I keep thinking of a friend who devoted herself to the care of her elderly parents and neglected herself in the process, despite feeling unwell herself. By the time she saw a doctor she had only a few months left to live. Now that I have an elderly relative in my life who is a serious alcoholic I can see how this self-neglect can happen. There are only so many hours in the day and one needs a break. I wonder who will die first, me or my childless uncle.
17
So many tragedies are recounted in these comments! Please don't despair.
We must *fight* for what we --all of us--need. Surely the lack of support for caregivers is an issue that Republicans (people, not politicians) as well as Democrats can rally around.
This issue can help unite Americans against Trump's plans to slice away all government's best functions, when they need expanding.
We must *fight* for what we --all of us--need. Surely the lack of support for caregivers is an issue that Republicans (people, not politicians) as well as Democrats can rally around.
This issue can help unite Americans against Trump's plans to slice away all government's best functions, when they need expanding.
9
Once again, let's consider the option of allowing our ailing seniors to end their suffering by following the example of one of the most evolved humans of our history, that of Socrates, who drank the hemlock not because he was ailing, but because he did not want to leave Athens. We should all recognize our option to leave life on planet Earth when it becomes too painful to experience.
18
You sound like a supporter of culling the herd of seniors whom you deem undue burdens on society. At what age exactly, do you suggest they're no longer useful, and should be disposed of?
14
Yes, this kind of care is left to volunteers or next of kin. Along with things like teaching, counseling, advising, and many other forms of useful and meaningful work that the corporate bottom-line model finds no value in and will not support. Nor will the corporate controlled Congress.
This is where the jobs are that cannot be given to robots. An economy that values people, not widgets, that is what we need.
This is where the jobs are that cannot be given to robots. An economy that values people, not widgets, that is what we need.
26
I am caring for my father who is 95. We do not have much of a choice as my sister stole most of his money. He refuses to prosecute her and now I am stuck with his bills and care. This has been a disaster for our family emotionally and financially. I care for him 24/7 for the last 6 months as he has CHF. ( I have been giving him light duty care meals ect for 7 years) I am not able to run my business because of all the care he needs. If I had it to do all over again I would not. The toll on our family has been tremendous.
35
One would think long-term care insurance can help with home based care. But not all LTCs pay the same whether you are at an institution or at home. The one I had will pay for a shorter period if the patient is at home. I let it expire, and shopping for one that pays equally.
5
"Who Will Care for the Caregivers?"
Friends, family, neighbors, colleagues, philanthropists, clergy, etc. government, not necessary.
Friends, family, neighbors, colleagues, philanthropists, clergy, etc. government, not necessary.
4
Easy for you to say; as sole caregiver to my own elderly parent for 9 yrs until he required skilled nursing in a facility where he still resides. My only sibling conveniently lives across the country and visits once each year, and my father's former colleagues and WWII buddies have all passed. Don't rely too much on other people who may not be around in your waning years. And when you run out of funds to pay for continuing care, it's the government who picks up the tab via Medicaid.
30
The government's social safety net absolves all people from caring for those near and dear to them. The social safety net separates families, neighbors, friends and colleagues. Families have fallen apart since LBJs war on poverty.
7
That's one of the cruelest things I've ever heard. I must assume that you are either a millionaire, or else you have no insight into the risks in your own life.
Will you be able to quit your job to care for an elderly parent or child, sister or brother, full-time? What will it be like to lose most or all contact with friends? To watch your full and happy life shrink to the size of a single room--a sickroom? (If you're positive other relatives will do this instead of you--hahahaha.)
If you outlive the family members you expect to cheerfully care for you when you develop a devastating illness or just get old and frail, who will change your Depends?
Will you be able to quit your job to care for an elderly parent or child, sister or brother, full-time? What will it be like to lose most or all contact with friends? To watch your full and happy life shrink to the size of a single room--a sickroom? (If you're positive other relatives will do this instead of you--hahahaha.)
If you outlive the family members you expect to cheerfully care for you when you develop a devastating illness or just get old and frail, who will change your Depends?
67
Put down the comic book. I doubt you are the caretaker in anyone's family - we are not talking about theory here, but reality.
22
I took care of my Mom. She lived with her brother and sister, and as they died and she became unable to sustain herself I moved her in with me. She was just starting dementia and had no assets. At first she was able to go to day care, but eventually she was unable so she was at home full time. She had a Mon-Fri caregiver through our local Area Agency from 9-5. Sat and Sun it was just me. I got her up every morning, changed her, and lifted her into an easy chair. Then I left for work so I could support us. In the evening it was just me again. I gave the caregivers a key to the house because I had to leave for work before they got there and back after they left and prayed a lot. I made all her meals in advance, pureed and froze them into individual containers so they could just heat them up then spoon feed her. I handled the meds. We were fortunate because she didn't need any special treatment like breathing tubes. My reward; she couldn't talk to me but had the biggest smile when I held and cuddled her. I did this for about 3 years before she passed at 91; I was 53. Emotionally draining, getting up thru the night, every weekend rarely going anywhere, and watching your loved one waste away, knowing they won't get better no matter what you do
I'm 66 now and still working full time, scared to death to retire because I don't see my kids doing the same for me nor do I want to put that burden on them. Trying to save every penny I have.
I'm 66 now and still working full time, scared to death to retire because I don't see my kids doing the same for me nor do I want to put that burden on them. Trying to save every penny I have.
70
You did a great job.
37
As we all know, dementia and Alzheimer's are debilitating for the victims and their families alike. It takes a huge toll....physically, mentally, emotionally and financially.
Not surprisingly, it's in the Netherlands that someone came up with a genius idea of creating an entire 'town' for those with dementia or Alzheimer's. In fact, this town is a self-contained facility with trained workers, but yet was built to look like a normal town, complete with shops, theatres, etc. Everyone is in on the secret except for those suffering with these illnesses. As a result, they are able to live relatively normal lives, feeling 'at home', and without all the trappings of impersonal, clinical, prison-like facilities.
If only this could be implemented in all major cities throughout the world!!
http://www.theatlantic.com/health/archive/2014/11/the-dutch-village-wher...
Not surprisingly, it's in the Netherlands that someone came up with a genius idea of creating an entire 'town' for those with dementia or Alzheimer's. In fact, this town is a self-contained facility with trained workers, but yet was built to look like a normal town, complete with shops, theatres, etc. Everyone is in on the secret except for those suffering with these illnesses. As a result, they are able to live relatively normal lives, feeling 'at home', and without all the trappings of impersonal, clinical, prison-like facilities.
If only this could be implemented in all major cities throughout the world!!
http://www.theatlantic.com/health/archive/2014/11/the-dutch-village-wher...
46
Very thoughtful article highlighting what the unappreciated family care givers are doing and will be expected to do. I may add many of us provide care to an older family member, typically a parent and at the same time provide care to a grandchild. Our children are not able to afford full time dare in many cities especially if they work late hours. We juggle and do not think of what is going to happen to us. That's life in these Americas that we wish to make great again.
14
Our greed-based medical system and old-age care agencies have become quite adept at sucking up the assets of the elderly and infirm. Those without considerable savings or family willing to care for them are going to be in a bad way.
32
Yes, and the facility of choice fully encourages applying for Medicaid when funds are depleted, and the next step is selling the family home right out from under them. As long as they get their money, their comfortable with leaving the patient and the family destitute.
13
We married late in life, for the first time, and have no children. I worry about our later years, especially as I have health issues now. We do subscribe to insurance, a separate policy from our health care, through my husband's employer. We are guaranteed, each, 3 years of nursing home care, or 5 years at home, possibly more, depending on how much money we pay in and services cost. My only question is, will it be enough? And, if I require a longer period of care, what of my husband? Is he to become homeless because I need care?
23
That is only the beginning. Who is going to pay for the $100K/year cancer treatments, the $1,000K/yr administrators of hospitals and insurance companies. The biological medications for nonfatal illness. The twenty doctor check-up because it takes one doctor to look at each organ.
Society has to make some choices and it won't. The system is broken and will collapse. Perhaps there will be a phoenix moment. Wishful thinking. Realistically the rich will get care and the rest of us will just die. For profit medicine.
Society has to make some choices and it won't. The system is broken and will collapse. Perhaps there will be a phoenix moment. Wishful thinking. Realistically the rich will get care and the rest of us will just die. For profit medicine.
29
Outsourcing care to volunteer family members is not new. Some 30 years ago, my father had a hernia repair. That had only recently been changed from "surgery" requiring an overnight stay to an "outpatient procedure."
In preparation for our roles as volunteer nurses, my mother and I received a briefing on post-procedure care, The hospital staff efficiently helped my dad complete all the items on the checklist that would discharge him into our "free" care.
Unfortunately, my dad was dilatory about providing a urine specimen, the final box on the checklist. The staff seemed quite perturbed about that-- not out of concern for my dad, but because he was impairing the efficiency of the assembly line.
During this unexpected delay, I asked a nurse what happens when a patient does not have a family to volunteer care after an "outpatient procedure." She knew exactly why I asked that question, and said "Go to singles bars, take out personal ads, ask friends for fix-ups... do everything you can to get married ASAP. Your life will depend on it."
Despite taking this advice, I never did get married. And my only family is my dad, now nearly 91 years old (and fortunately in good health). Maybe my insurance company will authorize physician-assisted suicide if I ever need a "procedure" that requires a team of volunteers to care for me? But what else should I expect from a medical industry focused on the wealth of executives and shareholders rather than the health of patients?
In preparation for our roles as volunteer nurses, my mother and I received a briefing on post-procedure care, The hospital staff efficiently helped my dad complete all the items on the checklist that would discharge him into our "free" care.
Unfortunately, my dad was dilatory about providing a urine specimen, the final box on the checklist. The staff seemed quite perturbed about that-- not out of concern for my dad, but because he was impairing the efficiency of the assembly line.
During this unexpected delay, I asked a nurse what happens when a patient does not have a family to volunteer care after an "outpatient procedure." She knew exactly why I asked that question, and said "Go to singles bars, take out personal ads, ask friends for fix-ups... do everything you can to get married ASAP. Your life will depend on it."
Despite taking this advice, I never did get married. And my only family is my dad, now nearly 91 years old (and fortunately in good health). Maybe my insurance company will authorize physician-assisted suicide if I ever need a "procedure" that requires a team of volunteers to care for me? But what else should I expect from a medical industry focused on the wealth of executives and shareholders rather than the health of patients?
60
When my mother died at age 92, she'd been living with me, my husband, and my children (19, 17, 14) for several years. My husband and I made a little room for her right outside our bedroom so I could listen and get up with her in the night. During the day, she went to a wonderful day program run by Catholic Charities. Those years were exhausting, but we were all happy and relatively comfortable. What made a difference: We were able to pay a contractor to make a little sleeping area and second bathroom in our home because my mother--unlike many women of her generation--had a nice pension in addition to her Social Security. And we didn't have to choose between my job and a nursing home because her day program was very, very generously subsidized by the Catholic Church (and we aren't even Catholic). We're grateful to have been able to live together during her last years. But I feel guilty that we had an opportunity that other families deserve and don't get.
37
Nearly all families are affected by elder care, and in many families someone wants to provide care. But as the writer and some commenters have noted, help for caregivers is sparse, too expensive, or non-existent (think rural areas). What concerns me are moves in Congress to scale back Medicare and Medicaid (the latter provides nursing home and home care to impoverished elders), along with an assumption that family will be there when needed (simply untrue in some cases). If you want policies that support elderly persons and their families, you must lobby Congress and state legislatures for them, and resist efforts to curtail health care programs for elderly and disabled persons. Otherwise, more responsibility will be shifted onto increasingly smaller families.
27
I'm 61. I have no kids. Taking care of my elderly mother, who lives in an "independent living" building is exhausting and depressing, though in large part because of my mother's personality. She's irrational and impossible to please and it gets worse and worse as she gets older and older. It might be easier if we had a good relationship. I don't know. Still, the point is that I'd like to be able to have a few years to enjoy my life before I reach "elderly" and that's not going to happen so long as she's part of my life. At least now, she doesn't need daily care. On top of that, my husband and I are having to manage finances and medical care - he's terminally ill and needs full-time care - half a world away. I can't imagine how people who also have kids to take care of can do this.
35
A woman's work is never done. And often unpaid and under appreciated.
40
This sort of gender self-pity is tiresome. Reality check: millions of jobs involving a "man's work" are poorly compensated, greatly unappreciated and, compared to womens' jobs, highly dangerous. The principal difference is that women bridle at the notion that there is a thing called "a man's work".
7
Kept my parents out of nursing homes and did hospice at home with my mother. You have to be prepared, from a young age, to take time (for me it was a decade in total) to care for your parents and every parent risks ruin for their children.
I'm glad someone else sees how few of us are prepared.
I had no biological children and won't depend on relatives or friends. I won't retire, either, so the day I don't log on for work will be the day I die.
I'm glad someone else sees how few of us are prepared.
I had no biological children and won't depend on relatives or friends. I won't retire, either, so the day I don't log on for work will be the day I die.
18
Seriously, check out the mindfulness app. Once I get home, before checking on mom, I let the app guide me in a brief meditation. Though it's only 2 minutes, it is fortifying.
12
We need to study how other countries handle elder care. For example, the $$ currently spent on the last 6 months of most people's lives (which is when the most money on healthcare is spent during the entire lives) could be shifted towards services like medical housecalls, in-home meals, or elder day centers. Especially in light of the fact that a fair proportion of Americans do not want to languish in the ICU/ hospital if they have a terminal illness or an irreversible condition. I've also heard that some Scandinavian countries have a system in place to care for the elderly so people aren't scrambling for care when they need it.
Of course better than shifting healthcare funds is simply to stop engaging in needless military skirmishes. Stop buying 10 jet fighters and you could get at least $350 million to fund care from that alone.
Of course better than shifting healthcare funds is simply to stop engaging in needless military skirmishes. Stop buying 10 jet fighters and you could get at least $350 million to fund care from that alone.
30
When I turned 21, I became my dad's caregiver. He was a homeless vet and the VA declared he had hypertensive vascular dementia. Dealing with the VA, in addition to the dad duties while attending college, getting my first job, and all that stuff you do as a young person staring out in life; was the most challenging time of my life. It was also the most rewarding. As the article states, "It can deepen relationships and offer the time and space for connection where it otherwise might not exist." I am an only child and my dad was widowed. My dad and I were not close at all before I became his caregiver. But our experiences getting through all the hardships we faced, made our relationship grow into a very loving, compassionate and forgiving one.
I did get a pamphlet for caregiver support from one of his adult daycare facilities. once. I even attended a meeting, but I was significantly younger than the other caregivers. My friends were carefree college students and every older adult, would just offer sympathy not knowing what to say or do. So I did the best I could on my own. Overall, I felt very isolated as a caregiver. At times, I was so frustrated, angry and depressed.
My dad passed away in 2014 from kidney failure. I miss him so much and I am so grateful for that time we had to bring us closer together despite all the hardships. The aftermath of being a caregiver is definitely rediscovering who you are. I am working on that as I approach 40.
I did get a pamphlet for caregiver support from one of his adult daycare facilities. once. I even attended a meeting, but I was significantly younger than the other caregivers. My friends were carefree college students and every older adult, would just offer sympathy not knowing what to say or do. So I did the best I could on my own. Overall, I felt very isolated as a caregiver. At times, I was so frustrated, angry and depressed.
My dad passed away in 2014 from kidney failure. I miss him so much and I am so grateful for that time we had to bring us closer together despite all the hardships. The aftermath of being a caregiver is definitely rediscovering who you are. I am working on that as I approach 40.
24
I am 49. My husband, who has muscular dystrophy, is 47. He requires extensive assistance with everyday life activities from bathing to dressing to meal prep. We exist nowhere in these discussions: every middle-aged adult is caregiving for a parent or child. We fall through every net. We have no help--except for what we pay for out of pocket. Am I physically ill? Yes, in fact. And it doesn't matter.
34
This is a good article. Home based caregiving, starting with motherhood, has always been official uncompensated in socio- economic terms.
23
In addition to the challenges of taking care of aging parents, there are now many parents who continue to be caretakers of their children with developmental disabilities as proper services cannot be found for them. The population of adults with autism and other developmental disorders is increasing rapidly and will only add to the problem. The supports for these adults with disabilities and their families is woefully lacking.
32
I was lucky, when caring for my mom with Alzheimers I was able to avail myself of a bank of paid sick leave I had accumulated over the past 25 years at my job when helping her at home, taking her to appointments and later when she was at a memory care facility. I don't know what people who lack this benefit do, and grieve for those caregivers whose jobs are in jeopardy when they need time off, and who must trade their own health and responsibilities to care for loved ones. Our system is cruel to those who cannot produce 24/7 as the business world demands, whether at the beginning or end of life.
30
Thank you Dr. Khullar for acknowledging "the caregivers". I took care of my father for 5 years, and after he died, I took care of my mother for 5 years. I worked as a hospital RN, still had children in HS, and never had time for myself.I loved my parents, and of course would do it all over again.Was very frustrating to watch my retired sibs, do little, and go on fabulous vacations. I was lucky I was a RN, so knew how to navigate the system, but even with all my experience, there were many roadblocks I encountered.I don't envy anyone having to take on this role.
45
I took care of my Mom for two years seven of which were in hospice. Family called daily and Mom would always be cheerful and say "I'm fine" then hang up and crumble with exhaustion. When she passed I could not move I was so exhausted mentally/physically. It took months to get back to "new normal". Now I have my 85 year old Dad to look after (he lives alone 7 minutes away. Yes, I retired early as did my husband to do this. Caregivers need help…NOW. People tell me all the time "there is one in every family that takes the burden of caregiver". Terrible but grateful I had the last two months with Mom
34
These are bandaids. The real problem is that more and more people are single and childless. More and more are living way from their families. And I bet even more are getting care they don't want; they'd rather have assisted dying or at least the option to refuse all care and die on their own.
Pretty soon it won't be a question of helping caregivers. It'll be a question or who will care for people who have no family ... and maybe don't want care at all?
Pretty soon it won't be a question of helping caregivers. It'll be a question or who will care for people who have no family ... and maybe don't want care at all?
43
My husband and I have taken care of my 92 yo mom with dementia for going on 5 years. And now Trump and the GOP is threatening my healthcare. Educating other family members is sometimes a futile task. My conservative Texas brother and his fundamentalist church-lady wife call at the most 2X a year after they spent vacations at my mother's South Texas house for years. It's a long row to hoe.
59
Sorry for your sad situation. Just shows that good people like you are doing good things. Some people who go to church are not good people. Your sister-in-law sounds like one of those preachy people who have opinions and can quote the Bible, but who does not realize her actions, more than words or money, are most important.
28
Caregivers don't get nearly enough support or attention or understanding; people just assume "someone will do it and that someone is not me," so what do they care? My family (my mother in particular) takes care of two family friends in their 80s who are now in assisted living. She found them dying at home and got them to hospitals and into assisted living. She still looks after their pets, their house, their everyday needs. We pay for a lot of their needs because the home gets all their pension and social security benefits. If we didn't they wouldn't have toiletries or clothes ... they have family. Lots of talk but no assistance in any way. The assisted care is dunning US for payments. No real help from any other source, no state or county assistance for these people. The stress and strain is enormous but what should we have done, let them die in that house? That's what everybody else did. There has to be a better way than this.
40
Some people would prefer to be left alone to die in their house. Unfortunately they have to completely isolate themselves to be protected from do-gooders who put their own feeling of righteousness ahead of the rights of others to be left alone to die. Getting them into the institutional system does not change the fact that they will ultimately die anyway. It just makes their end more clinical and controlled.
9
Refer to your county's website to look for programs available for caregivers, such as "respite" which is mentioned in this article. I work for an in-home respite program at a not-for-profit agency and we actually have companions who are available right now. And so often we hear people say after the fact, "I wish I had known about your program when I needed you".
16
The respite care I have heard of is about 200 dollars a day.
12
Different areas will have different programs available, it really is important to know what's out there.
5
A question for Dr. Khullar: For the control group of non-caregivers, how many of them had a spouse who died during the study? Was IL-6 elevated for non-caregivers after the death of a spouse? True that caregivers, and I can attest to that, experience high levels of stress, but can the grieving process cause or exacerbate the elevation of IL-6?
3
Thank you for this article. My five years if experience with parents and dementia and hispitals and memory care facilities and caregivers and medicine has been very enlightening. Our Nation is not prepared for this epic. Life is Hard enough, we owe our elders respect in their sunset years.
Please continue to write these articles.
Please continue to write these articles.
16
Projections for percentage of the U.S. population aged 75 and over:
2017 6.6
2020 6.9
2030 9.5
2040 11.7
In raw amounts, the numbers are staggering:
2017 21.6 Million
2020 23.2 Million
2030 34.2 Million
2040 44.3 Million
The size of the labor force cannot possibly keep up with the demands brought on by this tidal wave of older people.
When you ask for help, do not expect any. Not enough workers. It's that simple.
2017 6.6
2020 6.9
2030 9.5
2040 11.7
In raw amounts, the numbers are staggering:
2017 21.6 Million
2020 23.2 Million
2030 34.2 Million
2040 44.3 Million
The size of the labor force cannot possibly keep up with the demands brought on by this tidal wave of older people.
When you ask for help, do not expect any. Not enough workers. It's that simple.
16
Then let's start importing them. There are billions of people elsewhere scratching out a bare livelihood. Bring them here to help us.
11
That was the Obama administration's plan, and it created reliably Democrat voters.
The only problem was that A) jobs must exist in the first place for them to take, and B) the incoming must have skills. We are told ad nauseam that the economy of the future will be based on knowledge and mental skills. Are those found in the mother of 3 fleeing gang violence in El Salvador?
The only problem was that A) jobs must exist in the first place for them to take, and B) the incoming must have skills. We are told ad nauseam that the economy of the future will be based on knowledge and mental skills. Are those found in the mother of 3 fleeing gang violence in El Salvador?
3
My brother, two nieces and I care for 99 1/2 year old mom. My brother suggested a schedule because, having taken on the task solo, he didn't have a life. But fortunately mom has been relatively easy to work with and financially secure, as is our family. Without those caveats, it would be a disaster.
22
I'm 30, and like many children of older parents I've been a caregiver to some extent since I was about 10 years old. I don't have a partner, I don't have kids, and I have not had time or money to do the schooling I intended to do. My sister has been my 'daughter' since I was 12 and she was 8. She and I openly talk about this now that she's doing a PhD in a STEM field at an elite university and I'm working an admin job in our hometown while I care for our parents. I am lucky to have a support network, and my sister is its lynchpin. Having said that, we still have a more mother-daughter relationship: she calls me when her peers still typically call a parent or even a grandparent. My sister's peers at her top university seem to be extraordinarily uncomfortable (to the point of open skepticism) when she mentions the barest details of her visits home--which is unfortunate, because those bright lights with their heads in the sand will be the policymakers, soon enough. The vastly increasing number of children born to parents over the age of 40 is going to make people like me far more prevalent in the coming decades. Based on my experience, I will not have children if I haven't had any in the next couple of years.
It's disheartening to see so many other carers angry that pregnant women and new parents get leave when we don't. This isn't a zero-sum game: why can't we work together as caregivers of vulnerable people to have our immense, invisible contributions recognized?
It's disheartening to see so many other carers angry that pregnant women and new parents get leave when we don't. This isn't a zero-sum game: why can't we work together as caregivers of vulnerable people to have our immense, invisible contributions recognized?
42
Here's what we need to do: just like Israel requires that everyone at age 18 put in two years of service to their country in the military, the United States should require 18-year-olds to be trained in caregiving and then put in a year or two of monitored caregiving work, for children and elders, in exchange for for free college. This will degender caregiving, create a nation of modern-day alloparents -- wjhat I call carenting -- and a more compassionate society, and it will finally give caregiving the status it deserves. It will also give everyone important skills. This is doable.
59
Excellent
3
That's a great idea. As long as the addicts, criminals, mean/cruel and addlebrained are screened out of working alone with vulnerable people.
12
I understand why you recommend this, but it puts vulnerable populations at risk for physical, emotional and financial abuse, since young people are not known for their patience, compassion, or moral scruples. I think more use should be made of new technology, video surveillance, robotics to take on some tasks, as well as more "job training" for a variety of candidates, but not only younger people.
7
I spent 12 months helping to care for my 92 year old father. Also caring for him were my 87 year old mother, my younger sister, a housekeeper and a 24h home health aide. I am 65 and work full time. It was exhausting. I was sad, angry and frustrated. And it occurred to me that Medicare doesn't cover costs associated with home healthcare workers, even though it's more cost effective than being in a nursing home (which Medicare DOES, to some extent, cover). I have no children and hope that when I die I do it quickly, without exhausting my savings or the patience of my caregivers.
26
I am single and childless as well and experienced elderly parent syndrome and just ask for a 15 minute warning so I can grab the Nyquil bottle and plastic bag.
9
Medicare does NOT cover nursing home care beyond 3 months.
12
Actually it only covers 100% for the first 20 days then 80% for the next 80 days.
After 100 days it is private pay unless you apply for Medicaid, but you will have to " spend down" almost all assets like stocks, bonds, bank account, etc- it is only meant for the indigent.
Very few people know this. With all the focus on inheritance tax, most folks don't know that whatever inheritance they might get will likely be garnished in the process.
After 100 days it is private pay unless you apply for Medicaid, but you will have to " spend down" almost all assets like stocks, bonds, bank account, etc- it is only meant for the indigent.
Very few people know this. With all the focus on inheritance tax, most folks don't know that whatever inheritance they might get will likely be garnished in the process.
13
Thank you for writing about the needs of caregivers although my experience is far from the notion that "... illness is often a family affair." It is frequently left to one member of the family who assumes the lion's share of responsibility while the other members quietly thank God they either live far away or have too many other obligations. The health care system is of little more help.
My experience with caring for a parent and an in-law is that our health care system's toolbox for helping the advanced-aging elders is well-equipped for bringing them back from death, medicating them for pain with drugs that further diminish cognition and offering suggestions for eldercare assistance that are hit or miss at best and cost a lot of money.
My experience with caring for a parent and an in-law is that our health care system's toolbox for helping the advanced-aging elders is well-equipped for bringing them back from death, medicating them for pain with drugs that further diminish cognition and offering suggestions for eldercare assistance that are hit or miss at best and cost a lot of money.
39
"And offering suggestions for eldercare assistance that are hit or miss at best and cost a lot of money."
This one. It's amazing how often I have to spell out for people at all levels of the system that no, I cannot pay for care above the paltry number of hours we currently have, and between me and my parents, we cannot afford long-term care. And I earn a median sort of salary! It's almost like the people running the system and setting the policy have four or five times the median income, and have delusions of their own 'normalcy'...
I also love how those impossible suggestions for eldercare are often framed as "choices", so that it becomes my "choice" to stay put in my dead-end-but-full-time job, my "choice" to care for them.
This one. It's amazing how often I have to spell out for people at all levels of the system that no, I cannot pay for care above the paltry number of hours we currently have, and between me and my parents, we cannot afford long-term care. And I earn a median sort of salary! It's almost like the people running the system and setting the policy have four or five times the median income, and have delusions of their own 'normalcy'...
I also love how those impossible suggestions for eldercare are often framed as "choices", so that it becomes my "choice" to stay put in my dead-end-but-full-time job, my "choice" to care for them.
24
"...it is frequently left to one member of the family who assumes the lion's share of responsibility ..."
Therein lies a common problem: often someone assumes the responsibility, without even considering that someone else may want to do so, or that others may want to pitch-in (or be willing to pitch-in, were it asked of them). These 'martyrs' then complain under their own breath about how they 'have to' do everything, and other family, upon their observing the person doing just that (doing everything), let them. And sure, while it would be nice if others in the family volunteered of their own volition to pitch in, it seems far too many times there are certain people who actually like being martyrs, for whatever reason.
Often what people believe to be true, becomes self-fulfilling. I'm sure there are some families where all the other siblings are selfish and won't help out, and one is left to do everything. But I know there are other families where one person is the self-designated martyr of the bunch.
Therein lies a common problem: often someone assumes the responsibility, without even considering that someone else may want to do so, or that others may want to pitch-in (or be willing to pitch-in, were it asked of them). These 'martyrs' then complain under their own breath about how they 'have to' do everything, and other family, upon their observing the person doing just that (doing everything), let them. And sure, while it would be nice if others in the family volunteered of their own volition to pitch in, it seems far too many times there are certain people who actually like being martyrs, for whatever reason.
Often what people believe to be true, becomes self-fulfilling. I'm sure there are some families where all the other siblings are selfish and won't help out, and one is left to do everything. But I know there are other families where one person is the self-designated martyr of the bunch.
4
Lisa - Siblings or other members of aging parents' families do not or cannot help for many reasons. It is complicated and involves a lot of individual judgments about what is reasonable, appropriate and effective elder caregiving. One of my siblings had an "easy" answer, just throw Mom's money at it. Another felt the only critical issue was getting the aging parent to confess her sins and accept Jesus. Need I continue?
14
Replace the word 'for' with 'on' in this quote from the article and you have the essence of the caregiving today: "the demand for (on) caregivers is growing because of longer life expectancies and more complex medical care". How many of us would look for a job requiring an open-ended commitment to work under unpredictable and constantly shifting conditions while applying the judgment and skills of a profession (nurse) for which we have never been trained?
22
This country needs much greater financial focus and assistance towards investing in quality senior, elderly care, whether that means making it easier and less burdensome for families to locate and place their aging parents in safe and professional elder care homes and facilities. The wealthy already have access. The rest of America- does not. Europe has better access.
This is yet another shameful legacy in the ongoing myths about American "Exceptionalism". We treat our poor, our low income and our elderly terribly. This has to change.
This is yet another shameful legacy in the ongoing myths about American "Exceptionalism". We treat our poor, our low income and our elderly terribly. This has to change.
31
It just costs too much to artificially prolong life after 80 or 85. I feel like society is spending everything on this one goal of lasting as long as physically possible, no matter what sacrifice is required. People should live their lives as fully as possible, working hard and having families, and then die at a reasonable age, which is 80 or 85, unless the person is unusually healthy. The medical community isn't doing anyone any favors by artificially prolonging life after 80 or 85 as a cost of hundreds of thousands of dollars. So many young people are miserable (obesity, opioids, depression) with so little opportunity because we are so focused on this goal of living long, rather than well. This is crazy.
34
Check in at age 84.5 and let us know how reasonable you think it is to die at age 85.
I know of 90-somethings who are safe drivers, volunteers, one who is still working, one who is still a music teacher and many who are beloved and contributing members of their family and friends circles.
I know of 90-somethings who are safe drivers, volunteers, one who is still working, one who is still a music teacher and many who are beloved and contributing members of their family and friends circles.
8
If a person is reasonably healthy at 85, more power to them and I wish them a long life. My issue is being 85 and having society spend $100K a year on my care or having my children have no life because they must wait on me. Sorry - I don't want that. No artificial (meaning expensive care) after 85 for me. I will have lived my life by then and would rather make room for others.
15
Picking the "reasonable age" at which people should die? Based on cost? Rotten, awful, very disgusting idea that doesn't address the real cause of spending so much at the end of life: for profit medicine gone wild. Medicine is a captive market because the death of a parent, spouse, or child is so emotional and, besides the lack of medical knowledge, family members are often in denial and full of shame at the idea of refusing treatment. The most successful ways of dealing with this is to have a discussion with patient and family well before the decisions must be made. Medicare should bargain prices and approval must be based on actual patient results (it isn't, drugs can be approved based on reducing markers for a disease without improving quality or length of life). We just passed a law that is a wet kiss for PHRMA and the medical device industry, allowing some approvals based on reporting success but no actual controlled testing. You bet more drugs and devices will be marketed but don't bet on helping patients and their families. We are going the wrong way.
7
This is a huge problem that will likely eventually bankrupt most people. My father's health issues sent him to Assisted Living and we still had to pay for an outside caregiver to look after him from 7 pm to 7 am, 7 days a week. None of us lived in the same state, we all had jobs, bills, mortgages, kids in college, etc. His bills exceeded $100K a year. I plan to take the easy route when the time comes as I don't want to spend the last years of my life staring at wall while someone changes my diapers. That's not living to me. That's the problem no one wants to face. Pills, a gun, there are options out there. Who wants to live their last years like that? Not me.
37
I'm a 40 year old only child with 2 mobility-challenged parents. Single, child free - lacking time to date between my full time job and managing their household. I pretty much plan on floating myself quietly out to sea if I ever find myself on a path toward mental or physical incapacitation. It's really the only option.
21
Sarah--Take a few dollars to pay for aide thru a reputable local company for three (3) hours every other weekend starting next week. Make some time for yourself now. The ice floe on Lake Erie and a six-pack can wait.
7
I've been a caregiver for 13 years; my wife is a stroke survivor. This is a welcome article because most people do not understand the pychological and emotional strain we have to deal with -- not to mention the everyday physical logistics. There are support groups just for us, and they help. Plus, there is a miserably feeling of daily guilt. As much as a caregiver's life is affected in a negative way, it's much worse for the person whom you're caring for.
21
"Significant financial strain" indeed!
First thank you for important, frequently ignored insights about caregivers. I was a caregiver for first one, then two parents with dementia, then one. Now both parents are gone. It lasted well over ten years and cost me career growth and hundreds of thousands in lost savings and earnings. My mom died recently and though much of the challenge is gone, my soul is still recovering. Dear friends supported me but not our culture, which turns its back.
Still despite great financial and emotional loss, I am a better person for having been my parents' caregiver. No irony, just truth. But it is extremely stressful, expensive, hard-won truth.
Again THANK YOU for an article which sees and speaks to a deeply flawed part of American culture - the ghosting of caregivers.
First thank you for important, frequently ignored insights about caregivers. I was a caregiver for first one, then two parents with dementia, then one. Now both parents are gone. It lasted well over ten years and cost me career growth and hundreds of thousands in lost savings and earnings. My mom died recently and though much of the challenge is gone, my soul is still recovering. Dear friends supported me but not our culture, which turns its back.
Still despite great financial and emotional loss, I am a better person for having been my parents' caregiver. No irony, just truth. But it is extremely stressful, expensive, hard-won truth.
Again THANK YOU for an article which sees and speaks to a deeply flawed part of American culture - the ghosting of caregivers.
37
I cared for two parents with complex health issues, multiple ICU stays, Lewy Body Dementia, just terrible white knuckle stress for ten years. My mom died in June. Its over. NOT yay for me.
I am DAMAGED. Emotionally, physically, financially and socially. I still barely leave the house, which we would have lost, if I hadn't quit my job to provide care. And now my sibling who lives 15 minutes away & did not help. Ever. Wants a part of this house. My future is financially insecure. I honestly don't know who will hire me in my mid 50s. I'll end up being a nurse's aide. MORE CAREGIVING.
And I have no children to care for me in my old age. Oh, and those ten years? I didn't pay into Social Security. After I went through my savings paying for COBRA, I spent several years paying for individual insurance that was 730.00 a month with a 5,000 out of pocket. All because I lost my employer sponsored healthcare.
Obamacare ultimately saved me. I am not kidding. Caregivers can't survive without it.
I had no help other than from my husband. No respite except when someone went to the hospital and had an extended rehab in a nursing facility. Visiting nurses were a blessing, paid for by Medicare after the rehab release. But as Medicare cut back on home services, it seemed like they only came to the house for a week. What if I hadn' t been here?
Well, frankly, I was told by multiple doctors that my father wouldn't have lived past the first year of his illness without my amateur nursing care.
I am DAMAGED. Emotionally, physically, financially and socially. I still barely leave the house, which we would have lost, if I hadn't quit my job to provide care. And now my sibling who lives 15 minutes away & did not help. Ever. Wants a part of this house. My future is financially insecure. I honestly don't know who will hire me in my mid 50s. I'll end up being a nurse's aide. MORE CAREGIVING.
And I have no children to care for me in my old age. Oh, and those ten years? I didn't pay into Social Security. After I went through my savings paying for COBRA, I spent several years paying for individual insurance that was 730.00 a month with a 5,000 out of pocket. All because I lost my employer sponsored healthcare.
Obamacare ultimately saved me. I am not kidding. Caregivers can't survive without it.
I had no help other than from my husband. No respite except when someone went to the hospital and had an extended rehab in a nursing facility. Visiting nurses were a blessing, paid for by Medicare after the rehab release. But as Medicare cut back on home services, it seemed like they only came to the house for a week. What if I hadn' t been here?
Well, frankly, I was told by multiple doctors that my father wouldn't have lived past the first year of his illness without my amateur nursing care.
61
I estimate that between my two parents, over the course of 10 years, I
provided over a million dollars worth of unpaid care.
Lawmakers need to consider how much unpaid caregivers are saving the government (medicaid) when they vote on repealing the ACA.
provided over a million dollars worth of unpaid care.
Lawmakers need to consider how much unpaid caregivers are saving the government (medicaid) when they vote on repealing the ACA.
27
Chances are your county or community has some kind of Office for the Aging, but a lot of caregivers (and the seniors they care for) have no idea such a thing exists.
It's a start, at least. And your tax dollars did pay for it, so use it.
In the meantime, start squawking to your local governments and zoning boards about any restrictions that prevent you from setting up living arrangements that would be mutually beneficial to caregivers and cared-for alike. Too often if you ask to install a temporary cottage in your backyard for your grandmother, local officials treat you like you want to open a brothel.
It's a start, at least. And your tax dollars did pay for it, so use it.
In the meantime, start squawking to your local governments and zoning boards about any restrictions that prevent you from setting up living arrangements that would be mutually beneficial to caregivers and cared-for alike. Too often if you ask to install a temporary cottage in your backyard for your grandmother, local officials treat you like you want to open a brothel.
10
I was a caregiver for 28 years for my mother. As a result, I have damage to my back,legs,arms,neck due to the physical burden of lifting,carrying,etc. I have lived in a climate too hot,and too dry for my own health,because my mother wished to die in CA. Well. she is gone now, and I am trying to regain my health enough to begin the search for another job in a climate that will not kill me. I also, worked 80+ hours a week, with no paid leave like my pregnant coworkers enjoy. This country needs to help its caregivers...
42
My parents both slipped into dementia in their early 80's and died in their 90's. As their daughter/caregiver it was a sad and stressful ten years, I was also raising a family and working full-time. One time, while visiting mom who was recovering from surgery after a fall, I got a call my dad had fallen and was in the ER, so I madly dashed around that hospital. That's how it went: adrenaline often pumped. Some nights I'd wake bolt upright from a dream one of them had fallen. Their short term memories were gone, so I dealt with their doctors, nurses, pills (!) and it was not easy to be the brains for three. They went from an apartment to retirement complex to Assisted Living and then to Skilled Nursing for serious issues. The medical community tried to be helpful, some truly understood the anguish family caregivers feel, witnessing loved ones lose their once wonderful minds. My brother and I tried to do the best for them. On one occasions our father could have passed away peacefully from pneumonia. One doctor talked to us about letting this happen, another came to the room and said, I can save him. We so wanted to save our father! He lived for another two years. I think about this often, because those last two years were rather awful for him. Looking back, I mainly wish the medical community had some ethical consensus and could have helped us make the most compassionate and ethical decisions for their care. We should have let our dear old dad go. He was ready, we were not.
48
I am one of the lucky ones. After 2 years looking after dad in law with early dementia problems, he married a low life scumbucket 40 years younger who aelienated him from everyone. He barely knows who we are and she gets to change his diapers. This is surprisingly common.
I am now caregiving for my 86 yr old mom who has had 5 bouts of pneumonia. Should she have been allowed to die of pneumonia? She has been on antibiotics for 1 month now, much pain, many drugs, poor quality of life. Laurie garret talks about the cost of the last 6 months of life. Along with the $$$ is discomfort. We all new a better way out.
I am now caregiving for my 86 yr old mom who has had 5 bouts of pneumonia. Should she have been allowed to die of pneumonia? She has been on antibiotics for 1 month now, much pain, many drugs, poor quality of life. Laurie garret talks about the cost of the last 6 months of life. Along with the $$$ is discomfort. We all new a better way out.
3
While GOP repeal&replace rhetoric stays shrill, real healthcare issues need serious attention. Efforts through mostly Market intermediaries (managed care) to save money have dumped patients quickly out of hospital beds to care at home by family members. Spouses are taught how to provide wound care, IVs, etc.
While home care is usually best- real home services are crucial. Any healthcare reform must stop misusing the concept of 'acuity' to justify benefits and look with clinical realism at case management. Some patients may cost less with longer hospital stays; some may thrive with daily home nursing visits or aides.
Individualized care is the ultimate cost control.
While home care is usually best- real home services are crucial. Any healthcare reform must stop misusing the concept of 'acuity' to justify benefits and look with clinical realism at case management. Some patients may cost less with longer hospital stays; some may thrive with daily home nursing visits or aides.
Individualized care is the ultimate cost control.
19
Our society needs to rethink our definition of 'successful' or 'adult'. We retain this strong idea that all adults should have their own apartments, their own homes, their own possessions, their own cars. If a single adult lives with family, people question it (loser? momma's boy? needs to grow up? mooching off her parents? etc.) Thankfully, folks are starting to realize the social isolation we've created by abandoning our own famillies, trying to attain all the symbols of 'making it', and in the process, aiding and abetting the overall consumption of 'stuff' (for every person living on their own in an apartment or home, each of those apartments/homes must have 'stuff'). More people are realizing the social and environmental benefits of shared housing, be it with family, in formalized co-housing arrangements, with a roommate, etc.
We must DEMAND that insurance co's, Medicaid/Care, etc. allow US to decide how our insurance $ will be used. If we want ourselves or family members to be cared for in the home by a paid caregiver, that should be our choice, versus the insurance co's telling us our only options are impersonal facilities that have been 'approved' by them. Most of those 'approved' facilities are horrible. Professional caregivers must be paid well more than minimum wage. They work tirelessly and give so much of themselves. They deserve better! Lastly, we need to legalize euthanasia. The govt has no place to tell us what we can/cannot do to our own bodies.
We must DEMAND that insurance co's, Medicaid/Care, etc. allow US to decide how our insurance $ will be used. If we want ourselves or family members to be cared for in the home by a paid caregiver, that should be our choice, versus the insurance co's telling us our only options are impersonal facilities that have been 'approved' by them. Most of those 'approved' facilities are horrible. Professional caregivers must be paid well more than minimum wage. They work tirelessly and give so much of themselves. They deserve better! Lastly, we need to legalize euthanasia. The govt has no place to tell us what we can/cannot do to our own bodies.
26
Yes. Multi-generational living arrangements have been the basis for upward mobility for many demographic groups -- there is no reason they can't perist through old age so caring loads can be shared.
As a childfree adult I also wish I could make a video clearly stating, while in my sound mind, that I wish to be euthanized should I become uable to perform basis eating and toileting matters alone, unable to recognize family members and unable to comprehend current events. Under those circumstances, what is the point of maintaining my husk?
As a childfree adult I also wish I could make a video clearly stating, while in my sound mind, that I wish to be euthanized should I become uable to perform basis eating and toileting matters alone, unable to recognize family members and unable to comprehend current events. Under those circumstances, what is the point of maintaining my husk?
16
You forgot a key demographic: those adults who are caregivers for a special needs child. In my case I am a caregiver for both a special needs child and my parents. My parents are able to hire a part time caregiver through programs like Medicare, but parents of special needs children are on their own. It is very difficult to work when you have a child with high needs with all the various therapies and medical appointments, so many of us cannot work and those who do continue to struggle mentally and physically to keep up with demands. It seems ridiculous that if you adopt a child with special needs, the parents of the adoptee are paid a stipend and receive free medical services, but those that care for their own do not. Likewise, if I were to caregive for a stranger I would receive a salary and credit towards social security, but working in my own home, I am not. We really should be paying all caregivers in this country a stipend (whether they work in their own home or care for others) and give them credit towards social security because they really are providing a much needed benefit in our country.
52
Well, the differnce is that we need people who are willing to adopt special-needs children who already exist. Hence the financial support.
On a planet overopopulated by at least a couple of billiion, we really dont' need humans to replicate themselves. There is NO projected shortage of human beings, globally, and indeed quite the reverse.
So if you voluntariliy choose that route, with its attendant downsides for human society and other species, you also are assuming the risk of a very difficult life should something go wrong.
I'd rather my tax dollars go to people who had no choice in their sitatuation. With all the info out there, surely would-be parents know there is the chance of producing a disabled offspring, yet choose to proceed anyway. That is on them when our resources are finite.
On a planet overopopulated by at least a couple of billiion, we really dont' need humans to replicate themselves. There is NO projected shortage of human beings, globally, and indeed quite the reverse.
So if you voluntariliy choose that route, with its attendant downsides for human society and other species, you also are assuming the risk of a very difficult life should something go wrong.
I'd rather my tax dollars go to people who had no choice in their sitatuation. With all the info out there, surely would-be parents know there is the chance of producing a disabled offspring, yet choose to proceed anyway. That is on them when our resources are finite.
6
What you need is a friend in the same situation. You "pay" your friend to care for your loved one and your friend "pays" you the same amount to care for his loved one, only you both actually just care for your own loved one. That way you both are getting "paid" (ypu will lose money as you will have to pay taxes and the employer share of benefits) but it won't cost you full freight and you won't stop earning for social security purposes. Could that work?
3
Dill, you reason as if you are certain you will never be old, or that indeed it is beyond possible that you could have a serious injury tomorrow and would need care for the rest of your life. If people do not reproduce, the world will be populated solely by old people, a large percentage of whom will be losing their faculties, with nobody left to maintain a society. I guess you wouldn't have to worry about where your tax dollars are going anymore, though.
My husband was treated 5 years ago at the age of 62 for base of tongue cancer, which involved chemotherapy and radiation and necessitated a feeding tube for months, as well as opiate pain medications. I was his live-in nurse for what seemed like an eternity. The treatment resulted in cognitive deficits, after which he lost business. We took on a lot of personal debt to pay off the bank loans which had funded the start up of the business. This December he was diagnosed with Parkinson's. I find that the best reaction to the unpleasant shock of once again being called on to caregive beyond my capacities is to let go of the guilt. I will do the best I can do, but I will not be superwoman. In this second go-round I will not take responsibility beyond that which feels doable for me. There was no support from the medical establishment for me during his cancer treatment, and I do not expect any this time so the stress of unmet unrealistic expectations is not a part of the picture this time.
33
It’s a terrible situation all around, because when it’s family, so many issues are involved, and all the strengths and weaknesses of relationships are accentuated. (That’s why even people who could afford professional care for a loved one may be reluctant to avail themselves of it, until it becomes absolutely beyond their capacity.) I once witnessed a heartbreaking scene of a mother with dementia and physical ailments as well who said sarcastically to her daughter, who had explained that this was the third or fourth day she’d taken off from work to attend to her mother’s latest, acute situation, “How good of you to do me the honor!”
23
As a caregiver I have frequently taken my significant other to the ER. He has reached the point where a doctor visit is impractical because he usually requires multiple tests and/or X-rays to determine what's wrong. A prior regular doctor visit would not have prevented these situation(s).
I cannot get any help due to lack of family and adequate resources. At one point, the Fire Dept. Ambulance had to take my significant other to ER when I had an emergency because there was no one to take care of him. We were each charged separately for the ER services.
I cannot get any help due to lack of family and adequate resources. At one point, the Fire Dept. Ambulance had to take my significant other to ER when I had an emergency because there was no one to take care of him. We were each charged separately for the ER services.
17
The first thing the good doctor can do is eliminate all of those medicines the (his?) patient is taking.
When my Dear Old Mom was in a nursing home she was taking a similar number of pills like Ditropan three times a day, Lasix 40mg once a day, Bupropion 100mg once a day, Prevacid once a day, Atacand once a day, warfarin once a day and Vicodin every four to six hours for pain, like head aches, because she couldn't take aspirin or Motrin because of the Warfarin. The nurse said most of the patients were given Ditropan for incontinence , an anti-cholinergic that was affecting her thinking, but she was being given Lasix which was disrupting her electrolytes and making her pee. She was addicted to vicodin because it gave her a high to tolerate her situation. She was given Bupropion as treatment for the symptoms caused by the Ditropan and depression because she was being treated like an inmate in a concentration camp.
Today, seven and half years later, she refuses to take any medicines and she is doing well, her lab screens like liver function and electrolytes are completely normal. She's 94 and senile but much better without the doctor prescribed toxins that would have killed her years ago.
You are going on about his socks but you completely fail as a physician if you don't actively reduce the number of medicines he is taking. Unless you are doing the family a favor by killing him off.
Those other doctors are making a profit from those three month interval appointments.
When my Dear Old Mom was in a nursing home she was taking a similar number of pills like Ditropan three times a day, Lasix 40mg once a day, Bupropion 100mg once a day, Prevacid once a day, Atacand once a day, warfarin once a day and Vicodin every four to six hours for pain, like head aches, because she couldn't take aspirin or Motrin because of the Warfarin. The nurse said most of the patients were given Ditropan for incontinence , an anti-cholinergic that was affecting her thinking, but she was being given Lasix which was disrupting her electrolytes and making her pee. She was addicted to vicodin because it gave her a high to tolerate her situation. She was given Bupropion as treatment for the symptoms caused by the Ditropan and depression because she was being treated like an inmate in a concentration camp.
Today, seven and half years later, she refuses to take any medicines and she is doing well, her lab screens like liver function and electrolytes are completely normal. She's 94 and senile but much better without the doctor prescribed toxins that would have killed her years ago.
You are going on about his socks but you completely fail as a physician if you don't actively reduce the number of medicines he is taking. Unless you are doing the family a favor by killing him off.
Those other doctors are making a profit from those three month interval appointments.
33
My father was hospitalized for a pancreatic infection from a biopsy. We noticed the nurse would arrive with a large glass of water and approximately 12 pills. My father would become faint and his blood pressure would drop severely approximately 20 minutes afterward. I asked his physician why he was taking so many pills, and was told he only prescribed one. The remainder are being prescribed by a cardiologist. There was nothing wrong with my fathers heart. I immediately called the cardiologist and verbally carved him a second one. I reminded him that if I was admitted to the ER after taking 12 different prescription medications with one glass of water, I would be sent to the psych ward - if I survived. I then instructed the staff not to give my father any other pills than those prescribed by HIS physician without my familys permission. Upon receiving only one pill thereafter, my father never suffered the side affects again.
23
You said it!
13
Before I retired as a neuropsychologist, I was asked to assess an elderly woman for dementia. Got releases & faxed all clinicians involved. Got a list of her meds... then another... and another. Three different docs were prescribing multiple meds, not one of them bothering to collaborate with the others to find out how Doc 1#s meds might interact with Doc # 2's meds, and so on. Needless to say, some of med these interactions were damaging.
3
I'm a caregiver for my partner, who has stage 4 breast cancer and assorted other ailments. I am lucky in that I work freelance from home and am flexible for going to doctors' visits and taking care of other needs, although it gives me almost too much togetherness sometimes. I have had to give injections and change dressings so I know what that is like, I feel I do a reasonable job but the training was quite haphazard - usually a nurse here and there giving me pointers. Also most health care professionals have been good about including and listening to me, there have only been a very few who ignored me or froze me out. The emotional part is probably the worst - I feel alone although I am never alone at all. If I get short-tempered or impatient I feel incredibly guilty. And I try not to think where this is all going... sigh.
31
Thank you Dhruv Khullar for this article. Finally someone in this medical field, gets it. Something as simple as putting back on a pair of socks. To have that bother you enough to write this thought provoking article has reassured me that someone does care.
15
The subsidized financial support given by Cuomo as campaign pay back from often predatory so-called owner /operators of long term care facilities strikes terror in the hearts of those who dare not place their loved ones in institutional harm's way!
The deference paid to the nursing home industry lobbyists -such as Leading Age...NYSAL...et al...by NY State Assembly and Senate enablers perpetuates a menacing system.
Aging family caregivers, in good conscience, are without choice as the failures of the Dept of Health , the Public Health & Health Planning Council and those agencies who are OBLIGED to protect the vulnerable, cede their moral authority and allow charlatan consortia nursing home operators to churn patients and residents into property development piecemeal.
The Governor has a new outreach scheme for even more flexibility to 'modernize' letting even more foxes into the henhouse.
Scroll to Pages 104 thru 108 and be worried:
https://www.budget.ny.gov/pubs/executive/eBudget1718/fy18artVIIbills/HMH...
The deference paid to the nursing home industry lobbyists -such as Leading Age...NYSAL...et al...by NY State Assembly and Senate enablers perpetuates a menacing system.
Aging family caregivers, in good conscience, are without choice as the failures of the Dept of Health , the Public Health & Health Planning Council and those agencies who are OBLIGED to protect the vulnerable, cede their moral authority and allow charlatan consortia nursing home operators to churn patients and residents into property development piecemeal.
The Governor has a new outreach scheme for even more flexibility to 'modernize' letting even more foxes into the henhouse.
Scroll to Pages 104 thru 108 and be worried:
https://www.budget.ny.gov/pubs/executive/eBudget1718/fy18artVIIbills/HMH...
4
I'm lucky to live in AZ where help for my severely disabled child is pretty darn good. She gets 56 hours of skilled nursing a week (nights) and my family is allotted 340 hours a year of skilled nursing respite as well as weekly Attendant Care through UCP. I'm not going to say that I wouldn't survive withou it....but close. With the incoming administration....I'm not panicking, but rather planning for the worst. I've had my eye on this snazzy dual adjustable king bed so I can sleep next to my daughter when her nursing disappears. Of course I'll never have a full nights sleep again. And my husband won't have a wife. And both the nationwide nursing agency and possibly UCP will go under.....
Good times....
Good times....
19
Having been a caregiver to both my parents, I am a little concerned as to who will be my care giver, a single woman with no children.
45
No problem, just do what one commenter said--hurry up and join a church [make sure it's one with a lot of willing helpers, and cultivate the members so they'll really really care about you!], have a few children [too late? adopt a couple of teenagers], make a whole bunch of new friends [maybe through a dating website? "If interested in caring for me when I get old and frail, swipe right!"], and... wait for it... find a philanthropist.
And that commenter, who was determined that none of My Tax Dollars be spent to help anyone, did not realize that he/she was writing satire.
And that commenter, who was determined that none of My Tax Dollars be spent to help anyone, did not realize that he/she was writing satire.
7
This is one more example of how our culture is only interested in money and things. Caregivers should be paid. It's a real job. Family shouldn't have to shoulder complete responsibility for the elders. There are many people out there who need a job and could be trained for this, but it all comes down to money. Medicare should cover at least part of this so families wouldn't be so burdened.
47
There is one important variable left unexamined--gender. One upside of the shortage of care 'workers' over time is that as the ability of people (disproportionately women) contributing unpaid care work declines, the need to monetize the value of the work and include it in the formal economy will likely drive up wages for in home/visiting and out of home, paid health care aides. This will help the predominantly low wage female work force in the health care services sector make a decent wage.
10
It may drive up those wages but since insurance no longer covers anything and its all out of pocket no one will be able to afford that.
1
This is going to do our country in. Not the Russians. Not the lack of factory jobs. Not the elites reading books. The fact that we don't have a basic health care system that is affordable and accessible by all people. Don't fool yourself - even if you are completely healthy, we are all one accident away from tragedy - distracted drivers. When I was in high school, my government teacher would say over and over "who rescues the rescuer?" It sounded strange as an 18 year old but I remember it. The US has no safety net, no sense of a social contract - it is all about individual responsibility and look what it is doing to our communities.
91
My sister, spouse and I provided transportation, groceries and other necessities, help with bill paying, and other tasks to our mother for 6 years. We all work full time. When we convinced my mother to allow a caregiver in two times a week for 4 hours each session we were hit with a bill of over $200 per week. After several years of hands-on care we finally placed mom in an assisted living facility. It is tearing through her savings account. Shortly after moving to the assisted living home mom was hospitalized. The home is about 40 miles from either my sister or me and my spouse, yet when the hospital released her they expected my sister and I too give her twice daily injections of blood thinners. Neither of us have any medical experience. Finally we were able to convince the caseworker to have an agency come in once a day, and the assisted living staff nurse was able to do the other injection. As Yolanda Perez so articulately points out, there is no safety net. How can a hospital expect two working women who have never given an injection to someone before to be competent enough to inject our mother with a potentially deadly blood thinner? The fact that the system emphasizes individual responsibility means that many people, mostly women like me, are sacrificing their careers, health, and mental well being because the health care system is inadequate. Sadly I think the incoming administration will turn a deaf ear to this problem.
27
Yet, 53% of women voted for this administration.
7
You can do the paperwork to have your mother claimed as a dependent on your income tax form so you may recoup some money.
1
The scientific community got it wrong, and we are suffering for it. Instead of extending life in an exponential manner - i.e., puberty at 20, menopause at 70, etc., it basically only increased the length of the worst part of the human life - when the physical and mental self deteriorate.
36
I was happy to be my mother's sole caregiver for the last six years of her life, but she felt guilty and even told our neighbor that I was sacrificing too much for her. My own health has been fragile my entire life, and as a professional, my career definitely suffered. We were lucky as she took care of most of her needs while I put a comfortable roof over her head and handled all the technical issues. At points, I had to do things for her that I never would have dreamed of doing. I was adamant that she would not be warehoused in a nursing home no matter how difficult it might be for me.
Near the end when I was too sick to do much for myself nevermind her, the end of life caregivers told me they saw many, many family caregivers whose health had been broken. One caregiver told me about her own mother who had literally broken her bladder caring for her husband. This caregiver made it clear that she never told her family's story but that she was making an exception for me.
After my mother was admitted and released from hospital FOUR times in ten days, I broke and had to be carried away from work in an ambulance.
I was in one hospital while my mother was in another. My point: the medical establishment grinds away without the least awareness of the toll their 'procedures' take on family members. I saved my mother's life innumerable times because I had the smarts to intervene, but almost five years later my health is worsening from the accumulated stress.
Near the end when I was too sick to do much for myself nevermind her, the end of life caregivers told me they saw many, many family caregivers whose health had been broken. One caregiver told me about her own mother who had literally broken her bladder caring for her husband. This caregiver made it clear that she never told her family's story but that she was making an exception for me.
After my mother was admitted and released from hospital FOUR times in ten days, I broke and had to be carried away from work in an ambulance.
I was in one hospital while my mother was in another. My point: the medical establishment grinds away without the least awareness of the toll their 'procedures' take on family members. I saved my mother's life innumerable times because I had the smarts to intervene, but almost five years later my health is worsening from the accumulated stress.
81
We need a wide view of dependency and care. The families of those with mental illness and addiction confront these issues all the time, and further carry the societal stigma. Families are ravaged by these conditions in a family member, and it would be helpful to recognize their needs in this discussion, too.
23
I've been a caregiver for a parent for the last 8 + years. I've found my work performance has degraded, my personal relations have all suffered. I can no longer go on vacation & my health has declined. I have become resentful & feel like I've sacrificed & compromised my future for my parent. We are in a situation where we take 1 foot forward & 2 steps back which has been very demoralizing for us both. Medical technological advances has been wonderful, but I find we are simply extended life with often little improvement in the quality of such.
47
This is Nina Castro:
I have written about this many times in the NYT blog, "The New Old Age" mostly when Jane Gross was the contributor. I'm tapped out. The reason for that is that my mother is now 90 yrs old, with dementia, her money almost gone after 3+ years in assisted living, and although I am a healthy 65, I have no children, and am an only child and I need to start paying attention to my own gradually shifting health, and financial future. After 13 years of caregiving, beginning with trying to keep her at home, I feel hopeless most of the time, as I carry adult diapers and new clothes to "the place". In a pronouncement usually coming from naive, small children, my mother, recently said to me with some concern (and no irony - dementia kills that), "who are you going to have to push around when you get old"?
I have written about this many times in the NYT blog, "The New Old Age" mostly when Jane Gross was the contributor. I'm tapped out. The reason for that is that my mother is now 90 yrs old, with dementia, her money almost gone after 3+ years in assisted living, and although I am a healthy 65, I have no children, and am an only child and I need to start paying attention to my own gradually shifting health, and financial future. After 13 years of caregiving, beginning with trying to keep her at home, I feel hopeless most of the time, as I carry adult diapers and new clothes to "the place". In a pronouncement usually coming from naive, small children, my mother, recently said to me with some concern (and no irony - dementia kills that), "who are you going to have to push around when you get old"?
160
At some point, America must discuss what is a modern American Family and what is fair.
Perhaps a modern family might be older people who want to form a family with people without a direct DNA connection. And who has a right to determine this.
And speaking of fair, is it fair that your father has dementia and your neighbor's father does not?
Perhaps a modern family might be older people who want to form a family with people without a direct DNA connection. And who has a right to determine this.
And speaking of fair, is it fair that your father has dementia and your neighbor's father does not?
5
Thank you Dr. Khullar, for the links to various agencies that can provide help to caregivers.
8
Short Answer: no one. Long answer: most of your ideas are unrealistic or would not help. I was a caretaker for over a decade for my Grandmother, who lived to be 100; my father, who had so many strokes we stopped counting; and my mother who had breast cancer, Parkinson's and Alzheimers. And during this time I also took care of my husband and 2 small children- one with juvenile diabetes. The vast majority of family and friends were perfectly happy to let me do it all. In fact, the only thing most people seemed willing to do was criticize and complain. I chose to do what I did and I am glad I made that choice but it has taken a major toll on my health. The Agency for the Aging just provided written lists of provider info- more responsibility for me to assume- and most services were needs-based or had long waiting lists. Someone from my mother's church actually called me to tell me to stop my mother from attending Mass as she "upset" the other people there by saying her rosary out loud- like the 7:30 AM daily mass is so heavily attended. Yet they continued to cash the checks she wrote them. People that helped me: my husband and kids, one of my Mom's neighbors, the Alzheimers Association, my Mom's hairdresser and the home health aide the hairdresser helped me find. That's it. And I don't know how it can change- you can't force people to help if they don't want to.
105
Thank you. I took care of both my parents for 8 years. Like you I chose to do it, and I learned a tremendous amount through the process, but it came at a price. The lessons that stood out are: 1) "No one is going to come help you. Rally yourself NOW." (recited whenever in a hopeless situation). Compartmentalizing. 2) Insurance and Medicare--NOBODY knows until they get there what will be covered for how long, and how much will be left for the patient pay. 3) EVERYBODY is out to get the elderly's money. 4) ALL my vacation time belonged to my parents, and some I didn't have as well. No one understands how much energy, heart, expertise, common sense, and drive go into this until they get there and choose to do it.
19
Connie, you are exactly correct. The answer is no one. When I was caring for my terminally ill father, I was shocked by people's refusals to help - even when I pleaded. I couldn't get any help from my two brothers - both of whom lived a short distance from my dad, while I lived much farther away. My employer simply said that if I truly needed special consideration then I should go on unpaid FMLA leave. Unpaid FMLA only lasts for 6 weeks, so in order for it to be helpful, you need to know in advance exactly when your loved one is going to die. (Miraculously, I did manage to guess that six week mark pretty accurately, but it is absurd to expect that.) Like you, I received help from my husband and a neighbor of my dad, but not many others. It's been nearly two years since my dad passed away, and I am still recovering from the damage to my health. And I am not sure whether I will ever recover from the damaged relationships. If you can't count on your siblings when your parent is dying, can you count on them for anything?
20
Yes. my mom died two days before i would have run out of FMLA (unpaid) and the managing director of my unit (a division of an F100 company) said "Well that was close; I was going to have to call you to discuss 'options'" which would've been for me to resign or be let go. and I was a stellar employee who had received numerous internal and external rewards and had 15 continuous years of service. But one year of eldercare culminating in six weeks off and i would have been done for.
yet new parents get more time off and tons of indulgence, by that same company, if the kids are sick or there's the eternal "child care emergencies." Not to mention more bennies per capita.
yet new parents get more time off and tons of indulgence, by that same company, if the kids are sick or there's the eternal "child care emergencies." Not to mention more bennies per capita.
10
If this country thinks that having family members care for ill, aged, often difficult to care for family is the way to do things pay us for it. Replace our lost wages, lost retirement income, etc. Train us to change catheters, clean central lines, give insulin shots, turn a patient in bed, dress a patient, cut their finger and toe nails, and so on. Help us to pay for the dressings, ointments, and other equipment that will be needed to care for them. Provide us with respite so that we don't wind up in ill health while caring for an ill family member who cannot be left alone. Otherwise start to pay professional caregivers living wages, provide better nursing homes and in home care solutions that don't cost a fortune, and stop telling us that it's our job to care for an aging parent that we may not be equipped to care for. Not everyone has had a good enough relationship with their parents or their family to want to do this.
This country's approach to medical care and family is so unrealistic that it cannot be captured in a paragraph. We assist corporations in making money more than we do families in need while claiming to care about families. What a joke! We have to be on call for work 24/7, on call at home 24/7, willing to fight for what should be covered 24/7, and have lives. Having a war is easier.
This country's approach to medical care and family is so unrealistic that it cannot be captured in a paragraph. We assist corporations in making money more than we do families in need while claiming to care about families. What a joke! We have to be on call for work 24/7, on call at home 24/7, willing to fight for what should be covered 24/7, and have lives. Having a war is easier.
136
Oh, well, I can hardly wait for Trump and Price and Ryan to talk about "access to beautiful solutions" in every aspect of healthcare, including caregiver burnout. I suspect they'll hammer it home with their policies (or lack thereof) that no one will care for patients, let alone caregivers. In case no one has realized it yet, after 8 years where we had a president who actually tried to help, is that, beginning very soon, we're once again on our own, in the land of the irrationally exuberant free healthcare market.
53
A National Health Program, as outlined in The Physicians Proposal, available on the PNHP (Physicians for a National Health Program) website, www.pnhp.org includes provision for the full range of long term care for the disabled of all ages. I encourage reading it and supporting legislation HR676: Improved Medicare for All.
24
What about the endless agony of bureaucratic errors, mistaken bills that threaten you with collection agencies, unreturned phone calls, secure messages through provider websites that take days to be answered, and often incorrectly so that you have to start everything over again; computer errors that can't be fixed no matter how many times you "Contact Us" or how many hours you spend on hold only to be cut off or (if you're lucky) try to understand a scripted customer "service" agent with an impenetrable accent and a bad connection? Or trying to get an appointment with a doctor who has no openings for the next 4 months? Or trying to figure out a phone or cable contract, choose a health insurance policy or decode banking fees?
And don't get me started on the hideous legalistic nightmare of trying to exercise a POA with an obstinate financial institution.
And that's on a good day. On bad days, the TV, phone or internet goes down, the car won't start, the closet is overrun with ants, the sink clogs, the power fails, or a caregiver calls out without warning so you can't go to your own doctor’s appointment, and the agency you're paying a 100+ percent markup over the caregiver's subsistence wage can't find a replacement, and by bedtime you realize that nothing on your "to-do" list got done today.
I can spend hours a day on this.
Caregiving is hard enough. But corporate America is an infernal machine that turns it into a living hell.
And don't get me started on the hideous legalistic nightmare of trying to exercise a POA with an obstinate financial institution.
And that's on a good day. On bad days, the TV, phone or internet goes down, the car won't start, the closet is overrun with ants, the sink clogs, the power fails, or a caregiver calls out without warning so you can't go to your own doctor’s appointment, and the agency you're paying a 100+ percent markup over the caregiver's subsistence wage can't find a replacement, and by bedtime you realize that nothing on your "to-do" list got done today.
I can spend hours a day on this.
Caregiving is hard enough. But corporate America is an infernal machine that turns it into a living hell.
188
ejb: I hear you. I think a lot of us hear you. Anyone who has had a family member who has needed or needs assistance, a friend living through chemo or any other treatment, or done it themselves knows exactly what you are writing about. It's like living in a tornado that never stops. Even when the person dies it doesn't end.
24
Don't forget the "charities" - including churches! - that prey on vulnerable older people to steal what money they have. It's terrible what passes for normal behavior for corporations and this other "industry".
14
I almost cried when I read this, ejb, because it is so familiar to me. Can I add the IRS to the list? Preparing an elderly loved one's taxes is a nightmare, and the IRS has no patience or sympathy whatsoever. And sorting through all of the junk mail in order to find that 1099...
7
"Villages" help support family caregivers by coordinating volunteer help on the kind of daily tasks a friend or neighbor might do. Based on Beacon Hill Village in Boston, these grassroots, volunteer-driven membership organizations are being formed across the country. They can provide part of the support people need. See the Village to Village Network for more information.
10
This is a very important topic that needs to be further explored in conversations about healthcare.
Thank you for bringing it to light.
Thank you for bringing it to light.
17
This is all made more difficult by cultural norms in America today - adult dependence is simply not cool. Ask a Chinese person what's one of the biggest cultural differences between the US and them, and they will reply "You put your elderly parents in nursing homes - we don't understand it. You are missing out on a lot." I think they are right.
20
I'm inclined to agree with you, Stephen, except...
I am a single female in my 30s. I did my utmost to find a home where I could support my parents in place. Those true "family homes" were far out of my budget as a single female (and I expect to remain single because no men are interested in dating a woman who has sole custody of two disabled senior citizens). So I now live alone in a tiny 1 bedroom house (400sf footprint) and spend each weekend with my parents at their reasonably priced house that I bought for them 90 minutes away. I considered moving to a less costly region, but my job is highly specialized and potential employers are few.
It takes serious money to be able to support a household that includes elderly parents. Most of my generation do not have those resources, at least not now and likely not ever.
I am a single female in my 30s. I did my utmost to find a home where I could support my parents in place. Those true "family homes" were far out of my budget as a single female (and I expect to remain single because no men are interested in dating a woman who has sole custody of two disabled senior citizens). So I now live alone in a tiny 1 bedroom house (400sf footprint) and spend each weekend with my parents at their reasonably priced house that I bought for them 90 minutes away. I considered moving to a less costly region, but my job is highly specialized and potential employers are few.
It takes serious money to be able to support a household that includes elderly parents. Most of my generation do not have those resources, at least not now and likely not ever.
28
Stephen, I'm willing to bet you have not been taking care of a family member for the last several years.
4
Your points are well-taken. I'm not sure if you have siblings but...I think part of what makes the typical Chinese family and certain others different is that...they are willing to make huge sacrifices..ones that many Americans are not. This includes extended family members pooling resources for the good of the family as whole, especially for the elders. Many American family members would never agree that they'd all scrimp on basic needs and 'wants', pool together money, buy a large home together, help the extended family out with cooking, childcare, elder care, etc.
It's a completely different mentality, and one that the US as a whole needs to step back and reconsider. When you think about it, it wasn't all that long ago that even in the US, there were multiple generations all living under one roof.
It's a completely different mentality, and one that the US as a whole needs to step back and reconsider. When you think about it, it wasn't all that long ago that even in the US, there were multiple generations all living under one roof.
5
There need to be formal programs for re entering the workforce after caring for someone, sometimes for years. Being a full time caregiver can destroy a career and savings, and leave a person with little or no money, no job, and few prospects.
52
Not all caregivers are middle-aged women caring for aging parents. I am a 64-year-old man who has been the sole caregiver for my totally and permanently disabled (both physically and cognitively) 63-year-old wife since she suffered a massive stroke nearly 17 years ago. We have no family members in the city where we live. There are few resources for people like me. Even most support groups are comprised entirely of women, most caring for ailing husbands or parents. For me, the greatest challenge lies in resisting social isolation and a lack of resources for respite care--I can't travel or take vacations; I haven't even been to the movies in 16 years. But my greatest fear by far is in considering what might happen to my wife should I die or become disabled myself. I have no answer for these challenges; I simply do my best to preserve my health and just soldier on. And it gives me no comfort to realize that increasing numbers of my fellow Americans will be joining me in shouldering this burden in the years to come, especially in the face of an incoming administration that is at best indifferent to people in my shoes.
243
My Dad has cared for my Mom who has MS for the past 30 years and you described his life. I only hope for the best for you and your wife. I am not overly religious but have to think there is a special place in Heaven for caregivers like you and my dad.
5
If you want to find family caregivers, look within the health care system. They are at doctor's offices, emergency rooms, hospitals. And, yet the health care system has no support in place specifically for family caregivers. Why do family caregivers interact with doctors regularly and yet never receive information about websites and support groups which could provide resources and support? It's incredibly frustration that such a large group which does so much receives so little in return. Our health care system, our communities, our workplaces and our religious communities have got to do a better job supporting family caregivers, even if it's just connecting them to each other. One of the best resources for a family caregiver is another family caregivers. It's incredibly liberating to connect with someone else who just gets it.
43
There's not even a physical acknowledgement of them. When my mom was undergoing chemotherapy, the areas had recliners for the patients and stiff little low-backed straight chairs for their companions/caregivers. Try sitting for five or six hours without being able to lean back. When your body is already tense, tired and aching from stress and fatigue.
I would take walks or go outdoors for air, but my reason for being there was to hold mom's hand. Even a padded ottoman or footstool would've been more comfortable. And this was a new, upscale infusion center -- can't even imagine the strain of people dealing with this at shabby old hospitals.
I would take walks or go outdoors for air, but my reason for being there was to hold mom's hand. Even a padded ottoman or footstool would've been more comfortable. And this was a new, upscale infusion center -- can't even imagine the strain of people dealing with this at shabby old hospitals.
56
I stood next to my mother's gurney in the ER at Lehigh Valley Hospital (an excellent hospital actually) once for ten hours. No chairs anywhere. I couldn't leave her station because we were waiting for the doctor, and I knew they'd show up as soon as I stepped away to the lobby just to sit down. I did sit on the floor for a few minutes, but it got painful on the hips, and there wasn't a lot of margin around the gurney to maneuver. So I stood.
10
Good point, Anne. I accompanied my elderly neighbor to ER (because her well-heeled son wouldn't answer his cell phone all day; he knew it was me and what that portended) and stood there for six hours making sure she was attended to, and talking with health care providers. Nary a chair in sight. I did finally get a cup for some water for myself from an aide. Begrudgingly.
7
Probably the best thing one can do is delay having children. Time it so they will reach retirement just as you are ready to depend on them. That's what my mother did, and it has worked out beautifully. She's 93 and I'm 63.
6
This did not work out for me. I am in my late forties, my mother in her early eighties. My second child will go to kindergarten next year. My mom has never been capable of helping out with my kids. She and her husband are starting to need a lot more care and I'd love if I could leave my kids to heat up mac and cheese while I check on her. Because their house is not the safest place for me to have them with me when I visit them. Trying to find childcare so I can take care of mom creates a lot of logistical problems.
20
(to drymanhattan) What your mother did will work for very few people; the math will not work out. Parents don't typically live to 93, and many workers find it a huge disadvantage to retire at 63. If you became a father at 25, your oldest child will turn 65 when you're ninety. Chances are good that you will have needed some level of care before that point, and even if the required care is minimal (allowing a child to hold a full-time job), there's no guarantee that any of your children will be living and working close enough to provide it.
7
This is an extraordinarily hard problem. The solution will in some ways require a new reckoning with old age and how it transforms us. As the demands on early adulthood and midlife have shifted or diversified, the way we deal with our elderly must also change--the family structures that buffeted the experience of previous generations are no longer sufficient as a safety net. Medicare helps. Medicaid helps. Still the burden of the cost, both in terms of the isolation of the caregiver, or the weight of responsibility felt by the caregiver, in addition to the drawing down of savings from the next generation can be overwhelming.
24
Everyone read "The Nordic Theory of Everything". Read about Scandinavian methods of health care and elder care as well as education. Read about relative costs and outcomes. Compare to the U.S. of A. Shake head in bewilderment.
Carl, Portland
Carl, Portland
90
Yes - reading this from Norway, and wondering how long Americans are going to put up with it. How many old people in America end up living on the streets? The Labor Party here campaigned about 20 years ago, on a platform of providing everybody in assisted living a single room - won the election, and fulfilled their pledge - though it took longer than they stayed in office. Getting old is the pits - but having your kids or daughter-in-law or niece have to give up a career to care for you, is tragic, even though the alternative is worse. And unnecessary. I thank my lucky star for my Norwegian social security number.
11
We have killed several generations of family members, potential caregivers through abortion. We have slighted ourselves in future laborers to pay taxes. Now we pay the consequences with an aging demographic.
3
Oh, for goodness' sake! Abortion is not the reason that caregivers in this country are overburdened and overwhelmed. Abortion is not the reason we are facing a crises in this area of healthcare. The line of thinking that states that we would all be much better off as we aged if abortions hadn't occurred is absurd.
Keep in mind that even in families that do have many children, there is no guarantee that all of them will step into the caretaker role when the time comes. Job commitments, geographic separation from aging parents, illness or disability among adult children or, perhaps most distressing, children who can't be bothered to assist often whittles down the list of potential caregivers. Oftentimes it's just one or two people who do the heavy lifting while the rest circle about the periphery.
Keep in mind that even in families that do have many children, there is no guarantee that all of them will step into the caretaker role when the time comes. Job commitments, geographic separation from aging parents, illness or disability among adult children or, perhaps most distressing, children who can't be bothered to assist often whittles down the list of potential caregivers. Oftentimes it's just one or two people who do the heavy lifting while the rest circle about the periphery.
63
What an original and false statement about why one should choose, or not choose to have an abortion. With the name "Van" I'm assuming you never had to face that choice.
34
So, people should bear unwanted babies so they can grow up to work in nursing homes? Sick.
62
As a full time caregiver of a child with cancer, I have had to give up working and paid a significant cost in terms of lost wages, lost opportunities, loss of social network, etc. I see so many of these articles focused solely on caring for the elderly person, I would like to see more about caring for seriously ill children. Caregiving for a child with cancer is so traumatic, that is not uncommon for parents who go through it get PTSD and I know of many parents that resort to medicating themselves with heavy amounts of anti-anxiety drugs just to get through the days. In exchange for this, the federal government provides us parent caregivers no paid parental leave, no ss or retirement benefits for this work, no guarantee you job will be held, and thanks to the current Congress, we can look forward to loosing all the benefits of the ACA as well.
119
The difference is that people do roll the dice on having kids, voluntarily. No one chooses to have an ill parent but people who don't want the uncertainty, financial cost, career sacrifices etc. involved in dealing with a sick or disabled child can choose to be child free.
Also please be honest. As a stay-home parent you DO get social security benefits, Medicare at age 65, etc, despite not contributing to the system. Disabled children get social security, and the caregivers (usually parents) of children who have lost a parent also get a monthly stipend.
You also get child tax credits, deductions and potentially deductions for medical care expenses. NONE of which are available to adults caring for elders, siblings, spouses, extended family or friends.
I am sorry for your sitatuion but to say you are hard done by compared to those who get ZERO societal support is a real stretch.
I do think all would-be parents should sit down and think long and hard about the potential for producing a sick or disabled offspring and how they would handle it financially, emotionally and logistically. It does happen.
Also please be honest. As a stay-home parent you DO get social security benefits, Medicare at age 65, etc, despite not contributing to the system. Disabled children get social security, and the caregivers (usually parents) of children who have lost a parent also get a monthly stipend.
You also get child tax credits, deductions and potentially deductions for medical care expenses. NONE of which are available to adults caring for elders, siblings, spouses, extended family or friends.
I am sorry for your sitatuion but to say you are hard done by compared to those who get ZERO societal support is a real stretch.
I do think all would-be parents should sit down and think long and hard about the potential for producing a sick or disabled offspring and how they would handle it financially, emotionally and logistically. It does happen.
9
Funny thing- my tv channel was overrun with ads for St. Jude's, Shriner's,
Children's Hospital,etc. all wanting $19.00 a month for eternity for kids with cancer. They made out that they supported the families as well. Perhaps in Ohio, there are groups that could help your family.
Children's Hospital,etc. all wanting $19.00 a month for eternity for kids with cancer. They made out that they supported the families as well. Perhaps in Ohio, there are groups that could help your family.
Wow. That is quite a lot of assumptions there. Many of them false, including the fact I said I get ZERO support - those are your words. I can go on and on about what is different about a parent. For example, my journey will most likely not end with my son dying and me inheriting assets. At retirement, I will get some ss from when I did work, but will get less than I would have if I had worked at a job paying in all along instead of working my butt off at home keeping a child alive (who btw, will most likely be paying your ss benefits).
My son does not receive social security, like the majority of kids with disabilities. Its not like you just immediately qualify with a diagnosis. Unlike the vast majority of elderly parents, he receives no income. Yes, I get deductions for medical expenses, but that is because I pay the medical bills. It not like a parent who does get an income and then is billed. Most caregivers of elderly people are only paying their parents' bills when the parent's money has run out. I have paid his bills from day 1.
I find the blaming the victim attitude whether direct or implied to be downright cruel. By that logic, no one should drive because if they are horribly injured in an accident - well, they voluntarily to chose to drive knowing that could happen and therefore, deserve no sympathy or support. Stunning.
My son does not receive social security, like the majority of kids with disabilities. Its not like you just immediately qualify with a diagnosis. Unlike the vast majority of elderly parents, he receives no income. Yes, I get deductions for medical expenses, but that is because I pay the medical bills. It not like a parent who does get an income and then is billed. Most caregivers of elderly people are only paying their parents' bills when the parent's money has run out. I have paid his bills from day 1.
I find the blaming the victim attitude whether direct or implied to be downright cruel. By that logic, no one should drive because if they are horribly injured in an accident - well, they voluntarily to chose to drive knowing that could happen and therefore, deserve no sympathy or support. Stunning.
9
Such an important topic, but solutions offered barely scratch the surface. A basic issue is that we've evolved into a society where, for better or worse, and due to low wages and changing social expectations and obligations, all adults are expected or required to be trying to earn a market wage. Anyone who ignores that can be put at huge personal risk. There is rarely a pool of stay-at-home family members to call on, and that situation is getting worse, fast. Add to the mix families who foist burdens onto whichever member is least resistant to taking on caregiving (often a single adult, who will have nobody to care for them when they need it), but with no framework to make sure that any inheritance is automatically redirected to that person, and you have not only a society-wide crisis but an interpersonal one, as well. If all work is going to be commoditized, we need adjustments to the social safety net, tax systems, inheritance rights, long-term care insurance market reforms, and more. We won't get them before millions suffer for many decades, if health insurance and mortgage finance and tuition policies are any indication.
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Here's a thought. Paid maternity leave should be paid maternity/paternity/caregiver leave, where we all pay a tax, and then money from that pot is used to pay for FMLA time so that leave does not need to be unpaid when it is extended for good reason. We all have seasons in our life when we need to be there for our loved ones. Now let's put our money where our mouth is.
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I lost $11,000 in pay taking unpaid leave under FMLA to singlehandedly take care of my mother who was dying at age 68 of colon cancer.
Of course it was worth every penny and I would give the same or more for five more minutes with her.... but there is no denying that in additional to the emotional misery and physical exhaustion, that period had a serioius financial ripple effect.
And those same exact weeks, a co-worker who earned similar to me was off on PAID maternity leave due to her choice to produce a child. Cancer is not voluntary, childbearing is. We need to take care of people suffering from involuntary misfortune, and their families, before offering institutionalized perks for certain voluntary lifestyle choices.
Of course it was worth every penny and I would give the same or more for five more minutes with her.... but there is no denying that in additional to the emotional misery and physical exhaustion, that period had a serioius financial ripple effect.
And those same exact weeks, a co-worker who earned similar to me was off on PAID maternity leave due to her choice to produce a child. Cancer is not voluntary, childbearing is. We need to take care of people suffering from involuntary misfortune, and their families, before offering institutionalized perks for certain voluntary lifestyle choices.
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Great idea BKLNGirl.
We'd happily take unpaid maternity leave in exchange for another healthy child. Eventually most people realize the utter disaster that defects, disease, and accidents lead to.
1
i have 75 year old "children" caring for 98 year old parents. We need better senior one care. They all deserve it.
161
The biggest part of the problem is our fixation with preserving life at all costs, often long past any reasonable expectation of recovery or even living with dignity. We put animals out of their misery in such circumstances, but people are tortured, often against their will, with drugs and procedures, that leave them, and their caregivers, mentally and physically debilitated. And after months/years of caregiving, the caregiver has no right to say enough is enough. It won't surprise me in the future to be reading about people abandoning family members at hospitals in a last desperate act of self-preservation. The idea is not far-fetched; it was pioneered by the New York Foundling Hospital to help desperate mothers who could not care for their babies.
77
This is backwards and frightening. Before we decide it's okay to warehouse or end the lives of the already-born elderly who have given a lifetime of service to family and society but are now considered a burden, we need to decide it's okay for a woman to decide for herself whether or not birthing a child is a burden on her, her family, and especially, the rest of society. That means ready, affordable access to all forms of birth control and abortion services. That we claim every life is precious before birth but are ready to warehouse those "burdensome" lives at the other end of the spectrum is twisted, revolting, and so Republican.
10
This is why end-of-life choices must be discussed among family members! If a person does not want 'everything done', they must be sure to let their families know. Realistic plans must be considered. And I know of families where the adult children are now taking care of an aged parent in their own home, (now demographically unsuitable) because 'they promised'. Their own health is now compromised. Life is constantly changing, and one needs to consider many factors .
9
Don't overlook the role of religon in these issues. Oftentimes, a person's faith will not allow them to state when enough is enough.
Almost all primary caregivers are women, whose time and energy is never rewarded nor looked at as real work. Similar to the welfare to work program, women are taken away from their own homes and forced to clean other's houses and care for other's children, while their own children go into paid child care and their own homes are not cared for properly. Women always take upon the unpaid burden of keeping families and households going with no recognition or respite.
108
It's simply not true that almost all primary care givers are women. Did you not read the article or follow the link in the article?
'Also surprising are findings from subpopulations of caregivers. Today, nearly a quarter of America’s caregivers are millennials between the ages of 18 and 34 and are equally likely to be male or female. On the other end of the spectrum, caregivers ages 75 or older are typically the sole support for their loved one, providing care without paid help or help from relatives and friends. Men, a group often stereotyped as failing to take on caregiving responsibilities, currently represent 40 percent of family caregivers and provide an average of 23 hours a week supporting a loved one.'
http://www.prweb.com/releases/2015/06/prweb12765231.htm
'Also surprising are findings from subpopulations of caregivers. Today, nearly a quarter of America’s caregivers are millennials between the ages of 18 and 34 and are equally likely to be male or female. On the other end of the spectrum, caregivers ages 75 or older are typically the sole support for their loved one, providing care without paid help or help from relatives and friends. Men, a group often stereotyped as failing to take on caregiving responsibilities, currently represent 40 percent of family caregivers and provide an average of 23 hours a week supporting a loved one.'
http://www.prweb.com/releases/2015/06/prweb12765231.htm
7
"Women always take upon the unpaid burden of keeping families and households going..."
I refer to such women as self-imposed martyrs. You said it yourself...that the women 'take it upon' themselves. If particular people behave this way 'because' they are female, then that is on them and no one else. Whether it's women talking about the division of housework, cooking, childcare with their male mates, or whether it's women talking about who's helping out with eldercare for their parents, so long as women going around 'assuming' it will all fall onto them, so it will be. There are plenty of men out there who do their share, and beyond. I find it interesting that the single women I know who hold the strongest negative beliefs about men, that is exactly the type of man they seem to end up with, one relationship after the other. Usually whatever we expect from people, is what we will get.
I refer to such women as self-imposed martyrs. You said it yourself...that the women 'take it upon' themselves. If particular people behave this way 'because' they are female, then that is on them and no one else. Whether it's women talking about the division of housework, cooking, childcare with their male mates, or whether it's women talking about who's helping out with eldercare for their parents, so long as women going around 'assuming' it will all fall onto them, so it will be. There are plenty of men out there who do their share, and beyond. I find it interesting that the single women I know who hold the strongest negative beliefs about men, that is exactly the type of man they seem to end up with, one relationship after the other. Usually whatever we expect from people, is what we will get.
2
I'll link to this from my own growing collection of healthcare statistics (http://www.mhealthtalk.com/home/healthcare-statistics/) and encourage legislators to craft policies to address the problem.
AARP studied this issue too and put the 2009 annual burden on unpaid family caregivers at $480B/year [higher now]. That includes lost worker productivity, reduced earning capacity & retirement income, and increases in their own physical & emotional health and related costs. It’s about 3.2% of the U.S. GDP ($14.1 trillion in 2009), or more than the $361B in Medicaid spending, and nearly as much as the $509B in Medicare spending. It’s also more than half of what we spend on defense.
AARP studied this issue too and put the 2009 annual burden on unpaid family caregivers at $480B/year [higher now]. That includes lost worker productivity, reduced earning capacity & retirement income, and increases in their own physical & emotional health and related costs. It’s about 3.2% of the U.S. GDP ($14.1 trillion in 2009), or more than the $361B in Medicaid spending, and nearly as much as the $509B in Medicare spending. It’s also more than half of what we spend on defense.
8
One of my greatest problems with caregiving, whether my aging parents in the 80s or ongoing with a relative with disabilities, is the absence of emotional support. The person being cared for often is angry, jealous of those without disability, or so depressed or in dementia that he or she criticises or demeans the caregiver. And if one makes a mistake or cannot achieve the needed remedy, the blowback is often terrible. Empathy from anywhere is precious.
214
So true! Biting the hand that feeds them, and often putting absent family members on a pedestal. Distant siblings always underestimate the toll and often "contribute" by introducing monitoring, suspicion, etc. This is one reason improved policy at the government level would help. We expect people to move across country for work, but ignore the impact on families that are then so fractured, with grown children who are geographically isolated themselves from any hope of family support - what a mess!
40
This is an important article, including its link to an eldercare locator which might be very helpful to a vast number of people if it were advertised. I have been a caregiver for the last 4 years and consider myself smart in terms of finding information. In all this time I never found this publication. My husband saw doctors at George Washington and Johns Hopkins hospitals and we had the services of one of the most respected social services agencies. No one ever suggested this or much else that was useful. The most helpful agencies are the hospice organizations and its a sad commentary one has to wait until the very end of a lonely and difficult journey for good help.
And the elephant in the room is who is going to take care of the care givers.
And the elephant in the room is who is going to take care of the care givers.
138
"And the elephant in the room is who is going to take care of the caregivers."
I obsessed about this all spring. Every time I helped my mother with her coat or drove her somewhere I wondered who will do this for me when I get older. I can't say I was a caregiver in the usual way. My mother died at 97 with her mental faculties intact. She could recite her considerable list of medicines with dosages and took them accurately. She dressed herself and took care of ALL of her personal needs. The only time I helped with washing her hair or putting on socks was when she was recovering from shoulder replacement. She made at least part of every meal except the last two weeks. She made her bed the day before she died. Her mantra was, "Don't do something for me that I can do myself." Yet, if I wasn't here she would have been totally isolated. All her friends were dead. I have no children, what is going to happen to me?
I obsessed about this all spring. Every time I helped my mother with her coat or drove her somewhere I wondered who will do this for me when I get older. I can't say I was a caregiver in the usual way. My mother died at 97 with her mental faculties intact. She could recite her considerable list of medicines with dosages and took them accurately. She dressed herself and took care of ALL of her personal needs. The only time I helped with washing her hair or putting on socks was when she was recovering from shoulder replacement. She made at least part of every meal except the last two weeks. She made her bed the day before she died. Her mantra was, "Don't do something for me that I can do myself." Yet, if I wasn't here she would have been totally isolated. All her friends were dead. I have no children, what is going to happen to me?
149
I am in your same situation, S.L. Wish we were neighbors.
11
Given that many of the caregivers now are baby boomers, no one will take care of us. If we cannot afford assisted living and we cannot find affordable housing we will be tossed into the street. The biggest mistake that this country has made in the last 36 years was not planning for the demographic bulge that is the baby boom generation getting old. Instead of prioritizing the building of affordable and accessible housing, revamping our health care system to allow all patients access and care they need, continuing to work on getting every retired person a decent pension, we elected Reagan who, with the GOP (and the not so small help from the Democrats) ignored what was coming. And now we're paying the price. I'm sure that the GOP will happily legalize suicide once it becomes obvious that many of us will be unable to retire, unable to avoid homelessness, and no longer useful to society. After all, they do want to bury us.
32