idea everywhere in every facility and workplace.
2
Taking care of my mother, who lived into her late eighties, and helping with my wife's mother, she lived to be 99, what my wife and I witnessed, experienced, to be blunt, what money could buy, ran the gamut. I could easily write a thousand pages and not cover all the bases.
So, with that said, I'll cut to the chase. Even with more than adequate resources, it wasn't pretty.
We had the money, many optioins to chose from, all highly recommended with great reviews. But it's a flawed system, and make no doubt about it, many of those you will rely on to deliver the kind of care you simply imagine comes with common sense, many who are emplyed in this business sector are ill-trained with many lacking the sophistication you would simply take for granted, by attrition alone.
Do you homework. Excuse the verbage, but shop around. Show up unexpected, before you make your choice, and especially, once your family member is in place.
And most importantly, you will need to understand the importance of being what is referred to as the 'Patient Advocate' for your family member. That's a must.
I cringe whenever I hear the television ad with the announcer talking about a 'Place for Mom'.
36
@merc, A Place for Mom helped us narrow down the right assisted living facility for our mother. We found a nice Sunrise facility in my town. The people who worked there were like family and took great care of our mom. She really enjoyed the other residents and her caretakers. There were three nourishing meals every day, entertainment, sittercise, games, baking and sewing activities, and a current events discussion group. They also had family events and parties we attended with her and we visited often. She lived there for several years and died at 95 with family present. When I can no longer live in my house I would like to live in an assisted living facility.
4
Many assisted-living facilities call themselves Sunrise habitats. In reality, they're anything but that and mostly Sunset habitats.
5
@NParry, my mom was in a Sunrise facility. That's the name of the company. It was a nice facility and she enjoyed her life there. We all have to have a sunset eventually.
5
My 93 year old mother has spent the last 12 years in a assisted living facility. She has received extremely good care there and developed wonderful friendships with other residents. For about five years, she was very much in love with another elderly resident whose body was in a wheelchair but whose mind was in the stars. They took care of each other and seemed to really love each other. Ken died several years ago, her dementia worsened and now she does not remember him or me, her daughter. Although we were very close, my mother never wanted to live with me. She would have been too isolated socially during the day. Caring for a parent with alzhiemers or severe dementia is serious business, not to be taken lightly.
The value of my mothers nice home and all of her savings have funded her care. I will inherit nothing. That is okay because her living is AL was an excellent choice for her
I am age 54 now. This sounds macabre but I always tell my husband, when the time is right, when I am too elderly or demented like my mother to carry on, take me with you hunting and just shoot me. I love him and my daughters more than life itself. I want them to have something to inherit and lives unburdened by feeding me or helping me toilet when I don’t even remember Their beautiful faces or dear names
234
I hope I have the courage to take matters into my own hands if and when I reach that point in my life. Losing both parents in a short time to awful diseases has definitely changed how I think about aging.
49
Exactly and beautifully said
9
@Bowman
I could not agree more with your thoughts on dementia. My father had alzheimers for about 10 years. I have told my husband and my children to push me off a bridge. I do not want to live like that for years and years and burn through all of my hard earned money.
22
As a boomer, who has seen parents through the nursing home gauntlet, my advice is to age in place, at all costs and whenever possible. The author suggests nursing homes are "regulated and inspected and graded for quality to ensure that residents receive adequate care." Really? In Missouri, for example, the state tells facilities the exact date they will be inspected. So facilities Potemkinize and staff up. And the public wrongly believes Medicaid will pay for everything. No. With a five-year lookback, people must sell their home and lose their savings. The beautiful brochures suggest a dream retirement in assisted living facilities or nursing homes. The reality is nightmarish.
70
My mother in law lived with help at home for almost 10 years. She had severe dementia, not knowing us and truly not understanding what was going on around her. It cost over $150,000 a year to have live in help for her at home. Her last wishes before incapacitation was to remain in her home. In the end it was brutally hard to see her. Caring for her required outside help to come in to help her bathe and get comfortable. She died quietly of a stroke at age 89.
Now we're facing the difficult help prospects for my mother who is 96, and refuses any and all assistance and who is becoming more needy as the months go by. She enjoys living alone, and refuses to give up her independence. My sister and I contribute financially and our youngest brother lives around the corner and checks on her daily, bringing the mail and groceries. Mom doesn't want anyone living in her new home and she refuses to check into any assisted living facility. She wants to be carried out of her home feet first! Guess what. We're going along with her wishes. She's also told us, in her living will, that she wants no extraordinary efforts to keep her alive and no machines. And no cutting her up either. And one more thing; Mom wants her Flag for service in the Navy as a WAVE in World War II. She earned it.
So, assisted living may be fine for some. But not for our mothers. And I hope not for my wife and I later in life. We want to live at home until we have to be carried out.
And I want my flag too!
!
50
@Jack Frost. It must be nice to be part of the 1%...
3
The estimate of 40% of Assisted Living residents having dementia seems far too low. My experience with 3 different facilities is that it's probably 80-90%. In fact, it is the main reason why residents are there. These facilities often have a smaller Memory Care section and then an "independent living" section, but they are under such pressure to have full occupancy that they aren't too stringent in screening where individuals belong. Unfortunately, they downplay the prevalence of dementia and avoid even using the word. Many facilities look almost resort-like, but the swimming pool, weight room and movie room are usually empty. Attendance at "enrichment" programs is low. The money paid for these unused amenities would be better directed to adequate personal care by well trained and much better paid staff.
30
Many long-term care insurance policies cover in-home care. This insurance will pay for more than assisted living, which, from my family's experience, I recommend be avoided, if possible.
7
@Berkeley Native
Insurance companies are in the business to make money.
Long term care policies are expensive and have a lot of
exceptions. My 91 year old father found that out the hard way. His LTC maxes out at 150,000 or 5 years , whichever comes first. 150,000 won't last much over 2 years tops.
12
@Susan C Important points. I don't mean to encourage getting an LTC policy, as I don't know enough about LTC insurance. I am only saying that those who already have LTC may be able to use it for home care, and they may be unaware of this.
2
@Susan C It depends on what policy they buy. Mom's lasted four years; for her/me, it was a god send. But, I wouldn't buy one. Mom was 'lucky' she lived long enough to get the full value.
3
Long term care needs will be much greater in the coming years as the population ages. To fund the exploding need, Medicare needs to include LTC as a benefit at home or in a facility. It should be financed as a payroll tax throughout one's working life. To prevent profiteering, strict controls would be needed and it would cover 80% much like Medicare Part B. If Medicare for all is more than just words , it must include LTC.
12
@bahcom instead of yet more payroll taxes and shameless avoidance of the harsh reality, we should face things squarely! People should learn that life has its course. And being a self respecting human being means a quiet voluntary end to life before you rot into a shell and an empty husk of who you were. It is always best practice to leave the party before being asked to go home.
4
If you have a sudden stroke or illness, you won’t be able to do that. The other issue is too many of us are living paycheck to paycheck now. We are supposed to pay for our healthcare, pay high rents, pay huge student loans, save for retirement and pay for good long term care insurance on the low wages that most jobs pay now. How exactly does that math work?
5
Obamacare originally included long term care but Obama said many times that he would never follow or enforce the law.
Fascinating.
Since Ms. Anand shared so much of her personal story, and leaves so much unsaid, I have a few take-aways from this piece.
*She has a bias stemming from her birth and enculturation into a deeply homogeneous group. Why she sees the viability in the Japanese long-term care model; the Japanese are a deeply homogeneous group. Japan, an island nation that does not welcome just anyone who can turn up and need elder care from 65-85++ having never paid into the system. The heterogeneity in the USA and the astronomical costs of care seen to preclude such a success here.
*She felt an obligation to her parents to care for them (again strongly influenced by culture and rearing) that she has no expectation that her own two college-age daughters will meet. Or that they even should. This is a significant cultural shift.
*Such desirable long-term care benefits described by Anand, were usually the result of careful planning in youth, or being well-off in old age. Rarely, woke unions offered working people in their prime group rates to buy affordable coverage. This is becoming even more rare. Unions may want to think about offering excellent group LTC very carefully, it is something no politician is going to nationalize (at least soon) and such bennies for union members might keep many unions from dying once prescription, dental, hearing, vision, and health insurance are "for-all."
I hope the author does more on this topic, it was eye-opening. Thank you.
6
@WorkingGuy You seem a bit too cruel on the author. This is a great work but you are right in part, does not fit the present US. But, then, we all must accept, the US has a mess on its hands. Too many people wanting/needing care and not near enough resources to provide even the basic needs. My father died in an AL home that was horrid, black and in Louisiana is a bad recipe for living.
We must encourage the author to contribute more. This has to be ongoing as it is right up there with #1-3; Saving Democracy, Saving Mother Earth and preventing world wars. IMO
3
The other problem is how many can afford $4,800 to $6,500 per moth. I guess that the new 85 is not 60. Warehousing us seniors is not the solution. I am 70 years old, i hope that if and when I suffer from dementia or Alzheimers someone has the decency to slip me secobarbital, I have no interest living like a vegetable even if I could afford $4,88 per month. This is just a scam to enrich investors.
132
@Steve agreed get annual testing of your mental and physical health and prepare for that eventuality. Society would rather warehouse you and avoid the unpleasant choice as much as possible. You have to make your own plans. And savor the quality of life that you have.
12
$4800 a month is more than most people in the US make in a year.
2
Try $8500-$10000/month
2
The quote by Eric Carlson, "when you say nursing home, people say, 'yuk'," is very illuminating. It suggests to me that the real issue is that nursing homes have a PR problem.
Nursing homes have unfortunately taken on a connotation of being drab complexes warehousing unloved old people, and families have the idea in their heads that assisted living facilities are somehow "nursing homes done right." But in fact a good nursing home can really revitalize their residents and give them a new sense of independence, while also taking care of their medical and transportation-- basically, a good nursing home actually performs the function that many families falsely attribute to assisted living facilities.
15
@Ian
Good luck finding a good nursing home that staffs properly.
They are in it to make money.
9
@Susan C I'm so greatly that my parents selected a CCRC that comes with a nursing home i'm greatly for. Try to find a non-profit one.
3
This whole premise seems forced. The fact of the matter is that more care costs more money and few people have unlimited means to get the ideal level of care. People aren't fooling themselves. Skilled nursing facilities cost an enormous amount of money and most people, as much as they love their elders, are not willing to bankrupt themselves for their parents' care and will try to stretch the dollars wherever they can.
And in this country their is absolutely no stomach to share the burden. Every family for themselves.
28
@TJGM
This is so true. While you may not get what you pay for, you won't get anything for free. The cost of an assisted living facility where I could comfortably leave my parents was frightful (more than discussed in this article), but fortunately, they had saved and saved and could do it. To my knowledge, their facility gives patients whose dementia leaves them unable to be safely unattended the right amount of supervision depending on their situation, and if the patient and the family reject that level, the patient is asked to leave. It's painful watching parents grow old and lose control of themselves though, no matter where they are.
8
I can't imagine why anyone who is over 95 or has dementia would be placed in an assistant living facility in the first place. Those types of patients (and that is what they are) simply don't belong there.
21
Assisted living is a quality life for those who do not have dementia or serious physical health problems.
The dementia units in assisted living facilities do the best they can but the staffs are not paid enough to endure the level of care dementia requires -- the staffs get worn out.
If your loved one slips on the bathroom floor in the assisted living facility, it's off to the hospital then REHAB.
The Rehab is where your loved one can fall into one of healthcare's deepest pits. Most of these workers make very little money. Your loved one gets inconsistent attention and not so much of the rehab/exercise they are there for.
Your loved one in a dementia unit of an assisted living center may feel like they're in prison. Assisted living centers do not like having patients who are acting out, screaming or violent. Sorry to say, there are not a lot of places to put a seriously suffering dementia patient, except your own house.
21
Why do we insist on ourselves or our relatives living with ever-worsening dementia? There is nothing sacred about a human living in a fog a confusion, unable to stay safe, unable to recognize their loved ones. I think we should all take ourselves out of game when the writing is on the wall. Until we find cures or drugs that significantly arrest or ameliorate dementia, there is nothing moral about keeping people alive beyond any possibility of folks remembering who they are and how to care for themselves. We are all cowards, not facing this issue.
263
@voltairesmistress, My elderly mother, age 75, has dementia. She lives with my husband, me, and our two kids who are still at home, and soon my father will be moving in also. Sometimes my mom thinks I am her niece. Sometimes my mom thinks my husband is her dad. But... my mother enjoys her life. She laughs at my kids' antics. She loves listening to oldies and taps her feet and claps her hands and sometimes tries to sing along. She'll ask for (and of course will then receive) ice cream and Pepsi and pie. She plays with my dogs. She might not remember who I am, but she certainly remembers who her high school band director was, and will ask me to play the 1812 Overture "on the record player" (really Youtube these days, but she doesn't understand that) since the 1812 Overture was her high school band director's absolute favorite. She hears birds chirping in the morning, draws our attention to them, and comments that they sound beautiful. She observes and remarks upon the bees and other pollinators on the ragweed in my yard. She ENJOYS LIFE even if she has dementia. So what if she can't take care of herself? I can do that for her, and when I am at work I drop her off at a senior center where she is coddled and taken care of and made to feel like a queen.
35
@voltairesmistress While I understand the point you are making, it becomes a slippery slope to argue that some lives are not worth living and should be terminated.
8
@andrea olmanson
You bring up a good point: it's never as cut and dried as some try to make it out to be. At his end my father couldn't do much without assistance but he really seemed to enjoy getting his i-pod with a new book on it (even if a caregiver needed to operate it for him).
5
Watching our parents die is terrible. But I am so grateful that 14 years ago, my parents chose a CCRC that will care of them (actually her, since he died three years ago) until she dies. They moved, as planned, from independent living to assisted living four years ago. He died shortly later, but she recently moved to the nursing home (HCC, they call it) recently. It was painful, but at least I know it was the path THEY chose. I am sooooo grateful, that my dad made this decision.
If you don't want to live in a nursing home, figure out a final exist. Don't do that to your children.
38
A lot of money for very little true care—
Glad to see a piece that calls out the assisted living industry. Four older relatives tried them and left for ordinary apartments, where we could provide more care and services for far less $$ by combining paid caregivers, family, and friends—and these older people still enjoyed some independence and dignity. My mother left her facility after a neighbor fell just inside her apartment door and laid there in agony with a broken hip, calling for help. 12 hours later the house cleaners found her in their weekly visit. We haven’t dealt with dementia though, or prolonged severe disability. Those are tougher on families than our experiences. The Japanese model sounds like a plan!
25
After my mom's 4th stroke ("the big one") we were able to keep her at home with round-the-clock caregivers (wonderful people who became like members of our family) for 2 years, before she passed away. It cost several hundreds of thousands of dollars. We were incredibly fortunate that my dad's successful career enabled us to take care of her in this way, but it was a wake-up call. If you don't want to be warehoused in an institution, start saving your pennies.
14
@SouthernBeale: It's realistic advice for most Americans to amass "hundreds of thousands of dollars" to buy home care for the final 24 months of existence?
8
@Blair No, and if you really read her comment, she acknowledged that they were 'incredibly fortunate that dad's successful career' enabled that.
2
@ckeown: Huh? I did read the last line: "If you don't want to be warehoused in an institution, start saving your pennies." That sounds like advice to me. My question was whether it's realistic advice.
1
My father died of alzheimers at 93 in his bedroom, in his home in the Bronx that he and my mother bought shortly after WWII.
They took full advantage of all the city had to offer and paid for in-home health care. It was the home health care worker who informed my mother at 3AM that my father died.
They did not go broke, they continued to live their lives their way, were not a burden on their adult children or other relatives.
I've decided to make my home, which is free and clear, old person enabled and invest in it rather than $5K per month for a studio apartment in an assisted living facility.
I figure I can pay for A LOT of in home help for $5K per month.
I figure I'm OK as long as:
My vision remains good.
I can still drive a car
I maintain mental faculties to handle my personal business
34
Your plan is the ideal scenario that most elderly have until illness or injury strikes and the car is taken away.
You need a Plan B for when you can’t get off the toilet or put your clothes and shoes on by yourself.
Reality check...
18
@Paul that "as long as" requirement is unlikely to last until death...one or more will probably disappear a few years before you no longer need any help whatsoever...
4
You will find that $5000 a month is not nearly enough. You’re counting on things that may never be true, but you can drive your car to change your vision and your mental facilities
5
How come anyone think that any outsider will be a better caregiver than a family member. I know it is hard, but parents take care of kids when they are young, and kids need to take the responsibility of taking care of parents when parents are older.
15
@rs In general, I agree. My mother, age 75, has dementia and lives with me, my husband, and our two youngest kids. Soon my father, age 78, will be moving in. We have fun times together (last year I even took my mother on an international vacation with our two youngest kids), and I couldn't live with myself if I were to put my parents in a facility.
BUT... there are plenty of people who have had abusive, miserable childhoods, and whose mental health would suffer if they were to have their elderly parents move in. There are plenty of parents who didn't live up to their obligations as parents when their kids were little, and therefore have no moral right to make caretaking demands on their adult children.
11
@rs
Sweet idea, but most people can not afford to pivot and leave full time work to care for elderly parents. And the care parents give to small children they chose to bring into this world, does not entitle them to adult children who devote themselves to their needs. Not all parents merit the sacrifice you advocate.
9
@rs You are assuming that the parents took care of the kids....that is not always the case.
8
Personally, I don’t want to live in a nursing home and be “cared” for by staff. I’d rather pass by a fall (or other natural cause) when living independently in assisted living, than be kept alive by strangers who are paid to feed me poor quality food, wheel me to depressing “activities,” and keep me trapped in one building for my own safety. Life quality > quantity. Just my opinion, for my own life.
108
@ICU Nurse, we'd all like that, but you, of all people, should know, we don't always get what we want.
7
@ICU Nurse Of course, I agree with you. The trick is to die when you have fallen. If you end up in a bed with a broken hip/femur etc/ If you are not conscientiously turned side/back/side, taking careful care of elbows and heels, you WILL get a bedsore, know as a decubitus ulcer. They are painful, and guarantee a long slow death unless perfect care is given. And, I know you know all of this since you work in an ICU. Another nurse.
12
I’m with you. Especially the ‘activities.’ Lol.
Let’s climb out on the ledge, hold hands, and jump.
‘I kinda like the little rush you get
When you’re standing close to death...’
After Midnight, Blink 182
I’ve visited people in these warehouse facilities. They don’t play any good music. And it smells funny.
13
Get over yourselves. You are going to be a burden. The fact is, most of us have been burdens at one time or another our whole lives. That’s the way the game is played - forward. We take care of one another the best we can.
24
Growing old is great, I am 66.
I worked very hard and set up my sons well.
Now I still work> 40 hrs@ week, can say what I .like
and go where I like.
5
@sic/. 66 is not old. I worked until I was 75, full time as an RN. Because I wanted to. Now I am 85. We will see if you think 85 is great. All things considered, I am great at 85. And that can change in an instant, and much more likely to do so.
84
That’s fantastic that you are able to do that. Not everyone is that healthy at 66.
4
The author seems to lump together a very big bucket of residential options under the term “assisted living,” offering an overly generalized characterization of all “assisted living” that’s ultimately misleading. The term “assisted living” means a lot of different things to a lot of different people. The amenities can vary by for profit/nonprofit status and the level of care that can be offered will depend on how/whether it is regulated, which varies by state.
While it’s clear that there are many shortcomings in our strategies and capacity for caring for people as they age, dismissing assisted living without distinguishing between good and bad quality, without fully understanding where it fits on a continuum of care, and without appreciating the weaknesses in the rest of the system is not a helpful contribution. For example, it would be great to figure out the financing for home care and adult day services but who will provide that help? Across the continuum it is becoming increasingly difficult to find people willing to accept the low wages we pay for these undervalued services.
Another not very helpful contribution: the author also fails to distinguish between protective care for those unable to care for themselves and denying a cognitively intact older adult the right to assume the risk of living independently, whether or not we would agree with that person’s choices.
23
My mother in law is staying in a clean modern LA facility (almost $8000 a month), but it is understaffed. It doesn't help that the CNAs are paid slightly above minimum wage. Thank God for the immigrants who value their elders. They have a cultural capacity for patience and kindness not seen in the American staff, who don't last long anyway.
85
What I don’t understand is why a facility that charges $8000 a month per resident cannot pay a living wage and have enough staff. Where’s all the money going?
13
@Smilodon
I imagine you have heard of greed. Why do we have a country where it can run amok? And appropriate supports for not-making-a-profit caregivers are hard to find.
3
My dad only lasted a few months in "assisted living" before he needed to be transferred to a skilled nursing facility. My mother in law only last two months in a similar facility before being transferred to a skilled nursing facility. And my father-in-law just a year before he too was transferred to a skilled nursing facility. We get old. We become frail. We need help. And we die.
10
@caplane My dad lasted 7 months, but my mom lasted four years, in a CCRS assisted living, until she was transferred to the HCC (aka nursing home) component. We need to be grateful for what assisted living facilities offer. This article fails to recognize that.
11
The article did not mention the concept of ‘aging in place” and I haven’t seen anything about it in the comments. “Aging in place” is encouraging older individuals to stay in their homes by providing meals, assistance with hygiene or other physical care, modifications to the home if necessary, transportation where needed, visits from health care providers etc as well as community based seniors activities. This concept is gaining more and more popularity across Canada where it is supported by provincial public health care systems. It is obviously not appropriate for individuals with cognitive decline, but for those who want to remain in their homes and communities into very old age while managing physical decline it can be highly successful and has proven much more cost effective than institutionalizing these people.
50
@Sandra
It is the best, until the person starts having falls.
4
@Elizabeth
Or discovers that reliable, trained, honest helpers are hard to come by and difficult to retain.
3
They could have falls anywhere.
1
It's all about marketing. Assisted living facilities are appealing to the children of the parent(s) or at the very least to a slightly younger, more healthy version of the older self who will occupy the place.
Just as modern colleges invest in the glitz rather than the hard work of studying to convince students to come, assisted living facilities offer an optimistic, creative, and hopeful future … but you must be lucky to live that idyllic dream.
8
@JFR I am so grateful that my mom lived in a CCRC community that has cared for her. I couldn't have done that they do. Maybe you are a better person than I am
4
What is this article suggesting? That people should go into nursing homes rather than assisted living? That they should not stay in assisted living as long as possible? That they should not have aides to help them stay in assisted living?
There is a continuum of needs, and assisted living plus extra help is often preferred over (as well as cheaper than) a nursing home.
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@Jonathan Katz
Follow the money - Nursing Homes have Dementia Units, Assisted Living facilities have Memory Care. Memory Care units are not regulated as Dementia Units despite serving patients with the same needs. There are many poor Nursing Homes that continue to operate because State governments either do not care, haven't enough trained staff to inspect regularly, have been paid off...BTW almost all of the Senior Care facilities are now Corporate. They are in business to enrich their shareholders. This is a deep well of deceit and dark money.
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@wepetes Yup. That is about it. You are correct.
4
Old age isn't for sissies as someone once said. And not all old people are in need of more than an occasional help or helper. My youngest is 58, my oldest 66 with another 65 and 60. My oldest great-grandchild is starting college.
Frankly, unless one has done almost nothing to keep even minimally healthy, I think it is all a toss of the coin as to how well one does as one gets old. Perhaps one's disposition is about as important as one's ability to climb 3 flights of stairs without needing oxygen.
Also, how one deals with what physical problems one has (unless they are totally debilitating) makes a difference. Dementia/Alzheimer's disease is the only problem that I think we are going to see far more of as the population ages. Far more elderly live very comfortable lives even with physical problems whereas even 20-30 years ago they would have died far earlier aged, because science and medicine have made great strides.
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There is a big difference in assisted living facilities in both cost and services provided from state to state and county to county. this article may deal with some of them but there are others that it applies not at all.
8
Having cared for my parents for a number of years, I can speak from experience. My parents had long term care insurance, which was sufficient for my father to have care for about two years or until he died. What was left on the policy is insufficient for my mother, who is 95, reasonably healthy, with mild dementia, which is growing worse.
When she is alert, mom is charming, cheerful and calm. Then mom disappears, and a stranger appears, angry and paranoid.
She has a 24/7 aide, and daily family visits. We take her to a special senior center three times a week. She only recognizes us sometimes. She hides things - from her fine jewelry to used paper towels - and wanders through the house at night.
Dementia care for her runs $9,000 to $12,000 a month. She wants to stay in her home, yet she regularly forgetswho we are. She has called the police to report "strangers" in her house, only to have forgotten she has done it.
At the same time, we are paying college costs and trying to save for our own retirement. It's a terrible system and we can only hope it will improve for our children.
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Assisted living is okay for many people in the earlier stages of dementia. But dementia progresses.
My mother spent the last three years of her life in a locked dementia ward which cost over $6,000 per month. Medicare paid nothing.
Why? Dementia is an illness which requires round-the-clock care.
15
My father in law entered assisted living two years ago and as he declined and needed more help we learned that assisted living (here in NY) does not provide more assistance even when you pay for it, even when paying $8k per month. One of us had to go every single day and make sure he had what he needed. My sister did the lions share and it was her second job. There are no good solutions for those who live long and decline slowly but have significant needs.
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I don't know if I agree with everything you say but nevertheless an important column.
What I learned in life is that caring for any life crisis is best served by a mixture of free enterprise and gov't.
If you go to either extreme ie free enterprise facilities or totally gov't run places you usually end up with horror stories.
3
Yet another sign of how our wealth care system is failing most of us. Most people born during the baby boom years and after will be unable to afford assisted living. Most of us will be unable to afford decent medical care or housing. Self sufficiency was carried a bit too far in the 1980s onward. I know plenty of people my age and older who do not have enough money saved for anything let alone retirement.
When the government allowed companies to stop funding pension plans, raised the age for full social security benefits, broke unions, protected employer rights over employee rights, and let businesses get away with blatant violations of the weak labor laws, they set up the coming deluge of poor elderly people. It's as if they want us to kill ourselves. What a reward for paying our taxes, contributing to our communities, and being law abiding citizens.
It's nice to know that once we're over the age of 50 we can rot.
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You've hit the nail on the head. As a solo senior without spouse or children, and early cognitive issues, I figure I will have to consider offing myself. Even with way more saved for retirement than most, one significant medical issue or need for "wealth care" will wipe me out. And I actually want to enjoy retirement while I'm still healthy.
85
@Anne Hajduk, I'm so sorry. This tears at my heart because I know how hard it was to save anything.
17
@Anne Hajduk I too, believe i will have to fine a way to 'off ' myselfl because my husband won't. And, like you , we have saved enough, but that won't fix dementia.
14
Most of the assisted living industry, not dissimilar to the nursing home industry, is purely a real estate play. The author has properly identified the marketing techniques that the industry uses to sustain itself. Unfortunately, for frail older adults, the focus MUST be on their function and quality of life, but there are no incentives for the industry to do more than pay lip service to this. Ms. Anand has shone a bright light on an issue that we have to start taking seriously!
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@Michael Im so lucky that my dad (I'm a boomer) found a place I trust. Obviously not many people have that option (Google Wesley Commons).
2
The article points out that the average cost of assisted living for an individual is $4800/month. That is $57,600/year. The majority of woiowed seniors just do not have that so assisted living is not an option for them in any case, regardless of the other issues addressed in the article. This is even more true for couples when both are alive. In that case, even though the cost per person is a bit less when two share an apartment, it will still be over $90,000/year. Only a small minority of retired couples can afford that.
32
I'm having a bit of a hard time understanding the article because her notion of "assisted living" differs from mine. My experience of it with my mom was that it was fairly active in its assistance--the 24-hour caregivers gave care 24 hours per day, and there was on-site medical staff for dispensing medications and general checking up on well-being. Would this be a nursing home according to the author? Even with this level of assistance it was considered not to be "nursing home" care in the view of the facility, which had another building for housing those who needed help with just about every aspect of daily life. In any event, her stay there. for about year before her death, was anything but a "fantasy" of independence, as the author would characterize it. It came after about five years of her remaining in her home with the active assistance of family members. She went to assisted living when her daily medical and living needs became more than the family could address. It was clear that she was losing a lot of independence, but at the same time she was not being grouped with people whose medical and daily living needs were far more demanding than hers. In other words, it was about as good as we could do.
23
@alloleo That is my experience too, but , from reading this article, many people have not been successful at finding a community like we were fortunate enough to find.
3
@alloleo I agree with your experience and found this article to find bad examples of care. My mom is currently in assisted living. Her care needs outpaced what her family could provide with 3 times daily medication management and short term memory issues. She has her own studio apartment and feels a sense of dignity as she knows it’s her space. In terms of cost, our family was paying the same amount for in home care. I do feel remorse at times she is not living with one of her 5 children, all close by, tho think she may feel more isolated as she is home bound. I have spent the night with her, gone to meals and hung around where she lives to see what goes on. The place she lives is well run, only 32 residents, and excellent aides. Aging with memory, heart and breathing issues is challenging. I am so very grateful to still have my mom at 94 and she knows who I am. We can talk about long ago memories. I savor her.
4
What is a lit is the author's basic premise for this entire column: "It’s built on the dream that we can grow old while being self-reliant and live that way until we die."
The continuum of care is about making the varied levels of assistance necessary throughout the aging process and allowing individuals to select and modify the support they receive as needed.
How much more common sense could it be, and why would anyone oppose it?
8
@JBC
Because the continuum does not exist in a neat package. it is a hit or miss system depending on ability to private pay, care needed vs care actually provided, corporate profit margins... but private pay does not guaranty even good care... the system is terribly broken by greed at all levels of government and corporate oversight. Common sense is not part of healthcare for anyone let alone old people - it is always and only a profit making business run and regulated by people with no moral compass, no empathy, no conscience.
6
Most of elderly people want to live and die at their own home also in Japan. Formerly most of them were able to live at their own home because their daughters-in-law took care of the elderly instead of their sons. Most daughters-in-law were housewives. But a lot of wives have jobs recently, it is not easy for the elderly to live at their own home. Most elderly people enter nursing homes for their sons and daughters, giving up the desire to live at their home.
18
The author seems to be taking issue with assisted living for someone with dementia. Obviously, such people will need a very high level of care, and assisted living may not suffice. But to bash the idea of assisted living so broadly is, I believe (and my experience suggests) is wrong-headed.
Not being able to walk is no bar to an assisted living facility that is wheelchair (and by extension, rollator walker) accessible, as many are. My grandmother and mother-in-law both lived successfully in assisted living where they had their own apartments, but that offered congregate meals, activities, staff on the premises 24 hours, and (for an extra fee) assistance if needed with bathing and dressing.
There are two barriers that are critical: 1) caring for someone with dementia, and 2) paying for any type of in-home or assisted living. Too bad these issues get buried in a broadside against assisted living, which does indeed work well for many seniors who don't have dementia. If they can afford it, that is.
19
@catstaff
I helped my parents at the end but this took a great toll on both of us. I have no desire to be a burden on anyone and have my pistol loaded.
32
@catstaff - I agree; it works well for my mother. It's not perfect. But at 86, my mom has easier access to her washer/dryer (no longer navigating basement stairs); three meals prepared a day (she cooks when she feels like it) though the food could be healthier; assistance with her shower (assistance packages are readily available for the assistance that she needs); access to fitness classes and community (many friends have deceased, but she's able to make new ones); an onsite medical team and fitness classes and other activities; and remains near her friends in my home state, even though I live in NYC. She doesn't want to move here. Gratefully, she still has several great much younger friends.
My mother does complain about people in her assisted living community who have dementia and don't have sufficient care, not because of the building but because their families are not paying attention to their needs.
Gratefully, she can afford the benefits of assisted living and has adjusted to her independence, as well as her lack thereof.
3
@catstaff
Your experience is consistent with my own, and I found the article insulting to those who do live successfully in assisted living.
3
"Heavily subsidized home help and adult day care." I agree completely. I hope someone in power is listening.
14
It is impossible to care for a patient with dementia and guarantee no injuries unless you tie them up. Even then, as a physician, I saw patients tied up who managed to break bones trying to get out of their chair or bed. Be realistic - life is dangerous and the most dangerous part of living is getting older. When a child feels guilty about leaving their parent in a facility, they get angry if there is an injury. This is a symptom of guilt, which they do not need to have. Yes some facilities are poorly managed but most inquiries are unavoidable. As a society we need to accept the fact that some people will have a poor quality end of life. The Greeks said, "He whom the gods favor, dies young."
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@Alan Just curious how you worked it out in your head for even a split second that it was okay to 'tie them up'?
You did, of course, understand that they were human beings, right?
Can someone please investigate how much hospice care is charging the government? I have known of three elderly women who were recommended to hospice by their assisted living facility and went on to live for three years or more. My stepmother’s hospice bills cost the government almost $6,000 a month for 20 drop in visits (in Indiana) and she is not what I would consider end of life care eligible.
2
@Miriam
I support your request for an investigation. In our county, hospice is a 501(c)(3) public benefit non-profit organization, and for reasons related to my profession I've examined their books and they are barely staying afloat, despite Medicare, Medi-Cal, private insurance billings and donations.
8
Very informative article, thank you.
I don’t think some people commenting realize that you are healthy until the day you are not. It happens that quickly. Genetics is by far the most important factor in good health, which we as individuals have absolutely no control over. The second is not to smoke (and avoid other environmental toxins), and lastly to exercise and maintain a good weight.
I’m blessed with Swiss ancestry and long life on both sides. I’ve always exercised, don’t smoke, and have always maintained a good weight. But I’ve had two health scares in my life, which showed me how quickly life can change. My wife is a palliative care physician and quite often cares for patients in their 20s and 30s who are terminally ill through no fault of their own. Devastating.
Cherish life, spread goodwill and be generous with others. And try to make a plan for the day when you can longer care for yourself.
I once heard a priest remark that very often those who were facing death were simply stunned that their life was going to end. Death comes to us all.
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Genetics is no longer that important. Most cancers have no genetic basis. Sorry to burst your bubble.
2
I just don’t know what this author is talking about. My parents spent about 20 years in an assisted living facility in Albuquerque NM. It had apartments, dining, a well staffed and capable health care facility, activities and events. Mom got dementia and spent years in the Alzheimer’s unit where she received higher quality and more compassion care than she would have in a nursing home. Plus she had the benefit of a community of friends who could visit her daily. Dad was more fortunate, he lived mostly independently until 95 years of age. He decided he need to leave his apartment for the health care unit and died of a heart attack 3 weeks later. This facility cared compassionately for both my mother who died of a wasting disease and my father who lived the dream of independence to the end. They were satisfied with it and so are me and my siblings.
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@Bill
Wow--I had a friend in a facility in Albuquerque and could report the same: she, like your Mom, got dementia and had to go into the memory care/lock down part of the facility. Maybe it is the same place? However, I'm sad to report that due to my profession I've had a lot of experience in other states and that Albuquerque facility (if its the one I'm thinking of) is not only exceptional in its care, it is affordable. Too bad so many other such facilities are not professional or even often trustworthy.
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@Bill Could you please share the name of the facility? Thanks.
@Bill Could you please share the name of this facility? Thanks.
Serving the elderly, especially in response to their demand for extending life, regardless of the quality of that life or the cost, has become a pot of gold for certain entrepreneurs.
We, the beneficiaries of scientific advances in the health field, instead of focusing on a sensible lifestyle, most often choose to do as we please and, if we can afford it, privately or with assistance, depend on outrageous corrections of our misbehavior as we face the consequences of our poor choices.
Three of my grandparents died before today’s retirement age. The fourth, my father’s mother, carried 100% Armenian genes. As one of the Middle Eastern cultures, Armenians worked hard and ate a healthy diet, traditionally rewarded with long life. She lived into her eighties, about five years after developing dementia. My father, who benefited from his 50% good genes and from continuing his mother ‘s work and diet ethic, enjoyed good health until, at about 75 years of age, he began to feel the effects of caring for my mother who had less help from her genes.
She suffered from multiple health issues most of her life, which was extended beyond expectations with medication and care. Her care in her last years were costly and ineffective.
So far, at 85, I have been blessed with better health and quality of life than many of my peers. I resist unnecessary medication, have a living will, and an understanding with my two children as to sensible future decisions.
8
A "community" or "family-based system of care" is code for care done by women, mostly without compensation or respite. In his book Being Mortal, which is about the dilemmas facing people as they approach the end of life, Atul Gawande praises the personal care his grandfather got from family members in India without acknowledging that the good care for him was likely almost 100% at the expense of women.
I don't know what the solution to this problem is. We need new ideas beyond having female family members give up their freedom and earning power to take care of the old and sick.
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@CDM . . . Why exactly is this a problem? Another way of looking at this is that the extension of old age, and it's cost, might finally make us reevaluate (not necessarily abandon) the values of feminism; one way or another, none of us can "have it all," and "taking care of the sick," should be much more important in the scheme or life that your "freedom" (whatever that is in the context of death) and "earning power".
@dgm If a female family member stops working to take care of a parent, she 1) loses income immediately 2) is out of the workforce for some time, which makes it more difficult to re-enter in the future 3) is likely going to command a lower salary upon re-entry 4) will have Social Security benefits lowered because of earning less and 5) will not be putting money aside for her own retirement, and also losing any company match if applicable. This is obviously even more problematic if she is single, or aging herself. It sounds great to talk about the "values of feminism" or "taking care of the sick" - but how is the caretaker expected to survive financially? How is this NOT a problem? What am I missing here?
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@CDM
Right on the money.Women almost always end up doing all the heavy lifting.Even when it comes to in laws,a lot of times it will be the daughter in law doing all the work.
37
My plan for myself or any of my family that live in a skilled nursing facility is to put hidden cameras in the rooms. My
safety cannot be guaranteed by low paid, overworked employees.
Everyone I know working ( CNAs, LVN, Socialworkers) for a “retirement/assisted/skilled facility complained of gross staffing shortages. Plenty of nice furniture and pretty pictures but never enough care.
Way too many money-making greedy operators at the expense of the residents.
Trust none.
16
Open your borders and let people in! I can tell you there are thousands of African men and women that will happily work for whatever pay, taking care of the sick and elderly in the western world!
2
Two statements warrant my comment - First, we live in Canada where assisted living facilities are highly regulated whether private (and therefore expensive) or owned by local health authority (cost geared to income). My parents lived in a lovely private facility with plenty of staff with professional nursing oversight. For the first few years when they were well, they liked it and needed nothing. However it became trickier after my father's physical status deteriorated and his judgement became impaired (though he was not demented). He refused help which he plainly and badly needed. He became disruptive and rude towards staff and the facility was able to manage him only by tiptoing around him. Had it gone on much longer my brothers and I expected they would ask him to move out - which would have been a catastrophe as none of us could care for them in our own homes. After he died, mom was moved into memory care where she remains today and it exactly where she should be. The statement that memory care units are often not the right place for people with dementia makes NO sense. Modern living arrangements - homes with stairs, front doors that anyone can open, car keys that anyone can take, cold winter weather and adult children who work outside the home - are emphatically unsuitable for those with dementia - even with round the clock personal care assistants.
36
Ironically, this article makes me feel relieved that I'm too poor to afford assisted living. That's the consolation for having to work until I literally drop.
23
@Jenny
My heart goes out to you if you are financially challenged. I hope you find a way to retire--if that's what you want to do! not everyone does....--on very little resources. I personally know individuals in Thailand, Mexico, and New Mexico who are retired on $1500 a month social security. They live simply, and enjoy nature. I know some couples in similar locales who manage just fine on $2,000 a month, with their Medicare. I know this seems somewhat impossible, but particularly if you have some cash to buy a cheap home you can live well on a small amount of resources. People all over the world are doing so.
11
@Michael
Medicare is not available overseas.
4
Here in Japan, I experience on a daily basis the efficiency, dignity and common sense with which Japan treats its oldest citizens.
Residential care homes are almost unheard of; almost every older person lives at home or with their ’children’ (many of whom are themselves retired or semi-retired).
My wife’s grandmother, for example, lives with her son and his family half the time and the other half with her daughter, my mother-in-law, and her husband, both of whom are in their sixties and semi-retired. Every weekday morning a special needs-equipped car picks her up and takes her to the adult day care centre, which is brimming with activities focusing heavily on excercise and ’brain yoga’ like Suduko and board games. This is also where the doctors and nurses in the local healthcare community come to do regular check-ups.
Whilst all care systems have drawbacks I find that this mixture of family living, heavily supported by the state in this way, is the best possible solution.
Of course, it does require that we in the West accept the fact that just as it is our parents duty to look after us when we are very young, it is our duty to look after them when they are very old. Without this acceptance, no private or government system can ever fully work. Or, indeed, any final years have both security and dignity.
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@Nils Wetterlind Matsuda's comment suggests Japan's system is heavily dependent upon the unpaid work of daughters and daughter in laws who care for their elders. Leaving aside the equity of a system that imposes that burden on women, it simply won't work in a country in which women must work to help support their families. Yes, the wealthy can afford the high cost of in home full time CNAs, but what about the other 99%? Either we fund through a progressive tax system the cost of eldercare, or we should be honest and abandon them to fate's not so tender mercies. A society that values individuals by productivity has no use for the unproductive, so don't be surprised by the choice we've quietly made.
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@Nils Wetterlind
Nils--there are over 4,600 Adult Day Health Centers in the United States that provide much of what you describe. I ran one. They can be amazing, fun, vibrant places. They are a god-send to the families who want to keep aging relatives at home, but also want to go to work knowing that their loved ones will get proper nutrition, recreation, medical oversight, and general supervision. Although it is now fashionable on the right and the left in the United States to say that the government can't do anything well, these nonprofit Adult Day Health Centers that operate largely with government funds are one of many examples of how effective some government programs in fact are.
19
@Michael This information sounds promising. Sounds like a well kept secret. We need to get the word out there.
3
Be sure to read Atul Gawande's 'Being Mortal' - it's an eye opener. Very sesntive and very well researched.
14
People of every generation need to be prepared for the inevitable time when they have to step up to the plate and take responsibility for an aging parent, probably at their home or move them into
Devise some kind of plan with your siblings to equally divide up the home-care tasks and financial burden. Learn the ropes of insurance, medications, dealing with doctors, lifting and sponge baths.
It's going to interfere with your job, your vacations, attending your kids' after-school activities, but that's the way it is.
Better than winging it and having everything land on one person.
11
This article shows for me (a foreigner) another "myth" of the US: independence in living facilities for the healthy (?!) or the place for the sick to be dumped(?!). If you go to France people in their 80's and 90's are living beautifully and by themselves in their homes! Just look at the "concierges"in Paris! It's here that "healthy people" go to "living facilities" because they are "bored." Socially, there is such a division among all ages that after even 60 years old you begin to become invisible in society. Go to Uruguay, go to Argentina, and you will see that "older-healthy people" in their mid 70s and up are independent, live in their houses, go with friends (of ALL ages) to movies, or for a cup of tea, or sit in parks enjoying philately or just enjoying life. It's only in this country where the healthy- older have to recede: there is no place for them in this society, where only the young has the right to exist. Regarding, the "older-sick people" it's a pleasure (outside the US) to have them within the family, where there is a real family unit beyond the mum-dad and kids. Until all ages will enjoying from being with each other, when they realize that independence has nothing to do with receding from society and seeing each other just for big holidays, the age apartheid existing in this country will be keep alive and the business of living assistance will keep profiting from the age apartheid.
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@Maita Moto
I've lived and worked in seven countries and have a home in Vietnam, where my wife is from. I agree with much of what you wrote. Except: whenever I get out of the expensive, elite areas of the states--like last month camping in Idaho, Montana, and traveling through Nevada--I find a different cultural vibe among people in their 70's and 80's. Actively engaged in camping, fishing, hiking, hunting, snowmobiling, spending lots of time with extended family, very involved in their churches, often working part-time jobs or volunteering (Meals on Wheels, at church preschools, literacy projects, Second Harvest Food banks), playing bingo and bridge: they seem just as vital, integrated, independent, engaged as folks I know who are retired in Paris and Montevideo.
19
@Michael
Here. too, in New Jersey, there are hiking and even skiing groups whose members are past conventional retirement age, and even up to 90. Senior centers are full of the same age bracket, playing bridge, drawing and painting, woodworking, singing in choruses.
HOWEVER, those are the ones we see - the ones lucky enough not to have health issues (and please spare me the "if they'd only exercised and ate right" because I've seen plenty of people brought down by illnesses that weren't at all their fault. It's a lottery.
30
@Maita Moto Not sure where you found all these generalizations. As a Franco-American, I’ve had different experiences. One US family member, who was athletic into his 80s, was cared for day and night at home where he died. But two French family members were hobbled with pain in their 70s and had to enter excellent care facilities in their 80s because they were either too heavy to lift off the floor or too demented for safety. The last parent in the US, almost 100, just entered an excellent assisted living close by where medications are brought to her, she receives a lot of attention and can chose different activities. People are individuals, age at different rates, and are ready to die differently. You can’t generalize whole populations.
12
I worked on the periphery of this industry for 4 years. The new properties being built are very nice and I would disagree that there isn’t at least sufficient care in most properties for those with mobility or dementia. In fact, I’ve seen the exact opposite. That being said, what I have seen is that the entire senior living industry is effectively structured to take what remaining assets seniors may have, essentially becoming the sole beneficiary. In my own case, my wife and I have decided when we retire in a handful of years, we are moving overseas - both to get away from the craziness that our country has become but also because other nations have figured out health care in a way the US hasn’t and this includes the senior care industry
36
Where are you going to go? Can I come?!@Marston Gould
1
Assisted dying makes much more sense.
406
I agree!
Support your local chapter of Compassion & Choices! Before you have no choice in the matter!!@SHJ
5
Who can afford $6,500 a month? Maybe if you're a successful attorney or doctor. My dad was in a nursing home briefly. The most disgusting place I'd ever been in. Smelled like urine. the residents were falling and injuring themselves and the staff was incompetent. God, I don't want to get old.
28
@kerri
Around here, I believe it varies by state, these places will force your elderly family member to liquidate their assets as a condition of admission. They require huge commitments of money, but can then throw a person out for even minor-ish medical reasons. So they almost always end up in a nursing home anyway. It's such an outrageous racket. Hope to see more coverage in the NYT.
2
But you WILL get old. Support your local chapter of Compassion & Choices. While you still can voice a choice@kerri
2
Being self-sufficient until you die it’s not a fantasy. It is a necessity. It is very clear that the current administration seeks to remove as many people as possible from society: not white enough, disabled, and elderly, are all viewed as not fully paying their share you know...lazy, needy...and therefore they have got to go...
Can we get rid of these people and go back to a just, moral society, not one that says it is, but isn’t?
14
My mother died in her home, where she lived alone, at 92. My father's father died at home, where he lived alone, way out in the woods. If they did unsafe things, if they could have lived longer if caged, they chose the way they lived and died. I profoundly hope I can do the same.
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@Blonde Guy
BINGO! And so long as I'm even reasonably mentally competent, I hope no one will convince a department of aging official that I can't make that decision.
6
India had a very tightly knit joint family system. The social fabric has been damaged so much that it's no longer considered a viable option. People have outgrown conventional ways of thinking. The Author of this article has outlined the need for joint family social system. But in a modern world where family members are distributed geographically, very few families can afford to live the conventional way. But the symbiotic relationships between grand parents and grand children is very crucial. Children learn from grand parents who can pay attention to the needs of children, while parents are busy at work. Grandparents get the support they need from grand children who can afford to pay attention to needs of grand parents, while their children are busy at work. Even if a bread winner loses a job, someone else will be able to balance and meet the essential expenses without getting into debt. Compromises are essential for success of such a system, but small compromises are better than being pushed into government / private run social system.
4
@Raj
And woman are breadwinners, too. Some extended families are able to work out a calendar where children and adult grandchildren take turns tending to the older person, who is sometimes an aunt, not just a direct grandparent. Note, the best run nursing homes or assisted care facilities cannot prevent every fall or mishap. It will take lots of research, and uncorrupted government officials, to get all these homes up to snuff, but, as in hospitals, nobody can provide minute to minute personalized care. As a former nurse, I heard complaints on my old floor about nobody changing diapers every 15 minutes, or staying with a patient a full half hour during meals. Impossible. We have to set high standards, but they must be realistic. And, there are people living at home with varied conditions who fall and get black eyes, fractures, you name it.
9
That’s great if you have a large family & kids. What if you have neither?
2
I am 80 with copd so I cannot walk much without oxygen, which is heavy to carry, plus a knee I have broken twice, all thanks to 40 years of smoking. So limited activity. Beginning to forget words, how long before I forget to do something like take my Rx. I am not unhappy now, but worry I will not have the means to kill myself when I get worse off and taken to some facility where I have food I dont like and nothing to read or worse yet Altzheimer(?) like my husband did? The place he was in was not bad but I dont want to live like that. Why cant I have a pill when I want?
162
Totally agree with your concerns cahaper and wish that I could be there for you. If you are in a state that has approved you to have Compassion & Choices at the end of your life you are luck person - be sure to check on that@caharper
6
@caharper
"Why can't I have a pill when I want?"
I wish some forward thinking politician would take this on. What can a person do when they become too debilitated to live the way they wish? Elizabeth Warren has plans for all kinds of things. She should think about having a plan for that - what to do and how to do it when you decide you it's time to exit...
5
Much like in Soylent Green the planet needs a real Zero Growth Initiative. Reproduction needs to be limited to 1 child and it must be State sanctioned - if you are not equipped to have and care for a child you should not be permitted to have any. Euthanasia needs to be legal everywhere and encouraged. The elderly who can not take care of themselves are too much of a drain on the limited resources of the world today. It may sound cold but the alternative is the extinction level event that's currently unfolding picks up speed until it's all over for the planet. And that is going to happen within the next 50 years at current rates. Though we'll likely see World War 3 and nuclear holocaust before that, in which case it doesn't much matter.
5
All of these injuries and incidents could have happened to the people anywhere they lived, whether at home, in assisted living, or in a nursing home. Let's just stop pretending that there's something golden about the golden years. Our bodies wear out. We are all going to die. Some of us die in our sleep, some of us die from an accident, some of us die from old-age. When we have the ability to end our lives in a legal and compassionate manner, most of us will not choose to live in a nursing home wearing diapers and being cared for by strangers. Just because medical care can prolong life does not mean that we should do it. I am in my sixties and I've had a pretty good life. I do not want my daughter to have to take care of me while I live to be 90, nor do I want to go to a nursing home. I worked in nursing homes when I was a young woman and they are dreadful places. The waiting rooms of hell. Let's have compassionate assisted suicide and stop pretending that we all want to live forever. Most of these people who are suing should be glad that their loved ones died before life became totally unbearable for them.
241
My thoughts exactly. I am in my late 60s, in good health and absolutely at one with the notion I am gonna die. If it takes being eaten by an alligator, so be it. I think most of us are ready to die when the time comes. I have tried to make this very clear to our kids: LET US GO. Don't let us bankrupt you, or spend your inheritance, or linger in diapers and dementia. All for assisted suicde, sooner rather than later!
139
Linda and Elaine -- you are my friends! Thank you for voicing these opinions so eloquently@Elaine C
10
@Elaine C
Nope. Spend your money if you need it.
Forget leaving an inheritance.
7
My father has been in an assisted care facility for 5 years. Like the article mentioned, the LLC who owns his facility along with over 20 others, puts their money into the facilities. It's a great looking building, but the pay is minimal and attracts a revolving door of employees who don't have the skills to perform the jobs that need to be done. I see a lot because I stay with him for over a week at a time. I live over 1000 miles away. On my last trip, my brother & I discovered that an employee had taken over $12,000 from my father. She told him a sob story that wasn't true, but he believed her. Of course this is illegal and the incident was reported to the Attorney General's Office in Mississippi. That office is overworked and has not been able to address this case yet.
19
The Boomers were the idiots who popularized the absurd mantras “don’t worry; be happy” and “don’t sweat the small stuff, and it’s all small stuff.” You don’t expect them to give up denial in their yellow submarine now, do you?
5
@Fred White Are you a member of the Greatest Generation...who raised the Boomers? Sounds like it.
12
@Fred that mantra that you call absurd originated in 1894 by the Indian Spiritual Master Meher Baba. Bobby McFerrin (yes, a boomer artist) was the singer for that song "Don't Worry, Be Happy".
And painting any generation such as you did does a huge disservice and is lazy. It is not an accurate way to represent millions of people born between 1946-1964.
6
As a Boomer, Fred, your notion is, um, way off base.
2
Sounds scary but the fact is, one way or another, like it or not, that you will tolerate everything that happens to you until you die.
8
@Sipperd
Dignitas. The one-way ticket to Switzerland is a reasonable option when the things one must tolerate really do become intolerable. Death, at the time of my choosing, is far preferable to dementia and a nursing home, at least to me.
4
Very difficult issue. People want their independence. Not everyone wants to live needing to be helped on and off the toilet.
6
“Assisted Living” is a huge fraud and should be held accountable. They are outrageously expensive and quickly suck all finances of duped families dry. As soon as one does need assistance they kick you out. I have lived this nightmare personally with my mother. I see families living this nightmare daily as an Emergency Physician. Families who have bought this lie, were effectively swindled of all their finances and now have run out of options. Bank accounts drained, assisted live kicks them out. Punts them to the Emergency Department because they cannot or will not care for them.
To add insult to injury, Medicare will not pay for hospital admission nor short term or long term care unless they are admitted for 3 days. An admission Medicare will not pay for. They cant be admitted, they can’t go home. The ultimate catch 22. American society has been conned.
59
We physicians need to band together to help all others know and see what we medicos (from our jobs) know and see: End of Life care needs fresh consideration. To include having Compassion & Choices when we need them@Dave
14
The author is correct; most people of any age, including people over 75, don't want to think of what could happen "if" they need care and/or supervision. They think it is going to be like a movie in which you quietly slip away.
Surprise: modern medical care may save your life, but it might not give you a life that you find worth living. Bad things, sometimes very bad things, happen to people who ate kale and jogged for 40 years. After 80, your chance of being in some level of dementia is significant. After 85? don't ask.
Assume that you will not be lucky, and make a plan. Let people know what your wishes are, including your doctors. Go visit people in assisted living and in nursing homes so that you know more about what you want and don't want to happen to you. Try not to eat right before a visit. What you will see won't be easy to digest.
17
Spot on Cathy!@Cathy
1
Yet another example of the degradation of human life in a capitalist economy! What do we really expect when everything—the dignity of life and death itself—is sucked into the maw of the market? Such widespread dehumanizing treatment of our elders! How hollow are our much-vaunted American “family values!” I’d rather walk out into the desert and put a bullet in my head than force my son into such agonized worry over my failing mind and body. Suicide is certainly preferable, and absolutely the moral choice, when one is fastened and fed upon by a bunch of these vampire “investors.” God help us.
17
Also, people from many cultures would feel humiliated and isolated in a home for old people and alienated if the home were dominated by a community other than their own, in which the food and culture is totally different from their own. I am also from India, and my parents stayed with my wife and me, partly in America, partly in India, until they passed away. It’s a struggle but one that children have to take on.
6
As the daughter of two parents who were determined to stay in their home beyond what was safe for them, I am determined to not put my children in the same spot of having to make these very hard decisions. I feel angry that the general populace is being sold on the false idea of everlasting independence. It reminds me of the notion sold to many when I was a young woman: kids, rocking career, romantic marriage and more-- all can thrive together.
I am fortunate that my mother is in a reputable and caring non-profit, church based memory care unit. It still takes a lot of family participation to make it work well.
17
Not sure of your point here. Unfortunately there is a limit to the amount of care an institution can give, and I do agree with the need for certification. But you have not compared the safety/morbidity/mortality of assisted living with the alternative --staying at home. Not everyone can move to India to save costs, or can quit their job to take care of Mom--nor should they be required to. End of life sucks, period, and it will always have the same outcome ultimately. If those in this stage of life can interact with peers, move freely, and be treated humanely, that will be a far better result than most would have alone at home unsupervised, or in a skilled nursing facility.
15
There was a time, there were a people, who took their old folks up to the tops of mountains -- or other wild and deserted places -- and left them there to die peacefully. (I can't find much information about the particulars.) I'll be 82 in a few weeks, about to lose sight in the one seeing eye, and am worried that someone will come along and shove me in a dump somewhere with a bunch of nattering, boring, smelly old people and plunk me in front of a television set (which I don't own and hate with a passion.) All these struggles, all these worries, all this pain could be lessened if we only could be prescribed what we need to commit suicide when we know it's time -- or when we want to go. Why the hell do we force people to live when they don't want to?
332
@Rea Tarr, I doubt seriously that elderly left to die in the wilderness, died peacefully! They died dehydrated or from exposure to the elements if they were not first torn apart by wild animals. Our system isn't great but let's not romanticize such a brutal idea!
32
@Rea Tarr While you still have vision you could research means of ending your life if you are so inclined. If I remember correctly you said you had thousands of books and macular degeneration. Have you looked into reading machines? I think that leaving people on mountaintops to die was more peaceful for the leavers than the left. If you are worried"someone" will shove you "in a dump", speak to your relatives about your concerns. You might even check out local nursing homes to see if any are bearable. Don't give up without exploring your options.
17
Religion ensures many will live in pain. Pain is a virtue to them.
8
In today's world, old age is a curse, not a blessing.
We need to change the mindset of endless self-sufficiency so that people can accept help with out feeling like a failure.
We are dealing with my elderly *80 year old* in-laws. They think they are doing great- it is a disaster.
They bought into the idea that if you did all the right things you could live well until an very old age.
They are incontinent, they give money away to strangers, they are a menace on the road, they think they don't need help.
They have no self awareness. So many people think there is something wrong if you say " I am old and I need help".
It is ok to need help in old age. Just like it is ok to need help as a child. I am middle aged but I pledge to acknowledge my limitations so that my kids can take care of me.
19
@Liza
Provided you have the presence of mind and/or the rationality to do so. This is most assuredly not a given.
3
The problem is people view assisted living as an alternative to a nursing home. It is not. What they are is an alternative to living at home with some help coming in or living with relatives. There is a wide range in levels of service in senior communities which until you have been forced by circumstances to look into them most people are blissfully unaware.
First is independent living which is really just a substitute for living at home and taking care of yourself. Provides more social support and interactions that living support. These facilities may offer services such as meals, house keeping and laundry. These are the only type of senior living that is clearly understood.
It gets tricky at the next level of facility, what most people refer to as assisted living. But there are also residential care facilities (RCF) which provide more help than assisted living. And the RCFs have gradations. The casual observer may not realize the differences.
Nursing homes, technically Skilled Nursing Facilities, provide the most care but are what everyone wants to avoid. They are the most expensive but once a persons assets have been depleted they are covered by Medicaid.
5 daily living activities is what determines the level of care. The ability to feed, dress, bath, toilet and transfer. Transfer means to get from bed to a wheel chair & back. Inability to do 3 will mean a SNF. Dementia is evaluated differently.
Learn and know the differnces or placement becomes hit or miss.
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@David Ruth
Your comment is an excellent primer. Some of the examples in Prof. Anand's op-ed concern people whose placement in an assisted living facility was improper. An assisted living facility should not serve as a memory care facility or a SNF on the cheap.
10
@David Ruth
"Once a person's assets have been depleted" makes moving onto Medicaid sound pretty simple. If the person is already impoverished, that is one thing. But for a middle-class person who has some income and assets but not enough to pay $5,000 or $10,000 a month (or more), it is not simple. Most people have no idea where to start.
13
From personal experience with an aging parent, and aging in-laws, older people with dementia will wander, fall and injure themselves. If they are on a blood thinner to prevent stroke due to atrial fibrillation (relatively common in elderly population) and fall and hit their head they may have massive intracranial hemorrhage, which if they survive, further reduces their quality of life. Older people with dementia may become paranoid and belligerent requiring heavy sedation - this may necessitate them being bed and/or wheelchair bound. Not a great way to live. Given these circumstances many will need 24/7 one on one supervision - not easily accomplished from a personal, institutional or monetary stand point. No easy solutions here. The idea of assisted of living offers some escape from this harsh reality.
5
I think assisted living can be made to be very effective in long term care facilities with enough financial resources and professional management. The problem is that these 5 star nursing homes are hugely expensive, 10,000 a month or more.
If we have 18 million people over the age of 85 in 2050, and they were to be provided with expert care for the very old and infirm, the cost, exclusive of medical care would be over 2 trillion dollars years. Add a trillion or two for chronic and very expensive illnesses and end of life care and the numbers are horrifying, unless you are a private equity group or hedge fund taking in the dough. It could bankrupt most of us.
I think an essential strategy is to pursue through medical research protocols to advance healthy lifespan.
If the average person in our society could have a healthy mind and body until very late old age, that would no doubt make the financial, social and psychological costs of aging manageable. In fact, we may have no choice but to devote large public and private funding in this direction.
5
My sister and I put my Dad into an Assisted Living facility.He was there for two years and did well even with Alzheimer's setting in. But those who have the money can help their loved ones live a good life.
There came a point where he would have to move to an Alzheimer's unit and we just didn't have the money. So we moved him to a nursing home. While his quality of life wasn't as good as it was it was better than him having no place to go.
This situation is just gut wrenching for children and loved ones.
We're all going to be getting there if we live long enough. Let's not go back to the way this was (of course people didn't live as long.)
6
Every time I read an article about how bad living to an old age can be as the end draws near, I get angry that assisted suicide is such a difficult option. I simply want the right to end my life if and when I choose. What a great weight off my shoulders it would be to know that I had that option.
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@pb
Newsflash: life may be great till the very end, but they want you to feel as miserable as possible and hopefully you will kill yourself off, hopefully sooner, rather than later, now that everything that you do for society can be outsourced to a robot who doesn’t need anything. Don’t underestimate the greed underlying what is happening in our society.
13
I completely agree, PB - and I have my final exit all planned out. :-)
9
@pb - I'm with you. If an 18 year old woman can get an abortion (i.e., end another developing human's life) after only a 24 hour waiting period, as I think she should be able to do, then one who has reached, say 65, should be able, especially after a reasonable waiting period, to obtain a lethal dose in order to end his/her own life. I think the law will eventually have to move in this direction. I just hope it's not at a snail's pace.
24
The prohibitive cost and lack of nurturing care/monitoring in these facilities in the US will have me looking overseas for care. My recent "discoveries" were fabulous elder care facilities in Chiang Mai (Thailand) almost exclusively marketed toward expats - 1:1 care/monitoring with nurturing staff.
7
Nowadays, many of us outlive our brain health... for years. Unless you've already 'been there, done that' for an older relative, you have no idea what it takes to care for somebody in very advanced old age, even if they only have short-term memory loss, and even if there's enough money around to pay for 24/7 care at home.
We have our heads in the sand...
31
"Yes, he did walk up the stairs with his walker and fall down and die, but he had a right to do that.’ That’s a horrible defense. You don’t just allow people to do unsafe things.”
Actually - yes you do - there is a burgeoning body of research regarding QUALITY of final years versus merely surviving the final years.
Sensibly - we are finally starting to question the paradigm of living in a bed until you're 99 vs. the risk of a fall and death when you're 89.
194
What are links to two or three of these research studies? I'm thinking that they advocate for allowing self-determination by seniors within their cognitive capabilities, but not allowing neglect.
8
@Bruce Sanders
It is a strategy called the "Dignity of Risk" and it applies to seniors, people with disabilities and the cognitively impaired.
You can go back as far as Perske (1972) or more recently Ibrahim (2013). "Impediments to applying the 'dignity of risk' principle in residential aged care services"
And "neglect" is often the code word for we do not want to deal with any assumption of risk by a senior or other person because it is easier to keep them corralled.
19
@SteveRR
Thank you. I found the Ibrahim paper to be useful. I’m not sure “Live fast, die young and leave a good looking corpse” was the best choice of lead sentence for a policy statement about the aged. However, that’s a minor flaw compared to the excellent point that “[C]ognitively impaired residents usually have some capacity for decision-making and expressing their preferences.” It’s consistent with the guidelines psychologists use in assessing diminished capacity in older adults (https://www.apa.org/pi/aging/programs/assessment/capacity-psychologist-handbook.pdf).
6
Getting older is no picnic apparently. The Japanese have a solid resolution to the issues. That could never happen in the States unless there is more liberal approach to the problem and better recognition of the needs and care of the old folks.
7
Worries about old-age don't take into account that the end of life is just that. Period. The end. There is no nirvana, unless it's after death. Independent folks still need round-the-clock caregiving in the last hurrah samsara of life. Disgusting, the assisted-living industry that's mushroomed into a lucrative nation-wide money-making business. Storehousing the elderly.
All of us will need care in our geriatric years, unless we shuffle off to Buffalo before then. By 2050, there'll be 18 million elders, 85+ years of age. And they'll need help. Another euphemism for a profitable assisted-living facility is a nursing home.
Seniors are living longer these days. Congressmen and women are active in their 80s. People are running for the presidency in their mid-70s. Will we wake up to the problem of human overpopulation on earth? Or will our planet take care of it as it always has with disease, war and famine?
11
We should all be so lucky as to be active and self-sufficient until we suddenly die. Subsistence living just to go on living is truly distasteful; yet our medical system is putting most of us on just that path.
That warehousing people is a for-profit industry is a monument to how our society has deteriorated morally.
31
@Susan you may not suddenly die. That’s a nice fantasy. More likely, you fall, injure yourself, and suffer for a long time before you die.
5
Everyone, especially baby boomers with memories that go back far enough, needs to grasp this. "Assisted living facilities" are what we knew as "nursing homes" 40 years ago. What we today call nursing homes house the permanently disabled, or function as short-term rehabilitation centers, or hospice. Joan Lunden's chirpy television ads are fantasy. Assisted living is not the country club with grab bars in the bathroom; they look, smell, and function like nursing homes, no matter how fancy the entry vestibule. They are the out-of-pocket nursing home that you use until you are so sick you qualify for the subsidized nursing home.
24
The title of this article makes no sense to me and the arguments run counter to my experience with my mother who went from independent living in her condo at the age of 97 in a DeKalb County, GA retirement community where she had been for over 15 years to the assisted living wing when she was no longer self sufficient. She called me a few days after she arrived there and said, "They are caring for me beautifully here." But, she had already sustained brain damage from a fall while still in her condo and died in an Emory University geriatric center nursing home three months later. My niece and daughter who lived much closer than I do visited her frequently there at the nursing home but had no complaints concerning the level of her care. My point is, they are not all horror stories. However, a family member must be vigilant and advocate for the patient, especially when in the hospital which is another story altogether.
15
Own your death as you lived your life.
I marvel at those who want to eke out every last drop of diminished life from their deteriorating bodies. To what end I ask?
Why burden others (financially and/or emotionally), your children in particular, with the overwhelming task of sustaining the physical shell of you, of a once proud and productive human being. Such an end, being sustained as human vegetable matter in a nursing home, is not on my agenda.
Make plans while you are hale & hearty as to your end days. Make your intentions, your wishes unequivocally known to those who love you. There are any number of available sources of information on owning your death as you lived your life. Check out Britain's "My Death, My Decision."
"Death is nothing, but to live defeated and inglorious is to die daily," observed Napoleon Bonaparte. One can only imagine his sentiments if his last days were in a nursing homes, soiling himself. No thank you.
82
@Christopher Robin Jepson. AMEN
7
@ Christopher Robin Jetson
Napoleon died from stomach cancer exiled on the island of St Helena possibly poisoned by arsenic. In a bed. But he was indeed able to end the lives of countless others through expedient means.
While the profits to assisted living owners and shareholders are obscene, I think you should have better recognized the incredible hard work and dedication the caregivers demonstrate on a daily basis, often for not much more than minimum wage and under seemingly impossible circumstances.
54
We should have the legal option to request euthanasia rather than to submit to being warehoused with dementia, possibly for many years.
348
We put our mom in a memory care unit. They sell features like outings then you learn 1/4 of residents get an outing each week. Seeing what she went through I resolved not to be treated for even UTI if I become demented. Let me die from a fall or infection. No warehousing for me.
26
for those who are unfortunate and have parents like the ones in this story obviously all true. but there are many of us whose parents at age 90+ are still driving themselves to their doctors' appointments when they die. each case is different.
6
@allen You are very lucky. Most people are not healthy and independent in the 90s.
The problem is that when we use anecdotes the majority who need help are treated as if they did something wrong.
Everyone should plan to need help in their 80s and beyond.
Perhaps you and your parents won the genetic lottery, but public policy needs to be based on the needs of most, not the lucky few.
12
My wife and I are approaching the assisted living age. Both in good health and very active but a fall, sudden illness, and who knows. Our children are kind, caring people but jobs, children and the physical wherewithal to tend to a 230 pound mass or 24 hours of looking after a demented couple boggles the mind.
Now the article mentioned costs. However not a word about the original buy in for the apartment and then 50-80 k a year fees to start. Really? Most people can't come up with 500 dollars for the broken auto. The millions just cant afford the illusory Eden presented by the A.L. industry. And even if you can it is an illusion f real care.
What are we left with? Three things: Regulations. Taxes. New models for our aging population. We can't get the government to enact universal health care how are we going to get money for all the oldies? Lol
25
Read Barbara Ehrenreich’s book “ Natural Causes”. She describes how she refuses to run to the doctors for three month follow ups on every this and that, not wanting a medicalized old age. I’m sure if she broke her arm, she’d get it set, but she insists on not leading a “ medicalized “ life. Just her age, I am of the same philosophy. Corporate medicine/ healthcare sees us “ oldsters” as cash cows. No thanks.
117
@Ellen: My 89-y.o. stepfather, who drove his truck, gardened, and looked 20 years younger, announced the doctors wanted to do open-heart surgery. Incredulous, I asked, "What happens if you refuse." He said they told him he'd slow down and feel cold more often. I replied, "Of course you will. You're 90." But he drove himself in his new car to the hospital, survived the surgery, and died of post-op infection. But the hospital and doctors still got thousands.
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@Blair
Blair...sorry your Dad had to go that way. I’m trying to spare my fellow taxpayers, and myself. For profit healthcare has figured out many ways to milk seniors, to which I plan to say nope. ( I look younger, too, and a big thrill is being questioned about my age at the airport when I leave my shoes on...this is a right once a person turns 75).
8
Very sorry this happened to your family. The risks of surgery — generally higher, of course, in older people — are not always well explained/understood by patients.
That said, your loved one may have preferred this outcome to the predicted change in his vitality.
It’s his lens that mattered, not mine. And I say that to remind myself! My father is suffering adverse consequences from today’s “same day” procedure as I type. He is 93 and of sound mind. He chose to have the procedure. We will wait & see...
8
A major issue that was hinted at in the article is family. Some help (with time and/or financial support), most don't. The ones who don't often have an inflated sense of ability for their parent(s), so they resist change because "it's alright as is". Being the "adult in the room" gets you not only unimaginable administration but the drag on your emotional well being of doing the right thing in the face of sibling ignorance.
I've had 2 calls in the last 3 hours about my parents from the facility they're in....and the news on that end is always bad.
4
In a way I was lucky that my mother, who had Alzheimer’s, lived overseas and had wonderful care in a brand-new facility. I’d visit several times a year, but never had to worry about her. All at no cost to her or me.
7
The myth of assisted living and the resultant tragic outcomes is what happens when the demands of ever-increasing profit for corporate shareholders is more important than the safety, security and quality of life of our elders.
I worked in the industry as a nurse administrator for <1 year - long enough to learn *all* about its ugly under-belly. I left chagrined and disgusted.
But, hey, the market will regulate itself. Right? Right?
74
@Theo" When we were searching for my mother's assisted living facility in 2016, I found I preferred places run by a foundation or church rather than for-profit facilities. Rural was also better than urban.
20
This issue is part of the larger health care issue. People should not have to go bankrupt to have the health care they need to live. This includes the health care required due to old age and increasing illness and injuries as a result.
We have a choice as a nation: accept responsibility for helping people with these costs, or make euthanasia acceptable. Instead, we continue to try and find a middle ground which only winds up placing the burden - often crushing - on people. And before anyone says: "We can't afford to do anything else!", stop and consider the TRILLIONS spent on the military, wars of choice, and corporate welfare. Surely we can carve a little out of that massive pile to address health care for Americans!
As to the assisted living industry, we need to regulate and monitor them much more closely, at least until we can get Universal Health Care. Like any for-profit enterprise, profits are their only concern, not patient welfare, and unless the government forces them, they won't change.
49
After my father died, my mother waited one year, then sold their house and moved into an assisted living facility. She did well there for about 4 years, but when she was about 87, she developed dementia and the social worker at the facility called me and gave me a list of group homes that took dementia patients.
She lived the last 7 years of her life in a very nice group home that had 8 residents, all physically healthy (that was a requirement) but with dementia. There was someone on the premises 24 hours a day, and she liked it there. The caregivers arranged for a music teacher to come in once a week, and the residents all liked that. The place was clean and comfortable, but not fancy, meals were nutritious.
As her dementia got worse, the monthly cost increased, but even just before she died in 2000, it was only $2,700 a month. That was because everyone was physically healthy -- which is often not the case with people in their late 80s and 90s.
Mom and I were both fortunate that she was able to spend her final years there. But we should all be so lucky -- literally. The people who raised us and cared for us deserve it.
41
@scrim1 You were lucky!
13
My, mom, who is in her 90s, was something of a self-made woman and saw the '70s TV character "Maude" as a kindred spirit, so it was understandable that she wanted to live her later years without any interference. A caretaker came around every other day to clean and make sure she was eating well then leave after lunch was served.
The one day the caretaker found her lying unconscious in her bedroom. The pager to alert somebody to come help had been left in the living room. My sister decided there and then that this independence had to stop and moved her to her own city where she put her up in an assisted home. There was some push-back from my mom at first, but when her room was finally furnished and decorated just as her house had been before it was cleaned out and put up for sale, she felt quite at home there.
During her life, she was always too busy to be sociable, but meeting others very much like herself did a tremendous amount of good. Yes, is somewhat pricey, but it's worth it for her sake.
18
I vehemently object to the notion that wanting to provide independence to seniors at the risk of their injury or death is a bad defense when someone does die or gets hurt. Everyone should have the option to do what will give them their best life, including opting for assisted suicide, so long as they know the potential or determined consequences and that they are not permitted to engage in behaviors that could hurt other people. My father-in-law has been told by multiple people including medical professionals that he should not live alone in his two-story house. My husband has grappled with calling social services on him, but eventually decided that it’s his father’s life and if he would rather die in his house than move to assisted living, that’s his choice. And I think my father-in-law’s life will be much happier for it. But my husband has also made it very clear to his father, who has been in several car accidents now, that if he ever tries to drive a car again he will call the DMV to get his license revoked immediately. It isn’t right for my father-in-law to make life and death choices for other people sharing the road with him.
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@KDF Good for your husband for choosing to be respectful. Physical 'safety' is meaningless if the cost is psychic trauma and destruction. Nursing homes, memory units, assisted living are prisons intended to infantilize and demoralize. It's shameful that we imagine we can treat our elders as 'toddlers'.
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@KDF
Do you think it matters whether those are conscious choices vs. actions undertaken by people unaware of the risk to their lives? At least one of the individuals mentioned in the article had dementia when they entered a situation that led to their death
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@KDF
"But my husband has also made it very clear to his father, who has been in several car accidents now, that if he ever tries to drive a car again he will call the DMV to get his license revoked immediately."
Your father-in-law will try to drive a car again as long as he has a car and the keys.
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My mom had Alzheimers the last 7 years of her life and my dad had already passed away when she was diagnosed after walking the neighborhood at 3 in the morning lost and unable to find the house 3 doors down. The police brought her to the ER. The ER would only release her to a 24 hr supervision facility.
The long and short of it was our family was in a tail spin figuring out how to pay the $4,000 per month at a very mediocre board and care home. It was awful and to my dying day I will feel like I let her down because we could not afford better. The nice comfortable, good vibes, well managed facilities can charge upwards of $6,000 to $10,000 per month and more. Many well off people have lost their homes to cover board and care. It is an awful, awful situation. I will fly to Switzerland for a speedy death, if necessary.
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@Pinkie-doo-da An Elder Care Attorney should have helped you to establish Medicaid eligibility for your Mom.
Alzheimer's is a vicious disease. You were unhappy with the level of comfort provided for your mother. Was she unhappy?
Frequent, random visits by family members will help insure a safe and reasonable environment for those in any living environment.
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To be admitted to a skilled nursing facility a patient must meet the criteria of requiring 24 hour nursing care. If not, they are not admitted. Until they spend down all of their money and lose their housing they are not eligible for Medicaid coverage. Unless they need skilled nursing and rehabilitation they are discharged from sub-acute units in nursing homes. If you have long term care insurance and private funds you are welcome to live in your choice of assisted living facilities. If you don't well......
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I am so glad to see this piece. I, too, cared for my mother. Fortunately, I was in the position to do so, and, fortunately her struggle (with brain cancer) was short. My life was uprooted for nine months as I provided 24/7 care. I was delighted to do it, but couldn't have done it much longer.
I have a friend who has overseen her father's "assisted living" care for five years. He's in his 90's and requires far more support than the facility can (or does) provide. She is there for hours every day. If she complains too much about lack of supervision or care, they threaten to expel him from the facility. The author is correct that the line between "assisted living" and a "nursing home" is a more like a chasm. Her father needs more care than can be provided in "assisted living," yet he is far to lively and social to be bedridden in a nursing home.
We're at a point where society much take a brutal look at how we service our aging population and we, as consumers, must demand better for our seniors and, eventually, for ourselves.
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What you describe as 'assisted living' facilities seems much more like independent living, to me.
Here in our community we have Independent Living, Assisted Living, and Memory Care.
In ASSISTED LIVING, there is help with ALL the Activities of Daily Life: Toileting, Transfering, Eating, Dressing, Bathing. The amount of attention is FAR greater than in Independent Living.
In Independent Living we do indeed have a spa-like setting, a fancy dining room with table cloths, cloth napkins, and servers who take our orders from a menu.
This is Independent Living.
Those who want more help in INDEPENDENT LIVING can engage the service of home health care workers, who come to their apartments to help with exactly the same activities of Daily Life, by the way.
Once you are accepted into Independent Living, and your needs increase, you can engage and pay for additional help.
In Assisted Living, this help is the built into the concept of assisted.
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It is critically important to understand the different levels of care, what each facility can offer and how the care is going to be paid for. A lot of people assume, wrongly, that assisted living is just another name for skilled care.
Good facilities will screen applicants to make sure that each level of care is the appropriate placement for someone. Sometimes families are in denial. I've talked with intake nurses who tell horror stories about families who think their loved one will be be perfectly fine in assisted living or even in an independent senior living situation when in fact the person is in need of a much higher level of care.
It is also critically important to be realistic.
My mother is in her late 80s and has been in memory care for the past two years. At times I wish we had worked harder to keep her in her own home. Then I think about the behavior issues we've had to deal with: wandering, pacing, obsessive rummaging, dismantling everything in sight, removing her clothing to void and defecate on the floor and the furniture.
This is challenging stuff, especially when dementia is in the picture. The issues transcend whatever arguments we might have about "the industry." This is a societal dilemma. And many family caregivers need far more education and support than they're getting.
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I have had parents in assisted living facilities and they worked fine. They provided basic needs such as cooking, cleaning, laundering without requiring expensive live-in help. In an emergency they summoned help immediately.
The author appears to have had unrealistic expectations of what was on offer, and blames the facilities. They are not nursing homes. They are not rehab centers. But the good ones can enormously improve the quality of life for the aging.
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@JS I would agree. Both my parents were in assisted living. Assisted living was never meant for dementia care. Anyone who thinks so has not done any due diligence as to what facilities provide appropriate care.
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Agree with the authors perception of assisted living. Her opinion of nursing homes is also misinformed. Some of the worst medical facilities I’ve ever encountered were nursing facilities. The infrastructure is usually run down, the staff clueless and if you want high quality, you’re looking at thousands if not tens of thousands a month.
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@Barbara F: Perhaps in leafy Concord things work differently, but in Pennsylvania my mother's A.L. facility had many demented residents as well as some lock-down infrastructure. In some states A.L. has absolutely taken up the slack in an environment that underfunds or does not provide enough beds for skilled nursing.
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Lobby for better supervision in these facilities, and the owners/administrators have to set limits on who they will admit, unless the resident and/or family can afford one on one care, 24 hours if needed, to avoid a real nursing home. Continuous care facilities, which are pricey, can move residents around, as needed. Staying at home with extended family works for some, but isn't cheap, and is loss of income for the family member(s) who become full time caregivers, which in itself can sometimes ruin the health of that caregiver.
Facilities do serve a purpose, as one to one care is impossible. Imagine bringing in enough immigrants to provide that kind of care to the mega millions baby boomers. Just like many other problems, our government and healthcare providers need to come up with better ideas. And, many elderly people do not/will not have happy endings. Our ancestors didn't live as long with the many co-morbidities we "enjoy" today.
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Any call or demand for regulations particularly in USA is labelled slippery slope of socialism. What is justification for the high profit in unregulated assisted living industry? Perhaps will realize sensible regulations are sensible even with capitalism and health care including assisted living should trolley be non-profit business.
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@Hoshiar high returns are a product of the market cycle.. all real estate asset classes have returned 10%+ annual returns (which is largely the result of ultra low interest rates.. an anomaly in modern history). Given the liability (risk) that comes with operating an assisted living facility, returns should be higher than less risky real estate asset classes (hotels, offices, etc). The answer is not always to blame capitalists- without those willing to take risks and able to be rewarded, care facilities will be undersupplied and costs would skyrocket (yes, much higher than they are today). Have a look at the UK’s social care situation if you wish to see evidence.
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@Carl:
What is wrong with having sensible regulations particularly if these facilities accept people with significant medical problems such dementia or major mobility issues.
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This country’s mythology is that it was built on independence and self-reliance. There is a lot of evidence to the contrary.
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For several years I served on boards of retirement communities. In those days the goal was to provide independent living, assisted living and skilled nursing in the same facility. Now, thirty years later, those facilities have dropped skilled nursing and expanded assisted living. Skilled nursing facilities are much more expensive to operate and construct. Yet, many people I see in assisted living are not receiving a high enough level of care and are in danger from from falls and other accidents. The situation is even worse for those with cognitive impairments.
This country cannot agree on the need for universal medical care, let alone senior care. Medicare provides no coverage for custodial care and only a limited amount of skilled nursing benefits. There are private and costly long-term care insurance policies available. However, I have seen people outlive their policy benefits and have to go on Medicaid.
Our supposed tradition of self-reliance is fallacious and cruel. The Calvinist streak that runs through this country seems to make us believe that people suffer because they deserve it. We need to recognize that everyone regardless of age needs help from their community at certain times during their lives.
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When my very good father had the Alzheimer’s and could no
longer stay at home and had to go into a nursing home, my
mother and I took turns visiting him in the evenings and on weekends, she one day, me the next, where we shaved him, toileted him, brushed his teeth, cut his nails, saw to it that he was eating, had on the right clothes and comforted him when he grew agitated.
The nursing home -- an expensive one --talked a good game, but frequently fell down on the job, so for the next two years, we took on the job that we knew right from the start was ours.
People frequently think of nursing homes and health care for the
elderly as largely matters of money, but in real life it is a lot more than that.
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My wife and I recently retired. She was a nursing home and an assisted living facility (ALF) administrator for many years. I worked in health and human services policy, so know many of the issues from that angle. problem in many ALFs is that people who moved in while younger have now “aged in place.” These individuals often do not wish to move to a more restrictive setting (eg, skilled nursing home), even when their health and abilities makes the ALF a poor setting to meet their needs. And families, who often had to struggle to convince mom or dad to move to an ALF, don’t want to go through another move. Additionally, ALFs are too often under pressure from “corporate” to keep their apartments at full capacity (and making money). So, even though the ALF staff realize an individual cannot be served appropriately in that setting, they are caught between the proverbial rock and hard place when it comes to providing appropriate care and having to appease the corporate bosses.
Don’t get me wrong. There are many, many fine ALFs and other long-term care programs out there. However, the increasing number of new programs being built and more people living longer creates a systemic problem that I think will just get worse.
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This is a very difficult issue that most of us are unprepared for.
My mother is 93 and has been suffering from dementia for about 8 years. My father is 92. My mother sundowns and if we didn't do what she wanted, she would sneak out of the house and flag cars down to take her where she wanted to go. Then she started falling and eventually my father could no longer pick her up. Although it was a tremendously difficult decision for my us to make, we eventually found a memory care facility and Mom has been there since this March. It took some time to adjust, but now she seems to really love it and the activities they offer. The staff gives her lots of attention, knows her well and they seem to genuinely enjoy her. She thinks she's staying in a hotel.
Now the difficulty is my father's health has declined drastically over the past couple of months. We hired in-home care for a few hours a day as a compromise to assisted living because my father loves his home and never wanted to leave it. But it did not take long before my brother and I needed to take turns spending the night with him and it was exhausting. We moved him in with my mom this week. Mom is tremendously happy to have him there.
These are emotionally painful decisions. My mom may love being there, but I don't know how well my dad will adapt. I wish we had the resources to give each of them what they want without having to worry about finances but one simply cannot predict how long they will need care.
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@Gina
You sound like a very sensible person and a loving daughter. I wish you and your family all the best.
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@Charley horse, thank you so much for your kind thoughts.
Its interesting to read this as a UK health professional. We typically have 3 levels of elderly social care:
The first is community care provided either in the patients home or in what is known as warden-controlled scheme. I think you would describe this as home help in the US. This varies from help with cleaning/food shopping weekly to 4 visits a day from carers to provide personal care.
Next up is residential care which sounds like a better regulated assisted living (your assisted living sounds like our warden controlled). Here a team of carers are on staff 24/7 to provide all personal care to residents as assessed to their individual needs. Generally they will facilitate medication being given and check on residents throughout the day to make sure their needs are being met.
Finally we have nursing homes which provide all the facilities of residential homes with the additional support of having registered nurses on site to handle some more medical care like if the resident needs injectable medications.
All of this is privately funded until you have savings of less than £16000 and have sold or transferred any house you own at which point the cost is picked up by the government. 6 weeks of home help is available for people discharged from hospital and the NHS sometimes may also pay for you to have rehabilitation in a nursing or care home if you don't need to be in hospital anymore but aren't medically fit to go home yet (sort of the same way its funded by medicare)
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My parents had an end unit in a retirement community and I moved across the country to help them in their final years. Both of them suffered from failing health in 2014 and I drove them to doctors appointments, cooked for them, ran errands for them. Fortunately I was divorced, but I am so glad to have helped them during that time. Even though I was around a lot some of their things were stolen by aides. They died five days apart from each other in the same hospital, different wings.
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To be fair, these facilities are pretty good at providing a social life and housekeeping to people who can't get around on their own anymore, but they are not providing medical care.
I know a lot of people who were almost forcibly moved to an assisted living facility and were VERY happy. Sadly, they usually age out into a nursing home pretty quickly, so they have two wrenching moves instead of just one.
One interesting solution is "aging in place" facilities that have "independent living" apartments, assisted living facilities, and a nursing home all under one roof (or at least in one complex). They are tend to be pricey, though.
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Assisted living facilities are overwhelmingly for-profit and are generally for healthy people with money. The market is much more varied than it was twenty or thirty years ago so a great deal of research is required to find the best options. Not something adult children with suddenly sick parents are generally equipped to do.
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