Depressingly common resource problem.
5
Marjorie is a wonderful woman to do the work she does. I had another wonderful home health aide, Vicki, who cared for my parents, and then my father with progressing Parkinson’s and dementia until the money ran out. Like Marjorie, she was from Jamaica.
With over one thousand comments this may have been said already, but this is my experience. Our health aide was hired through an agency. She lived in my parents’ home and was with our family for almost five years. She was part of the family and we love her dearly; she sacrificed much for us.
Hiring through an agency increased the cost to us every single day without increasing our aide’s pay. By the end of her care we paid $200/day...a day! and she didn’t receive even 35% of that, even after all that time, when the agency was doing little more than counting hours. Perhaps paying insurance for her and associated costs, but it was entirely out of proportion for the years she was with us.
That’s the shame of home health care, and Bob’s family is paying a huge redundant overhead for the care Marjorie is providing. That extra money should go to Marjorie, as I tried to get my agency to increase the share to our aide.
92
People like Marjorie Salmon are the unsung heroes of our society. They need to be paid better and allowed more humane work schedules. With all the debate nowadays about ACA and MFA, we need to factor in the issue of elder care, which is our biggest, below-the-radar health care crisis.
64
As a Nursing Aide myself. I admire Marjorie and the family is very lucky to have her. I used to work night shifts but couldn't do it anymore because of lack of sleep. I work through a d agency as well. I can work until 11 pm at night. Please google " From Janet With Love" to know my story as Caregiver. Thank you.
29
I can’t think of a more valuable service—there are strangers who will take our parents and shield us from the frustrations and indignities of their final years. They should be valued as such. And have access to their own health care!
48
This makes me so angry. Why can't we voluntarily opt-out before we end up like this? Say our goodbyes with most of our dignity still intact? No one in this story has a life. Marjorie's beautiful heart and soul could be focused on the babies, the children who are dying, of neglect.
64
I understand the position that Bob's children are in. I have lived this nightmare as a 24 hour caregiver to both my parents. But I question whether Marjorie and Bob are both safe given the living situation and Bob's advancing condition. If you have to put barriers up to keep Bob from going out, then Bob needs a safer place to live with more adequate supervision. Kudos to Marjorie! But at the very least, Bob needs two aides working 12 hour shifts.
59
This just made me cry. And worry for the future of our aging population.
30
Happy another poster verified my memory that JFK Jr was working hard to help people working in these low wage, stressful, back breaking jobs......too bad he died too young to make a big difference.
My mother had dementia....lived with us nearly 5 years, until we just couldn't take it anymore. Then she went to an assisted living home that we really couldn't afford but had to.....
Our country needs to re think how we treat the elderly and the sick and injured. We need, badly, some form of "medicare for all" and better pay and conditions for home helpers, aides, and others like Marjorie.
36
Thank you New York Times and Andy Newman for exposing the harsh realities of working as a home health aide.
There is a crisis in home care both in New York and across the country. Low wages and exhausting working conditions have contributed to a dangerous home aide shortage.
Here in New York, it is about to become much, much worse.
Effective Sept. 1, funding to New York State’s Consumer Directed Personal Assistance Program was drastically reduced.
The program allows seniors and people with disabilities to hire trusted aides, including family, friends and neighbors. Some aides perform medical tasks that agencies are not allowed to do.
Pay, overtime and benefits for aides are handled by fiscal intermediaries. Budget cuts will force fiscal intermediaries to reduce wages.
Funding for overtime for home aides and independent living training for residents — supports that are critical to enable seniors to remain in their homes — will be reduced or eliminated. As a result, some program participants will be at risk of institutionalization. This would contradict the 1999 Supreme Court’s Olmstead decision, which
affirmed the right of individuals with disabilities to live in their communities.
I believe Gov. Andrew M. Cuomo and the state Department of Health are worsening the home care crisis. Higher wages, overtime and other benefits all contribute to the ability and right of senior citizens to age comfortably at home.
30
It's easy to judge the Dettmer family from afar, but keep in mind that even this level of care costs over $75,000/year. Arrangements that would ease the burden on Marjorie would easily push that tab to $100,000/year. The emotional and financial toll these situations take is far greater than can be imagined by people who have not gone through it.
57
This article is supposed to make us feel sorry for Marjorie, who is bored, exhausted and underpaid. I have a hard time generating pity or sympathy for this person. My husband and I both had demanding careers that we worked hard for and were recently main caregivers for both of his parents who are now deceased. An uninterrupted nights sleep was rare for about 6 years. Most vacation days and holidays were spent on housecleaning, grocery shopping and providing companionship. We were not paid anything and did not expect to be. The fact is, caring for the elderly is difficult and draining for anyone and many people are doing it for family members for nothing. I stopped working because the demands of two careers, two children and ill parents could not all be met. So not only was I not paid for caregiving, I was unable to continue paid work for which I had worked hard to qualify for. I guess I should have hired help, but my in-laws and my husband would never have stood for it. I don’t know what the solution is but caregiving, of children or the elderly, is not easy but it needs to be done for the greater good. That’s just how it is.
13
@SBC
I highly doubt the article was soliciting sympathy for Marjorie. Based on the article she worked in the industry for a long time caring for patients who cannot care for themselves. While the job is back breaking and difficulty she does it with a positive attitude. I highly, highly doubt she is asking anyone for sympathy. I am sorry you had to endure what you did with your family, but there is no rule stating that because you live the situation you cannot have empathy for others in similar situation. I believe you are missing the bigger picture, this country has a bigger crisis that we are not prepared or care to tackle.
We have a rapidly aging population that we are NOT position to provide adequate healthcare. Your family should not have to struggle or give up their career to support an aging family member.
Marjorie should not have to work under her current situation, nor should the family pay $75K or $400 per day just support their dad. We have a BROKEN healthcare system. Your lack of empathy should not be directed at Marjorie, instead you should use your experience as the the fuel to help fix our broken healthcare system. That way no one in your family will have to struggle in the final stages of their lives.
117
@SBC
But you were doing it for your own family, for Marjorie, this is her job. This isn't her family, it's her employment. I'm sure she'd like time for her own family and life.
91
Marjorie is a superstar.
67
This is a timely article. My bedbound father, 85 with Parkinson's and complications of falls, now has round the clock aides to keep him turned and changed. They are among the kindest and hardworking people I have ever met, and they are paid nowhere near commensurate with their level of responsibility. All of them are immigrants, and all but one (who is male) are women of color. I shared this article with them. They have similar stories! Thank you for covering this important topic. We need to provide much more support for those who care for the vulnerable elderly.
67
It’s likely that being a live in age pays no taxes. Still should be paid more.
1
I have worked in elder care administration, operations and marketing for the past 12 years and we are headed for a catastrophic yet wholly predictable situation, in which our aging population will not have access to the care that it needs. Most Americans are oblivious and our federal government is making particularly disturbing choices in this regard. Denying access to green cards to those who use or have used government services will weaken the workforce that provides essential care services. I live in CA and professional caregivers are predominantly immigrants from Central America, Asia, the Philippines and Africa. The need for these caregivers is already critical and will only increase. We will be lost without them.
68
I am a live In carer in the UK. My salary is reasonable but it is paid by my client. Unfortunately it is a catch 22 because if the Client or the client's family cannot pay for a carer the client must go into a NHS home if 24 hour care is required.
11
Would add this add'l NYTimes link to my and 'Alan's posts earlier, (all related articles that the Times should group together and keep adding to, please!) as another example of what can happen ... how fast, and how hard it can be on both the afflicted one and their spouse/caregiver.
While a more 'upbeat' story, certainly, than the others, and it shows, like Marjorie's positive tone having a soothing affect/impact, the huge difference a cadre of caring friends and family brings ... one sees down the road also for this man and this couple and it's also very difficult ...
https://www.nytimes.com/2019/08/29/fashion/weddings/after-countless-proposals-she-said-yes-again-to-husband-with-dementia.html?searchResultPosition=4
6
What about Bob?
Who gave the OK for Bob to be so intimately profiled when it seems he might be unable to provide that permission himself? Where is his right to privacy?
25
@hotGumption - Read the article. His kids gave permission for their father to be profiled. Considering that they are probably his legal powers of attorney/healthcare proxies/guardians now that he can no longer function in a normal adult capacity, they have the right to give that consent. You may not agree with it, but they have the right to decide things for their father as they see fit.
49
@hotGumption
Agree with you on this point.
Everyone deserves their privacy, and medical privacy above all.
When these types of articles (and PBS shows, etc.) first started showing up here and there, maybe 10 years ago, I would get irate and sadly emotional, and think ... gee, that's not fair to the person who can't say no to being the subject of the piece.
Maybe because I feel very strongly this is my fate, and thus their vulnerability is my vulnerability.
And yet, today, I read the article ...wincing all the way ... and I learned some things (and probably that is what the children of Bob had in mind) ... so/but what does this say about me?
Much to consider and assess ... and re-assess.
Thank you for your comment.
9
Like all of the best caregivers, she is an angel on earth.
34
Being able to pay for this is my definition of wealthy.
37
1. Marjorie is one fine human being. Thankful she immigrated to the U.S.
2. Don’t understand how “room and board” is considered part of Marjorie’s compensation. If Marjorie’s waking up during the night to care for Bob, she’s working! Even if Bob happened to sleep all through the night, she’s on Standby, and deserves to be compensated.
3. $160/24 hours = this is not right, people.
81
And what exactly is the purpose of living in a deranged and incompetent state of mind? Is it merciful to allow it to continue until the body fails too, or is it cruel to prolong the degradation?
50
It is my nightmare. No one should have to live this way. Ever.
37
Cancer research is funded at ten times that of Alzheimer's. Why?
19
The cancer industry is a cash cow. More equipment, more diversified. It's all about the profit and it always will be. WORSE, we know for a fact that some cancers could be avoided. Money, money, money.
15
Hey you people out there clamoring for better pay for these angelically dedicated workers: yeah, sure, I hear you. I agree. But her salary comes to close to 5000$ a month: which family is going to be able to afford this for their elderly? Yes, you can pool resources: but what if you are an only child and it all falls back on your shoulders?
8
If the home health agency is taking a fee of $20,000 a year, the owner should spell her at least one day a week. What a racket!
18
I just read two very funny books written by a Danish man in his 80s, “The Secret Diary of Hendrik Groen,” and “On the Bright Side, the New Secret Diary of Hendrik Groen, 85 years old.” It’s his actual diary, an account of the goings on and the residents in his government-sponsored elder facility.
The first entries, published anomymously, were so smashingly popular that his whole diary from 2013 was published and became an international best seller, translated into 35 languages. He calls it a novel, probably to avoid legalities, but as he writes “There’s not one sentence that’s a lie, but not every word is true.”
Groen hilariously documents the sensations-du-jour that the residents are aflutter about- whether that sensation be in the news or in the nursing home. He movingly describes the friendships that spring up and the sorrow of the inevitable passing of friends. And he writes about the “Old but Not Dead” club he and friends have formed to negotiate with the management and to plan excursions (all using walkers, motorized scooters or canes), 8 of them doddering together on outings to the jaw-dropping amazement of waiters, museum guards, and the general public
The books are evidence that old age can be an adventure, even for the physically impaired. But isolation and boredom kill. There is a different way to do elder care than for old people to be completely isolated, or to be a physical and financial burden on their families.
18
@Bee great but completely irrelevant to this article. The residents of a nursing home going out to museums and restaurants are not in the late stages of dementia.
11
@AB The elder care facility also has a dementia wing, which some residents are transitioned to. One of his dear friends becomes demented. He visits her every day. She doesn't know who he is, but always enjoys the 20 minutes he spends with her.
3
Dr. Dettmer could, quite simply pay more.
13
And if one red penny come up missing, absentee children will swoop in to cry foul.
13
Marjorie-- You are a saint-- thank-you for being Christ's hands on earth. I only hope I can be like you when my family needs me. You're in my prayers.
20
My god, what an incredible story! But I am baffled, why do things end this way for so many?
As for Marjorie, she is absolutely amazing.
13
If the government has laws preventing death with dignity strategies for those of us who would choose dying rather than living with dementia or chronic conditions which deprive us of any quality of life, then why isn’t the government providing the care and support we need in those final stages of life? If I am kept alive against my will, why does it become my responsibility to pay for that care?
34
@Janet Because the government doesn't particularly care about your life. But your manner of death involves special-interest groups who like to think they have the answers to everything else on earth, including you. And they pay lots of money for the privilege of telling the government what it should do about you and your life and death.
27
How about “changing underwear” rather than diapers, or some other term? Words not associated with babies help us maintain the dignity of both the caregiver and the cared-for, and prevent infantilization.
Kudos to this caregiver and others. Such challenging, difficult work should require much better wages and a health care system that supports long term care. The way we leave this world depends on the heart of our caregiver.
9
So many comments about Marjorie's patience and "generosity," yes she's just a "saint." What about the astoundingly clueless and selfish family?
Where is their humanity that she only has 3 days off from a 24/7 gig. How oblivious can you be? Does it not occur to them at all? Do they think, "oh, she wants to do it out of love for our father"? It would be quite easy to establish regular days off with a substitute caregiver from an agency.
There's a reason most long-term care insurance offers 2-week paid "respite" care for family members acting as caregivers. It's called BURNOUT.
40
Man, did this ever ring so true. My sister and I had to care for our 90+ year old aunt with steadily advancing dementia... something we were not all qualified to do (at 96, she went to be with her sister, our mother, and their father and mother). The last 3-4 years she needed round the clock. My aunt was not the easiest person to deal with in her state, but we had 3 complete angels to help her out (my aunt was a banker all her life, clients were the founder of IBM and a current SCOTUS justice-RBG, just to give you an idea of what this terrible disease is capable of what we always thought of as the best head in the family).
BUT I need to point to another systemic issue. Whether it's "assisted" or "independent" living, we were required to go through an agency. Handy when someone could not make it, BUT they took their cut. We paid the agency about $22/hr, the aide made $10. FORTUNATELY the agency did pay time and a half after 40 hrs/week. Immigrants every single one which most likely explains WHY there were so kind and gentle they all were. No comment on what I want to do to all disparaging them!
32
The life and treatment of home care workers demonstrate many serious social issues in today’s society. As the article states, most of the workers are women, people of color, and immigrants, and the work they do is “systemically devalued, dismissed as ‘domestic care’ and reimbursed at rock-bottom rates by state Medicaid programs.” These people work important, meaningful jobs to the community: completing unsavory tasks and dealing with difficult customers, yet are undervalued and compensated poorly for their work. The article does a good job of demonstrating this point by following the daily routine of a nursing assistant and quoting her interactions with her patient. Marjorie’s story displays the complex nature of this career and brings forth the question as to why these workers are treated so poorly. The stereotypical views of women, people of color and immigrants allow these workers to be underpaid and work under inadequate conditions. As modern medicine works to prolong the lives of humans, there becomes a growing need for these home health aides. People are living longer and with this prolonged lifespan comes many diseases and health issues requiring elderly patrons to enlist outside help to complete basic daily tasks. What this means for the workers, however, is long, grueling workdays and isolation from their outside lives: dedicating all of their time and effort to their customers. However, society still regards such work as poor, menial labor.
16
People like Marjorie are my heroes. My mother passed away earlier this year, and she was able to live at her home until the end, thanks to her dedicated caregivers. Fortunately, Mom did not have Alzheimer's, and did not need 24 hour care until the final months of her life. She had the financial resources to pay for her care, as well. We are facing an epidemic of dementia as the baby boomers age, and are totally unprepared for it. Right now, many people have to leave their jobs to care for elderly family members, putting their own futures at risk. Caregiver burnout is a serious problem. If you have a long term care insurance policy, check the fine print: benefits aren't paid until you are in a nearly terminal state, and few insurance companies now offer them as they aren't profitable. We need to look to Europe and Japan for solutions as they are far ahead of us in addressing this issue. A solution will require government subsidies and advance planning. I am not optimistic that this problem will be solved any time soon.
24
Are these workers underpaid and under appreciated-yes. But I have personally had caregivers take advantage of my relative, with dementia, and have her pay far more than is necessary for groceries, gas for a car she never drove, and too much money being taken out of the atm. I was told that it is expected that caregivers be given meals while on duty and a tip every week. I’m sure this is different with each agency. What needs to be done is have national guidelines and laws protecting both the caregiver and the family paying for the care, for their loved one.
9
@Melanie Goldstine I've seen this, too.
1
While I sympathize with the care giver, I am, to say the least, disappointed with the graphic details of caring for this man.
I'm surprised that his family did not object to their father being
exposed in this way.
I was the care giver for my mother for almost four years after she was diagnosed with vascular dementia. It was a hard slog, but I would have been horrified if I ever read about her condition, in the NYT, of all newspapers. Our dear ones who
no fault of their own find themselves dependent upon others when they can no longer take care of themselves, deserve better.
15
@Mary - from the article: "Bob’s son and daughter agreed to allow a reporter to spend time with their father and Marjorie." The article also mentions that Bob's son is a doctor; as such, he may realize how important it is that people understand the realities of in-home care.
49
@Mary Glenn Actually we might be better off if *more* people were left unspared the unglamorous details of aging, sickness (at any age) and infirmity. It's life as a mortal human, for better or worse, and it's too easy to be in denial while we're easily in control of our faculties. There is no shame in being human and needing help.
53
I was so impressed with this article and how unflinchingly it portrays what aging in America can be like these days - for those doing the caring and those cared for - that I’m going to give my daughter advanced, written permission to let the New York Times document every minute of my care if I ever wind up in the same circumstances as poor Bob and they think it’s a worthwhile story to tell. They can put it right on the front page along with my photo.
Part of the problem is illustrated in your comment - the impulse to whitewash it all, to hide the worst of the details so it’s not evident how hard it is and how bad it’s going to get. We need to be doing just exactly the opposite if we expect this situation to get any better. It needs to be right out there where everyone can see it for what it is.
And keep up the good work, Marjorie. You remind me of the beautiful woman from Liberia who helped us care for my Mom at the end. Honestly, she took care of all of us. We would have been lost without her.
41
This article is heartbreaking. I hope that Bob’s family reads it and realizes that Marjorie needs better pay, more paid days off, and help from them .
19
I wonder if people in the U.S. know that Denmark provides senior services, such as in home care, as a part of their taxes. They also provide universal healthcare and higher education. We need to look at a different system than the one we presently have in the U.S.. In my opinion, we have our priorities wrong.
48
We Americans need to redirect some of our enormous budget away from monstrously expensive boondoggles- (military industrial complex and oil industry, I’m looking at you)- towards making all chapters of life, including the last chapter, more humane and companionable.
40
It seems at least a few commentators here fault Bob’s adult children for not providing some of his care themselves. I do not. The skills and patience required to do this job well are uncommon.
However, according to the NYS rule, it seems Marjorie is underpaid at $160 per day. Even being paid for 13 hours of her 24-hour day, at $15 per hour in the New York region, her pay should be at a minimum $195/day.
I reserve my biggest criticism for the NYS Department of Labor, which instituted the “emergency” order limiting home health workers to 13 hours pay, citing the potential collapse of the industry if such workers got paid for 24 hours on the job. If the industry exists only due to the gross exploitation of workers, then perhaps it needs such a fundamental shakeup. Weren’t similar arguments, about the collapse of the Southern plantation economy, used by those opposed to abolition in the 19th century?
The NYS Department of Labor is not protecting these workers, but rather those that profit off them (the plantation owners, to extend the comparison). I’d like to read more about the lobbying that went/goes on in NY, and other states like CT where this story is based. Keep digging, NYT.
38
@D Bob's son is a doctor. I don't expect him to do the work himself--i do expect him to know how much it's worth.
15
Bob is a very lucky man in so many ways. A fabulous, patient, caring care giver plus a family with significant moey. How many of us have a son who is an MD who can afford $75,000 a year?
Darned few. Another aspect of the increasingly shredded, minimalist safety net that needs to be more than shored up - needs to be completely revised, so that boomer can 'age in place' with dignity.
It happens to all of us.
19
Why can't we exempt wages earned from aiding/assisting elderly/disabled from all taxes. If both spouse earns $30000 each, totalling $60,000, these total wages need to be exempt from any and all taxes. Why can't democrat ruled states start with their states, talk is cheap, action is important.
9
@Hari -
States do not have the authority to exempt anyone from "any and all taxes".
It is the federal government that imposes the federal income tax, FICA, etc.
Sales and property taxes are generally local (city, school districts, park districts, library districts), not state-wide.
4
Thank you this piece. This is journalism at it's finest and most essential -- telling the stories of the most marginalized with expertise, compassion, far ranging context, and a storyteller's verve.
23
Thank you this piece. This is journalism at it's finest and most essential -- telling the stories of the most marginalized with expertise, compassion, far ranging context, and a storyteller's verve.
4
Our medical system keeps people alive for money long past any quality of life.
28
And then there are those of us who are family caregivers - 24/7/365 - with little to no help. And no pay.
24
@Anna
And, little joy at times, I suspect. It is very hard, especially if you didn’t expect to have to do it. I wish you well.
15
This is an issue that most don't consider until it is the only option. I will never forget John Kennedy Jr's praise of his mother's caregivers during his Commencement address at Washington College. After praising the dedication and skill of the workers, he vowed to help to make sure that these workers have health care and a living wage. Clearly, at least from what I have seen and read, these positions are staffed by women, often mothers , who, like many Americans, do not earn enough to meet their financial obligations. What has to happen before this issue is addressed in a meaningful, long term fashion? Is this really how we want to treat those who care for us?
14
What a horror. In all ways.
Thank goodness for the end, that bit of light and brightening.
Does Bob wants to live -- or exist -- like this?
His children can't be at peace, ever, with the daily realities of this.
Marjorie is a saint, so clearly a caring person, who isn't making nearly enough money for this level of responsibility and number of hours tethered to her job.
I'm with Sly4Alan, commenter, below.
The NYTimes has at least 3 articles this weekend, all related, and, at least to me, together, all scream for the need for 'Death with Dignity' and right-to-die legislation in every state in the Union.
(Along with the NYTimes piece Alan linked, there is this in Health/The New Old Age section --https://www.nytimes.com/2019/08/30/health/stubbornness-parents-elderly.html -- and the comments are especially telling, including the NYTimes 'pick' from the neighbors/caregivers of one of the articles main subjects, the retired Colonel.)
I'm getting older, fast ... and these articles are terrifying. Yet so necessary. NYTimes, keep putting it out there. Everyone needs to understand the real-real.
And start to press for meaningful change on multiple levels.
At all costs ... work out your own 'best plan.'
Good luck to all!
28
@jazz one. We have death with dignity laws in Colorado. Bob would not be a candidate given the restrictions surrounding it. And given his cognitive ability (or lack of) he couldn’t make the decision anyway.
It’s a horrible situation, that’s for sure.
9
@Nancy
Of course, Nancy, you are absolutely right.
I should have stated more clearly ... not only do we need more death with dignity / right to die laws on the books, we need the parameters of them expanded. Because that window of opportunity can really sneak up on one.
However/for instance, if such a decline is detailed in one's health care documents as a scenario where one would not want to continue, that should be 'allowed' and someone medically certified should be able to 'help' that person out ... literally.
At least that's my personal view.
Best.
14
Marjorie is a saint.
10
Saints should be paid. Handsomely, for their divine intervention.
7
How can I send this woman some money? Seriously.
18
This article gets so much right--my father had a stroke and I took care of him for the next 5 years around the clock--the strange combination of tasks mixed with the constant uncertainty creates a level of anxiety that is impossible to describe. I have to applaud anyone to does this as a career--when your related to the person involved it just sort of happens and you never know far how long (and you do tell yourself, just one more day, week, month, year).
16
My mom has PSP—a rare form of dementia.
She is 73 years old and worked until the age of 70 (she loved her job).
She ate well, did kettlebells until she was 69 and walked 4 miles a day until she was 70.
She is in hospice and is in the end stages.
My mother has been in assisted living facility for 2 years and in addition to the facility we pay $30 an hour, 12 hours a day, 7 days a week.
We are blessed, Mom has savings to last the duration. Physically, the task of her care is overwhelming. I couldn’t do it.
Managing the care is awful. And I realize how lucky I am.
As far as exit strategies...no one plans for this. And dementia/neuro-degeneration does not give warning signs.
By the time she got the diagnosis, she would not be able to end her life.
I hate these comments of “Boomers have exit strategies”. I call Bullpucky!
No one expects the Spanish Inquisition.
28
@Mona
Of course, you're right.
I wrote one of those ... 'have a plan' comments ... knowing full well that it very easily sneaks up on one. and then those options are lost.
I am sorry about your Mom's decline, and I wish you ... some type of peace at some point. You are clearly a caring daughter.
11
@Jazz One
Thank you for your kind comment. I appreciate your honesty.
The worst part of this disease is my Mother never wanted this ending.
4
Something drastically needs to be done with the accessibility, quality, and affordability of nursing homes, because that is where we baby boomers will be heading. Which politician is talking about this. This should be a major political items on the next elections. Stricter regulations, better pay and education levels for some workers are the minimum requirements. This should not be a for profit business; this is people's end of life we are talking about!!
9
Let's be brutal honest about it: This country never values hard labor. Services that involves any menial work? You can be quite certain that you'll be paid like dirt. The not-so-subtle message is: US looooves brain power.
And yet. This country is equally dismissive about hard subjects like STEM and, oh, anything math-related. (I love the MATH message from Andrew Yang, but I'm very worried that it will sink his campaign because americans, when it comes down to it, just hate math, despise nerds, and resent anyone telling them to "Think Harder".)
Along comes Trump to the rescue. That guy hates anyone coming in to US to do menial jobs. He wants to bring the brains in.
Honestly I don't have a problem with Trump's approach. Afterall, that points-based immigration system has been working wonders for countries like Australia and Canada for decades now. It makes total sense to me. BUT, our society also needs menial workers to do the physical labor. It's not any easier than using one's brains, and it should be compensated accordingly as well (perhaps maybe not as much since afterall you don't need to spend 15 years earning a PhD to tackle physics or data science or AI or some such). To me, that's only fair.
9
$20 an hour would be the least a home health care workers should be paid. What a terribly important job. $11, $12 an hour is an insult.
22
By referring to the home aide worker as Marjorie, rather than Ms. Salmon, as is customary style in the Times, you are further demeaning her worth and her status.
20
@Coleen
And why is Bob called Bob?
10
People like Marjorie are a God send.
For those of you having such a person taking care of you elderly and giving you peace of mind be generous.
6
This article makes me sad. Sad to think that one day it may be me. Sad to think that one day I will not be able to afford a "Majorie." Sad to think that one day; after a lifetime of living, I may just forget. Sad to write; I would choose death.
16
Reality Check there is hope for altimers an other nerolgle diseases ,called Basis . Ment to improve persons emune ssytems so body can regenerate better . Concept is we dont get altimers in one day . Comes over period of time so healing process comes in time also. Our health is priceless .
1
Slavery by another name, and their Uncle Toms, too.
8
it's because black women work these jobs. time and time again, we're called takers when we're working for almost half the cost of a white man. the USA owes black people an insane debt. has nothing to do with this woman being a saint, but rather the incredible exploitation of black women.
15
I went through caregiver hell, arranging care, long-distance, for my elderly mother, who died last year. It's easy for people to get angry at low wages paid to caregivers. I don't think anyone would consider this fair. But it's impossible to understand the financial difficulties of paying for home caregivers until you've gone through it. I'm not poor enough to qualify for any kind of financial aid. Yet I'm certainly not wealthy. I'm solidly middle-class. That means I had to paid for my mother's caregivers entirely myself. Going through an agency would have cost me over $1000 just for a weekend. Never mind paying for an entire week. So that would have been, what, over $200,000 per year? So I went through Craigslist, figuring without an agency taking a percentage, the caregiver and I would come out ahead. This involved me vetting each caregiver using online tools. I was lucky enough to find one caregiver for week days. But for weekends? I must have gone through over 30 caregivers, each with a unique set of problems. I found that one caregiver, for instance, had been smoking crack cocaine during her shift (a house cleaner found her pipe). Another was leaving mom alone for hours at a time (a neighbor noticed). Yet another had an unchecked temper, and punched the week-day caregiver in the mouth, knocking out some of her teeth. My mother wanted to age in place, so I helped her to do this. But it was a horrific experience.
24
This article should be mandatory reading. Many people have very unrealistic expectations of end if life care for those with dementia. Marjorie is providing excellent home based care. I very much appreciate that the author stated the costs of this care, which you must add to the hone his children bought for him, the taxes and general cost of living.
A lot of people think that this is the level of care you get at assisted living or senior apartments. It is not. This is nursing home 1:1 level care which almost everyone with dementia will need.
20
"Home health care is the fastest growing major job category in the country, one of the most emotionally and personally demanding, and one of the worst paid."
If "the market" decides the wage then why are care givers paid so low for the amount of work they do? I don't want to say that undocumented immigrant workers may have created this mess, but I will.
3
God bless Marjorie and Bob. I encourage Alzheimer's sufferers -- those who have the capacity -- and their caregivers to explore using the ReCODE (reversing cognitive decline) protocol developed by Dale Bredesen, M.D., author of The End of Alzheimer's. We began using the protocol, the core of which involves fairly basic changes in diet and nutrition, with my dad nine years after he was diagnosed with non-specific dementia and started seeing improvements in his behavior and appearance within two weeks, which is common. Deborah Gordon, M.D., of Ashland, OR, has a DIY version of the protocol on her website. Once there, go to Health Topics, Brain Health, Memory Healing in Alzheimer's.
8
A beautiful article and the bittersweet connections of caring for someone with Alzheimers. Dad's wife andI took care of my father, an accomplished lawyer, during the last 2 years of his life.
No one knows what it is really like until you have actually gone through it yourself. This article so reminds me of the days with Dad. The ups, the downs, the never knowing what kind of "mood" he would be in. The stubbornness, the soiling of the shorts, the night wandering, the hallucinations, the illogical mindsets. And yet there are many times of beautiful connection. Of love expressed. Of laughter. Of stories never heard before, because they were buried deep in the memory banks, and finally surfaced.
I loved caring for my father, but it was one of the most stressful situations I have ever been in. I cared for him out of love and devotion for the man. It was the least I could do for him. I feel blessed to have spent those two years with him before he passed.
I don't know what the solution is. We did have home hospice, covered by Medicaire which was a *huge* help. And eventually, the last 5 days of Dad's life, was in the Hospice House, where he died relatively peacefully. He did not want to go into a facility, but he was still mobile enough and it had gotten to the point where it was too much for Dad's wife and I to care for him. We found a memory care facility we both liked, and were on the waiting list. Luckily Dad passed before he could be admitted.
23
@Radha You are an incredible and caring daughter. You will always know that you did your best for your Dad.
17
I applaud this highly skilled, amazing woman. I also do think our countrymen need to emulate other cultures that our older than ours, some from the countries of Africa, Asia and Latin America who collectively and collaboratively help care for the aging. If we don't have caring, humble expectations that our young will help the old, we may be lost. We don't need a future population of endless fortniters and you tubers. We need to raise caring, smart, patient adults who can care for each other, the old, the young, the ill and the in between. It is not impossible.
11
Alzheimer's and related dementia type illnesses are very very tough on everyone. And the number of new cases each year is a very real issue for our country and care implications, including beyond the impossible economics.
The article states that Medicaid sets the tone. I would offer that this may be specific to New York State.
I also found this line interesting;
"Marjorie is paid out of pocket by Bob’s family — all told, they pay over $75,000 a year for his home care — and on the private market, some aides do make more."
While I don't believe that 100% of this money goes to the caretaker/home health aide -- certainly most of it does. HHA work is mentally tough in my opinion. But even 55K plus room and board is not a bad deal economically ; the social isolation for the HHA as well as the inherent stress/challenge of the memeory care environment is where this becomes a very tough gig to maintain over time.
4
A lot of caregivers work for agencies, you pay the agency $19+ an hour, and the caregiver makes less than minimum wage out of that. After two years, you're given the option to hire and pay the caregiver without paying the company middleman who takes most of her pay, but many ailing elderly people don't make it past that two year mark.
8
Many immigrants are happy and eager to have freedom, safety and a job. And we need them. Unfortunately, if people keep voting republican, we won't have these people to do this important work.
18
Bob's family is lucky. Ms. Salmon may be underpaid but in aggregate her salary is $55k per year, which not many families can afford and puts her square in the middle class.
2
@Kai In aggregate? She's able to eat aggregates for dinner? And drive an aggregate to work, wearing aggregate shoes and dresses?
10
@kenneth
She lives in...... has board and lodge in addition to her wages......
@Paul Is that what's meant by "aggregate"? It used to be called benefits, not part of salary.
1
I'm sorry to see that the tone of many of these letters is a sappy as a piece on 60 Minutes nowadays.
There is no decent pay structure for most home aides with the result that the most dedicated and competent are vastly underpaid yet leaving room for some who others who are less caring and who take advantage of idle time they are of necessity being paid for in the form constant time on their phones texting, emailing, exchanging photos with friends, and you name it. It is of course boring to be present and on constant call even when the patient is quiet or sleeping.
I am going to say again that the foundation of our high US stock market rests primarily on cheap labor and access to cheap money by the elite who obviously control the narrative claiming that anything more equitable means a lower standard of living for all. It is also no wonder that so much foreign hot money loves to call the US financial markets it's home.
12
How fitting for Labor Day to read about these much underappreciated Home Health Carer. As I am aging I often ask myself if I really want to be that much burden on my children, aging sucks totally. Anyway, my opinion is that our politics should either raise SS payroll deductions, or create a general pension plan for every worker to pay in that may cover long term care. Our diabetes/obesity crisis in this country screams for long term care insurance, we really need that. Maybe I will move to Thailand, I read that they have wonderful care homes for foreigners.
13
I worked as a CNA and Home Health Aide for 10 years in two different states. The pay was horrible and there was no health insurance and no paid vacation or paid days off. I loved most of my clients but when I was offered an office job instead I jumped at it. This is the hardest job there is,believe me, and the agencies are in it for the money. They could care less if the aides have any kind of life or even if they get any sleep.You are just a moneymaker for them.
35
@Marge We should eliminate the agencies. Let's face it they're probably not vetting the bad apples and criminal workers. All money should go straight to caregiver. In today's world, a word of mouth network should exist.
5
@JulieB
Believe me when I say I am not pro agency. I could write a longer piece than is this NYTimes article about the abuse of these workers. However, I do know that the agency does vet the care giver. They test them for basic skills so they can differentiate one medication bottle from another. They train the workers, give them a medical exam and drug screening to make sure as best they can that they won't drop dead during their caretaking shift. The agency also contracts with government agencies, schedules, codes and bills, does in service training, supervises the workers, gets a replacement when needed. Some agencies are much better at it than others. Most pay only what they are forced to pay. Most give work shifts like Marjorie gets because Minimum wage in NYC is about 15. dollars an hour and these overnight shifts have dodgeable pay rules. There is much that could be done to improve Nursing Homes and Assisted Living facilities. Many of these retail malls that are abandoned across the country could be easily converted to livable sites with good care. Of course, nobody wants to go to a home, but what is the other choice. We can make it better with better pay for all too. And respite for workers and less money for the CEO and the COO and the CFO etc.
11
Julie-you make some very good points but in my experience, home health care agencies don't vet their workers that well. I worked for four different agencies in two states. I saw aides who were barely literate, lazy, and dishonest. One was even stealing from a client's bank account! Most of the supervising Registered Nurses were no great shakes, either. A couple were really good but that was not the norm.
4
This so immensely larger than a caregiver, the family and the cared for. The relationship.dedication, professionalism of one aide is breathtakingly heart warming. But the shortcomings of a chaotic, insensitive system boil to the top as a dysfunctional stew.
Recently, the NY Times published https://www.nytimes.com/2019/08/29/opinion/sunday/dementia-assisted-living
'The assisted living industry is booming, by tapping into the fantasy that we can all be self-sufficient until we die'
Put these two stories together and the myth of Golden Years for oldsters and families evaporates. The cost is not only dollars which most do not have but an emotional, physical toll on all. Only government can aid in problem of old age need getting greater and greater as baby boomers enter this demographic zone.
Everyone I know has a friend , self or relative going through some form of aging where help is needed or will be. So far as a nation we'd rather give tax cuts than solve a national emergency hitting our citizens that will require thoughtful legislation and huge dollars.I have my doubts either will happen soon. Just look at the latest gun slaughter.
19
He is not a boomer. 1946 is the start, guy was born in 1942. A lot of boomers have exit plans in place.
4
My fellow Americans,
It’s shameful how we treat the elderly and their caretakers: $10 an hour!!??
It’s shameful how we treat mothers and young children: cost of preschool.
It’s shameful how we treat school age children: cost of enrichment.
It’s shameful how we treat the College age group and their families: student debt.
List goes on and on....
ALL the benefits of our economy and culture, are accruing to a smaller and smaller percent.
Winner take all.
26
I refuse to allow myself to end up like Bob. I see absolutely no point in living with dementia and have an exit plan ready. If more people did the same, we wouldn’t need to exploit people to care for our elderly.
24
Reading this I can relate to everything. What struck me, among others, was that workers are paid for only 13 hours. That’s the height of cheating. I have done this type of work where I was allowed to “sleep” and paid such time. But I couldn’t sleep even when the clients slept!
After my shift I had to go home to properly sleep like a normal person. Only in a relaxed atmosphere away from work was I able to really rest, sleep and recuperate.
To say such workers can sleep in this line of work is absolutely cruel mockery. It’s only a way for whoever pays to cheat them out of those five or so hours.
You have to remain half awake. If a fire alarm goes off, you’re responsible. If the client calls in the middle of the night you attend to them! Anybody who says you shouldn't be paid because you’re asleep is being cruel, period!
And in many of these places there may not even be a bed to properly sleep, so workers sleep on the chairs etc. And true, many of these workers are often immigrants, many from Africa. Most Americans come and try the work, and often leave after a week or two, or if they stay they do poorer work. Workers where I worked are so poorly paid, they only make some money through a bit of overtime. So for this lady to do it without overtime seems like she’s being cheated. And the owners of these companies often make a killing! Some of these companies are corporations. They really work and cheat off the backs of workers like this lady.
27
@Freak Shows how little some people in America give a darn about their elderly relatives. There should at least be laws to protect the people who protect our parents, but there are none.
Why is that? This is being driven by greed and the people who don't care enough to stop it.
2
Excellent article. Spare a thought for the millions of family members--often the unmarried daughter or son--who do this work for years, often for no more than a very basic carer's pension (not sure if you have those in America). When the care finishes they not infrequently face nastiness & even litigation from their siblings, not to mention unemployment.
15
No such thing as a carer's pension in the US. We get NOTHING for caring for our parents. If we leave our jobs, we lose our salaries and health benefits. I hired a carer during the day so I could work, but it cost more than my salary, luckily my mother had some savings, tho' the gov't took a big chunk of what was left when she died. (In those days, we still had hefty inheritance and estate taxes, but only the working and middle classes pay them anyway.)
8
Betcha that if, by some weird quirk, home health aides were suddenly white males, this country would find a way to compensate them with a fair wage plus benefits.
28
I have read most of the comments. Bob's disease and the distressingly difficult job of caring for this human being is well described in intimate, almost exhaustive detail. What I wonder is who gave consent for these intimate, personal details of Bob's life to be shared in the NYT? Is Bob legally competent to have given consent? That this information is enmeshed in the story of the beyond difficult work conditions of a home health aide doesn't make it the right thing to do. Nor is the story new. It's simply another opportunity to lament what is; put a period at the end of the sentence. Hit send, and do nothing.
3
@Helen mellett deshaies*** the story says the family gave consent
8
@Helen mellett deshaies
It states in the article that his son and daughter gave permission for the reporter. I would not be surprised if his children, after reading this report, are surprised at the bundle of tasks and intensity of care their father requires and may be shocked at what happens 24/7. Having shared in the care of my Mom (1919-2014) and Dad (1919-2016), I had to learn to sleep with one ear open when i was at home with them, especially after Mommy died and I was coordinating care for Daddy with home health aides and a paid family friend.
5
This woman is phenomenal! I cannot believe there arent labor laws that protect this woman and others like her from working slave labor hours. Why aren’t we subsidizing the care of these very, very sick individuals allowing those who care for them to earn a living wage in a normal 8 hour shift? She can’t even take a 20 minute walk by herself but 4 days a month!
On a separate note, my 100 year old grandmother is currently in the late stages of Alzheimer’s. She’s had Alzheimer’s for at least a decade now. About 8-9 years ago, sh went into 24 hour assisted living after several falls. Around the same time she became very paranoid and went through long phases of violent behavior, physically assaulting medical staff and accusing her caretakers of a variety of “crimes” including “hiding dozens of dead patients” in a nonexistent basement and stealing every single thing she misplaced. She said such awful things to her caretakers that their supervisor would find them crouching in tears outside her room. In the last couple of months, she has become mostly happy and very confused. It’s hard for me to understand the benefits of living such a life.
26
Marjorie represents so many women who migrate to this country, from the Caribbean, in search of a better life for them and their family. My Mother did this, like many of her friends from Trinidad with many co-workers from Jamaica, Grenada, St Vincent, Haiti, etc. True hero’s. Grueling work and sad anyone has to do it for days, weeks, months, years. The good news is, regardless of the buffoon currently occupying 1600 Penn Ave, Marjorie’s son or granddaughter can one day be a doctor, CEO or POTUS. That’s why people like Marjorie do what they do. They represent the best of this country, though not born in this country. Another reason I get so upset when people talk down immigrants. My guess is Frank Trump Sr was probably once cared for by an immigrant.
21
It is disgusting the richest country in the world can’t take care of its senior citizens after they’ve spent a lifetime paying taxes. Other countries have managed it perfectly well.
13
@Scrumper
Actually no, they don't. The UK has an ever larger portion of privately owned, for-profit care homes than the US does (80% in the UK versus 70% in the US).
No matter where they are located, for-profit elder care places are high margin operation businesses that pay their workers dismal wages, provide questionable care and are typically owned by private equity funds.
3
People think that nursing homes are terrible and certainly some are. As a long divorced mother of an only child, I prefer the idea of a nursing home to isolation or worse, destroying my son’s life.
8
Man...been there, done that. I watched my poor Mom fade slowly away...she had a massive stroke and was gone. I cried - because she no longer was angry or confused or scared or lost. I also cried because I felt that old age was such a terrible trick. Not all of us are destined to disappear in that mental fog...but, a huge majority of us are.
14
@A Aycock You have my sympathy. My Dad was in a nursing home with severe Alzheimer's Disease before he died. His mind was gone but his body was strong. On the drive home from visiting him I'd have to pull the car over so I could vomit. It was a horrible period, especially for him.
1
Seems the good Dr could hire someone to at least get some meals cooked/ready.
4
Marjorie is just the sort of immigrant that Trump loves to demonize.
But Marjorie is clearly a far better person than Trump.
31
Do we want to know what’s wrong with the United States of America? This, in microcosm, is what’s wrong,
6
The irony is that the vast majority of these home health aides taking care of aging white right wingers will be the very immigrants they demonize and denounce. Not even their own children want to change their diapers as they give off Fox News rants.
16
Andrew Yang's Freedom Dividened will put $1000 a month in the hands of every American citizen. This will be a big boon to everyone in this article.
#googleandrewyang
8
This is a story of many horrors, from many angles. And it's why I plan to commit suicide before I lose the ability to get it right. And still have the strength to fight off believers in gods and nincompoop meddlers. And strangers who call me by my first name.
9
I have been waiting to see more attention being paid to this industry. I worked in Home Helath back in college. My pay rate was horrible for much of the work I did. There were promises that I would never change a diaper. Fat chance that promise was kept!
7
I was a home health-care worker for several years while also being an adjunct professor. I tried to do an excellent job. But there were issues: one woman (me) alone in a house with a 300 pound man who needs to be showered. How do I safely maneuver him out of bed, into a wheelchair, and into the shower and at the same time make certain that no washcloth or towel makes any contact with the floor. It happened all the time. How can one person keep another safe when he or she is unaware of his own distress and disability? Do you know how difficult it is to change an adult diaper?
Nor did my training prepare me for the abuse and corruption: wealthy people who get the stipend for home health care aides for their elderly but then hire private workers while the home health care worker paid for by the state is asked to do dishes, do the laundry, and avoid the patient. When I told my agency, they said that these people are "good customers".
Home health care workers also have a mountain of documentation they must keep. And beware of using a blue pen when it must be a black pen!
I chose the job because I thought it would help people much more than if I worked as a cashier or as a burgermacher. I quit Home Health Care because there was too much danger involved not only for me but for patients who need elaborate support. When I tried to point out abuses in the system I was told to shut up.
20
God forbid I ever get like this. Just put me out of my misery.
12
I hope the family employing Ms. Salmon gives her a raise, two full days off every week, paid vacation and sick leave, and healthcare. This woman is indeed a saint but she should not have to be! These are deplorable living conditions. Shame on them.
13
This tireless and dedicated but exploited healthcare worker should be paid at least the same $400 a day as was being paid by the patient’s father, the doctor, for substandard nursing home care! What nerve to then charge her extra for room and board. Too bad that tireless migrant hard-workers are referred to as drug dealers and rapists by our esteemed Presidente.
14
Where is the discussion about Margorie's benefits package? Does she get health insurance? Where are her paid days off for personal days and vacation? Why isn't the family bringing in someone to give her more relief? What if she is sick for a week, what happens then? She is taking on all of the responsibility for this man - do they even give her a Christmas bonus? At the very least she deserves a proper bed! The doctor son has got to step up here and do whats right!
21
I was a registered nurse nurse for more than 30 years. I have tremendous respect for nurses aides and the work they do. It requires tremendous physical and emotional strength to care for people that intimately. I always find them to be a special kind of person.
They are grossly underpaid for the work and care they provide.
16
I wish more people had access to (or awareness of) functional medicine investigations in cases such as Mr. Dettmer's. I realize it's not the point of this piece (and agree the remuneration atrocious/unconscionable), but if someone would think to look at food sensitivities/reactions (dairy is a very common culprit in Parkinson's, for example), dysbiosis and nutritional deficits (and/or accumulation of metals), this entire mess might be avoidable.
Or at the very least Marjorie's workload would be less.
Terry Wahls and Dale Bredesen are the trail blazers here (and both have published their experiences), but there is a growing cadre of enlightened clinicians. Searching at the Institute for Functional Medicine is one good way to start. Obviously the earlier one starts the better.
27
Many people in this country do not value their family enough to give up any part of their lives to care for an aging parent or disabled child... its not the government’s job if their is family in the picture. Its a mess because this country’s values are mixed up.
6
I am not trying to make a point here, merely stating a fact. I have volunteered at a local hospice for some time. All of my work is done at the patient’s home or place of residence. The majority of people I see have a caregiver. I have never seen a male, white, or non-immigrant caregiver.
14
There are definitely make caregivers.
1
One thought is to outsource the care of elderly adults to other countries. Instead of someone coming here from their impoverished nation to care for our elderly, why can't we build nursing homes in their country, instead? It would cost us less and it would allow the caregivers to stay in their own country with their loved ones.
I have heard of such facilities, but many more are needed. These countries have a large number of young impoverished people. They need the money, we need the care. There should be a way to make it happen to the benefit of both.
4
@Pat
Interesting idea. It’s sort of like Texans going to Mexico for inexpensive dental work and Americans retiring to Latin American countries because the cost of living is lower. This is a step further that could work out well for some people.
Her job title is known as an Aide, someone with ‘lower skill levels’ and thus not deserving a living pay scale. How covert and convenient for those employing her. The reality is that she is a type of nurse with the kindness and patience of a saint. She also has little opportunity for a life of her own. That alone should demand a middle level salary for her valuable work. The same goes for workers in the agricultural, food production and service industries. Without these people, society would collapse. The idea currently floating around of giving anyone under a certain income level a $1,000 a month is very valid for many reasons. As just one reason, I would love to see this woman and those like her get it. Make the corporate giants pay for it, time to give back.
8
NO ONE gets paid enough to do this kind of care. In a nursing home (as my husband was until his death) he did not get this kind of care. Bob is lucky he has a kind, thoughtful attendant who is taking care of him in his final days.
If you have a loved one in a nursing home, please check on them frequently. One thing which can cause a lot of problems is CDIF. And if the attendants are not trained to recognize it, lots of problems can occur which may be ignored and not treated properly. Marjorie, you are a wonderful, caring person.
8
Quit.
If no one will do the work for the offered wage it will have to be raised.
My sister and I entered this world two years ago when our 86 year old, completely independent and active mother fainted incurred a subdural hematoma. So far, we haven't found an agency that values anything or anyone more than they value greed. We tried private. The necessity of constant coverage made that impossible. This industry could afford wonderful care, excellent pay and, yes, benefits, for caregivers and still make a great profit but, so far, no one has chosen that route. The agencies get what they pay for so, too often, so we send caregivers home . Even though we pay top dollar in our city because the doctors believe that our mom needs 24-7 care, my sister and I closely monitor her care, visit daily, train the caregivers and work with her therapists. It is more than a full-time job for us both. Our mom has thrived and today is almost her former self. We are grateful. We pray that the money does not run out. Something is dreadfully wrong when money trumps care of both a company's employees and clients. When people would rather die by suicide than burden their children, something is terribly wrong. I blame the system for making medical care expensive and life harder. My mom is expected to live for at least 10 more years. She ate well, exercised and walked 3 daily from the day she turned 39. At 88, she has no comorbidities, not even high blood pressure. As much as she has monetarily, we already count the pennies. That's sad.
11
I see a lot of commenting on her compensation. It does appear to be fair but certainly not excessive considering. She has chosen to land lock herself to a lifestyle which would preclude most of us who have a marriage or others to care for. Even doing this part time does knock out other higher paying opportunities though I think of it as playing the long game. I agree another worker or two is better I've seen situations fall apart when they put all their eggs in one basket. It's the part timers or full timers with multiple clients that are truly poorly paid. And yes some people are terrible at this job and end up there methinks because they can't qualify for other jobs. I worked as the only live-in for awhile and when we started to push for some relief for me it took awhile to find someone reliable. The ultimate solution was my client advertised and interviewed people directly then sent them to the agency to be hired.
A million dollars does not go far in a care facility, maybe 10 years just for living there; clothing, footwear, toiletries, incontinence products, wipes, toilet tissue, etc. add to the cost as well. Gotta save for old age!
3
Marjorie is a saint. Most care givers are.
2
My sisters and I were so lucky to have a wonderful caretaker for our parents who both suffered from dementia in their 90s. She (Nino) was and is an angel for sure, just like Marjorie Salmon in this story. We helped out as we could, but she had training and patience and, lucky for us, our parents were cheerful and adorable through it all. We had many good times. But hearing this story and so many others I’ve heard, and recognizing that there is going to be a dire shortage of these willing workers as we boomers age, all I could think about is that we need national service with elder care as one of the service options. Imagine having a team of kind, energetic, strong young people who volunteer to do this angel’s work for their two years. It could change the paradigm, whether they work alongside the professional aides or fill in as needed. It could be a godsend and as a bonus, a way to bridge the divide between old and young. But first we need a change of administration and some people with imagination and courage who believe that national service should be a goal. Long way off, I’m sure, but worth considering.
11
I believe a lot of women, daughters and wives, are selflessly in this role without the pay. I understand that family is family, but will be good to also have the unpaid work of many women in the sandwich generation acknowledged as well.
And of course, this home aide worker is a saint, and should get paid more if the family can afford it.
19
Another bit of evidence of American cruelty. It is tragic that corporate lawyers, administrators, and hedge fund managers can make so much money and be so entirely useless even to the point of being harmful, while any number of people who are critical to society, such as those in waste management, nurses, teachers, caregivers, and social workers, are all severely underpaid.
We need those people--and society would suffer or halt if they were absent--and yet in America we compensate them not with good wages and benefits, but with the immaterial satisfaction of knowing that your job actually matters--you helped a patient live with dignity, taught a student, made it so that bankers don't have to use filthy restrooms, so why should you need good pay? But people can't live off of good feelings. And when you can't afford your medical care, a home, or your children's education, those good feelings soon evaporate. Employers and governments can also hold those people hostage because of their empathy, knowing that if people like Marjorie "struck" for better wages, those like Bob would suffer. Likewise for teachers and nurses. It's a cruel, cruel nation. We can bail out financiers who destroyed the economy and cut taxes for the rich and their heirs, but let those who actually have a heart suffer.
34
If Bob were in a memory care unit, how much would that cost? Perhaps Marjorie Salmon's compensation should reflect the cost being avoided?
14
@Peg Graham
In my area, a place in a memory care facility is about $6.5k/month ($78k/year), and that’s with any add on costs for extra services. Even though this is close to what the family is paying (but not necessarily what she’s making), she should be able to charge more because he’s getting far more individualized care.
5
I feel deeply for Marjorie, who is extraordinarily giving and patient, but is exhausted, exploited and completely missing out on being with her own family and having any life of her own.
At the same time, I also feel for Bob. Yes, he has Alzheimer's, but does this mean his life has to bereft of music? Of flowers? Could he not be taken on short stroll or be outside, pushed in a wheelchair? Does he like dogs or cats? If his family members visited daily, or even a couple of times a week, is there any response at all?
My father died from Alzheimer's, and I know this disease intimately. My mother took care of him at home until it became impossible (he was doing things such as randomly turning on the the stove and lighting matches), at which point we located a modestly priced nursing home for him--nothing fancy--within reasonable driving distance of my mother.
Alzheimer's victims live in a shuttered world, but who's to say how much they know? Once he was in the home, my mother often brought him music, which he listened to through earbuds, or sat there reading out loud to him. She also visited my father daily even though he never did more than stare blankly into the distance.
One time we persuaded our mother to take a 3-day break. When she returned, my father wept copiously as soon as he saw her walk through the door. She never took another trip until after he died.
13
Yes if you can support a caregiver the persons life can be so much fuller.
One of my clients received art therapy and music therapy.
1
The caregivers with whom I work are encouraged to take their clients to the park when they are able.
@Emile 'modestly priced' nursing home, really?
3
Meanwhile, the Wall Street rentiers make millions off other people's money .. they create little, earning their wealth off something that already exits, and at the expense of others. People like Marjorie are the one's who support others and are the heart of social solidarity. Their due .. is long overdue.
15
We are blessed to have someone like Marjorie for my mom, who is in her 90s with moderate dementia. Mom would have been institutionalized and likely long passed without our caregiver. Now Mom has a new close friend and a decent quality of life. We pay around $12/hour for 90 hours a week including 3 overnights, with our family doing the rest. That's north of $50K pay annually in a low cost area, which is a good deal for everyone. We're happy we can afford it. Given Mom's condition, the situation couldn't be any better.
7
Also
Please don’t assume the people who are receiving care don’t still enjoy their lives.
Many of you indicate you don’t want to live like that -well you don’t know until you get there and in all my years as a gerontologist I have only known two people who wanted to die. While many admitted they were ready, they were happy to wake up each day.
You don’t know how you will feel at 85 or 90 when you are 6o or less.
Humans adjust as life goes on and are happy at old age usually if they were happy when they were younger.
There is also much growth going into old age and acceptance along with joy and peace
10
@Melissa. Bob is not enjoying his life.
1
I think he could benefit from increased socialization. Maybe a trip to the park with his family or caregiver ? Walks outdoors?
Music he likes?
Art therapy (if affordable)or pet therapy visits?
Accessible gardening?
Many prospects if some support can be provided. A geriatric care manager can be a resource.
He might also enjoy adult day care.
1
The big question left out of this article is whether or not the caregiver here is religious. Judging from the caregivers I have met before in my life, I would bet hundred dollar bills to donut holes that she is. Absent a religious motivation, or religious values and direction, there are not going to be many people who would take on this kind of work. With religious values and motivation, the work becomes service to God as well as to a person. With the serious national decline in religiosity and involvement in faith communities, we're in for tough sledding ahead.
4
@O'Brien One does not need to belong to any particular faith tradition to care for one's fellow human. Goodness comes in many varieties.
23
@O'Brien From what I've seen lately, being religious has nothing to do with kindness, morality or a sense of humanity and decency; and I resent those who feel they're entitled to some moral high ground because they call themselves religious.
13
Agree with Rebecca. I am a recovering Catholic but I still live a life of service (also in healthcare). Watch out for that high horse.
10
Working as an aging life care professional I have great respect for the people who do this work. The best among them do usually consider their work a calling and have the knowledge that their clients are not “170 pound toddlers “ rather adults who may have lost their executive functioning skills and memory yet are still experienced Adults.
It helps greatly if the aides are given additional tools such as offering one or two choices and simple suggestions.
Of most value are the goals of offering choices in a respectful way to a person who is in his or her own home. Kindness must prevail.
Even a person who suffers from moderate dementia still has great perception.
As to pay, The caregivers with whom I work earn at least $200 for 24 hour shifts.
They give up a great deal but in return are greatly appreciated.
4
wait, @Melissa Mayernik -- so that is $8 an hour for a 24 hr shift?
how can we sustain this. Horrible.
4
@Melissa Mayernik minimum wage isn’t enough for 24 hours.
2
I don’t disagree that they deserve more but this is more than agencies pay
1
You can judge a country by how they treat their most needy. The elderly and poor are so abandoned or mistreated or uncompensated in this story that it exposes all the flaws on how the country is run.
16
"Marjorie set out a bowl of Cheerios, a plate of strawberry and apricot slices in a star pattern..." Okay, that pretty much sets the 'Marjorie Salmon as Caregiver Hero' tone for my money.
I imagine that many view such work as Ms. Salmon's as menial or last resort, but I would beg to differ. At Ms. Salmon's level, the profound intuition, the sophisticated response tactics, and the near inhuman endurance involved make caregiving an honorable and estimable profession. If only the pay were equivalent to the skills and fortitude required.
Shame on this inequity.
28
My partner has a home health aide 4 hours a week. She, like Marjorie, is certified as a nursing aide now working as a home health aide. Like Marjorie, she is a phenomenal aide. The more education an aide has, the better they are. They are more knowledgeable about a patient's condition and are quicker to recognize changes. We have to start paying these people better as well as giving them more education. They are taking care of our elderly. It's so much better and cheaper to keep patients in their home. The difference in this instance is $240 A day. Their rate can be increased and money is still saved. Nursing homes are not pleasant. It's difficult for patients to get attention. Why not try and keep even more people home with 24 hour care and pay them what they're worth.
17
What do you pay your health care worker?
3
When my life gets to the point where I am merely existing, not living, I will do my family and myself a huge favor and take enough medication to go to sleep and never wake up.
This should be a legal option nationwide, not just for those with terminal illnesses in the few states that allow it. Don't I have the right to choose the end of my life on my own terms? No, I don't, so I will take it into my own hands. (I suspect this is why the suicide rate is rising among older adults.)
Some may wish to live for a hundred years. I've already done at least a hundred years of living in my 60-some years and it's been wonderful. Having spent time in nursing homes recovering from injuries and surgeries, I know that is not an option. It's hideous and I will never be able to do it. Nor do I want my children to be burdened with my care.
Death with dignity is all I want.
41
@CountryGirl
You are making one big assumption, which is that you'll be cognizant enough to realize when you've gotten to that point. Don't count on it..
13
Nobody should have to be on call 24 hours a day, 7 days a week. Nobody. No matter what the wage. This family needs to provide relief for Margaret. And I agree - she is a saint!
30
For some, that's the only work They can get. Many of the people who serve the rich (and your Rich if you cat afford a 24 hour nurse), are destitute! No other choices for employment!
Pay her a better wage for doing your job as an in inheriter!
2
So now that this ongoing, chronic problem has been so acknowledged in the NYTIMES,... Just what are we going to do about it? How is it going to be addressed in this America of ours? It should be a top priority for the National, State and Local governments to completely acknowledge and deal with appropriately in order to accomplish something and not just put it off to the vast Medical Industrial Complex....
3
Seeing older friends and relatives who have used home care aides in Florida for part time, full time and then 24 hour care, I have not seen a 24 hour/ 7 days a week service by one care giver. This has to be a most unusual situation and in terms of percentage of home health care services, it may not occur in a small number of cases. If it is end of life care, 24 hour care may be quite necessary, but many elders without resources try to make it with just 8 hour a day care and not every day. Right now one of my friends cannot get any one to stay with her during this hurricane and she is in the immediate zone, not evacuation zone, but the caregiver could not and would not stay with her in an emergency situation. Bonded home health care is more expensive, and many of the home health care aides will start working from the agency and then work separately from the agency for less money, but they end with more money because the agency cut is so much. A note of caution however, even if a home health care aide starts off very well for months, once the bonding is no longer in effect, stuff can happen. A relative who did have the help of a home health care aide with a bonded agency and then changed the status with the same home health care aide to under the table sort of speak, ended up with credit cards and a car loan co-signed with the home health care aide unbeknown to the the family to the tune of 60K. The home health care aide intercepted the mail and notices of nonpayment.
4
I was the weekend manager/advocate for a women's shelter for quite a few years, which of course required that I slept there. I was paid for every hour I was there, awake or asleep. That was only right. If the phone rang in the night, I was up; if a client was having a bad time, I was up. Why wouldn't these hard-working individuals entrusted with the care of loved ones receive the same?
14
Anyone who is willing to do this job is a dedicated, kind, and hardworking person. Not only are jobs like these of utmost importance but, without them elderly people who need help due to any physical or mental illness could end up hurting themselves or worse dying since they can no longer care for themselves. It is absurd that the amazing people who take on this important role don't even get paid close to their worth. This definitely needs to change immediately. My grandma had dementia and without the help of her aids I couldn't imagine what her last few years would have been like.
7
This system needs to be improved. Why not have a team of 3 people rotate so that the caretakers can have time for themselves? I would consider any time they’re in a patient’s home to be paid time, even when they’re sleeping at night.
10
Shift hours get paid more by the hour than live-in caregivers who are considered to receive the benefit of room and board. A live-in caregiver should be able to sleep at night without getting up more than twice.
But,
Most of all the change of caregivers is often extremely upsetting to a person with dementia.
The fewer caregivers that can manage provides the most stable environment.
2
When Americans finally learn, and admit, that the U.S. government spends money into existence, and the creator of a sovereign fiat currency can never go bankrupt as long as the currency it creates is based on the real resources of the country, then we will see some change. A federal job guarantee could support the creation of millions of jobs in healthcare, elder care, and education. The people doing those jobs would earn a living wage and spend their earnings to support the economy. We don't have to live on the backs of hard-working low-income people. We are choosing to do so.
11
So this man lives in a semi-vegetative state, often out of touch with reality, at least to the degree of being able to realize the care he is receiving, never mind being grateful. I know a woman not quite at that stage yet, but requiring just about full time "assistance". She is with it enough to realize that the simplest pleasure has gone out of life, and she has asked for assisted dying. This is legal where she lives after a protocol of about a month. how many people would make this choice if it were available to them? One would apparently need to make it while still in a fairly clear mental state without dementia. I see the self-selected exit as a viable option for a large segment of the aged, and this would make the entire aging "problem" easier for society to deal with. Clearly, the numbers of the incapable are about to rise dramatically -solutions have to be found, and I think it goes well beyond pay issues just on the basis of numbers who can no longer look after themselves. I know this leaves a big question- just when is a life no longer worth living? For many, I feel that they can prearrange this for themselves while still rational.
36
@Stephen Bowyer
Sounds good in theory but in practice not sure how that would work. Years ago, my father said that was how he was going to go. Currently at 96, in good health, but with some decline, he now says he'll live a few more decades and takes $100s of supplements and does all he can to prolong his life. His main regret now is that the immortality that some quacks profess hasn't materialized for him.
Thank goodness someone is shedding light on the crisis with direct care workers and the agencies around the world. These employees are responsible for so much and get paid very little even when they have an agency or company behind them. The turnover rate is awful and when you can to go aldi or target and make the same amount it sends a message that the caretaking job is underappreciated and not worth peoples time. You cant expect great care for these wages and the waiting lists are only getting longer and more complicated. the employees who take care of vulnerable, physically and mentally disabled adults deserve a living wage and actually much more. Pay these people more! Taking care of another human no matter what their need, is the difficult, ask any mother, father, caregiver whos been there.
15
@Willyumz
Just who is supposed to pay these people more, and how would that work? Medicare? The children of these elderly who aren't making much money themselves?
Many people can't even afford to pay the legal minimum wage to care for their elderly parents, so they leave their own minimum wage jobs to care for their elderly parents and live off of welfare.
There is no easy solution to this problem. Yes, these people should be paid more, along with those who care for children. But until middle class wages start going up and families can live on one income, it isn't going to happen.
8
The persons from agencies usually make Less than private caregivers who charge their own fees.
The bulk of the money may go to an agency who pays the caregiver less due to their own expenses
Some agencies function as registries instead
1
@Willyumz-these healthcare workers need a Union!!!
4
This article made me feel ill. $160 a day (ok, with room and board) for all that she does? The patient’s son is a doctor, and I bet he makes more than that in one hour.
First, she needs to be paid more. Second, she should have an afternoon off in the middle of the week, not just one day on the weekends.
If the family truly appreciates her, they need to support her even if it’s only for selfish reasons - where would they be if she has a nervous or physical breakdown?
38
@SYJ ",,, I bet he makes more than that in one hour." One more reason why you shouldn't be a gambler either.
4
After reading this article I have two main thoughts. The wonderful dedication of people doing these jobs are incredible. I sure hope they are treated as well as they seem to treat others. The other thought is that I'm very happy my parents live in Sweden. I have seen my grandparents spend time with home aids and also in special living facilities and the care is very good and, as you would expect, free of any charges. The only thing they do is charge the elders who have some money, but still very modestly. When my grandmother was in one of those facilities, my mother told me that she has nothing to fear about getting old and possibly ending up in such a facility. Rather different from how I think most people in the U.S. feel. Let's home people in the U.S. soon wake up to the fact that indeed things can be done differently and better than what they now have.
13
@Anders
While your parents may have excellent care, there are many people in Sweden who do not. An estimated 13%-16% of people in care homes are abused. While that may be better than other countries, it is still unacceptable.
"Excellent care" often is simply defined as doing no demonstrable harm, not quality of life. Many of these people are kept sedated for long periods of time so as to not cause any trouble, and minimize the work these over-burdened aides have to do.
3
This woman is a saint. That we have people like this amongst us, with their incredible patience and generosity of spirit, humbles me. The family is incredibly lucky to have her.
1701
@Leigh -- Just what I was going to say. This woman is a saint. And I'm sure there are not enough saints to go around. So we must do something else to care for these people. I am glad that his family can afford to provide this man with a home and a full-time caregiver. But many cannot. Gosh, what can we do??
96
@Leigh She’s not a saint, though. She’s a human being who has an extraordinarily difficult job and deserves to be well compensated for it. Framing these workers as saints with endless patience and generosity of spirit is condescending. They are hard workers. They are doing extremely important jobs. They are easily exploited due to a variety of factors. What can we do to make sure these workers get the compensation they deserve?
761
@JS
EXACTLY. Marjorie is a human being and deserves a living wage and a shot at better opportunity like anyone else. The entire caregiving industry cannot rest on antiquated notions of "saintliness" that do not help these workers obtain the higher salaries, health and retirement benefits, job-training / educational opportunities, and protection from exploitation that the rest of us take for granted.
My profession of nursing turned against the sexist, patronizing portrayals of nurses as "angels" and "saints" in the 1970's and organized collectively to argue for better wages, benefits, and hours. The California Nurses Association, to which I belong, is a powerful union that regularly negotiates for better pay, benefits, and working conditions. That has made nursing a high-paying, well-respected, and attractive profession to the millions of people who vie to enter our profession every year. None of that would be possible if nurses had allowed themselves to be continually oppressed by the condescension of others who devalue the work that we do as some kind of maternal "labor of love."
Being a professional, ethical caregiver means that you care for ALL patients assigned to you--not just those you "love."
296
No one wants to get old.
This article hits home and is a window into the lives of many these days. My sibilings and I have gone through this with my dad and are going through it now with my mom. She's living with me now but is moving into a nice assisted living facility next month about 15 minutes from my house and it looks like a good solution for everyone.
As someone who's been there, here's my advice:
* plan
* save
* ask for help early
* plan
* downsize early
* plan
* save
* plan
* take a hike at the Grand Canyon before things get too bad (that's my husband's plan)
* make sure your aides get big bonuses, especially at the end
Of course, your situtation may differ and things are still hard when you plan, but imagine how much worse it could have been.
202
@Eileen Kennedy
It's all very easy to tell people to save and plan. The problem is that most people do not make enough money to begin with and therefore can't save.
A decent wage for round the clock care is minimum $55K/year. Who can afford that, if they themselves are making that average salary per year, and have bills themselves?
It's significantly easier to do in multi-children households, where the share of costs can be spread. But it's downright impossible if you're an only child, let alone an only child with a kid of your own.
41
No
We all want to live!
That means getting old!
4
@Eileen Kennedy most importantly... live in a single floor home and build a support network.
11
This is a euphemism for slavery. If they made prisoners do this job it would be a chain gang.
Four days on alternating with three days off.
One day per month mandatory full duty for first degree family members.
The most selfish twist to the process is that some readers are requesting extending social security eligibility to age 67. The life expectancy many of HHA is below average. In essence the HHA is subsidizing the family members who don't care for this gentleman because they will on average live 5-10 years longer.
14
There is an answer. Many politicians are crowing about Medicare for all but none mentions LTC. It should be a Medicare benefit, paid for by a payroll deduction throughout one's working life. My wife suffered a stroke six 6 yrs ago, is a quad and requires 24/7 nursing care. She has 4 caregivers. Day shift is 12 hrs, night is 8 hrs, 6-8AM and 8-10PM is my job, but never once did I have to do anything. Day Shift gets 3 hrs OT. During the day they get 2 hrs rest time with no duties. Night is mostly sleep. They do not do household chores, go shopping, run errands or order supplies. Their only job is caring for her, not me. They are CNA and have children and of the 140/hrs per week none works more than 60 hrs. Their job includes transfers from bed to Wheelchair or to the Shower Buddy. They also do PT, OT, and Speech therapy. They use our other modalities like a Standing Frame to keep her leg muscles from atrophying so she can assist with transfers and an Omnicycle to preserve her arm and leg muscles. All meals are taken in the dining room. They prepare breakfast and lunch, I do dinner. Transfers demand technique and strength and most female CGs over 55 cannot do it. If I had to do it, I wouldn't last a day.(I'm 79) In the six years, she has only been hospitalized once for five days because of a pneumonia.
The cost is $150k/yr, deductible.
The demand is exploding. It must be included in Medicare at 80%, as a part B benefit. We have a team. As an MD I'm the leader.
8
No way this is sustainable. A small step up from slavery. Bobs son is a doc. He can do more himself or pay a decent wage. As a society we want all the seriously disabled to live forever, but we are now willing to pay the price or do the work ourselves to sustain them.
A variation on not in my backyard. Either become willing to be responsible ourselves or decide that for the Bobs of the world much less medical care that focuses only on comfort is better. Those 6 pills and aggressive medical have to go
12
My mom had Alzheimer's for 12 years. At first I put her in a facility while she was more mobile and more dangerous to herself. She hated it. When she became less mobile we brought her back to her home. I was incredibly lucky to have two women that took care of her. I had hired them privately. They would alternate 3 to 4 day shifts. I never once got a call saying they couldn't come to work, or worse yet, just not show up. The job was endless monotony. Washing, changing, cooking, over and over. They were both amazing and I am forever grateful to them. Both were immigrants.
It cost $100,000 (yes, I paid them to sleep) a year to take care of her and when she died my family gave them a bonuses. This is only $11 an hour and they were worth so much more. I was super lucky that my mom had been a astute self made business women in the 50/60's and that she could afford this level of care.
I want to give a shout out to Marjorie. You are an amazing person. I wish you and your family all the best.
20
I've seen this so many times in my building. All women from Guyana, Haiti, Jamaica... They move into my elderly neighbors apartments, sleeping on sofas and cots in the living room. These women not only work 24 hour days cooking, cleaning and bathing the elderly. They are the last friend & companion many will know. It takes it's toll on them, many speak of leaving the work and becoming something better "a crossing guard" "a cashier" it never happens. because there is always another person sick down the hall. This is America.
15
A relative of mine is a MAGA fan. Her mother is elderly and needs care. My relative is against illegal immigration. She is very grateful to a neighbor who is helping out with her mother. However, she is unsure if the neighbor is in the country legally. She continues to pay the woman for caring for her mom. what does this mean? Illegal immigrants are bad unless it benefits me.
34
@Ellen
No, Ellen, all we are saying is that, if there is a need (and clearly there is one), then allow people in with Visas (and dignity). Not as law breakers from the get go.
People are living too long. WE need support for those of us who want to take our own lives before we get to this state.
Once Trump elimanates immigrants, further cuts Medicaid and Medicare and limits healthcare access people like Bob will be walking the streets.
21
People taking care of people should be a well paying job, as should be those of teachers, police, fire, and medical first responders. Why are entertainment people paid ridiculously inflated amounts? Why are sports people paid ridiculous amounts? The answer is in our priorities. What is really important and who is vital to our health and welfare? What kind of a nation and world are we living in?
15
This is what it’s like taking care of someone with dementia. Not like the well-dressed people staring blissfully into space in the commercials from the Alzheimer’s Foundation. Soon there won’t be enough immigrant women to care for our aging, thanks to Trump and the GOP.
18
Just as an FYI to the writer, in order to be a social worker in New York State you need to obtain a Master’s degree, which is a two year full time degree, then pass a licensing exam. Once you’ve become a Social Worker you need to take Continuing Education courses in order to renew the license every three years.
4
I agree the health aides are not working as social workers. I think this remark came from the writer but it should not be overlooked. Marjorie is doing her best with the skills she has but she is not functioning as a social worker.
1
How about all the people that do this because it’s their spouse or loved one... without the pay!
15
I did that work myself for over a year for my wife, who became wheelchair bound and demented due to an underlying medical condition which has now been treated. She is still disabled but is better. I was wildly sleep deprived, emotionally spent, physically exhausted, and in desperate circumstances. Thank God for my dearest friends, who got me help when I was really in crisis. I was still working full time plus part time work. My wife’s daughters almost entirely ignored her. We now have four private aides paid for by my wife’s long term care insurance plus our own funds. They are amazing. They work 12 hour shifts each. They are well paid and get a yearly bonus. I hope we are taking good care of them.
3
These are high stress, low-paying jobs traditionally taken by entry level, or older workers like this woman here, this woman who is to be valued and commended.
What is our world going to be like, when there are no entry-level workers here, due to this corrupt and short-sighted President and his administration?
These are jobs that immigrants take, and work their way up- LVN, RN, Dr- and we should be glad they want to come here and do these jobs and contribute to our society.
I wonder how all these people who are voting out their future caregivers will feel when there is no one there to help them. It's already a problem. It will get much worse.
9
I am not sure why Margery was only getting a few days off a month.
Why not hire a relief aide and give her a 5 day work week? Or a 4 day work week, since her days are so long?
17
No body is getting younger and all of them are going to need younger people to help them before they going away forever. When you are young you have no feelings about the old people. This is happening in America? The greatest country on earth?
3
Who can afford to retire? Much less retire with dementia.$75K for cheap help,.. most people don't make $75K total... So lets be realistic, even if I'm pulling down $100K per year I can't afford $75K on mom...so, in that light, $10 per hour plus room and board looks good, especially considering how many folks work for $10 per hour at walmart with no room and board....just sayin', that's today's wages,like it or not....The baby boomers are going to bring this issue to the forefront, and rather quickly. If we continue to choose to spend our monies on the military and incarceration we will not be able to provide the care and dignity that our elders deserve. We might as well go full 'Dickensian' and reopen the lunatic asylums of yesteryear. Or better still lets just throw granma into jail since that's where most of mental health seems to be taken care of. We can do better, and we know how.....Now let's do it, together!
2
When my mother, at 78, was diagnosed with congestive heart failure and was given a pacemaker, she needed occasional care. I called Visiting Nurse Service and they sent a lovely, but highly uneducated and barely literate young woman of 25 who had a 3 year old son.
Felicia was kind, gentle, sweet, caring, attentive, and loving.
She and her boy lived in a one room SRO (single mom, of course) and she always had child care issues. One day, I told her to just bring him with her -- he'd love my mom, and she, he.
It was the best thing I ever did. They eventually both moved into Mom's apartment -- it was a two bedroom -- he got my old room, and Felicia's problem and my mother's went away. The boy was in a great school district through Junior High,
I gave her generous weekly stipend -- but she lived rent free, and had no real expenses -- I covered all their food, utilities, transportation, and clothing for her and her son.
For us, the live-in worked -- but you have to have someone you trust, and love.
Mom died in 2008. Felicia remains a dear friend, her son is out of school now, and everyone is happy.
22
The home-health care provider gets meager wages because she is not respected, her work is not respected, and the aged and disabled vulnerable populations served are not respected. This entire population subset is discarded by the elite 1%. The vulnerable are made invisible, with the exception of an occasional dribble in the news. Who cared for David Koch in his decline over the last year. Of course! He had a cadre of the best professional nurses a super-billionaire elitist could buy. There is a story here about health care in the US. But the same problem exists with child care in this country. Children are not loved by forced delivery proponents but for them becoming consumers. Child care is unaffordable by workers who earn below-poverty line wages who work two+ jobs with no benefits. The class divide illustrates how the 1% get nannies, exclusive KG & private schools, while low-wage workers get the scraps of education that Betsy DeVos throws their way as she dismantles public schools & steals ed funds for her private/charter schools. Meanwhile, institutions of power are stealthily building walls to protect their resources & wealth. Djt & Cabinet see the aged and vulnerable as "Takers," the term introduced by Mitt Romney & reinforced by Steve Bannon, Stephen Miller, and herr djt. Class & race....
7
Market in the tristate are for freelancers is 2k or more, or $20 or more hr. They are significantly underpaying her. Typically senior caregivers make much more per hour than babysitters.
5
The family is taking advantage of her.
14
There needs to come a point when the elderly need to be humanely let go so they can move into the next stage of life.
10
"A home health aide for a 77-year-old man serves as social worker, diaper changer, dietitian, day planner, warden and more — all at dismal wages."
I disagree.
My hat is off to Ms. Salmon. What she does is beyond what most of us could ever do. I hope that our family is able to find someone like her when the time comes for our mother.
But dismal wages?
Ms. Salmon, when you pencil it out, makes $60,000 a year, plus room and board. Yes, she has to be available 24/7 and can't leave the house, and she gets just 3-4 days off each month. That said, the wages are dismal only if you divide her $160/day pay by 24. Put another way, she doesn't get paid like a firefighter, but her services are akin and every bit as valuable--and the ridiculousness of how firefighters who are overwhelmingly white and male get paid and scheduled might be a great topic for the NYT 1619 project or whatever it's called: A lot of minorities and women would give their eyeteeth for those jobs, but somehow never qualify.
This said, Salmon is doing better, on an annual if not hourly basis, than a lot of folks. She appears to have gifts for which she is compensated--folks in her field who do not have such gifts are not as highly compensated. I'm guessing she doesn't want for clients and that there is not a gun to her head when compensation is calculated. And so the headline seems a stretch.
Otherwise, good story.
4
@August West Given that she cannot leave the house and has to be available 24/7, why would you not divide her pay by 24?
13
It’s the industry model which includes work time
EAting time
Breaks
Sleep (not getting up more than 2x)
But she is giving her life
All day
All night
So she deserves the money
1
We pay college coaches millions, sport stars millions and millions, capitalist cheaters million or sometimes bilions, but we still won't pay the people who really matter what they need to survive.
Just give them the circus - that was the philosophy of the Romans - that didn't work out so well.
8
The family could start by purchasing this hard working woman a proper bed to sleep on. In her work, sleep is precious and fleeting, a good bed would be a lovely gesture. When was the last time you had a good night’s sleep on a foldout couch?
29
I haven’t read all the comments, and just read the paper version of this article, so perhaps this has observation has already been made. The author refers to an “agency” that sent Marjorie and Trevor. Aides will often work for service companies that take a percentage of the aide’s pay, rendering an already low hourly wage even lower. Is that the case here? The author should have provided some info on that aspect of domestic care as well.
6
This getting old business is for the birds.
6
Marjorie is a jewel and deserves more. Not too many would do this job even if the pay were better. Our society is too arrogant and we have no respect for the elderly.
2
God Bless Marjorie and all workers like her!
5
Anyone doing Majorie's job should be paid a great deal more than what she's earning. As our population ages this problem will only get worse. Families are going to need to live closer to each other.
4
@Regina. She is a saint, but not alone. She is only one of thousands of direct care workers who don't get paid enough or respected enough. They are workers in western pa are looking at $11.00 hour for taking care vulnerable, disabled, adults and that's not ok. You are right, no matter what, we are all getting older and will need support one day.
3
Blame this on the Republicans and GOP. They are all for this ladies employers and for the right to work states that let any employer fire a person for no good reason. They want the workers to struggle while they live high and luxuriously. Many Red states the GOP still have only 1.75 and 5.25 minimum wage and it is not right. The NYT’s recently had an article about how the Red states have very low minimum wages.
5
Twenty years ago I received an award along with John Kennedy, Jr. His was for support of a New York-based advocacy agency to help these wonderful, dedicated home health workers both earn a decent living for their incredibly demanding jobs and to further educate them for better positions.
I do not know what has become of that, but I hope it has been very successful. As Boomers age out, so much more care will be necessary. The sandwich generation is ill-equipped to deal with both ends of the rainbow, and both sizes of diapers, and still earn a living.
Even if children start saving money now, and manage to accumulate enough of a late-life-support nest egg, there may be no one to pay to take care of them. This country needs a social reset like many European countries have done - they need to establish family and life priorities and not simply focus on money, as Trump would do. Disgusting thought.
181
To those who condemn Bob's doctor son- - Marjorie was sent by an agency and earns $160/day. The agency would be receiving money from him also and likely would be providing Marjorie with benefits. So the son would be paying much more then $160/day. Plus the costs associated with the house. While Bob probably has SS checks arriving, his son may well be spending $6k each month. No indication in the article how care is provided those days when Marjorie is off.
Yet many condemned the doctor for not doing more. Can't imagine what readers would be saying if it were a doctor daughter.
23
@kathy I think the family is doing a great job providing for him. This is hard on all families either way you look at it. Tragic to have Dementia/Alzheimer.
1
@kathy I would be saying the very same thing.
1
This is why we need a graduated increase to a $15/hr. minimum wage. These companies will NEVER pay their workers a halfway decent wage unless it's the law.
10
@SCZ And even if laws are passed, you know the big boys will try to find ways around them.
1
At 78, performing the same work as Marjorie to care for my 96 year old wheelchair-bound husband who suffers dementia, I found the time to read this on paper. I'll have little more today.
As TS Eliot said, "I grow old, I grow old." The luckiest may wear their trousers rolled, but too many of us decline as Bob has. He is profoundly fortunate to have a son who can afford to pay (as little as it is) for an aide as caring and skilled as Marjorie. My hats off to her, and those who labor as she does. I know whereof I speak.
How can we as Americans do better by our aged population?
32
As a caregiver to my 85 year old mother, who lucky for me and my siblings still has her cognitive abilities. However, as people age they become unsteady on their feet, they become unable to go to the store, shop, cook, clean, etc. even driving becomes a serious issue, and it’s not that she’s lost her ability to drive, too much is happening to fast and their brains get overwhelmed which is why seniors that do drive drive slowly. My mother willingly gave up driving, but still just the loss of independence even though for all intents and purpose she rarely drove, it was just the ability to go if she wanted to that gave her a sense of independence. If your aging parent takes medications, many medications side effects is drowsiness, combine that with age induced cognitive impairment, and the fact that elderly are unsteady on their feet, many drugs exacerbate those conditions.
My mom is able to take care of her personal needs, I do the cooking, shopping, taking care of the house, but still it’s a challenge for me, I can’t imagine doing it for a living. Seniors face many challenges of aging, and the one thing I’ve learned, is how selfish this society is towards seniors, who’s only apparent mistake was living too long. People on the other side of the healthcare debate, need to understand that if they live they will grow old, if they live long enough they will be old. How horrible is must feel to be at the mercy of a faceless uncaring entity that the government has become.
16
I went through this with my mom. And I’m beginning to go through it again with my Dad.
I know all too well how difficult this is for all involved.
The cost can be overwhelming to families that are simply unprepared for years of this kind of level of care. Our medical system is truly broken when it comes to this.
We ended up having to pay out of pocket for 6 years, an immigrant that was willing to put in the long hours and the hard work of dealing with my moms progressive alzheimer disease.
Our family tried in every way to share our gratitude with our moms caretaker, but it was still hard, for all of us.
The affordable alternative choice we had, was humanly impossible for us to contemplate, a low end miserable nursery home.
I’m grateful every day that we had someone that was caring and that was willing to accept our low paying job to help my mom and now dad to get to the other side.
Families should receive financial assistance from our government, if they choose to take on the responsibility of taking care of their elderly parents. thus any financial support we might have received, could have gone “directly” to the caregivers wage.
18
Thank you for this article, to Marjorie and the Dettmer family for sharing this personal and often painful story. I am also thankful for the many thoughtful posts and personal stories as I am trying to understand this issue and help my mother make decisions for her aging. I would recommend the book Being Mortal by Atul Gwande as a way to proactively engage with end of life decisions. However, even if we have planned ahead and know what we want for aging family members and ourselves, our social systems do not provide a range of options or solutions especially for those without substantial financial resources.
13
I hope Bob’s father the doctor gives Marjorie some very big tips. Like regularly and often. I think $160 a week for such critical care is a travesty. These brave, wonderful home health aides should be paid much more.
Let a doctor take home $160 for a 13 hour day and an aide receive a doctors wages. Then we’ll have some justice and mercy in this world.
8
@613 The article says $160/day, not $160 per week, and if she works 30 days per month it is $57,600 annually, counting weekends, as this article points out she pretty much works Monday to Sunday. I'm not saying it's great, but it's more than I've ever made.
8
@Susan Look at this from a logical view. She makes about $10/hour. If she worked a 40 hour week instead of 70, she's be paid $20,000/ year.
1
@613 the article says that Marjorie gets $160 a day , not a week
1
This conversation is extremely urgent. We are facing a national crisis of older adults and inadequate resources and no one is talking about it. Thank you, NYTimes, for bringing this discussion forward.
17
Thank you for a window on this area of the job economy. I have worked as a PCA for over 25 years part time and full time on occasion. I have made friends and lost dear clients. The family members that hang in there and keep their significantly disabled son or daughter at home are truly special people. Many have seen their loved ones disabled by a TBI (usually due to a drunk driver) or been visited by the scourge of MS or any number of other chronic illnesses. Every day is learning how to navigate the health care system while the client is trying to make heads or tails of their sudden reduction in circumstance. And yes you as a worker have to negotiate with every personality imaginable to stay on task including some people who have absolutely no excuse for behaving so badly. No administration has ever in my time Republican or Democrat sought to truly improve this sad state of affairs. In my environment it's an exception if you're paid more than $10/hr and of course no mileage etc. When the government only pays $16 or $17/hr to an agency their margin ends up being quite thin. And you forgot to mention few agencies pay for the yearly required TB test or periodic CPR/First Aid certification.
7
Marjorie is a saint, and Bob's son, the "doctor" needs to spend two days doing what Marjorie does for HIS dad. Then he should decide that the only decent course of action is to dramatically increase her pay.
25
My father is very forgetful and requires help to take his 4x daily medications. I moved him into an assisted living facility (brand new) and pay for nursing supervision of his medications. I still have to constantly monitor whether or not it actually happens. The best parts of his week are the 4 days his favorite personal caregiver comes and spends with him. They go to lunch and other activities and she can talk to him about anything that he needs. She likes to do his laundry although his facility takes care of it. She is sweet, smart, resourceful and a loving person who looks upon patient care as a calling. She works independently. I pay her $20/hr and a $50 bonus each week. She is off today on a paid holiday. She is a skilled professional and earns every cent.
My dad and I are far from wealthy but she worth every cent. I feel like she brings a little sunshine with her each day she works.
47
Thank you for your fair treatment.
1
As a volunteer tax preparer, I prepared a return for 2018 for a care giver similar to Marjorie - she earned $65,000 but the employer (family of the elderly person) gave her a 1099 rather than a W-2. So I had to inform her that she owed over $12000 in federal income taxes. She had no idea that the family had not paid FICA or withheld income taxes for her. Awful.
35
But that money goes into her Social Security earnings account so she can have a payout later in life. That is how our system works here.
3
But for many there is no "later in life." Many home-care people need the money now.
And, let's be realistic, those federal income taxes are never coming back !
7
80 percent of that money that she paid in ‘taxes’ was FICA taxes which are returned to her.
3
Let's do a little math. If the doctor pays $75,000 and Marjorie gets paid $160 a day for 26 days a month (assuming one day off a week?) she is collecting roughly $50,000 for a job that is all day long. Not a reasonable wage in my opinion. But lost in the article is that the agency collects the difference or $25,000.
Why no outrage that an agency that does nothing but file paper work and run payroll gets that much? We paid for a caregiver through an agency and the hourly fee was $23 to the agency and they paid the caregiver $15. Same 1/3 commission. And it's not for a few months to reimburse an agency for its overhead and business development; it's every month forever. That is part of the problem.
40
@Cigi. The solution may be for the caregiver to directly market his/her service and avoid the 1/3 commission. It may also be necessary for people looking for a caregiver to seek out individuals vs agencies.
8
I think the agencies are skimming too much. I would bet these caregivers would not easily find the persons in need without the intermediating agency. I am not an advocate of an agency, however I would assume if you use an agency you avoid 1. Payroll tax issues , 2. Embezzlement/fraud occurrences. 3. They are insured/ bonded for employee torts. So, if you pay an agency you do get peace of mind on these counts as well as the agency has back-up caregivers and can rotate staff for respite and worker unavailability.
8
@Suburban Cowboy
It sounds like the agencies provide a value and in a competitive market place there is usually a competitive price based on that value.
1
Most of these workers are immigrants. They take the jobs the rest of us would rather not.
We are lucky enough to have gradually figured out how to pay our aides much more than the going rate, but we are also lucky enough to be able to afford that.
We also need better "right to die" laws. My mother has been on hospice twice, but is now in her 10th year of being a frustrated machine for excreting and surviving. We do what we can, but the wonderful vital woman she once was is trapped and should have had a choice.
Home health aides are amazing. We are so lucky to have them.
27
Just to be clear, she did have a living will and is on DNR. It's not simple to execute these orders the way things are. Once she had her stroke she couldn't reach or find her chosen dose to end it. We did not feel able to help with that. It's fraught, and illegal. And a DNR is also perplexing in the face of the various emergencies that arise, and changing medical staff and institutional rules.
7
@Susan Anderson "We did not feel able to help with that." WE ?
@kenneth
Me and my father (now age 95, this was 10 years ago), didn't want to go to court and possibly to jail for assisted suicide. Besides, if you think about it, really think about it, you'll realize deciding someone else's fate when they are incompetent to act themselves is impossible, or nearly so. And the doctors and health care system are not well set up for compassionate release of patients; their job is to keep people alive, sometimes to the extreme harm of the patient.
7
Why are these labor conditions legal? The irony of this article on labor day!
The entire system is broken. "Aging in place" is code for abandoning our elderly to lives of isolation and in many cases abuse. We need much more creative solutions: Group homes that are actual homes, not institutions, where groups of family and friends can age together and pool resources. REAL support for families that take in their elder relatives into their own homes (which seems like the best option for many people). And how about finding ways to address the rising urban housing crisis with this issue? We have elderly people who own homes but are isolated and alone, and we have younger folks who need homes....hmmm
13
Don’t worry if trump, Miller and Moscow Mitch get their way all of these heroic people will be deported, and no longer have to endure these work conditions.
1
Shameful that pay is so low for home health care aides. Likewise, shameful that pay is so low for daycare workers and pre-school teachers and aides. The low pay for teachers from K-12 is well-known. What do all of these job categories and the workers within them have in common? They are women. There is still the idea, conclusion that this is all “women’s work,” so it is considered to be worth “less.”
At the same time, we haven’t figured out - purposely? - how to *value* this work.
But since it was and is “women’s work,” it stays there, relatively unexamined and walked around.
And since at either end of the life spectrum, it is work that was done “in the house, in the family,” how to value that?
The cost and prices are are not low. Or even moderate.
But it’s time to come to grips with it. People doing this work - home health care, pre-school, daycare - need to be trained, should be valued for their training and the work they do.
Let’s start working on it. Time is wasting.
19
@Berkeley Bee
Everybody thinks the pay is too low and everybody think they can’t afford it. So what’s your solution?
3
Until there's a cure for dementia/Alzheimer's I think all of us who are now of sound mind would agree that we don't want to live like this. The caretaker is a saint and isn't paid enough for what she does. And most families can't afford the kind of care she gives. We must have the ability to end our lives before we are a burden to our families.
53
@Lisanne
Amen! Baby boomers (myself included) don't just want to 'age in place', millions of us want to be able to say 'goodbye' when we no longer have any quality of life; our society is not prepared for 72 million boomers aging; who wants to be exploiting another human being just to keep me/us alive--zero quality of life! And home healthcare workers need to unionize; $10.00 an hour is an insult. Something must be done!
9
@Lisanne,
With some people, they don’t want to deal with a parent that is suffering from Alzheimer’s or Dementia, it’s hard to see your parent, a person that since childhood you’ve seen as the strongest person on the planet, for boys their dads were the strongest on the block, for girls they emulated their mothers (at least that’s how I remember it).
For others it’s a burden, a hassle, after all they have a life, at least that’s how my siblings feel. I’m the care giver to my 85 year old mother, lucky for me, she’s just come to a point that she needs someone there to cook, clean, mow the yard, etc. still it’s hard work you watch the person you’re caring for slowly weaken, become frail, and that alone is excruciating. To watch someone you love very much slowly grow old, and die. Years ago, when I was 17 my aunt was dying of lung cancer, on her last day, I went into the hospital, with a pack of cigarettes, and two bottles of beer, my aunt was never a big drinker but she liked a cold beer and her L&M smokes. I went in sat down and opened her a beer, opened a pack of smokes, lit one for her, and me (I was a smoker then in the late 1970s, who wasn’t). We sat there talking about life, loss, over our cigarettes and beer, and I told her how much I loved her, and how I will always remember her, and how much death sucked. She said, “you will surely grow old and die”, but not for a long time, she died with me holding her hand.
175
@James As people become more frail and have more needs, sometimes it's not possible for families to take care of relatives alone. My mother tried incredibly hard to keep my grandmother at home, but after a debilitating stroke, she couldn't do it alone. Hiring a full time caregiver would have eaten up my grandmother's life long savings in a few years. My mom opted for an assisted living center and then spent ALL day there almost every day because they were always short staffed and she didn't trust the care given by strangers. We have a very small family so there weren't a bunch of people to help spread out care. And the work paid caregivers do is HARD and is not paid well. It is a big, sad problem. I have no solution to it.
2
Two things
They are letting the aide sleep on a mattress on a sofa. The patient ‘s son is a doctor . Does anyone think this is an acceptable way to treat a live home health care aide?
In addition, a case like this could be handled better in shifts with aides coming in for a day shift and one for a night shift and alternating which one worked days and which one worked nights. I am a great believer in aging in place where I think patients get better care than in nursing homes provided of course that the caregivers and family members execute the care correctly. It is unfair and nearly unreasonable to put the entire burden on one person 24/7 especially in a case like this where the patient really needs constant care.
41
Here is the problem with the 12 hours on and 12 hours off. Each person needs a home to live in. In this existing scenario Ms Salmon saves on paying $1500 rent and a car and commuting to Mr Dettmer’s home. So, that expense would be multiplied by the TWO persons, raising the expense by at least $3000 per month.
9
Totally agree. They are underpaying her and not committed to her happiness. They will have turnover or end up with someone awful.
2
@Suburban Cowboy- She has her own apartment in Brooklyn. She is saving on commuting, but she needs a place to keep her belongings.
6
It’s cruel to require or even ask one person to do this 24/7. It can feel like a hopeless, endless situation.
Spouses and children usually care for their loved ones for free while trying to keep their own lives afloat. How can we possibly do all of this with all of our other responsibilities?
Our family has some resources to pay for outside care @ $24-25/hour (paid to the agency that carries the insurance and workers comp etc.) and still the amount of time spent maintaining another’s life is exhausting. And our loved one was savvy enough and compensated enough during their working years to purchase long term care insurance which will kick in well after the point when our loved one needed care.
My heart goes out to all of the families dealing with this.
18
@Tracy
Most long term care insurance policies kick in after 90 days of care. Is that not the case with your loved one?
1
I would have quit my job to care for my mother, but in the US that entails the loss of my health insurance.
1
And most insurance policies require using a Medicare licensed agency for the caregiver.
1
A friend of mine was recently telling me about his hip replacement aftercare in NY. He broke down in tears talking about the incredible kindness and how he was never denied his dignity. He was so grateful. He was being cared for by immigrants. Personally I think we are all here to inspire each other to be the best that human beings can be. When someone lives that, we need to watch out for them, give them our respect and support. Our culture is too much about power, and leaves little room for shows of respect for and reasonable financial support of the helpers among us. So thank you for showing respect with this article. I am in awe of Marjorie. At the same time I know that my opinion changes nothing. At the very least we need to vote for those who recognize the need to prevent the continued exploitation of, and deportation of those who provide care for the country’s elderly. Who was it that said you judge a culture by how well they take care of the children and the elderly? Those determined to make high profits off the needs of immigrant children, asylum seekers and the elderly need to have their ears boxed. We need some new NFP models of care.
32
@Susan "We need some new...." Agreed. Have you told your congressional reps about this -- or just us?
Here is the reality. Middle class people hire attorneys to show them how to qualify for state aid and shield their assets for their children. The wealthy can afford to pay for themselves what is needed. If you taxed the wealthy at upwards of 90% there are not enough wealthy to make a difference..There is not enough money in the system to pay for the middle class and poor unless the middle class agrees to a very substantial tax increase or a reduction in aid. Ultimately that does not work . Nothing works to support the elderly absent an expanding population of young people to spread the burden. Yet today we have the opposite: a growing older population, who with medical advances, now have chronic conditions which formerly were terminal balanced against a falling birthrate.That is a brick wall which will not crack as people die behind it
11
This is a tough article to read. I just turned 81 and I am a caregiver for my husband. He has two children. We do have long term care and still paying for it, but who knows how that will play out. I have no children and I am thinking if my husband should pass first who would I turn to when I need care.
I have thought of assisted suicide, if I got to be as bad off as Bob. I think every US citizen should have this right along with a woman's right to end her pregnancy, even if the fetus is compromised. That right is slowly going away. If the Right To Life Group can be successful at ending Roe vs Wade their next phase would be end of life issues. To them all life is sacred no matter the quality. This should be a personal decision made by the individual and not the state. The beginning of life and the end of life has become every busybody's business. This will not lead to a good outcome for any of us.
59
@SKwriter You said it. Exactly.
1
@SKwriter "If the Right To Life Group can be successful ..."
Who the heck told them they have a"right" to MY life in the first place?
1
It's shameful how little these workers are paid. I used to be a Direct Care Professional, and even though I didn't live in, I worked all days with intellectually disabled adults, with all levels of disabilities and each with his or her own level of communications skills and quirks. These are serious jobs, requiring a lot of different skills, and they should be paid a lot better than they are. I think this is partly because no special training is required, which is also an error.
18
I have worked as an older adult advocate for many years. It is shameful that Medicaid dollars do not pay for this. If you get into a skilled nursing home, around $12K per month in Massachusetts, MassHealth (our Medicaid) will pay the bill. Why not pay far less money to keep someone at home and also pay home health aides a much more decent wage--who do not work around the clock because they share the job?
We tax payers pay for the system thrown at us. We should have a choice about where we live and we all save money when the elder is far happier in a familiar environment.
19
You are leaving out the simple and obvious elephant in the room. To have your nursing home or such paid by Medicaid you must be indigent. In other words, first you must use all your income streams, your saving and the value of your house before you can have Uncle Sam step in to pay your assisted living facility bill.
1
@Suburban Cowboy The Medicaid rules could allow for a lien on the property and some allowance of cash and assets. Not everyone in nursing home care is indigent; for example, there are spousal impoverishment protections. And during a spend down period, one can pre-pay for funeral costs, pay for clothes, furniture, specialized medical equipment--rather than paying it all to a nursing home. I am not talking about AL care, either. I do not believe it is a good use of resources. Uncle Sam NEVER pays for assisted living. It is not skilled care covered by Medicare or Medicaid. It is private pay. Occasionally, an AL facility has room for one or two low-income residents, but it is mostly a highly profitable business. A skilled nursing home or rest home is a better choice.
I have a progressive form of multiple sclerosis and my husband of 37 yrs is my full-time caregiver. I'm in a wheelchair but still able to take care of my own showering and transferring on and off the toilet, but some mornings I wake up and wonder what I won't be able to do today that I could do yesterday. We both had to retire early and move to a smaller community. I have an income till I turn 65, which will be soon. I retired early because of this illness but continued to get a good portion of my income. My husband retired early and has no income. I wish family members who are also caregivers had some govt assistance.
25
Check the laws in your state: you may be able to get this benefit
This topic needs a series of articles. Actually, I have seen four different articles in related terms in NYT in the past several days. No disparate, but not seemingly coordinated either. Whereas, the amazing variety, sensibility and depth of the comments is exponential adding to the article at hand. There is so much more to be known and reported about this part of society and the industry that addresses it. There are solutions out there, but pointing at Medicare which cannot afford the current and growing medical matters in economic/demographic terms is not where the answers will be found. Raising pay rates for these invaluable caregivers is a noble nod. However, if already the vast majority of elderly, especially those who are alone and have income based on Social Security, how can there be more money coming out of their pockets when they are spending all they have and depleting their assets to boot ? It is wonderful to see their kids contribute financially when they cannot/will not do the actual work. However, there too, the kids have mortgages, have their own kids’ college to consider and their own retirement to provide for later. They cannot afford to bankrupt themselves in the elderly care financial model which we witness today.
20
@Suburban Cowboy
You try doing this job. I have worked at a home for developmentally disabled adults, and it is poorly paid and very emotionally draining.It was and is a not for profit, privately owned organization, and the owner treated the employees rather poorly. i wonder what her income was for operating this organization. The job was much more difficult than was highly paid positions that I have had.
4
@Suburban Cowboy
In the old old days there wasn't such a need for privacy and it wasn't unusual to see multi-generational homes. So elders were with young family members today you don't see that much. Expectations as to how one should live are upscale today. My single friend took care of her elderly father with a few aides in her home and it wasn't easy.
4
I have been doing it off and on for my two elderly parents for several years. Primary child, in the house, dawn-to-dusk duties. That is why I am reading every comment and talking to us all.
6
I have no children. No one to care for me if/when I become like Bob. I'm also poor, so won't be able to afford any help. My only hope is that I will die before I get to Bob's stage. It's the best I can hope for. Maybe I could get to a nursing home, because I'd qualify for Medicaid, but on the whole dying is the preferred alternative. I've been hoarding medications for a while, but I don't know if they'll last for the 20 years or so I might need them to (I'm only 67 now and in perfect health). I have a friend who saved the fentanyl patches that were left over from when she took care of her mom during her cancer. She's hoping they'll last until she needs them. This is the reality of growing old and being poor in America.
94
If you are poor, you can get Medicaid in a nursing home. If you are not poor, you try to hold out at home because it can be cheaper.
2
@J.
Hahaha, I have no children and my mom had dementia, I like the solution in the cupboard.
1
The family is fortunate to have someone with the dedication, kindness, intelligence, and care of Marjorie. Thank you for sharing this story. Bob is extraordinarily fortunate for this time with he, needed for his very survival. Does Marjorie will age alongside him, amazing care he receives and she not so much.,
The toll it is taking on her, without clear gains in her own well being other than survival is a strong concern. With better wages, more time off to exercise and be with her friends and family, more concern for her health, it would be a more equally beneficial story.
It is possible his difficult elderly time of life might be better shared with multiple residents in accountable and well monitored--video--home situations with more resources for both caregiver and elder. It might help the boredom that both caregiver and elder face.
The hours, pay, benefits need to be raised, along with training, positive feedback, and consideration of the worker's life.
The caregiver's health and well being needs to be a much better in these situations, with allowance for healthcare benefits, good wages, sleep, physical activity, social, improving or at least maintaining for the worker.
Perhaps the generation that has gone through the inconsistent care of assisted living and nursing homes for those with dementia and multiple frailties, can create a new model of better care with caregivers' financial, medical, social, and physical needs met as well.
17
Yes, it’s a travesty. Whatever the cost, this needs to be fixed.
18
@Pat Rockford
Whatever the cost? Is that really an idea?
1
@Bk2 - Do you have a better idea? If so, share it.
@Lindsay K Yeah. The employee gets paid the agreed upon wage with their employer or finds work getting paid somewhere else
My heart goes out to these women that gives so much to help others but and not paid what they deserve.
I see the women all the time at the supermarkets and at doctor's office pushing wheel chairs with their patients and they both seem to get along nicely. They do not have a badge on their clothes indicating RN because they are not but they provide the care that their 'charges' requires. Maybe some day they will get the recognition they deserve.
26
I just want to publicly thank Joan and Michaelina who cared for our mother in her final years. They had our trust, bringing years of experience to our mother's needs. They have moved on, appropriately, but they remain our heroes. At the end, my mother required full-time assistance. Joan and Michaelina worked 3 to 4 days and off. They had their own lives and lived them. This was possible because they worked through an agency (Home Instead), which would mediate any issues and ensure coverage if the caregivers' needed to be away. That would be jarring to our mother but it was right. To be clear, my brother, my husband, and I were 100 percent involved: we were on the phone all the time with both Joan and Michaelina, as well as my mother. We stayed with mother---but since we did not attend to her intimate needs, we could focus on our own relationships to each other and family business. We gave the time and attention needed without having to ensure her safety and personal hygiene. The article doesn't say but our experience suggests that the children still have to manage the home, pay bills, schedule and attend doctors' visits, and attend to home maintenance. A housecleaner must still be employed. In NYC, anyway, only an RN can pour pills, so although the caretaker can dispense them, someone else has to pour them. We were lucky that we could afford Home Instead, with whom we worked for several years, after we could no longer provide care ourselves.
22
It should surprise no one that care done by women in the so called domestic sphere is not valued. It never has been, despite the fact that care work allows for so much other productivity to happen. This man might have children who could take over his care, but because they can hire a professional like Marjorie, they can continue working at their jobs. Marjorie's work, and the work done mostly by women and especially women of color and immigrants, isn't valued. Period. It's not a mystery why.
34
People like Marjorie are doing a tremendous job. Whatever the amount paid to them is definitely less but the service rendered is priceless. They need to take care of themselves since they tend to ignore their health.
I don’t know whether they have any families of their own. If so it becomes extremely difficult to even visit their families once in a day if they indulge in full time job depending upon the health condition of the patient. Under the circumstances it becomes extremely difficult to even imagine what’s going on in the minds of their children due to continuous absence.
10
I once lived down the hall from an elderly woman who was bedridden and required 24/7 care. According to the other neighbors, she had fallen and the fall had impacted her cognitively, causing her to deteriorate to the point that she had no idea who anyone was and could no longer care for herself. Her daughter, who worked but came by regularly, had arranged for two caregivers, because her mother would have had to go to a nursing home otherwise.
If I remember correctly, the caregivers did 12-hour shifts: one was there during the day, the other was there at night. I often passed the departing/arriving aide in the hall when I was on my way to work in the mornings. I don’t know what responsibilities the aides had when they weren’t caring for my elderly neighbor, but I know they did the laundry, just like Marjorie in this article: either one of the aides or the woman’s daughter were in the laundry room on a regular basis doing the wash.
The aides themselves were nice and, despite their hard work, always cheerful. Like Marjorie, they were both women. One or both may have been immigrants. They did the hard work of caring with dignity for an immobile old woman who sometimes yelled in her sleep (my bedroom shared a wall with hers, so I heard her). We need to pay these people more - and respect them more - for the emotionally and physically taxing work they do. Thank you to all the Marjories. They deserve so much more than they’re getting.
43
People like Marjorie are experts and should be paid a six-figure salary - they actually add value to society, unlike many financial institutions and other profiteers who come to mind.
36
The comments are over a wide range of topics, from personal liberty to the household economics of the person in need, the person's family, the caregiver, and the caregiver's family.
The comments also expression compassion for all involved and a sincere appreciation of the impact on all the lives.
The need for personal care in the performance of daily living needs and hygiene during life is growing. The need for long term care over age 65 and the duration of it has reached a very high probability; the need is not always filled adequately.
It is a public health crisis that requires a societal solution.
17
Majorie is a hero for helping this family cope with disabilities beyond their control. However, she should be paid better for her services and I hope that happens for her in the future.
39
She’s def under paid and under market rates.
@Jessica D Yes and a one would think a doctor's family could afford to pay her better.
1
I cared for my Dad in his final months in home hospice. My mom was in the house but did not have the physical stamina or mindset to address Dad’s needs. We were fortunate to have Medicare provide a bit of aid and a nurse would come to check him every few days also. But when the end was nigh, the days and nights were laborious. Now my Mom needs someone to live with her although she is virtually independent again after recovering from hip surgery. Stairs and bathing are the dangerous parts. Couple that with a mildly stubborn perspective of how things should work despite the changes in her health is a challenge to manage each day. No pay, of course. Fundamental to success is constant reporting, feedback and buy-in from all siblings so that we make unified, transparent recommendation and joint decisions to act in Mom’s best interest. Although she is of sound yet forgetful mind, so she does have final authority on matters.
16
@Suburban Cowboy
I nodded reading your comment. This is my exact situation, from the home hospice for dad until he passed last year, to the elderly mother with health issues who cannot live alone. I left my job and moved back to Boston to care for them. People say to me, "What an angel you are!" as if I'm doing something exceptional. No. My parents took care of me when I was young, and now it's my turn. I think there are many of us.
19
I get the same positive encouragement from siblings, neighbors and her friends. And, let’s be frank, she is saving a ton of money with me in the house. We do have a home aide who stops in thrice weekly for four hours to give us some rotation and she has a woman to do a few things with and talk etc. It concerns dependence v. independence, yet it also concerns avoiding isolation and creating stimulation so life matters.
3
The poignancy of this story moved me to tears. Marjorie's dedication to her job in nothing short of heroic. She combines care and compassion with very hard work to make sure this person is as comfortable as possible. My dad had a care giver provided by the VA during his last 2 years. She came to my parents home during the week. As a WW2 vet with a 100% service related disability rating he was eligible. Due to a botched procedure 5 years before he had lost his left leg above the knee at age 84, and was confined to a wheelchair. Other than that, he was fine. Mentally sharp, sense of humor intact...clear as a bell. She referred to my dad as her "easy one". Her other clients, she advised, were in much worse shape and their needs much more challenging. My dad was very modest and fiercely independent. So, she taught my dad to transfer from his wheelchair to his shower chair and bathe on his own...(saving her back no doubt in the process I'm sure). She assisted him with dressing, did his laundry, changed his bed, and made his breakfast, and sat with him while he read the SF Chronicle and swapped stories about the Bay Area. We, as a family, remain deeply indebted to her for helping make my dad's final years comfortable.
46
Did I miss something here? Who owns "Helping Hands"? What do they charge Medicare/Medicaid hourly for Bob's care? What other services are they suppose to be supplying but Marjorie is doing instead (light housekeeping, social working, nursing visits) ? Are they owned by an LLC? Part of a hedge fund? Please investigate. There is probably more to this story than meets the eyes.
34
Pretty sure this isn't evidence of a conspiracy or some dark state in the world of Home Care.
Having enlisted agencies for care of family members, companies like Helping Hands assist with placement of caregivers including screening, background checks, etc. I wouldn't want to have taken that on. They also provide backup if the caregiver needs a day off or alternate caregivers if one isn't working out. In my experience, caregivers are not housekeepers or trained to dispense medication but they do make sure the environment is clean/safe and clients take their medications as needed.
As a business, I had no qualms about Helping Hands or others being entitled to charge for their services.
4
@Pat Owen
Medicaid and Medicare have limits on what is paid for services.
@Pat Owen Medicare does not pay for non-skilled services which is what Marjorie is technically providing. As per the article, Bob's son is private paying, so Medicaid isn't involved either. What percentage of the agency fees aren't specifically outlined, but I would say they are significant. One of the fastest growing franchises out there is elder care and it can be quite lucrative, but is not an easy business to run.
3
My mother requires round-the-clock care, much like the gentleman in this article. My father and requires little help, but he is not able to care for my mother. I live in NY, they live in FL.
I have arranged for two aides on 12-hour shifts. They work 7 days a week and can go a month without taking a day off. They each work 84 hours a week - that is two full time jobs!
The cost is about $160,000 a year. 1/3 is paid by Long Term Care Insurance, another 1/3 by Medicaid, and the last 1/3 out-of-pocket, which is quickly draining their savings. We are so grateful they have LTC Insurance, but the paperwork involved to file a claim and to apply for Medicaid was unbelievably tedious and time consuming. Had I not been here to do it for them, their benefits would have gone unclaimed.
A Nursing Home won't work for my mom. She doesn't have the presence of mind to press a button and wait for an aide to come to assist her to the bathroom. She would wind up on the floor. She really needs to be watched like a hawk, and one-on-one care is the only way to do it.
The women who work for us are amazing! And underpaid. But where can the better pay come from? Families simply cannot afford to pay more than they already are! Our society is fundamentally flawed. I wish my parents never moved away, I wish my mom didn't have the emergency surgery that saved her life a year ago. I wish we had universal health care and elder care. This is all just too much to bare.
75
@Garden girl
And what when all savings are gone; And how do you manage if you do nor have coverage nor160.00 $ a year to pay for these so very valuable services;
And what will happen as more of us will live longer,
Mr Trump we cannot wait until "we will see what happens"
And we cant even go back were we came from, since it is right here.
10
@Max Lewy. These are the nightmares that keep my up every night — what will we do when we run out of money. Did I mention there is a tropical storm that is about to hit? Their building will provide meals during a power outage for the residents, but not the independent aides! I am stunned. The Dining Room Director didn’t return my call... not so stunned about that. I would gladly PAY for those meals, but nope, won’t do it.
6
@Garden girl Should read, "My father is 91 -years-old and requires little help..." Wish comments were editable!
1
When the Invisible Hand designs our eldercare, taking everyone's desire to make money or whatever and putting them together to get what is by definition the optimum result, this is what we get. The alternative is social engineering, and we cant have that.
When the home health care aides get Alzheimer's themselves, who takes care of them?
11
Friend of mine, actor who compromised his chances in the theatre when he upstaged Michael Redgrave in a play years ago and was confined thereafter to leaving off "two fers"in local businesses on UES, which paid well and was a job which union found for him,always said,"Don't get old, man!"Is not that 1 of the lessons of this article?Hats off to the home health care worker, but heart goes out to the patient who was hit with a dual tragedy: Alzheimer's and Parkinson's.If we r ever to find a cure for these afflictions, it will come from "Big Pharma,"the pharmaceutical industry which spends billions each year on research. Consider the advances in helping to cure AIDS, just 1 example. Under a socialized system of medicine, there would be no incentive to look for cures to serious diseases.Those who rail, inveigh against the industry often fail to take this into account.
1
@Alexander Harrison
Most of the basic research that led to those breakthroughs was funded by the government. And it's really sad that you think that the profit motive is the only reason that we would try and reduce human suffering.
16
@MarcS: Socialism is not a good motivator for creativity, an incentive to find cures for serious diseases which are still with us. To make a sweeping generalization that most breakthroughs have been funded by the government requires reliable statistics, fact patterns. When u say that breakthroughs , or most of them have been made possible by the government, what r ur sources?And the government is the tax payer!Taking the argument to a higher level, would Stalin's policies of collective farms, and overreaching government control of 1's life have been possible, lasted as long as it did were it not for Beria's secret police? Socialism through terror, if u believe the historian Wisdom, his surname!Once u take the profit motive,"l'appat du gain"out of the equation, creativity comes to a halt. Look at Guinea Conakry under Sekou Toure. I served there under his successor,15 years ago. Potentially 1 of the richest countries on the continent, it became under the socialist Toure 1 of the poorest of the poor African nations.
While you’re at it maybe have a moment’s sympathy for family member care givers who are on duty 24/7 and never have a day off. Most families do not have $160/day to pay for live-in care and the government offers no help. We are paid nothing and no laws limit our burden. However, we can be charged with elder abuse if we fall short.
59
Thank you for this insightful article and thank you, Bob's son and family, for allowing the Times to write it.
My Grandmother had years of 24-hour care after suffering a stroke. Her sister, who had saved all of her life, left her $250,000 when she died, which paid for it. My mother managed two trained caregivers who worked 24-hour shifts, taking turns working. Sometimes they could not come to work. Fortunately, this care enabled her to live out her life as she wished. What would have been the options without that money?
How long can Bob's son continue paying $75,000 a year for this excellent care? And (in response to some comments): how can an incontinent adult attend day care and special programs for such impaired seniors? I have no answers but appreciate the many resources recommended by several readers and plan to learn more about this crisis.
17
Day care programs have trained staff that can change the incontinent products many participants need to wear.
1
Heartbreaking. At the very least we need tax-funded long term care at living wages for everyone who needs it, and the caregivers work three to a person so no one works more than 35 hours a week. Talk about job creation!
13
I became a little teary-eyes reading this. What an impossible situation. Marjorie and all professionals like her are amazing.
I took care of my mother (dementia) for only ten months. It was NOT like taking care of a baby. That is a terrible comparison.
Often it was a question of getting her up to go to the bathroom, OR *maybe* getting five hours of sleep and doing three extra hours of laundry the next morning because she wet the bed. She went through a phase (about two months) where she got up four times every night. I thought I would lose my mind from exhaustion. It felt like I had two people in my head all the time, as I was thinking and acting for her every need. I had quit my job to take care of her in the prime of my working life. I came close to being broke. I had no health insurance during this time. I barely got out of the house. Just getting out to grocery shop was such a relief that I would come close to crying in the store. Other family members helped, sometimes, but argued and judged and criticized. No one understands what caregivers go through. I would say the experience permanently damaged my relationship with other family members.
I admire people who say it was an honor to take care of their parents. For me, it was miserable. I loved my mom very much, but it was *miserable*. I would not wish it on anyone.
Dear, dear Marjorie, I hope you live long and well, pass gently in your sleep, and that your children will prosper unto the end of days.
101
J. Thank you for writing this honest comment. I had a similar experience with my mother. I’m an only child, no family to help, and had a wonderful relationship with my mother. Once Parkinson’s, dementia and mini-strokes hit, the body was just a husk. My smart, sweet mother was gone. The exhaustion, and depression of never having a free moment, dealing with incontinence and my mother’s understandable depression of her own was overwhelming. When she died, it was a relief for both of us.
Our society *must* find a solution to this. Nobody should deal with this 24/7, paid or not.
20
I only did the duties that you described for my Mother for the last 3 weeks of her life. She wanted no one than me around her even though there were 3 other siblings who lived nearby. I live around 2500 miles away. All day she slept and all night she wanted me there so she could talk.
Three hours every other day away to just go to Costco for a slice pf pizza was heaven.
But I did it because she was my Mom and I loved her.
10
@Ann Herendeen Hi Ann -- thank you for your kind response. I'm sorry you went through all of that and I sympathize deeply. I'm glad you had such a loving relationship with your mother, and I hope that your life has bounced back and that you've recovered (it really does feel like a question of "recovery." I'm four years out and still processing, but doing so much better.) I will say that the caretaking changed my life and added some meaningful perspectives, but it's cold comfort, really. You're right, we need a system-based solution to this problem. I don't think we'll get one.
If I hadn't had significant savings, if I had had a family of my own, if my mother hadn't been financially stable, if I had had an accident while uninsured, if I didn't have the skill set to recover professionally from this, if I hadn't inherited a significant amount of money from my mom to get me back on my feet... the rest of my life would have been unrecognizable. I cannot imagine how I would have survived if I had been in a lower income bracket to begin with, or any of the factors I had mentioned were different.
Something needs to give here. The system needs an overhaul. We could do better. I'm not sure how to make that happen.
Keep well, Ann. Thanks for the comment.
12
It seems like everyone’s answer is that they should get paid more. And if the person can’t afford than “the government” should. These care workers do agree to the pay and also have the ability to quit. For some of them it may be the best wages available and they often get free room and board (or its part of the pay). Government regulation or subsidies isn’t always the answer.
8
@Bk2
It is not 'free room and board'. They do not stop paying their own rent/mortgage when they are working.
2
@Bk2
"It seems like everyone’s answer is that they should get paid more." What was the question? And do you have a better answer?
1
@kenneth
Usually employers and employees agree upon a given wage. It’s a solution that has worked better than any other one.
Instead of prmising factory jobs a la 1959, maybe the presdiential candidates should focus on raising wages in an industry that employs so many today, and will only get bigger as the population ages....
There are so many people who will need care, yet our president keeps braying about factory jobs "coming back" as if, even if they did, there will EVER be jobs like there were before automation...
Caregiver jobs can not be automated. Wake up people. A lot of us who think we will never need them, will. We are living longer than ever.
45
@Ignatz "Wake up people. A lot of us who think we will never need them, will. We are living longer than ever." And once we're awake, then what? Please finish the thought.
1
Marjorie is an angel, but is one of few and far between. I work with many home care agencies and hiring and retaining qualified caregivers is becoming more difficult. This "tip of an iceberg" situation will become more acute as Baby Boomers age in place, and do not have the resources that Bob's children have.
As this problem gets worst, we should look to Japan as a model to consider for our aging population. They figured it out because of the respect that have for their aging population.
12
This article was very disturbing to me from the standpoint that, although it highlighted a difficult transitional phase of which we need to be conscious, it gave very personal comments about someone who was not capable of giving his own consent. Most of us would not appreciate the most intimate details of our life to be so specifically described, even when we are not conscious of the social context. The courage and devotion of this obviously emotionally supportive caregiver is really admirable, but I wish there was more focus on her level of work, personal sacrifices and less on her patient’s excretory difficulties.
12
@Mara This article is very real. I had trouble finishing it, because I know just how true it is...Bob's story is helping others understand the scope of the problem. I am grateful for the honesty of the article. It made you and other cringe...and it did it's job.
27
My heart goes out to Bill, his family and especially Marjorie. This is not easy for any of them - to experience the physical and mental decline of a once vibrant person is difficult to say the least. There are resources available to help ease the burden, if only for a short while, such as adult day care programs which can address both the medical and dementia issues. If he is a veteran, the VA may also have programs that can provide some relief. Socialization can bring Bill much needed diversion and give relief and time off for Marjorie. She has a thankless job and does it with grace and love. Bill is lucky to have her.
10
God Bless you, Marjorie!!!
26
Marjorie Salmon and those like her deserve a medal and a huge pay raise from the federal government. I cared for my 92-year old mother w/ dementia for two six month period. It burned me (70 years old) out. Completely. It’s high time Medicare paid for this - and the pay should be more than respectable.
40
@P Remember, Majorie is being paid by an agency. It doesn't sound to me they are doing their job.
They should have a social worker on staff as well as some housekeeping. Something is missing in this story.....
@P “from the federal government.” I love statements like this. It’s as if the “the federal government” was some magic entity not reliant on other people’s taxes.
@Bk2. Well silly me for thinking that complete health care for the elderly should be covered by our federal government. I think Trump’s earlier tax cut should be rescinded and that taxes should be increased substantially on the one percent. And there’s quite a few of the one percenters who would agree.
Please stop calling them caretakers. They are caregivers. Caretakers look after things not people!
38
The term is: caregivers.
@Sheriff of Nottingham
So saying to someone in all sincerity "Take care of yourself" becomes null and void"?
Good eldercare is demanding and merits appropriate compensation . Those of us who could not afford eldercare at the current rates deserve an option. Do we have the courage to admit we cannot or will not make the sacrifices that providing decent eldercare to the growing legions of elderly and provide dignified and realistic alternatives?
9
Thank you NYT for shining a light on Elder Care. Both private and skilled nursing pay employees far too little. This perpetuates the cycle of poverty! Care workers are too stressed out, there are not enought of them within each facility or available for home care. Keep the light on this very sad situation please
14
@KatieBear I agree with you that these workers are underpaid and this is a massive problem that's only going to get worse but Marjorie isn't in a cycle of poverty. The article indicates she makes $75K year and works 27 days on average out of a month, which is about $230/day, about $9.60/hour on a 24-hour cycle since she's a live-in. Where else is an uneducated female worker going to make $75K/year? It's no life, but she's there for the income she knows she can't make anywhere else. Hopefully she's been saving the bulk of it and investing wisely.
Even in a nursing home, it requires attention and care. My sister took care of mom when she spent the last 2 years in a nursing home in northern California. Of course, my sister's adult kids all have their own life. My sister went there after work at least four nights a week. Both my younger and older brother also in California occasionally spent 1 night with her, respectively. I flew in from Houston when ever I can and spent at least 50% of the time with her. But I really admire my sister for her consistency and tender loving care. Without her presence, Mom would suffer a lot.
13
As horribly low as the pay is, with no benefits or retirement, most Americans cannot afford to pay it for their loved one. And if they've lost their ability to walk or stand, this isn't even an option, as two caregivers are needed to move the individual. $57,000 per year, not including incontinence supplies, medications, food, and anything for enrichment. Most elders end up in far worse situations...a miserable end to life. Some say assisted suicide is the answer, but for many there is still joy in life, if only they could afford the care and a reasonable living environment, (e.g., not sharing three-to-a-room in a dismal nursing home).
Our elders and caregivers deserve better. How can we have trillions in national debt and still treat our elders so badly? If we are going to be in so much debt, how come none of that spending benefits ordinary Americans?
31
@jbsea none of it benefits ordinary Americans? Who does social security benefit? What about Medicare? What about VA spending? Or aid to families w dependent children? Or Medicaid?
4
CNAs, home health aides are routinely paid little, because that is how the hospital industry set wages, long ago, and everyone else follows. Of course some families will pay more for a devoted caregiver, and it's surprising Marjorie doesn't get a full day/night off per week, which she desperately needs. Her pay isn't bad, considering it's also room and board. But, the lack of sleep, and the potential for Bob becoming belligerent should alert his family to spend more time with him, even occasionally sleeping over so that Marjorie can get a full night's uninterrupted sleep.
The whole issue of eldercare, be it at home or in a facility, needs to be thoroughly studied. A major issue, aside from the sheer numbers of caregivers needed, be they family members and/or hired help, is the funding. How NY state can afford to pay for help at home is a wonder. However, help at home is still much cheaper than Medicaid funded nursing home care, and should be offered as an alternative wherever possible.
9
@Rosalie Lieberman
"Her [Marjorie's] pays isn't bad, considering it's also room and board."
Getting room and board is not quite the benefit it seems if the caregiver also has to maintain an apartment of her own, as Marjorie does. Abandoning your apartment in a high rent, high scarcity, housing market would be suicidal. So let's look at the whole equation here.
The fact is that Marjorie and others in her situation are grossly underpaid. $27,000 is about two months pay for the average Google or Facebook twenty-something where I live. And I know which produces work that is more valuable to society.
If the American President was sincere about making America Great Again, he'd have raised the wages and benefits for home health caregivers and not given tax cuts to the wealthy.
6
This kind of work would be a great category for a younger demographic job corp program (gasp - socialism) or alternative to the military, or any number of fairly obvious things other than a savage market solution, not that this isn't the optimal for everyone of course.
12
Many of the people who do this incredibly demanding work are immigrants. They are extraordinary - caring, responsible, patient, and amazingly hard-working. This is the image of immigrants that should dominate the headlines, not the made up caricature put out by the right-wing that all immigrants are criminals and "animals."
83
This is a sad story about aging and caretakers who both have to endure indignities and sufferings. Being underpaid for such demanding work is exploiting. They sure deserve double the mount for such challenging work. Not surprising , that not too many are willing to do that kind of work. I believe if they doubled their pay, they would have more workers willing to do that kind of work while offering care of the elderly.
9
@nf "if they doubled their pay, they would have more workers willing to do that kind of work while offering care of the elderly."
You're probably right. But . . . if the pay rates were doubled, far fewer people could afford the service and, therefore, far fewer caregivers would find employment. Is there a "real world" solution?
3
Marjorie Salmon is a blessing. If Bob's family are truly grateful for her dedication and deep care, why don't they find her some relief? Either night care or a day or two off every week, without a decrease in her monthly pay? This sounds unsustainable to me.
53
For all his ills, Mr. Dettmer is one lucky man!
10
There should be a follow up to this article. Reading the comments many questions are asked that are not answered here. How often does the family visit? Do they have him on holidays? What happens to people without a family or cannot afford it? What do they do in Europe? How much is the agency paid? Some of these agencies are making out big time. Does this man Bob get social security? I think this man needs some other stimulation, like going out once in awhile. I agree with one comment who had some worthwhile ideas like installing cameras. I had a close friend who was going through this & that relieved her her mind, less stress, plenty.
This to me is one of the toughest jobs there is. These people that do it should compensated at decent union type wages, $25... $30 an hour to start. Aren't they as important as a Car Mechanic or Plumber, what do they get? And of course all health care funding should be under on roof, Medicare For All.... Much easier.
25
@Doctor Woo
This is already an emotionally draining job. Can you imagine the added stress of knowing you’re being filmed 24/7, 27 days a month? Abuse could still occur anyway since it would be unethical and likely illegal to install cameras in private areas that are shared such as bathrooms. Concerned families need to do their best to make time to visit as much as possible.
4
@Doctor Woo Sadly, none of this is covered under Medicare. The biggest transfer of wealth in this country is the end-of-life draining of all accounts to cover care. Which is ok, but there must be an option for people who outlive their savings. And of course, for people whose families cannot afford in-home care, the option is usually a family member quitting work to provide this constant care. It's very destructive to families. Can't we do better as a country? Richest country on Earth, but 90% of our population will face this soul destroying struggle at the most vulnerable time of our lives.
10
@jbsea
The end of life draining of all accounts to cover care is not OK. It´s going to line the pockets of multimillionaire CEOs of multimillion dollar home care agencies and assisted living facilities, skilled nursings homes, etc. -- not to those who actually do the caregiving. And those life savings should be available, at least in good measure, to the next generation, to help them get a start in life and/or to sustain a multifaceted economy. If we spread out the cost as a society, collected more taxes from the super-rich and from corporations and spent less on weapons of war and so many, many other things we shouldn´t be spending money on...that would be a start.
2
Thank you for highlighting a difficult life stage with no viable solutions. I’ve worked in social services for years-why is Bob not enrolled in an adult day program? Such would address his boredom and give Majorie a needed, regular break.
23
Not everyone is a candidate for adult daycare, if they are wanderers or too agitated (shouting, shoving, or worse) then they're out.
2
@SoCal
He may not be able to if he’s at a stage where he’s soiling himself and locking the bathroom door. If he was it might not be a cost his family can take on since his care is already $75k/year.
1
@SoCal Can a person who needs frequent diaper changes attend a day program?
1
As boomers get older the need for health aides is only going to intensify. Hopefully that leads to better pay (remember those supply and demand graphs in Econ101?). But It has to change. It's so difficult to find good aides who you can trust and are reliable. If you find one, pay them above market rate and treat them kindly . That helps to keep them. Our family is forever grateful for some of the amazing helpers we've had over the years. They helped keep our elders out of nursing homes that no doubt would have hastened their lives.
10
@northeastsoccermum
Do you recognize your privilege? Do you know how few in this country can afford any kind of helpers? Do you realize that not all elders even have children? Or that these children are just reaching retirement age, with health concerns of their own? Yes, caregivers should be well paid! But how?
2
After my Mom had a stroke, I cared for her 24/7 until she died - in her own home - two years later. It was the hardest thing I ever did in my life. But Mom and I had many moments of enjoyment, being together. We laughed. We cried. We were closer than ever before.
My three brothers told me they “weren’t prepared” to take over and give me a night off - ever. They told me I was “the daughter” and it was “my place” to do this.
As it says in the article, most care for the elderly is done by women.
Things won’t get better unless our culture finds a way to truly value “women’s work”.
261
@MJM I wish that your brothers' wives had harassed them with a vengeance, until they did their part.
13
Surprised they haven't tried twelve hour shifts twice a week with no live-ins, three and four alternating days off and on with OT for that four day week (8 hours) like companies do.
6
I know it would add to Marjorie's burden but as I was reading the article I kept thinking a well mannered dog in the mix would be helpful. I have an elderly, chronically mean spirited woman in her late eighties who has been softened by the presence of my pooch. We usually stop by for a few minutes every day. She sleeps most of the day on her enclosed back porch so I play fetch with him so that he has to retrieve in her back yard. Even that bit of activity she finds quite entertaining and at least has her looking out the window instead of a TV screen. Just a thought. I'm pulling for Marjorie. What a woman.
26
@Chazlow Bond You stop by, she's sleeping, you play with the dog, and...she finds that entertaining? I thought she was asleep !
1
@Chazlow Bond Great idea. But sometimes people like Marjorie are from cultures where animals are not indoor pets and they are averse to caring for them in addition to their human charge.
I wish the presidential candidates would discuss this issue. Supposedly Medicare for All would cover long term care. But we cannot get any specifics from any of the candidates.
14
@Gloria: "Supposedly Medicare for All would cover long term care."
Medicare does not handle long term care.
https://www.aarp.org/health/medicare-qa-tool/current-long-term-nursing-home-coverage/
When a senior cannot live independently the alternatives are in-home care from either a hired care giver or relative, assisted living centers or nursing homes.
Perhaps a Medicare For All scheme will pay a living wage to all in home care givers for patients of all ages. Or it may pay for assisted living centers for all that require it. Or we'll see more state funded nursing homes. We may also see assisted suicide being legalized in more states. Guess which two scenarios have the highest probability of occurence.
4
@Jp. I am well aware that Medicare does not currently cover long term care. This is why I purchased long term care insurance.
But I had read that long term care would be covered in one of the Medicare for All proposals (Bernie’s).
But the candidates don’t seem inclined to discuss this issue at all.
3
@Gloria:
I too have long term care insurance that I kept in force when I left a large employer some years ago. As far as I know Bernie's current plan leaves long term care to the realm of Medicaid.
There's talk about long term care and few specifics except for some mention of providing some money for in home care and "community care".
I don't see Medicare for All providing much above the current Medicare-to-Medicaid level of care.
1
My mother cared for my father (Alzheimers) as long as she could at home. He was finally placed in a nursing home where he was cared for at the required level. My mother visited him 5 days a week to help with his care and became a strong advocate for all the patients as well as the staff caring for them. It is a thankless, tiring and frustrating job for which the "line" staff are woefully underpaid. My father's doctor visited about once every two months, took his blood pressure, looked at his chart and billed Medical for about a thousand dollars. We need to bring dignity and serious compensation to this industry. When my father passed away I suggested to my mother that the care of the patients would suffer as she was not there to be the advocate and maybe she would like to volunteer a couple of days. Her response - I never want to see that place again.
54
Everyone should earn $150,000 a year with benefits for a 38 hour week and retirement at 90 percent at age 64. In fact low education jobs, being more boring, should pay a whole lot more than high education jobs which are more interesting.
22
Great story. Marjorie is a saint. Bob has a good family for finding Marjorie and paying her salary. Poor Bob, we are all heading in his direction.
20
This breaks my heart. My mother needed 24/7 care and we had two amazing caregivers who did 3 and 4 24-hour days per week. One of them had 5 kids of her own.
She was with my mother when she died and still texts me regularly. We gave her holiday tips, but she should have been making so much more for what she did. The other caregiver was young and was getting her R.N., which is the way to go for any of these caregivers who can afford it. They are already nurses, essentially.
To work 27 out of 30 days per month seems crazy. Also it says the family spends $75,000 per year on home care?? How is that possible?
11
@tinabess
I’m guessing the agency takes a cut. When my father needed care on LI, we got connected with a referral service that took an initial fee, and then we paid the aides directly.
We also met some amazing people. However, it never occurred to us to let someone work 24 hours; the work was much too demanding.
5
at the minimum, bob’s family needs to hire a second caregiver at least 2 days a week to give marjorie time off. this is what everyone i know in similar circumstances does.
38
Marjorie is a godsend, an angel. This world needs more people like Marjorie, her and everyone like her deserve great respect. Not just anyone can do the job she does, it takes a special person to care for our elderly, especially our elderly suffering from dementia. To classify her work as menial is completely wrong, the work she does is hard, time consuming, and mentally challenging, exhausting. The patience needed, the skill and attention needed are immense. People in our country are living longer which is putting a great strain on the care industry, and it’s only going to get worse. Making it harder for people to immigrate into our country is not helping, it is only making it harder to find carers and more expensive for everyone needing care. As usual this administration is not thinking ahead, it’s not considering the consequences of its actions.
Thank you, Marjorie, for the work you do, we all appreciate you and all the others like you.
50
The article mentions the caregiver also gets room and board, so that should be added to the pay estimate. So, $160 per day x 27=$4320, plus $1200-$1500 for room and board? $5500 ish x 12=$66,000 or so annually, no? Still, caregivers need a break too. I have a disabled sibling and there are very few even adequate options. My mother in law is also at the point where it’s becoming necessary to have round the clock care. And my generation is next... all very sobering.
12
@Hope E As mentioned previously, the " room and board " is a requirement, not a benefit. She still needs to maintain her own apartment elsewhere. And the annual pay sounds good until you figure it for 24 hour days.
I worked for a year delivering home health care equipment. In all that time, I never met one American born home health aide. We need to make it easier for the angels who come here and do this work, not harder, hopefully before I'm ready for the straw and diaper.
33
@Hope E As mentioned previously, the " room and board " is a requirement, not a benefit. She still needs to maintain her own apartment elsewhere. And the annual pay sounds good until you figure it for 24 hour days.
I worked for a year delivering home health care equipment. In all that time, I never met one American born home health aide. We need to make it easier for the angels who come here and do this work, not harder, hopefully before I'm ready for the straw and diaper.
3
@Hope E
I find it strange that she maintains an apartment to live in for four days a month. She mentions calls and texts to lots of friends plus her children and extended family. Couldn’t she stay with someone or even just go to a hotel for those four days? Without the apartment her only expenses are her cell phone, clothes, toiletries, and personal items which would allow her to save a huge portion of her pay.
2
Of course the wages are pitiful. Elderly people not working produce nothing for society, just consume. So any resources devoted to them also produce nothing.
@MarkYou have to factor in the fact that these seniors (or elders), often have worked a significant part of their lives and may have made major contributions to society. They could have possibly raised and supported their children and grandchildren during their active and productive years. Just remember that if you’re lucky, you will live to a ripe old age. Save enough to prepare for it.
12
@Mark
My mom improved countless lives as a teacher. Students loved and remembered her for years. After retirement she volunteered teaching at a children's hospital. She donated from her pension and social security to charity. She was a friend to everyone in the neighborhood. She gave of her time and talents for her entire adult life. Then she became "unproductive". The resources dedicated to her last years produced peace and comfort to her and her loved ones. That's far from "nothing". She earned that and a whole lot more.
8
@Mark Guess we should come to you when it's finally time to make those special, 'do you deserve to live' panels.
I was a caregiver for my surrogate mom from the time she was 83 to 92. Her health decline was excruciating, like death by millimeters. She had 3 sons who were married, they, and their wives were all too busy to help in any way. I used what money I had because she had been my surrogate mom for 40 years and I owed it to her. The oldest son visited before she passed away and thanked her for being a good mother. At least she left this world hearing that. I wouldn’t have it through her last days had it not been for the hospice nurses. They truly are angels who walk this earth.
37
@ so are you.
1
So much for "aging in place." This man would be better off in a well-run, well-staffed care home, if there is such a thing. The emphasis has been on "aging in place" because it seems more desirable to those of us in relatively good health, able to manage our daily needs with a minimum of help, with the cognitive capacity, mental health, and social connection to actually appreciate being in our homes. This unfortunate man doesn't even know he's home much of the time, has no friends, no social activities, nothing to occupy what's left of his mind and body except his dreary daily routine... and his caregiver, obviously a lovely lady, is being exploited by this system. As an pre-boomer in her 70's,, honestly under these circumstances, I would rather be in a good assisted living or care residence (if only I could afford it!) than "at home." I increasingly suspect that all this touting of "aging at home" is based more on economics than compassion. Obviously it's much cheaper to pay someone $10/hr for 24-hour care than to establish and support high-quality institutional care to meet the needs of the increasing numbers of people, like Bob, who need compassionate 24-hour care.
23
So called care homes are about 11,000 a month. Awful food, a small room you have to share, overuse of psychotropic drugs. The direct care workers make dismal wages too.There is abuse also.
We, as a society, are in denial about this. But then most of us run from anyone who is ill. We hate to face our own mortality. There are no easy answers to all of this but there must be some better ones than what we are doing now. Maybe we can start by caring about others around us.
41
@VGraz
Keep on dreaming.
"High-quality institutional care" doesn't really exist for the most part. We are living in a "for-profit" world where the benefits go to the owners/shareholders. How do you make money? Well, you streamline operations, minimize your expenses, cut corners where you can, etc., just like any other business. The goal is to maximize your profits. Do you think that these institutions are paying their workers much more than $10 an hour or that they provide healthcare and other benefits? Compassion takes a back seat to generating income.
This is not to say that there aren't some truly wonderful, caring people who work in these places. They, however, are caught up in unyielding system, just another race to the bottom.
I took care of my Dad in his home for the last six years of his life, and it was not because of economics. It was because I wanted him to have the best quality of life for as long as possible. He deserved that. It was tough and it was financially difficult for me, but I would do it again. Despite his Alzheimer's and a multitude of other infirmities, his last years were as good as they could be. I eventually had some help, but HHAs come and go with little notice. They deserve more for doing such hard, important work. But again, that's not what the system does. Still, the need for care exists.
God bless you, Marjorie ! ! !
14
Bob needs the love and caring and interaction with / of his family - not just their ability to underwrite his care. Why are they strangely lacking from this piece?
10
Addressing the social isolation for both Bob and Marjorie is an important aspect of care that is frequently neglected. Bob needs social and emotional stimulation as does Marjorie but it sounds like neither have an opportunity for that. Life at Bob's stage of life should not be just about practical existence it needs to include how we include him in activities and people to the best of his abilities.
21
A lack of (apparent) stimulation deepens isolation. Does Bob ever go outside, listen to music, read (be read to), make things, talk to people other than Marjorie? does he have any responsibilities, no matter how small? Or is it mostly watching TV, laying in bed and aimless wandering?
Where is Bob's family in the mix? Other than writing a very generous check every month, do they not provide any respite care? Not to pile on guilt: but presence, listening, spending time together is the greatest of all gifts.
It is noteworthy indeed that when Marjorie decides to speak consistently to Bob in a loving and caring voice he responds positively. In other words, we all need love, touch, gentle words to soothe us through all the days of our lives.
66
@Sarah/ I agree with Sarah's comments. In addition, I would point out that Marjorie should take Bob to the toilet every hour if they are at home, should not be feeding him spaghetti and fruits if he has the runs, but rather foods that stop diarrhea, such as rice and bananas, should request a prescription for incontinence from his doctor if he's not already getting medication for incontinence, and mostly, she should walk Bob and exercise him as much as she possibly can. Flopping between bed and sofa is a big part of the problem, especially with Parkinson's. With plenty of walking and exercise, mild workouts (Florence can do them too, and she does seem a bit overweight), and the correct diet, Bob will sleep much better, and so will Marjorie. There are lots of good work-out regimens on the Web, and Marjorie can watch people do them on YouTube and learn them that way. They can be quite simple, but keep Bob and Marjorie moving, stretching, dancing for most of the day, rather than watching TV, lying in bed or on the couch, and aimless wandering, will bring both Bob and Marjorie new energy, new life, new hope and inspiration. Here is one such video: www.youtube.com/watch?v=ZaVDs5DPnsA.
3
Andy Newman's story is just one, if not ten or hundreds of thousands, of stories like this that happen every day here in America. There are so many economic, societal, and political issues connected to just this one story. It's complex.
But I want to talk about the person Marjorie Salmon. Marjorie, you, as a person, are priceless. You are one compassionate and strong person. You should be making a six-figure salary. Bob is one of the luckiest people in the world to have you take care of him. Thank you for being part of America. Bless you and your family.
148
How does W. Europe, Japan and Canada handle in-home care? The US isn’t capable of delivering quality services that aren’t profitable.
Public schools, public hospitals, social services water utilities, infrastructure,...America has no clue. And that despite all the MBAs, MPAs, PHDs, Ivy Leaguers, Engineers and Lawyers that we have in charge.
My guess is that other developed countries don’t rely on exploited labor and probably deliver better services and outcomes.
33
@Practical Thoughts
The difference is that those other countries have a healthy health care system were profits do not mandate care and where companies do not have a higher importance than people (and yes, companies are not people). Workers in nursing homes and hospice care are paid a decent wage and the work is valued.
31
Its not much better! Cares are a forgotten group of people, forgotten by ociety, who are too busy with there lives, and see Old Age, and its associated problems, as somebody's else's responsibility. Once, Old Age Pensioner's, OAP's, as we are called in the UK, where once respected member's of society, and treated with care and sympathy. Neighbour's, who lived close by, took it upon themselves, too check if they where O.K. Society today has no sense of being "a good neighbour" which, in many ways "was the glue which held society together" and is a sad reflection on todays society, on both sides of The Atlantic. As for the people who provide this essential service, they are mostly low payed, work very hard, in very demanding situation's, and are not given the respect, by Society and Government's, which they so richly deserve! Government's do very little to aliviate there situation, and show little concern the everyday problems that these people face, usually by themselves. Growing old is inevitable, just as is death, and no one can avoid this fact of life.
1
And other countries have healthier people who don’t stuff themselves with junk. Been on a plane lately. Half the passengers can’t fit in one seat.
1
When my father was being discharged from a rehab hospital after a 3 month stay in an acute and non acute setting I looked into getting help for 12 hours a day. As an RN I was going to help the other 12. I used a service called Comfort Keepers and their fee was 17.00 per hour, making it over 200.00 per day for 12 hour shift. He had a decent monthly income from SSI, Military retirement and State retirement but still would have run out of money every month with living expenses at the rate we were quoted for home care.
My point is how in the world do you get someone for this level of care, living with you father 24 hours a day for 160.00 per day? That is ridiculously low, even for Georgia where I live. When you add in the behavior issues I am surprised you have anyone do this job.
The demand is going to sky rocket as boomers age. I am soon to be 61 and have worked in a hospital setting for 43 years. I plan to get a home with a first floor master to age in place. My father was able to stay at home with minimal daily help from me until almost 90, at which point his CHF caused his death. Of course with dementia everything changes. Hopefully my husband and I can stay at home until we die, as he did.
31
Andy Newman, your article pulls at the heart strings, but presents only one side to what I suspect may be a multi-sided story, leaving the commenters here freedom to fill in the other sides with their imagination. For example, the fact that the son is a doctor tells us nothing about whether the family can, in fact, afford more. Your piece does not inform as to how a higher cost of care might have impacted the family's decision to hire Marjorie in the first place; if they had not hired her what would her compensation have been? What are the implications of Marjorie maintaining an apartment that she rarely uses? Etc.
8
The lack of empathy shown in some responses is at the root of many of our county’s issues. This is a real problem, and calls for real solutions. Other first world countries treat their elders with far more respect and compassion than we do, and they honor the work that is caregiving.
Deterioration during the aging process will happen to all who are fortunate enough to age. Start being part of the solution, instead of kicking the can down the road by criticizing how others have tried to manage the problem.
27
This is an important article, but it tries to end on a cheerful note which does not adequately address the obvious problem of caregiver burnout. Why doesn’t Marjorie have respite? She shouldn’t have to rely on prayer to navigate the ceaseless, grueling demands of caregiving to a person with Bob’s level of need.
30
I don't understand the family's absence of conscience.
How do you just accept someone working that many days per month round the clock?
Just because there isn't a law about it doesn't make it OK.
Just because the employee will do it doesn't mean it's OK.
This is exploitation.
111
@Jules
I agree. I'm sure the family's gratitude is real (they hit the jackpot with this amazing woman) but if they saw her as an equal they would certainly offer her some paid relief, days off to be with her family and friends, vacation time. I was exhausted just reading this. Mostly female immigrants do this grueling work. And beware the jobs that include room and board. That is not a perk.
37
@Jules Yes, this is exploitation of mostly people of color and exploitation always goes unnoticed. Many of these caregivers are immigrants once again doing a job few white would ever do, but some have. I'm one of them. These are the same people who care for patients in both Medicare/Medicaid funded convalescent hospitals and in-home care. And like all jobs most white people won't do, this job is criminal in its lack of supporting laws and low wages.
8
@Jules- I agree completely!
1
How many families in this country could afford to pay $75,000? That is not a lot of money for the job she does, but it is a lot for one family to pay What happens to the millions of people who cannot afford that?
28
@jfdenver ... She does not get paid $75K recall she works for an agency. She gets paid $160 per day so if you do the math the agency gets about 22% of the $75K. That’s why the article keep stressing that employees in this field is grossly underpaid
46
@Irie4Life
I was thinking the same thing. These workers are not self-employed (as far as I know) and are not getting the hourly rate charged. The pay might be better in nursing homes, but for most people, the cost is prohibitive.
10
@jfdenver Then they have to **gasp** take care of their own family members.
I note: 1/3 of the people doing this work are immigrants, further proof of how valuable and needed immigrants are. Yet daily our government makes it harder for immigrants to arrive, stay here, and get asylum. I know a legal asylum seeker doing this very job - and she has been waiting years for her process to finish. And anti-immigration types perpetuate the lie that American citizens are losing these jobs because immigrants are taking them ... it is long past time for us to realize that our anti-immigration policies negatively affect every aspect of our lives: from birth to our sad, lonely, aging and death. The gentleman in this article is one blessed man to have such care from this wonderful woman. He and others like him may also be the last of the boomers to be so blessed if we continue with our anti-immigration policies.
53
I think it’s immoral to bring people into the country just to exploit them with less than liveable wages or to do dangerous work without appropriate compensation.
Just because these people are desperate should not serve as a green light for Americans of all political stripes to exploit that desperation.
Pay these people the wage that Americans would demand of themselves.
4
@Liz Siler
Yet your comment implicitly relegates immigrants to underpaid and undervalued jobs. You seem to be advocating for continued/ more (illegal?) immigration but at the same time, viewing these people as suited only to do the work Americans see as beneath them.
2
@Practical Thoughts Who said anything about favoring exploitation? I certainly don't favor that. They should be paid fair wages (meaning much higher than they are now) and treated as all workers in this country should be paid.
I’m so happy to read that Marjorie has a new approach of positivity, fun and sweet talk with Bob. I hope she’s also using music to connect and improve his mood (and hers!)
The therapeutic powers of music are astonishing and people who suffer from dementia are transformed by hearing the music that meant the most to them in their lives.
That said, Marjorie needs to have more time to rest and recharge or it’s possible that she will suffer from dementia herself.
I recommend the book “The Alzheimer’s Solution” by Dean & Ayesha Sherzai to anyone concerned about future cognitive impairment.
9
There is also a wonderful program called “Music and Memory”.
2
Thanks to Trump's draconian immigration policies, the shortage of home health aides will only get worse.
27
We have to get over our idea of nursing homes as "institutionalization." Yes, some are not good, just as there are some doctors, dentists, accountants, teachers, etc. that are not good. But, the entire industry shouldn't be demonized because of a few subpar places. Most nursing homes are fine, and give round-the-clock good care to elders. My mother lived her final 8 or 9 years in a lovely nursing home in Colorado. She loved the aide that cared for her daily. Mother sometimes complained that the food wasn't to her taste, but that was her only complaint. Luckily, we're poor and mom was accepted to Medicaid. Her home was close to my sister's house and my sister dropped in at various times during the day to check up on her and always found mom clean and content and well-cared for. When mother finally passed away, there were quite a few of the nurses and aides who came to her funeral service. They didn't need to do that, but they did. Maybe everyone's experience isn't like my mom's was, but many people live in excellent nursing homes. As a society, rather than denigrate the entire industry we should support it's mission of caring for elders and do what we can to improve the system, and increase the pay for caregivers and nurses.
59
Nursing homes are institutions.
No getting around that.
You are a Saint
21
@Barb she should not have to be a saint and she won’t be able to last long-term without adequate respite. No one can and it leads to potentially dangerous situations for caregiver and patient alike. The tremendous need for well-trained, compensated caregivers for a rapidly aging population will not be solved through prayer and magical thinking.
18
@lg I think Barb's remark was to just give solace and it is a kind comment. As for prayer and magical thinking, well, our lives, and mine has been a long one, are sometimes filled with magic. My magic is a cat who is addicted to giving out love to all he meets, and a wonderful, sparkly young caregiver who comes three times a week. (She found the cat.)She will receive a good amount after i die,and five years later she will receive another amount. (It's not small change.) I can make magic too.
8
@Nightwood points well-taken, and I am heartened by your story and wish you all best! But the country as a whole needs to understand that caregivers as a group need adequate compensation, rest and respect....
3
Thank you for this realistic window into a part of life we will all pass through, like it or not. Thank you to the family for being able to open the portal, and most importantly thank you to this caregiver Marjorie. She is as close to perfect as one could come as a caregiver. Loving, strong, creative, intelligent and present. No pay can equal the kind of care these women and men provide. It is an act of love, because without that there would be no reason to stay. We do need to overhaul the traditional home aid system. We might start first by eliminating the isolation. Perhaps rotation every 6 hours with other workers. Certainly patients gain a lot being in a group home environment. It is a larger forum, with rotating oversight, less isolation is tremendous. It's just the price tag that is an issue. This is not a small boutique need, this is a part of human life, every life. The model I've see working well is a co-shared home with both paid and multi family support. This is definitely a pressing subject. Thank you again. Marjorie is a saint.
16
It's difficult to type because of a Parkinson's tremor, but I wanted to tell about my experience from the point of view of a patient requiring 24-hour care who is not on Medicare and not cognitively impaired. Since I am retired, live alone and became bedbound three years ago I wasn't comfortable with the idea of having an agency send multiple aides to my home because it would be difficult to familiarize them with my routines and where everything is. And the aide would be paid less than the cost to me, but it is almost impossible to find a private aide who will commit long-term that will allow deductions from their pay, thus denying me an income tax reduction for this major expense.
I give my aide as much free time during the day as possible, am flexible about meal times and have called for assistance between 11:00 p.m. and 8:00 a.m. a few times.
On her part, she is on the phone all day with compatriots here and family at home, invited her daughter to stay here for three months without first getting my consent and recently
a friend for a week and has borrowed large sums of money from me by haranguing until I give in. The only way she can repay me is to continue to be my caregiver.
14
@Gail Enid Zimmer Thank you for sharing your experience. I hope you will find someone like
Marjorie, and/or someone who is able to conform to
your tax deduction situation. All good wishes.
7
@Gail Enid Zimmer
Sounds as though you are the victim of elder abuse. You do not have to be hit to be abused, the "loan" thing is sufficient to describe abuse since it sounds as though you were coerced into giving her the money, and she has no intention of paying you back. As hard as it is to find someone I would fire her and get someone else. Just make sure you change your locks after you do.
15
Ms. Zimmer, financial and other exploitation of the elderly/infirm is a crime in NJ. Adult Protective Services can assist you. Please call them at 609-588-6501 or dial 911. I realize your situation seems impossible but you are being exploited by a person who truly is not a “care” giver.
6
Great article. However it seems to be against the notion of caretakers wages and conditions.
It is not a grateful job. But it is a job and an opportunity for many who dont have other options. As well as the only source of care for the elderly. We still do not have robots for this, and if everyone gets paid a professionals wages for home care it becomes our of reach for most.
3
@Alex I'm confused by how paying professional wages for home care is out of reach. Paying professional wages for police isn't out of reach, or for firefighters. I'm also confused as to how someone can read about a profession in which loving care and touch are so vital and comment "we still do not have robots for this."
The solution is straightforward: a wealth tax, and restoration and strengthening of high income tax rates on the wealthy, especially the very wealthiest.
Imagine a society in which home health care workers were paid enough to live on for working an eight hour day, because people making more than, say, fifty times the minimum annual wage for full time work were expected to somehow find a way to be content with that income, and had essentially all of the rest returned to society. It would be as if we stopped honoring the most mentally ill among us, and started honoring the workers.
Happy labor day.
7
Why, because Bob's son is a doctor, does everyone think he makes a fortune? He might be working at a city hospital or be in an area of medicine that doesn't pay that much (pediatricians, for example, don't make much money considering all the time spent in school and training). How do they know that Bob's son isn't also paying off his medical school loans? I find it amazing that everyone thinks that every physician is rolling in money. Because that's simply not true.
58
@BA
I am glad you wrote in support of Bob's son. He was helpful to us by allowing his privacy to be interrupted in order to share an important story that many have and will experience. He is probably also paying for rent, food, utilities, supplies, drugs, doctors and hospital costs, etc. Please people, this is a most difficult and costly responsibility.
22
@BA
"Why, because Bob's son is a doctor, does everyone think he makes a fortune?"
Yep. I'm a physician. I'll share my compensation. It's a lot: $162 pre-tax. Direct deposit, I get $97k a year after deductions for insurance/tax etc (and retirement I admit). $8k for loans/year. That's about $90k.
Not complaining, that's more than most people (though I do work for it). But the idea that the $75k that is being paid for Marjories's services shoudl be massively boosted--where would that come from? I couldn't even pay the stated $75k.
Not everyone is a surgeon.
9
I totally understand how difficult this is for the family. However to expect one person to work 24/7 is inhuman.
5
My mother who is 70 lives with us at home. She is pretty independent but she also has a lot of medical issues. Taking care of a parent is enriching but is also a huge financial impact to the family in addition to emotional swings and other logistics that one has to figure out. Great article....
25
@Max
Thank you and your family! This is what happens in most countries outside the USA. Our country is collectively "so busy", we seem to have no time for our parents; those same individuals who loved, protected and provided for us. This points to a much larger issue with our collective sense of responsibilities and priorities.
6
The real problem is that medicare does not pay for nursing home. Most nursing home are for profit and the prices seems to be are not regulated.
In some areas many younger and old people are admitted because they do have Medicaid
The person that worked most of his/her life can not afford nursing home care because in order to receive Medicaid will have to spent all the money and the house.
This person will need nursing home soon and the cost to the family will be much more than the previous $400. daily.
The idea of Medicare for all sounds nice but does not include medigap.
It is time that we start taking better care of our older population
19
@ibgth I am told that Medicare for All does include long term care coverage. But no one asks the candidates about this issue. I got kicked out of one of the candidate’s on-line “groups” for daring to ask about the issue.
4
Most likely the candidates do not care because some of the old people are not voting
1
Marjorie is remarkable and certainly should be getting more time off.
I would like to add that there are family members who are also full-time caregivers, who are in the same situation, and they receive no pay at all. There should be respite care built in for family or paid caregivers.
68
My neighbor just told me that she is paid by our state to be caregiver to her disabled and elderly Mom, and I have seen ads on televisions locally stating this as a possibility. Anyone know who administers, and how these programs might work? Thanks.
3
@8888Belle8888. California has a paid family caregiver program; unfortunately I have known several who take the money and neglect the family member. Still, it is an available program.
2
Thank you to NYT for such a compelling and timely article.
My family and I have been dealing with this type of a situation for the better part of two years. Mom has Alzheimer disease and Dad is totally stressed out and full of nervous energy. Each of their 4 children (including me) are intimately involved in their care. It is physically and emotionally taxing on each of us. Having said all that, they still smile, they still love and they still are OUR parents. The very thought of euthenasia being applied in situations of this type is morally and ethically repulsive to me. I agree however that we should discuss it, and then reject it. It is a slippery slope for an ethical and humane society to chose death over care under such circumstances.
9
@George Why bother to discuss it, then, if you’re already set on rejecting it?
It is not about what YOU want or believe, when it comes to the wishes of another’s end of life care, if that person isn’t of sound enough mind to make their wishes be known or had communicated them while they were still able.
Personally, I would certainly choose to end my life while I can make that’s choice, if the only other choice for my immediate future and beyond is to *exist* rather than to *live”.
I would expect that’s nobody would stand in my way at that point, and respect my wishes, not do everything in their power to keep me from it just to satisfy their own moral compass.
9
@George Why bother to discuss it, then, if you’re already set on rejecting it?
It is not about what YOU want or believe, when it comes to the wishes of another’s end of life care, if that person *is* of sound enough mind to make their wishes be known or had communicated them while they were still able.
Personally, I would certainly choose to end my life while I can make that’s choice, if the only other choice for my immediate future and beyond is to *exist* rather than to *live”.
I would expect that nobody would stand in my way at that point, and they would respect my wishes, not do everything in their power to keep me from it just to satisfy their own moral compass.
3
@Eirroc
What about if you were not of "sound mind" and were positioned as the subject of this article is?
Should someone else be able to make this decision for your "benefit." Also, what if that someone else (say a beneficiary) had a vested intrest in that decsion? Where are the lines to be drawn .... Slippery Slope.
3 thoughts:
Remove all indoor locks. He should not have the ability to lock himself in the bathroom or any other room.
Cut a square in the bathroom door and install a 2-way mirror. He should be under watch at all times but given the feeling he has some level of privacy.
Install cameras throughout the house and allow Bob's children the chance to watch him for a few hours a day. They should see first hand what is going on. This might also give Marjorie the chance to catch her breath knowing she will only be alerted if there is a disaster.
Who knows how long this can continue before social workers are knocking at the door. We have technology and common sense solutions that can improve the lives of all the people involved.
21
@Can: What a horrid future you wish on us all: spying and social workers! I for one am appalled at the lack of privacy accorded the patient in this article, let alone the world you imagine.
5
This is a wonderful article for many reasons - the devotion of the caregiver and Bob's children to ensuring that he has good care, at home. And for those of us who have been caregiver - whether family members or unpaid - this article shines a spotlight on the reality of that difficult life. I hope that readers will also be prompted to consider advance care planning - if you were in Bob's condition/circumstances, would you consider your quality of life worth living? Would you want your children to be paying over $75,000 for your care? If not, your advance directive should clearly specify choices you would want made on your behalf. For example, if you got pneumonia, would you prefer to be kept comfortable until you died, or would you want to receive antibiotics, and so on. For myself, I know that if I were in Bob's situation, I would want my children to let me go if I had an illness or incident that would precipitate my death. There is a cycle to our lives, and a time when it is reasonable for it to come to an end. Advance care planning that includes a dementia provision is critical for all of us over 60.
55
We have a home health care aide and agree that their wages are low; however, we are able to supplement our aide's wages and do so willingly and gratefully as she cares for my wife who has a memory disorder.
We could not make it without the help of our aide who recently saved me when I fell and during her usual non working hours but she responded to my call to be here while I felt ill and subsequently fell.
I cannot imagine what our life would be like without our great aide and, as I mentioned, we help her financially in addition to the fee for service. That is the least we can do for this wonderful person.
38
If we paid more for this loving but relatively unskilled work, there would be no home care. We would need to institutionalize many more people, paid for with tax dollars.
4
@Unhappy JD
find something better or do the job yourself
2
@Unhappy JD Sorry, I cannot agree that this is unskilled work. I know I could not deal with Bob all day and in the educational sense I am considered very skilled.
18
I think in our hearts most of us recognize that we don't want to be a burden on anyone, never mind a paid caregiver. (And I bless them for all the tasks they perform, indeed.)
18
The best people to do this type of work are the young old, People who might be collecting Social Security themselves can supplement with free room and board and a modest stipend. Visit the kids on the days off. Younger people die of boredom on a job like this.
The $160 is a modest stipend. At time and a half after 8 hours and a $15 minimum wage, these people should earn $480 per day. But then it would be unaffordable.
It’s a nice gig for somebody who like to take care of people and watch a lot of daytime TV.
2
@Rick
There is a great deal of physical strength and stamina that is required for in home care. Unless you are hired to be a sitter, there’s not a lot of time for daytime TV either.
17
@Rick Please remember that assisting a moving, full grown adult in any situation, needing to stand, getting in and out of the shower, needing to sit requires the strength and agility of an athlete, or a seasoned, trained home health care worker in shape. Usually two. This is not babysitting a 2 year old. The article mentions the attrition rate in the field, much of this is due to injury.
27
Worked in this field for several years. The best and happiest workers were those retired on a modest pension who needed a supplement. Their behavior was more in tune with the elderly than younger workers. Cook a few meals, help the person dress and bathe, watch TV together.
People on this board who call for bringing in desperate immigrants who would accept exploitative wages and working conditions should be ashamed of themselves. This is not the job for a young person.
1
One of my deepest fears is aging with physical ailments so profound that I become a burden on others- especially those who are reimbursed so poorly. I can absolutely understand why the elderly are beginning to speak more openly about opting for taking their own lives- and as the great granddaughter of a man who died this way, I hold no judgment whatsoever.
44
Marjorie and Bob's story reminded me how blessed my parents and I were when I took over care management for my parents who lived a six hour drive away in their own home. My dad had advanced Parkinsons and my mom Alzheimers. It started with the hiring of one woman living in their home, but progressed (an odd word for the circumstance) to two, then ultimately four full-time people working in eight hour shifts. Each was paid 20 per hour for their 8 hour shifts, and each had two days off per week. The cost? $14K+ per month, which was paid from my parents' assets. In the end, I was unable to carry out their final wishes to live out their lives at home. After 18 months, the care team was burning out and I was having to rely on agencies, which charged $50 per hour. I moved my parents from their home near Yosemite to a group home around the corner from my house. Dad died seven days later, and mom eight months to the day later. I carry some guilt for moving them, but remind myself that for their last Christmas, my parents were surrounded by family. I cherish the photos of that Christmas Eve of my grandchildren hugging my parents, even though the latter no longer had the vitality that I so vividly recall from my own youth. Thank you for reminding me to thank Marilyn, Kevin, Pam and Amy for their service to my parents, and for shining a bright light on the reality of care-giving. I also fought back the tears.
67
@Doug
You are not guilty of anything. The reality is that people age, become ill, and die. The timeline would likely have been the same no matter where they were.
4
Please, don’t feel any guilt. You did the right thing for your parents and they had a great Christmas with you and your family. Nothing is better than that.
1
We have been lucky that our mothers (now 76 and 82) remain in relatively good mental and physical shape. My mom is the younger and she's showing no signs of slowing down at all. I'm about an hour away from her and my siblings are closer.
But my husband is an only child. When his mom started having falls and TIAs, we told her in no uncertain terms that she had to move near us (she was living about a 4 hour round trip away).
After a couple of years of negotiating, we all moved into one house that has a separate "apartment" where she lives. I would never tell my husband this, but one of the reasons I like the layout of the house is that if she ever requires 24 hour care, there's enough space to have someone live in or at least have an area where her care worker could rest if needed.
I am so thankful that we were able to plan for this, and that we have the resources to do it. My mom had her mother and an aunt who lived with her, something my mom managed because she had an aide who came and stayed with them from about 10am until 6pm. They were mobile, but neither could drive. Their "minder" would take them to appointments, shopping, etc. It was a blessing to have her.
Elder care is like child care -- absolutely necessary and completely undervalued.
52
I am a registered nurse and specialize in community health nursing. We so often hear that it's better to care for the elderly at home instead of having them in a long-term care facility. I'm not so sure about that and this article is an example of why we should question the at-home approach as the ultimate goal. Throughout this article I didn't see any indication that Bob was engaging in activities that stimulated his mind except for occasional conversations with Marjorie. He seemed excruciatingly bored, which can lead to increased frustration and agitation. There are adult day centers specifically for patients with dementia where patients like Bob can engage in games and music activities, and socialize with others (to the extent possible). The best long-term care facilities also have such activities. Home care can be an excellent approach but it can also be terribly isolating, for the patient and the health aide.
134
Thank you, as an RN and the caregiver for my Mom with Alzheimer’s, I agree. While keeping Mom at home would have been nice, in reality, as her dementia advanced, the benefits for her of being at home decreased as she became less able to recognize her own home and get out. We placed her in a nursing facility after a fall, and she actually seems to be “living her best life” now, enjoying activities and interacting with the other staff and patients. There are limits to what even the most dedicated family members can do in a home setting.
37
@lmsseattle I think he was extremely bored as well...though I am not sure how engaged someone with advanced Alzheimers would ultimately be in any activity. But he probably does need something more than rattling around the house.
14
I think this is case by case. In my mother's case, after she went to a facility, while she still had some faculties, every day she asked to go home, complaining that she did not want to be among strangers.
No one was offering any stimulation in her care home, unless you count the insipid TV shows they left running all day in her room. Sometimes if she was sleeping, they would not even wake her to feed her.
13
New York and Connecticut are liberal states. Why don’t they mandate professional salaries commensurate with the value and skill required of this job.
Why do liberal states not try implementing reforms locally? It’s becoming futile to push reforms nationally when you have people like Mitch McConnell and Ted Cruz in the Senate.
12
Successfully Implementing left leaning reforms locally would also give a greater argument for doing reforms nationally.
States can give tuition free college right now. States can reimburse its citizens for health care costs, states can implement $20 minimum wage and states can implement aggressive green energy and infrastructure programs. But they don’t.
Waiting for the federal government is tough and trying a top down only approach suspicious.
1
Someone has to pay for all this. And that someone is... you, and me, and anyone who pays taxes or pays for health insurance. Double the working pay for all the home care workers, and all of us will be paying dearly for it.
Your right. Tax payers being hit with $100 million plus in two years for self dealing golfing outings by trump is a much better utilization of tax dollars.
Medicare for all!!!
I know this story from the inside. There is so much to understand, to anticipate, to plan, to look for, to organize, to do, to spend...caregivers are stretched sometimes beyond repair.
Do we have a healthcare system? Can we improve anything in this warlike society? Can we support caregivers of all stripes and pay a decent wage to those we call upon? Where's the money, the skill, the experience and the kindness going to come from?
Do we have the necessary heart, determination and active citizenry to vote and insure that the president and the legislators appropriate enough money for the health and welfare of the people? Vital aspects of our healthcare, education, housing and environment; the protection of our food and water and maintaining a civil society are all crying out.
As for the angels out there, thank you. We need you and we owe you.
18
I'm stunned by this article. Bob was put in a nursing home at $400.00 per day. But Marge who is dedicated to Bob gets $160.00 per day? How is that disparity justified in the mind of the son, a doctor, when at the nursing home he says the help was "overwhelmed" and now his father gets one-on-one 24/7 care?? This is clearly below poverty level wages, but that's supposed to be o.k? Hmm.
85
@Debbie**** I am not saying she gets paid well, in fact far from it. But She basically lives there and gets food, so that does add something. But once again no where near enough.
2
@Debbie
"But Marge who is dedicated to Bob gets $160.00 per day? How is that disparity justified in the mind of the son, a doctor..."
I believe Marjorie works for an agency. Therefore, the amount paid by the family differs by (unknown, but appears to be $75k for the year, or about $231 per working day at 27 days/month). Still quite a difference vs $400, but that is something. If it was really a nursing home, there might (or not) have been an insurance contribution.
Also: I am a doctor, and not in one of the least paid specialties. My pre-tax income is $162k, with takehome $98k after dedcutions. Loan payments are now down to $8k/year, for $90k takehome. Plenty of money, don't get me wrong. But it wouldn't leave a lot of margin to pay even more than $75k/year for adult care for a parent. Don't confuse the surgeons you read about as representing compensation for every physician.
2
@SW- I have worked in healthcare for over 30 years and my son is a doctor as well.
Any person who decides to become a doctor in this country, unless they're born with a silver spoon in their mouths, are going to go into debt with student loans- that's a given.
Back to the point of my comment; the family of Bob has made a choice to hire, thru an agency, or individual, the caretaker of their father at a poverty-level wage vs paying a higher wage and taking care of the person dedicated to their loved-one. Their choice. Unfortunately, the caretaker probably doesn't have one.
5
After reading some comments here, I ran across what may be a meaningful quote in a book I'm currently reading, Late Migrations by Margaret Renkl:
"...the end of caregiving isn't freedom. The end of caregiving is grief."
I read this over and over again, it was exactly my experience, maybe yours too.
24
So many complex layers in all of this.
Children used to care for their own elderly parents. But, now children are working around the clock to provide for their own kids and grandparents are living longer and longer. So, adult children have to shoulder the cost of (typically) substandard, industrialized care while their elderly parents merely exist (as noted by Marjorie in this story).
What is the answer? Maybe for the majority of us, the human brain is simply not equipped to go on for 80, 90, 100 years. My sweet grandmother was in her 90s with full blown dementia and the doctors were still trying to correct a heart malfunction, to keep her alive just to return her to 24 hour institutional care, the price of which was draining her adult children dry. What is quality of life for our elders, when we can keep the physical body going into the 100s but not the mind?
71
@M
Sadly, and vice versa too. As an elder law attorney, I have had many clients whose minds were sharp and clear, yet whose bodies were failing them. Yet, because of ageism and sexism, in many cases they were frequently ignored when being cared for by the medical community and became voiceless in their own care plans.
12
No not children. Women used to care for their elderly family members. But 21 century women have other options such as employment to earn for their own futures.
This caregiver should be paid for each hour that she is in Her patient ‘s home- she is on call 24/7. She doesn’t “get free room and board” if the family is not paying her living expenses elsewhere .
Without 24 hour care, this man is at risk for a lot of mishaps. Some of those might prove fatal eventually. That might be his situation if a relative was caring for him and was in a deep sleep or running an errand.
The reality and a pain of life is that our loved ones die and so do we. Is it so awful to just let that happen? I am not really sure, but as a seemingly healthy older woman , I think about it.
23
My mother in law was 88 and decided she wanted to leave the hospital and spend her remaining days at home. She needed 24/7 care. After seeing the kind of home care she was receiving from an agency (it was dismal) I looked for and found a group of Filipino caregivers the family hired privately. We paid them $25/hr out of pocket, rotated in 8-hour shifts. She received care from them like she was their own mother. I was glad we were able to find and hire them for her care. The rate we paid them was what the agency was being paid through insurance in Seattle (which means the aides were paid much less). Caregiving is not a low-skilled job. It requires a lot of soft skills (patience, empathy, resiliency etc) and an enormous amount of stamina. It's critical they get paid for the value they provide.
93
God bless this woman and all those like her. Caring full time for my very ill father x only 9 months was the most difficult thing I have EVER done...and my Dad was not battling dementia, though he often had bouts of infection-related confusion. I have no regrets, but he was my father, not a stranger. Until we start valuing and paying these caregivers what they are worth, we will continue to have substandard nursing home care...ask what you would have to be paid to do what this woman does in a given day?
33
My husband was disabled with a spinal cord injury after a car accident. I was lucky enough that there was no brain injury involved. I will be forever grateful for the rotating base of three home health aides that came every morning to get him up and showered and dressed and prepared his breakfast and left him a lunch to eat. But after they left around 10:30 AM, it was me for the next 20 hours.
No one has to tell me, that we don’t need immigrants coming to this country. One of my husband’s aides was Haitian, another from the Dominican Republic and the other a nursing student. As I said, I shall ever be grateful to all of them for giving me a much needed break every morning. I can not say enough good things about the people who take on this caregiving work.
84
It's really a very hard job. But you can leave it anytime. If you can't qualify for a better paying job or an easier one you can:
- Improve your skills by taking courses, qualification programs, etc.;
- Accept a similar or inferior payment by doing a part time job elsewhere while looking for a better opportunity.
Complaining won't improve your skills neither will bring you more money.
2
@Denis. This CG has a higher level of training - but was injured on the job and can no longer meet the requirements for that job. (No workers compensation, no paid time off, and hard to go to physical therapy if you have to keep working to pay your own rent, etc.) The cost of living in metropolitan NYC area is astronomical - working part time at these wages means she will likely lose her apartment and live in a shelter for the 3 days off each month. Given the reality that she is on duty 24/7 and can not rely on a full night's sleep, your suggestions are dismissive of the nature of this work.
41
Denis
You're really missing the point here.
10
I really hate this kind of response. If this caregiver were to leave for a higher-paying job, is it okay with you that her replacement would be likewise exploited?
I imagine you give this same useless advice to people who work in fast food, security, retail, restaurant, warehouse, and other undercompensated jobs. In your mind these are jobs for people who don't deserve a living wage.
I wish there was some way that people who favor treating other humans this way could be identified, so the rest of us would know exactly how to treat them.
5
We NEED universal healthcare, and we must cut the bloated military budget in half or more! Medicare must be buoyed up, so that home healthcare workers (which we are in desperate need of!) can be paid a livable wage! A fair wage!
Come on, America we can do better!
27
40 percent of the military budget is for pay and benefits. Be thoughtful what you cut in your effort to squeeze out 50 percent of defense spending.
Also remember, Russia and China pay conscripts and I doubt they get the pay and benefits. My guess is their officers get less too.
It is also cheaper for China and Russia to conduct military research and development and to manufacture weapon systems and equipment. They don’t have to pay contractors and engineers as much as we do and they probably have fewer labor and ethics criteria.
A 50 percent cut could put us on parity or even behind in actual purchasing parity.
3
I had to hire a home care aide for my father to supplement the assistance the assisted living facility provided. I think this aide is going to burn out unless the family provides her additional support. It is unfair to expect someone to work round the clock. I had my dad’s aide hire a relief aide to give her a day off a week. When he began needing round clock care and was unable to help her with dressing etc. I had her hire a male assistant to help during the day with heavy lifting. When my father passed I paid them for the next two weeks which totally surprised them and they tried to refuse. But they earned it and I could not have managed with out them. Six years later and halfway across the country, I still hear from Luisa. I will forever be grateful to the wonderful care she gave my father (who was before and after dementia a demanding, difficult person). I do realize that I was lucky my dad had excellent savings, however as the son is a doctor, I can’t believe they can’t afford to at least hire a relief aide! My dad was a research scientist and managed to afford his care.
37
My Father spent the last few years of his life in the care of an aide like Marjorie. Joseph was Dad's best friend and through his care, compassion, good humor and simple decency saved my Dad from the terrible indignities that the elderly often must withstand. Even now, three years after Dad died, I am overwhelmed with gratitude for what Joseph gave my Dad. I wish our system gave far more respect and financial reward for the amazing work these care givers do.
41
This is a bold, honest and eyeopening report that could inform decisions about immigration, minimum pay, worker's benefits and the role of caregivers.
The comments also open up more questions, about the obligations of families, how to plan for our own futures ( for those of us near enough to the end one to imagine it clearly) and how to assure that there are assistance in dying laws which can be set up before we are too addled to be considered incompetent to make decisions. ( I do note that some decisions are generally accepted, but the ones which violate traditional religious norms are always challenged).
With experience in the past securing home health aides via Medicaid, I KNOW that many aides are eligible for Medicaid(& SNAP/food stamps) themselves. Some cycle on/off cash welfare benefits. None earn enough money to pay for driving daily to a client's home, IF they can afford a vehicle. Public transport is not widely available off main routes, and prime times, when you get into the suburbs.
Those with "room and board" are on duty 24 hours a day; if they don't retain other housing, the moment the patient dies or is hospitalized, they become homeless -another issue for the lowest paid workers. And if they have children of their own??
The aid industry is very dependent on women with few choices; many not nearly as skilled and caring as Ms. Marjorie.
Our society disdains this and most of traditional women's work: it remains invisible. This report helps it to be seen.
48
There are a number of excellent caregivers that I've come in contact with. As I think of them, I truly hope that there's a heaven.
They have earned it, many times .
12
@T Raymond Anthony sorry, no heaven...they should be paid what they're worth in the here and now...
4
In our community we have adult daycare for Alzheimer sufferers. A bus picks up the participants and they spend the day in a specialized program and then return home mid afternoon. A break for the caregivers! Of course with our healthcare programs this is possible. Maybe Medicaid could fund it?
13
@Sue Burns
Thank you for providing what seems to me to be a solution for helping to support both the elder with activity and socialization as well as respite time for the home health care provider. And it does appear to me that Medicaid could fund a program of this type.
1
@Sue Burns
I laughed and wanted to say “fat chance”. .... until I realized you live in that bastion of socialism: Canada. We’d love to move there, but our adult children & grandchildren are here in this heartless nation, the U.S.
The father of the gentleman is a doctor- I’m sure he wouldn’t work for anywhere near the kind of wages the caretaker is getting. He also is aware of the difficulties of caring for his dad and he and his family members choose not to do the care themselves and make enough money to pay more. That is the definition of exploitation.
32
and even though the majority of Americans are in favor of assisted suicide our Congress, at the direction of their owners Big Pharma and Big Hospital will not allow it
11
I am a family medicine physician. Every day I see directly, or indirectly in fax of phone interactions, the work of these amazing caregivers. Both those who work in facilities, and those who, like Marjorie, live in the home. I am amazed that these people have dedicated themselves to this kind of work, and remain so kind and compassionate in the face of so many challenges. Most of us would not do this work, no matter what it paid.
We regularly tell military members "thank you for your service", which I certainly think is appropriate. I make it a point to thank these caregivers for what they do. They are amazing!
40
Yes, and the caregivers are being exploited. The son of the man in the story is a physician, he should be paying this healthcare worker more out of decency.
11
This is a woman who certainly deserves more pay, more respect by the community at large and better hours. There is no question in my mind about that. But this is also a man who deserves to have more interaction with other people and more mental stimulation. That's why home care is not always the best solution. It sounds like he has very little mental stimulation. Is there adult day care available? Or a decent nursing home or memory care? I know that nursing homes are sometimes terrible, but just dismissing all of them is like saying all of any category is terrible. Some are very good indeed.
19
@Ceilidth
A good nursing home would probably cost at least $30,000 more per year. There is only so much cost a family can bear. And it is hard to assess the value of interaction versus the personal attention and care Bob is receiving. I'd say he is very, very lucky.
10
@Jane Conrad Agree that the personalized care is a true gift. Socialization at Bob's level of dementia in facilities means being in a circle of people 'doing' an activity. If you watch, less than half are even watching the activity leader. Some places play an activity session video on a large screen TV. They market to adult sons and daughters, who are impressed with interior decorating, award winning chefs, and skilled sale staff who know how to leave out the details of daily life.
15
The nursing home care Bob now needs costs $12,000 per month
3
If we do not face the fact that the vast, overwhelming majority of home health workers are immigrants and they want a JOB not a handout, we're going to face a crisis of unimaginable proportions. That the NYT is talking about this is a start. But I'm living in a 55+ community in Northern NJ and most of our 1,400+ residents don't even want to talk about it...let alone prepare for it. Long Term Care policies? Sure, some have them. But i can tell you from asking that 99% have never head their policy and have never even heard of the phrase "ADL" let alone know what it is. HEY--Baby Boomers out there!!! Ain't your working kids who are going to help you out. It's Velma from Jamaica and Olga from Kenya and all the other wonderful, caring, loving and compassionate immigrants. WELCOME THEM...and pay them fairly. You'll see....
32
@SLP:"Ain't your working kids who are going to help you out. "
Ain't true.
I paid the portion of assisted living expenses that my mother's social security and small monthly pension ( a few hundred dollars) didn't cover. This was for the last 4 years of her life.
Why all the anger?
5
@SLP....you are so right.....I am OT ...I find immigrants to be more well rounded and compassionate in caregiving....
2
@SLP
Excellent points!
Just want to thank you, Andy Newman, for this utterly straightforward, vivid and immersive glimpse, and for laying bare all of the flummoxing dysfunction around Medicaid, etc. Bob’s family has done all of us a service by allowing you to be there. Please keep doing this kind of coverage of the workforce!!
20
@Annie Hayden
Using full name and photos? I find it horrifying.
I just come away with this with a great deal of respect and admiration for Marjorie. There should be more Marjorie’s in the world. Bless her.
18
Bob is very lucky his son can afford 75k out of pocket for his care.
25
Good Grief!!! This isn't the answer.
Marjorie said: "Most people are not going to pay a heck of a lot for an aide.” .... Most! people don't have the money to pay even what Marjorie is making.
There isn't enough money to compensate - one person - to take care of an Alzheimer's patient on a 24/7 basis and expect to receive receive good, compassionate care over a long period of time. I don't care how compassionate a person is. It's a great way to burn people out and create caretaker abuse. Wives, daughters, sons - all become worn out and depressed caring for someone they've known for a lifetime and love.
In this situation .... I don't understand why the doctor son isn't providing respite for this caregiver on a daily basis?
At a certain point, Alzheimer's patients need a Team of people to care for them and most certainly this man has reached that point. As a country we need to change the way we care for people with disabilities that require 24/7 long term, constant care.
And, when people get to this point Hospice needs to be brought in to have a discussion with the family about providing comfort care and stop providing life saving treatment to cure diseases that may naturally end a persons life. I wonder what all the pills are for that Bob's taking?
There's an ol' saying:
Pneumonia is an Old Man's/Woman's Best friend.
33
Respect immigrants. They often provide end of life care with dignity and compassion.
23
I willed myself to not cry while reading about Marjorie and Bob. Caught between deep respect and admiration for Marjorie, and with anger and embarrassment with those in American society who profess to respect human life, but really don't as scenes like this and other mean variations play out in AMERICA! Thank you Ms. Salmon and Bob and his family for sharing this story about real life in this wealthiest of nations. We are better than this.
40
@Jon You wrote, "We are better than this." I try to believe it, but there's no chance we can prove it until we've voted out Trump and every other GOP politician.
32
If my dad hadn't been able to set aside enough money for assisted care for he and my mom, who were disabled at the same time, I'd likely (as an only child) have been in this position, which is still all too common for both families, and for under-paid and overworked private caregivers. It breaks people. The stress of it can ruin lives. Alzheimers requires an even larger village than does child-rearing, to be humane. Ms. Salmon truly is a saint--she has discovered the only solution by lavishing kindness and civility onto an almost intolerably grinding routine--one that may extend for a number of years. We grossly undervalue our most vulnerable populations and those who support them. My gratitude and heart goes out to Marjorie Salmon.
37
Marjorie takes better care of this person than a Fully-staffed nursing home would yet she isn’t even receiving half of what a nursing home charges. It is obscene that his “grateful” family refuses to pay this dedicated hard-working woman what she is worth. She should double her daily rate to $320 (perhaps go higher if Bob threatens violence regularly) and stand firm. If the family objects, they can find someone else who is willing to work for minimum wage or they can take care of their own relative.
27
@Lynn in DC Possibly you could afford to pay someone double this wage out of pocket. My own family certainly can't, and neither can most other non-millionaire Americans. In fact, we couldn't pay even the current rate and still put food on our own tables, as that's higher than our own yearly income.
Let's tax billionaires and corporations at a truly progressive rate and mend our national social support safety net. Then we can pay caregivers what they're worth.
17
@Lynn in DC. Something tells me either you are very wealthy, your parents are/were and you have no personal experience dealing with eldery parents with dementia and the cost of good care. For those of us in the “”middle”, the choices are gut wrenching.
7
@Lynn in DC
Hopefully this article will shame Bob's relatives into paying Marjorie a respectable wage... like double what she's receiving right now. Still a deal compared to $400 at the "home."
3
Missing from the story were visits from Bob's son and daughter. How often do they visit? Any grandchildren to visit?
27
@Asheville Resident. The focus of the story was not Bob’s family, but his caretaker and her challenges. Just because family visits were not mentioned doesn’t mean the family ignores Bob. It sounds to me like the opposite. His son moved him close by, installed him in a house, not a nursing home and clearly cares for his father .
14
@Asheville Resident I also wonder who buys the groceries for this household. Maybe they are delivered.
1
@Weinssh
Indeed, the focus of the story was the caretaker and her challenges. Do family members spell the caretaker at all, allowing her some time for herself?
1
Strange that this reporter chose to focus on someone being paid $58,400/year plus room and board. For those who find this insufficient, I wonder how much would be appropriate? $75,000? $100,000? $150,000?
The problem is not Marjorie's compensation. The problem is that Marjorie's job is impossibly difficult. No amount of compensation will change that.
We live in an upside down world that doesn't pay most people what their jobs are 'worth'. And that pays a few people infinitely more than anything they do could possibly by worth.
The Times would be better if it would address the systemic injustice of inequality instead of the easy, heart-rending (and therefore riveting) problems of the human condition.
31
@Randall. Your math is only correct if you are figuring it as if she worked 8 hours in a day. Figure it as 24 hours a day and, yes, the annual amount is the same but hourly, she makes around $11 as the article states. As for "room and board" she has to stay there as a condition of the job; it is not a benefit. She still needs to pay for her apartment, otherwise where would she live on her days off?
9
@Randall. Your math is only correct if you are figuring it as if she worked 8 hours in a day. Figure it as 24 hours a day and, yes, the annual amount is the same but hourly, she makes around $11 as the article states. As for "room and board" she has to stay there as a condition of the job; it is not a benefit. She still needs to pay for her apartment, otherwise where would she live on her days off?
2
@Randall
It is a compensation issue, though. Were Marjorie to have adequate time off to rest, recharge, and enjoy her life, the family would need to hire at least another aide for a full shift per day.
My fantasy for my own old age involves living with a few friends and a few aides. Ideally that would help with the work load, as heavy work could be shared and daily jobs like laundry and cooking could be handled more efficiently. (Imagine if Marjorie was only responsible for prepping lunches, or only cooked every third day.) It would also help with isolation and loneliness for the caregivers as well as their charges.
6
I can’t speak for Medicaid, but we did our best with two grandparents to compensate fairly, offering well over twice the rate mentioned here. We also helped with certain emergency needs in the personal lives of our workers. We also limited the hours to eight to ten a day.
8
Everyday I thank God for Aila, the aide who is with my mom-in-law 24/7. My mom-law-law is happy, clean, fed and safe in her home. The house is spotless and Aila is so very caring. My mom-in-law is 104 and Aila has been with us for 3 years. Although she is frail and has some memory loss, she is happy to be in her own home. Grateful every day for Aila and all the aides who cover for her when she takes a well deserved day off.
28
@Kathleen mardiguian: Lucky you have funds to afford this care. Many don't.
8
My brother and I were involved with caregiving decisions for both of our (divorced) parents. Our Mother was diagnosed with Alzheimer’s at 73. Because of her personality, we agreed that an in-care facility was the best choice. She moved into an assisted living facility in Boston (my brother’s home). We were lucky to find an amazing dementia focused facility where she remained almost the rest of her life. My brother visited her every day and I made trips regularly (to support and assist).
Our father, a New Yorker, remarried. When he turned ninety, his body ‘gave out’ and his wife was incapable of caregiving. They had long term care insurance and were determined to stay in their home. We worked through an agency to engage 24/7 care. The structure however is different. There are 2- 12 hour shifts. It costs a bit more but allows for closer to a real life for the workers. They work 12 of 14 days (their choice). The wonderful woman who works the day shift, Yvonne, was there from the beginning. To say she is an angel is not giving her enough credit. My father adored her & I consider her a member of my family.
We were incredibly lucky; both our folks had financial resources. Most people do not have this luxury. Neither Yvonne, the other women who worked at the house nor the wonderful caregivers in the facilities my Mom stayed in were compensated appropriately for the work they do. An outrage.
41
My mother had a brain tumor operation shortly after she finished her training to be a nurse. The operation left her with very poor short-term memory so she had to give up nursing. She spent decades working as a home aide doing the kind of work described in this article.
I have deep bitterness and resentment that she worked so hard--often for people in better health than she was--and was not paid enough to cover basics. This may be TMI, but it's important that people understand what it means not to be paid a living wage. We couldn't afford tampons. I had one bra from the time I was 13 until I was about 17 or 18. My mother couldn't afford her medication and developed serious health issues as a result. My mother was on call and hardly a night went by that she slept uninterrupted.
Right now, we are putting the burden of elder care on the least advantaged people in our society because we can get away with it. In the same way, restaurant servers and other workers who lack power are the ones to have to pay the real cost of our love of dining out. No one else's income is up to the customer. There has to be a better solution.
An idea from Europe is group home care. Carers are paid a decent wage and elders who can't afford to pay it go into group homes where more able peers are able to help with small tasks around the home and supervise certain activities. Caregivers work shifts so that one worker isn't stuck with the burden of providing all or most of the care.
138
@Ant
Group homes with several caregivers rotating through is an excellent idea!
23
@Ant
The idea of having to live in a group home with people I don't like (I like very few humans) is bad enough. But to be expected to do the "small tasks" that others -- unlikely to be any peers of mine -- cannot accomplish is beyond mere chutzpah.
3
@Rea Tarr You have the option of continuing to live alone--if you can afford it. But my attitude is that it should be illegal to expect workers to pay for your care by donating their time. If you don't like my idea, you're free to come up with your own solution--provided it doesn't involve exploiting the most vulnerable workers.
As for "small tasks" (otherwise known as taking care of ourselves), anyone who shares accommodation does them. Even my laziest roommates have not kicked up the kind of fuss that you have! In fact, as a member of the generation where many never expect to own a house, I have to say that your response goes a long way towards solidifying my resentment of the generation that had affordable education, healthcare, and housing, and then made these basics unaffordable for everyone else.
If you cannot afford to pay a living wage to a caregiver, then you should have to come up with an alternative plan.
13
To the writer Andy Newman, any possibility there can be a follow up on the lives of Bob and especially Marjorie. It would be terrific to hear if this working arrangement changes for the positive and extra help and better living wages occur and Marjorie can go live her life again.
31
“but Bob’s family is deeply grateful, and that counts for a lot.”
I would be grateful to find someone to do what this lady is doing for 10 bucks an hour. I also had to put my brother in a nursing home a while back after a stroke. The first thing that hits you when you walk in is the overwhelming smell of disinfectants and deodorants. Next is the sight of some of the people, some of whom are mobile but as you pass rooms you begin to see the huge numbers who are not and are confined to beds. It is jarring and unforgettable. Luckily my brother recovered and is back living independently. On the other hand I would not want to be in one but on the flip side I certainly don’t want to burden my family with trying to keep me at home. The lady in this story sounds like a regal human being and I wish her the very best in her future.
22
And yet again, somehow our economic peers in Europe manage to get this done, safely and humanely.
32
I think if we could as a society bring these situations out of the shadows and provide a supportive structure for caregivers like Marjorie, we'd be well on our way to alleviating a lot of fear, pain, and private suffering. ...This article is a good start..
26
So by some basic match, Marjorie earns 52k a year, but that means family pays over 75k. Who is taking the difference? Would another 23k a year make her better paid without coating the family more? That's after tax, they have to earn 100k to cover it. shouldn't the family be able to incorporate and take that as a full deduction before their own taxes?
3
@AC Not sure of the total difference, but some needs to go to the relief help and maybe some to supplies.
4
The extra money goes to the agency that employs her. I certainly hope they are providing her with benefits, and reasonable time off seems like a good place to start. Health insurance would be next because the unrelenting stress of this situation would erode a saint’s health. And Bob, while obviously very challenging now, will only become more so as his Parkinson’s and dementia progress.
9
My husband and I have been through this with our parents. We are both health professionals. No one, not a family member or a home health worker, can or should do this 24/7. Elders decline mentally and physically, sometimes over a long period of time. sometimes quickly. My mother had Alzheimer's and my father had Parkinson's. She was a nurse, had long term care insurance, and told me that eventually I would have to admit them to a nursing home. After doing everything possible to keep them at home for as long as I could, I had to do just that. I cried. My father benefited from the socialization and my mother could wander safely at night. It was and is a good place. Long term care insurance paid for part of the cost, and their SS and pensions, and rental income from their home, covered the rest. He died after 3 years, and she is still alive 9 years later, and has been very frail for the last 5 years. She gets excellent care, but as costs increased, I am now spending down her small savings, which was my father's life insurance.
23
@Kathleen
Most people don't realize that every long-term care insurance policy has a daily benefit amount that the insured chooses at the time the policy is purchased. My mother-in-law's policy pays $330 per day. However, her care costs only $200 per day. The unused $130 per day remains in the policy for future use. She has zero out-of-pocket expenses for her care. We're saving nearly all of her income now in order to boost her investments in case she outlives her LTCi policy's benefits.
I'm going to comment from the perspective of those who cannot afford round-the-clock caregiving, yet whose modest savings prevent them from receiving state help (IHSS). After a massive stroke at 59, my husband quickly recovered his physical strength but had little sense of balance & was mentally incompetent: he could not feed, clothe or toilet himself, etc. The hospital made it clear to me he had to be watched every single minute. His needs were so great that no nursing home within a tri-county area would take him (even for $5000-7500 a month!). I could not go to the bathroom myself without taking him with me so I had to get part-time help. (The physical, not to mention emotional, burden was such that had I been in my 70s rather than late 50s during those three years I probably would have died before my husband.) But so much for self-pity; my gripe here is with the agencies who are making money hand over fist. I was paying $23 per hour 2011-2014, of which kind, strong, but basically untrained "Paul" received $12. Mind you, the board & cares (none of which would take my husband when they saw he "presented" more as a brain injury patient than a stroke patient) can also be rapacious. It's all too distressing...
20
@Karen As the former owner of a Home Care Agency, sadly we were not making money hand over fist, despite a similar spread. You have no idea what how expensive it is to operate an agency, at least in Washington state-- the overhead would shock you, from health insurance to sky high workman's compensation costs to paying people decently for administrative work. I could not have afforded my own agency for more than a few hours a day. I personally plan to either move to Mexico or off myself and/or my husband if/when we get to that point.
17
@SE
Suicide/Homicide is not a plan. It's denial.
PCA's are shamefully underpaid, even when they're not live-in, like this poor woman.
We had a part-time aide when my mother was dying of cancer, and that poor woman had to come to work every day knowing she was going to start her day helping me get my mom's diaper changed. How would you like that, for not much more than minimum wage?
PCAs are critical caregivers in many cases. They should make a living wage.
17
@mosselyn
....but you were free to give her additional pay...........
5
@NS How can you be sure that mosselyn could have afforded to give the caregiver additional pay out of pocket?
The home-health-care industry is one that is screaming for unionization.
42
@r mackinnon
So they can strike for better wages and benefits? How would that work? Unionization is not the solution in this case. Social support is the only hope. If we´re not all willing to pay to have our frail, sick and elderly taken care of (including children and young adults, by the way, who can also end up needing round-the-clock, intensive care), what kind of society are we? What kind of people?
As someone else has said in response to this article, this is not a problem that can be dealt with by individuals, as an individual problem. How in the world would you ask a unionized caregiver to leave her helpless client, who subsists on social security, with no care while she´s on strike?
5
if she's there 24 hours a day, she should be paid for 24 hours. bartenders get to sue restaurants that don't pay overtime after properly, why don't these workers, who are significantly more valuable to society, have the same rights? seems to me that she is owed a ton of overtime.
Thank you for your hard work and dedication Marjorie, the world needs more people like you.
62
I think it's fair pay. The workers get room and board, and keep everything else. it's certainly a tough job, but a lot of these elderly people are living in social security, so it's quid pro quo - either the help gets paid a lot and the elderly are out of the money, or the help gets paid fairly and has a consistent income for some time so long as they are good.
Also, just think about how many elderly people are actually being taken advantage of by the help, that's a more serious problem.
4
@Adjit - So will you avail yourself of this service if you need it one day?
5
So when are you going to sign up to do this job?
6
@Adjit*** she is there alot but has her own apartment
1
I have known that I will do everything I possibly can to control my ending. If I have a severe stroke or disabling accident, I have my DNR, DNI, and instructions to age-mates who feel as I do. I'm learning to meditate (not relax, really meditate), and I've planted Arnold Mindell's book, Coma, in with my findable file. I have instructions to play music and give me books on tape.
Of course we can't control everything, but I've already researched methods of suicide even without pills. It will be sad, and scary, but I won't go into denial if I can help it. I won't put my kids through it, only to have them lose me and their inheritance.
As per Buddhist masters and "Tuesdays with Morrie," if I must learn about giving up control, I'll hold on to loving my care taker/s as my go-to feeling and hope for lots of pain killers. It's of course not that easy, but there's something to learn in everything--one might say, especially in the painful experiences. What it's all for......must be something. If there's nothing after death, well, then, it won't be painful.
27
I am an 82 year old woman who has been caring for my 78 year old husband for more than 10 years. My husband has several medical conditions which require constant care as he is unable to do many things for himself. When he falls, I have to call 911 to have them pick him up as I do not have the strength to lift him up. I receive no salary or tax breaks. Those of us and there are many-mostly women - have no union to support us or fight for us nor do we receive a salary, compensation or tax breaks. Many of the caregiving women are still working themselves and must divide their time between their jobs and caring for their ailing family member. We are slowly burning out emotionally and physically as we continue in our role as caregiver. It is time for Congress to focus a little less on child care programs and more on the role of family members who are the caregivers in a population which is aging and requiring care.
51
@SRH - we can do both! We can have suitable, adequate child care programs (for your future gerontologist) and financially and socially support the family caregivers. Making this a political choice is abhorrent and further divides us as a society.
31
As a very active 83 year senior ,my wish is to go to bed one night and an undertaker will take me away in the morning.Short of that we plan to age in place.We have an apartment that is suitable for that,a family that is very much involved and the resources to pay for it. Will be looking for a person that needs housing and income.My concern is for those 25 million seniors whose sole income is their SS check
35
For nearly twenty years now, I have been the sole caregiver for my wife, who is totally and permanently disabled from a stroke she suffered in 2000. I can empathize with Marjorie, as I too am a virtual prisoner in my own home, and now at age 66 certainly not living the life I imagined my retirement would be. But my wife does not suffer from dementia or incontinence, she knows who I am, and most importantly knows what we mean to each other. That goes far in compensating for the losses. The Marjories of this world can’t be paid too much for their sacrifices, yet we as a society treat them with contempt on a personal level, and with outright hostility in an institutional sense. I wish that our elected officials could do what’s right by Marjorie and others like her without experiencing what I’ve experienced the past twenty years. However, that, sadly, appears an impossibility, as we shuffle our “used” people off to cold, impersonal institutions, out of sight, where the Marjories of this world are few and far between, and underpaid in virtually every sense of the word.
93
What most people don't know is anyone who assists in hiring or coordinating with home health care professionals hired privately by your parents is that you are considered a legal employer too. After our parents passed a former employee took us children to court for back wages, and we were legally responsible. Never in a million years did I think that helping my parents would land me in court and cost me thousands of dollars. It's a mess out there.
12
@Laura Miller That is what happens to anyone who becomes a "responsible person" vis-a-vis an employing entity which in your situation was your parents. It isn't the family relationship, it is that you had disbursement authority over their financial affairs and knowledge of the transactions taking place. It may have been a durable power of attorney or joint signature on a checking account. FYI the same thing is true if one is the person who does those things for a small - or large - business even if that person has absolutely no ownership interest. Federal law regarding employment tax and deposit of withholdong tax is clear and rather punitive on this.
BTW, Courts do not usually rule lightly on these things; I imagine those workers were actually underpaid. I am glad to hear that Minnesota has decent worker protection laws on this front.
8
@Laura Miller - If the workers were owed back wages, why shouldn't they get them? And if you were the heirs, who else would they get them from?
3
Floored by Ms. Salmon's skills and only hope that my family will be able to find someone like her to take care of my mother when the time comes, and the time is coming. It scares the bejeebers out of me.
26
As hard as it was we put my dad into an assisted living facility. We tried the home health aids for over a year but he wasn’t getting the level of care he needed. He’s fortunate to be able to pay for assisted living. He’s in a nice place and is safe and supervised and has a social network. He and his friends chit chat about the the good old days.
15
We need more than a million Marjorie’s with her same mind-set AND the ability to pay her/them 4 times as much as she is currently receiving. God bless her for her attitude and goodness. How fortunate for Bob and his family to have her.
26
I swear to God I never in a million years thought I’d grow old.
Now, knee deep in old age, I believe.
I’m not happy about this progression, not at all.
Do not resuscitate. !
Get the morphine drip and turn it up all the way.
60
@New World
Where do you keep your advanced directives? Do you have a designated power of attorney in place with someone who lives closeby, in the event of a catastrophe? If so--and if more--would you please share the steps you took, professionals you've seen (papers and all that) to ensure that your wishes will be followed--or even SEEN by someone? So many of us feel just as you do, and those who don't probably haven't read this essay! Thanks for posting.
2
Elder-Boomers? A 77 year old would be born in 1942. Boomers are born from 1945 on. Bob's life must be terribly lonely. Better off in a Senior Care facility.
3
@Am Brown
If someone tried to put me into any facility full or unlovely, puling seniors, odors of rot from both residents and the foods served, yowling and inane television blasting everywhere, visitors bringing their ideas of fun-for-the-aged and lumpish staff who address me by my first name I'd do my best to burn the place down. Be warned, people.
3
If Stephen Miller and Trump get their way, the Marjorie’s of the world do not get to immigrate to the U.S.
And yet, strangely, the Republicans draw their support from the older generations who cannot put two and two together.
83
@Honeybee Maybe the real issue is why we allow businesses to exploit immigrants for slave wages in the first place? I haven't seen any repercussions for those who employee illegal immigrants And it looks like those big corporate tax cuts were used mostly to buy back stocks. Not to increase wages or benefits. Trickle down economics has never worked. Those who could afford to pay their workers fairly and offer benefits won't. Smaller government and deregulation is a fine concept if it actually worked. But there will never come a time when people will make decisions based on anything but the accumulation of wealth. And sadly, those singled out for taking advantage of the system are usually the poor. It is never the wealthy and greedy. Listen to the hateful rhetoric at the Trump rallies. The research on wealth disparity is alarming. This is the world we live in.
4
My friend is a home health care aide. She's sixty years old, and she is white. She's kind, capable, intelligent, dedicated. She makes $15/hour. She needs knee surgery but can afford neither the operation nor the time off. So she's forced to hobble around in pain while helping others. Many of her clients are wealthy.
47
@Independent-what can we do to help her get her knee surgery, does she have a Go Fund Me site?
No one at 60 or any age who needs knee surgery should be enduring that kind of nonstop pain and giving full time care at the same time, just not right.
1
This is a sad, horrible reality for many home health employees and the long-term care industry in this country. The employees are..."professionals who are paid low wages." I'd also call this employee, Marjorie, a saint.
16
My mother does this work. She’s a middle aged immigrant woman from the Dominican Republic. It was the only kind of work that we could find, though she is a brilliant salesperson. I’ve seen her struggle with the terrible pay and lack of respect for her profession. The pay is so low and the work so insecure, she always keeps herself active in 5 side agencies to make sure she can be employed in case one of her jobs lets her go unexpectedly. My mom loves her work, when she cares for older patients, it’s like she’s caring for her elderly parents. My desire is for this work (and teachers, and nurse aids) to get paid living wages. Maybe this is not the case because all things feminine, like care work, are underpaid, undervalued or actively despised.
51
I'm 59. If I live to the age of 75 and I still have my mental faculties, I will do a full assessment of my health. If I notice the beginnings of dementia, I will start to stockpile the necessary medications to end my life with dignity. I refuse to live like this just because I'm aging. Bob isn't living. He's existing, thanks to the wonderful work that Marjorie is doing.
Home health aides should form employee owned companies, with the excess profits turned into an ESOP (Employee Owned Stock Options). The profits of their labor should be going to THEM, not shareholders.
44
No one should be doing what Marjorie is doing 24/7, 365 days a year and certainly not for less than what the family was paying when they had him in a home. The family should hire at least one additional caregiver and pay both of them more. But how many seniors make enough to be able to afford even $75,000 a year? Let alone what caregivers really deserve (and the benefits they deserve)? Even if they were to hand over their entire monthly income, most older Americans wouldn´t be able to afford a caregiver. So how should we deal with that?
27
@JJ -
" The family should hire at least one additional caregiver and pay both of them more. "
What makes you think they could afford that? They are out-of-pocket $75,000 a year, and you want them to hire a second person and pay both of them more? So over $150,000 a year.
The article doesn't say what sort of practice Dr. Dettmer is in, but if he is a primary care physician, the average annual salary is around $200,000.
It seems as though many commenters think that all physicians are rolling in money, but that's not the case. Much depends on the specialty (if any).
6
Dementia. If we can solve that problem we will go a long way to solving problems of Bob, of Marjorie, the government and taxpayers, and our own personal fears of aging.
12
Yikes, who would want this life? How do poor people manage this situation? These are questions no one wants to contemplate. Like guns there are no solutions readily at hand. Neither the Democrats nor the Republicans seem interested in resolving these two problems. Donald's solution is "let them eat cake."
9
I have worked for several years as a licensed medical social worker in and out of hospice pts homes and many home health pts homes tending to doc's orders and giving solace to families so they continue to bear up. I have nothing but huge respect for people like dear Marjorie from whom we, the public, in the United States of Pain and Sorrow, expect miracles. Dear Marjorie, you are a jewel and a truly lovely woman with strength and courage beyond what we , the public deserve. Thank you for your work, --- the article, the smells and sights and out of control nature of this work is crystal clear. YOU are a consummate professional. Again, simply thank you, you are doing God's work.
38
These women and men are unsung heroes. We had many live in home health aides who took care of my mother for the last years of her life. Almost all of them were dedicated and hard working and became our extended family. (The ones who weren’t so good didn’t last long). They deserve better pay and better working conditions and time off when they are available 24 hours. The sad part is the agencies that supply the help make most of the money while the hard workers make very little.
22
I hope Bob's family remembers Marjorie in a meaningful way. Words are nice but that's all they are.
27
It's called "trickle down", and a trickle it is. Really not even a trickle, but a very slow drip. Meanwhile, the top 1% still hasn't had enough tax cuts to make them happy, including executives in these very industries.
23
Life without real consciousness, personal value and dignity is not life.
Marjorie is a beautiful human being. She deserves our admiration for her heart and dedication. But this story also points to why people need to demand changes in laws based on arbitrary religious tenets. We need to live in dignity and have the right to choose death when life is no longer meaningful.
If such religious nonsense is not rooted out of our laws, we will not end up like Bob in the care of a wonderful human being willing to sacrifice her life to our needs, we will end up in the hands of someone who will leave us in dirty diapers, unfed, unclean, locked in a room.
Would you take Marjorie's job? No? How much would you have to be paid to do what she does? Even if you got double her salary, what kind of life could you live?
And on that note, what kind of life is Bob living? Would you want that for yourself?
52
This industry is in serious need of workers. I'll not dispute that at all. I've seen it across the country in my business travels. However, I will say that the market / labor force dictates the wages. The pay per hour will increase as demand Continues to rise. Be patient, you'll see, rates will rise.
In the long run, I suppose they will. And in the long run, we are all dead.
10
@Michael
Except many on the demand side cannot afford it. You are treating human needs as no different from a desire for the latest gadget.
1
Why has there been such an increase in private equity investment in home health care? As of 2016, 80% of home health care agencies are for-profit. Follow the money, which isn’t flowing to the care workers, or the patients. A healthcare “emergency” is justification for not paying for hours worked? Sounds like the results of very successful lobbying...
25
Calling someone a warden isn't a compliment to this home health care aide. It is an insult to the profession. Yes, HHAs should be paid more but until the government is willing to raise Medicare and Medicaid reimbursement, agencies have their hands tie when it comes to raises unless it is a private care case.
4
This is upsetting, frightening, and eye-opening. No one should have to live and/or deal with this. May we some day realize the wisdom of having right-to-die laws.
37
I don’t understand the role of ‘right to die’ laws in respect to a story about poor wages for health care workers. Are people suggesting that Bob and/or others living with Alzheimer’s are better off dead both for themselves and as a solution to underfunded elderly care? This story illustrates how the quality of care an elderly person receives effects the dignity and quality of their life as much as the disease they are suffering. The fact that Majorie assess the situation and proactively changes the dynamic eases the strain of this disease both on Bob and in turn herself. I’ve seen first hand how draining this type of constant care can be for a care giver and wish that not only were she properly paid for her work I wish she could also receive support for the emotional and physical toll this work demands. As we live longer lives more and more people will have to live with such diseases. Do not let market forces dictate that if we are ill we would be better off dead than being cared for. I have no religious objections to right to die laws, but they have no place in a discussion of the burden of elderly care.
8
@Rebecca Rogers yes the discussion of right-to-die is relevant because I’ll be older someday and would not want to live like Bob and have Marjorie tend to my every need at all hours with little to no sleep at paltry pay. I want Marjories of the world to have a better life and retirement fund.
7
I would only hope that how one wishes to live in inevitable old age and illness will be the only consideration when considering the ‘right to die’. I hope death will never be contemplated as a way to lower one’s burden on society. I guess it will depend on the society we live in. I hope that your view is not simply the more realistic one for our times.
1
My grandmother moved here at 56 and did this type of work, first in jersey but mostly in south Brooklyn, for 20+ years.
Many of my aunts followed her in this line of work. It’s back-breaking. I grew up seeing my aunts leave their own children to do live-in work, but with little education and skills it was one of the only jobs available.
At 102 years old my grandma now has family taking care of her now. At her 100th birthday party, some of her former clients family attended. Says a lot about the care she provided others.
72
Bless your heroic grandmother and the caregiver in this story. When my mother-in-law was in hospice care at home, she had lots of help from family, but we could not have gotten along without some wonderful caretakers. My own mother died recently at 95, and had a wonderful paid companion who came in several times a week to spend time with her. Mom was generally able to take care of herself and was fully functional mentally and socially, but homebound, and the companionship and assistance of her aide during our working hours resulted in a much happier life for Mom and all of us during her last two years. The women (and, I assume, some men) who provide these services are heaven sent.
7
Modern medicine has allowed people to live too long. Until we can find a cure for mental decline, I don't know if all of these life-extending medical advances are worth the effort.
76
If we are to live in an egalitarian society, every family has to their share of caring for elderly people. Instead, it seems like everyone wants cheap servants to do this work. It would be difficult to do work like this for you’re iwn parents. Imagine doing work like this for someone else’s parents.
Ditto with childcare.
People are talking about increasing the pay of home health aides.
I think society has to recognize that people are responsible for changing their children’s diapers and their old people’s bedpans.
7
@As
So in other words, this important work, almost exclusively done by women, should be uncompensated.
36
@As and they can pay their mortgage and bills how, exactly?
9
If only it was that easy!
7
I suppose someone has to state the obvious: this is the richest country in the history of the planet and we don't provide adequate medical care for people.
If we had a national health system, families would not go broke paying for end-of-life care. They could leave that money instead to the next generation to build family wealth.
We should stop taking advantage of people with cheesy pay and worse benefits so corporations and rich people can get tax breaks.
127
When I was looking for care for my dad one agency told me that I wouldn't even pay minimum wage. They didn't explain it fully but it sounded like I wouldn't pay for hours that the live-in was sleeping. It creeped me out. We ended up going with a different agency and paying about 25 an hour but only 10 of that reportedly went to the workers.
2
@Alan
You are pointing out one of the issues. The hourly pay - charged at individual or at Medicaid rates- is channeled through agencies -- most of which are for-profit, and obviously they take a huge chunk of the payment.
18
With all of the discussions about a $15/hour minimum wage, why hasn't this happened in the jobs of caring for the elderly, special needs persons, and children? I think the attitudes are legacy thinking from the 1950's:
1. This work is women's work and, therefore, need not be compensated for a living wage because all women are either married with a bread-winner husband or still living with their parents.
2. It is a "labor of love" and we don't want to have people in it "just for the money."
3. This work was performed in the 19th century and earlier by slaves, so we have no obligation to compensate "human chattel" on par with free people.
71
Marjorie is an angel. That said, I have had to deal with aides for my mother after a major illness that left her temporarily immobile. She was first in a renowned rehab (nursing home) that was said one thing, but provided very little care due to understaffing. I brought her home as soon as possible. At home she had in-home physical and occupational therapy (a plus), but the home health care agencies were very hard to deal with. The first charged $27 per hour (I had contracted them to be at my home 10 hours a day, 5 days a week so that I could go to work...I was the night aide). The aides, first were paid $11 per hour. I installed cameras in the house (and let them know); the first spent most of the day outside smoking and did not help my mother at all. The second one came late (which meant I was late to work) and was kind to my mother and then stopped showing up and told nobody...leaving me in a bind. The third was almost as old as my mother and couldn't climb the steps (my mother was on the second floor of my house) and was afraid of the chair lift so she didn't last long. The fourth one was caught rummaging through closets and china cabinets downstairs on the first day ("Hello, I said I have cameras!). I finally found a gem outside the agency through a friend and paid her the same $27 per hour....she now comes a few days a week and helps my mom with errands, takes her shopping, etc and to appointments while I am at work. I am still the night aide.
39
We put 4 parents into 5 different nursing homes in two states. By far, the most skilled and empathetic workers were immigrants. These were not low paying jobs (this is one of the items we checked beforehand). Americans had a high turnover rate; they either couldn't handle the body fluids, dementia, and immobility, or they got fired for abusing the residents.
The difficulty of finding health care workers in rural America and UK has been widely reported, and often blamed on failure to make immigrants welcome in those areas. I call this karma.
102
@Steve My grandfather has home health aides because of Alzheimer's/dementia and while in rural and small town Western Pennsylvania his home health aides are white, I notice that all of them are women. Apparently this field is skewed female. Heavily skewed.
The obvious dilemma is that these care givers don’t get paid enough but for the vast majority of families the cost of full time care is prohibitive. It seems like an intractable problem. We recently went through this and the stress of the cost on my relative (terminal illness not dementia) weighed on her daily.
22
@Concerned CItizen One thing that seems not to have been noticed: while she is expected to spend the night, she also has an apartment of her own in Brooklyn. It's only reasonable that she have a place of her own to go to on days off but it means that "room and board" is not quite an accurate description of the situation.
11
Marjorie's salary is approximately $58,000/year plus food and room and board. Not a bad salary I would say.
Incontinence appears to be Bob's primary hands on care need in addition to medication management, bathing and dressing. Bob's primary healthcare providers should address Bob's agitation and offer Marjorie strategies to deal with him.
The amount of money paid to these workers should be negotiated and contingent on the amount of care that is needed. I know someone with rheumatoid arthritis that needs a care giver for meal preparation, bathing, dressing, medication management and toileting. All told about 5 hours of assistance/day. It makes more sense and is less expensive to have someone in the home 24/7 at $150/day than go through an agency.
7
@Jan You think $58K is "not a bad salary" in the Bay Area? That's half the average pay here and those people can't afford housing. Stinting on medical care is not the best way to save taxpayer dollars.
32
@Jan $58K per year in the New York metropolitan area? She's still paying rent, for obvious reasons. The job has no security why would you give up your apartment. She is working 24 hours a day doing not very nice work. So let's be a little less judgmental and a little more realistic. You live in the Bay area. As expensive as New York. Perhaps a little empathy for the situation would be helpful, don't you agree?
95
@Jan, That is for working and/or being available 24hrs a day...So, maybe good on paper, but to be in someone else's home being available at ALL times is far from 9-5. And as someone whose mother needs that 'about 5 hours a day', her care givers then are juggling managing several people in various homes/driving/drive time/etc.
This is a problem for both sides of the issue and gaining strategies for dealing with their 'clients' is only one small piece of this.
15
First, thank you Andy Newman for this beautifully reported and written story.
Second, Marjorie Salmon, you are an angel here on Earth.
Third, this is why my daughter knows my wishes at end of life. A morphine pump with no limits.
119
@Blue in Green
Unfortunately your daughter cannot decide on the morphine pump. Doctors do and they will not approved it.
14
@Lea It depends on the state and the physician. It's becoming more open nowadays but in fact physician aid in dying has been around for as long as doctors have been around. It's not discussed much because up until recently, it was illegal. But if you know any MDs intimately who have worked with the chronically ill and elderly, many have stories of their colleagues or have personal experience of helping someone die by giving them morphine pills with the "warning" that taking too much can result in death. It took and still takes an incredible amount of trust between family and docs for that to happen but it does.
Also, you may not be aware of the "double effect" which is legal and morally acceptable -- even by the RC Church. The effect refers to a situation where alleviating a person's severe pain or other symptoms may cause death inadvertently. For example, a patient with incurable pancreatic cancer and horrible pain may be placed on a morphine pump. If that patient gives themselves enough morphine to relieve the pain and the decreased respiration from the morphine happens to result in their death, it's OK.
2
@Concerned CItizen. also, you would need to be aware enough of you're own condition to know to use it! Assisted suicide must be brought into consideration...
1
God love her, this woman is a saint. Most people wouldn’t last a day in her job. I include myself in that assessment.
62
I have much respect for care givers, paid and unpaid. I took care of my folks, not working for periods of time until they died. I was not paid. This is a hard job - physically and emotionally.
End of life is a time when child becomes adult (me) and parent becomes child. I connected with each of my parents, before they died, like no other time in my life. I learned so much about them and me.
27
The original arrangement (free room and board and a small daily stipend) should continue well after Bob leaves.
This family has assets (a house) and Marjorie needs housing.
Allow her to remain for free and pay her a weekly rate for caring for the house. Also, allow her to do other work so she can build some savings for her own retirement.
Given the level of care she provides, I would think at least 2 weeks for every month she has worked.
37
@Can Marjorie has an apartment. She doesn't need housing.
2
Thank you for bringing this important topic to light. Here in the Deep South, almost all of the people who do this back-breaking, demanding work are black women, most of whom are elderly and aren't getting a lot of Social Security, so they must continue to work. I have wondered about this situation for a long time, as I have seen this in many families but have not had to go through this tragedy myself. This is an issue that needs attention now. This is horrible for the person with AD but harder for the families and hardest, I think, for these caregivers. This woman and others like her are saints. But should we allow their kindness and desperation to put them in such positions? What happens to her health in the mean time? Is she hypertensive, diabetic? Does she get decent sleep? Exercise? Does she have arthritis? Other chronic conditions? How does the stress affect HER? The situation is exploiting and contributing to a gross inequality, as well as a deficit of care.
233
In the past six years, we’ve had four parents die. All required extensive caregiving. Three had a combination of care from us and eventually nursing homes; one we were able to care for in her home until the end by tag-teaming with my husband’s siblings and hospice. (She was also the only one who didn’t have dementia, which made her care much easier.) None had in-home health care aides because we couldn’t afford them. That’s the irony here; even the low wage of $160 per day is way beyond most of us.
I suspect many of you blithely judging this family haven’t been through this yourselves. Navigating these years with our parents (while working full time, in part to continue paying for their care) is the hardest thing we’ve ever done. There’s no guide book and precious little good advice. I’d love to see more helpful brainstorming about addressing the problem rather than just tearing down the folks who are living it.
And yes, Margarie is a saint. God bless her.
419
@Twitchly
Exactly! Nobody knows what the situation is for Bob's family. Kudos to them for finding a good care taker for Bob and not leaving him to rot in some nursing home.
If you haven't done it you can't possibly judge. Caring for an elderly relative is hard work and requires skills and patience and respect for the people they 'were'.
16
@Twitchly
In addition t god blessing her, (s)he should make sure she's getting paid what she's worth!
8
As a busy primary care general internist working at a "safety net" clinic in Manhattan, I can attest to the primal importance of home attendants for the health and safety of my frail patients. Whenever I sense that the attendant is caring and engaged in my patient's care--and the majority of them are!--I include her in the discussion and always thank them for their help. It is truly a grotesque tragedy that these people are treated so poorly by their various agencies. Because many attendants are immigrants (documented or undocumented), state governments and regulatory agencies feel they can treat them as chattel. It is a scandal.
256
@Tuckernyc I am a home health nurse in the Bronx and a good home attendant is more valuable to a patient’s continued health than any doctor or nurse (no offense but I think you’ll agree). They are, quite literally, lifesavers. They know their patients better than anyone, family members included. We are all indebted to them.
86
I am a geriatric care manager and I agree with you: a good caregiver is Everything!
4
During my father’s decline from Parkinson’s we enlisted a local agency in NY to provide support for Home Health Aides, the agency’s fee was $26 per hour, however, the extremely dedicated aides were paid $13 per hour and received no benefits like healthcare. I didn’t see the value of the agency’s markup. We supplemented the aides with “off the books” payments however we could because they were so good. I knew we were lucky to receive such wonderful care. Compassionate caregivers like Majorie are at odds with a regulated agency system that provides no training, nor benefits.
58
@Charlotte
Had same experience with my parents. The agency’s share of our payments seemed unfairly high. But unlike Marjorie not all the aids were suitable for the job and my parents were very easy clients. We had to request replacement caregivers regularly (in our case the aides worked 8 hour shifts). In my opinion the poor hourly wage is the problem. If the job paid a fair living wage perhaps the supply of aides would increase. And given the demographics of the population we’ll be needing more aides in the years to come.
12
Andy Newman, you perfectly captured the "daily rhythm" and enormous challenges of dementia home care. I've known a dozen or more immigrant health aides like Marjorie Salmon who have attended neighbors or family members like Bob, right to the end. Where do women like Marjorie find the fortitude or resolve? Is there a greater example of humanity? How is it even possible that health aides still do not earn a living wage? Will any of our presidential candidates elevate these issues, issues that may compound with new immigration policites? Where is the training, the support, the respect for these incredible men and women caring for our most vulnerable elders?
82
Majorie is a saint. But many of the elderly are not as fortunate as Bob. Many elderly do not qualify for Medicaid benefits because then are not poor enough and are not informed about Community Medicaid. Those lucky enough to have saved money become poor quickly. All of that stems from our country & government not caring for the most vulnerable, the elderly, those who can’t speak for themselves. Treating the elderly with disrespect begets paying those who care for them with disrespect as well. The system needs to be changed, elderly folks & their care givers should be treated with respect & dignity.
30
The two Caribbean women who ably and compassionately cared for my late aunt (one woman four days, 24-hours a day, and the other three days) bought houses and reared kids and sent them to college. They were married to men with jobs, and of course that helped.
It always does.
5
@B. Yes lucky for them they had successful, healthy hardworking husbands and children with intelligence and no special needs. Anecdotal stories like this are often used by conservatives and libertarians to justify a system that is broken by telling a happy story of a few people who managed to thrive. It absolves them of guilt that they turn a blind eye towards the more common realities- caretakers in poverty, with health issues of their own, with children with health care and special needs, broken families and unspeakable stress. The system is broken and a few happy endings doesn’t change that.
9
This is a sad way for the elderly man and the home health aide to live. They are too isolated and immersed in the dismal strain and boredom of each day.
Perhaps the family can find an adult day care or senior center where he and his aide can go and be around others for a few hours a day.
52
Adult day care does not and will not care for patients with even the mildest dementia.
1
Home Health Workers are truly angels. They deserve more income and respect for the hard work they do.
23
During the final 12 years of my mother's life, starting in 2002, I hired both college students (nursing and health-related majors) plus Home Instead agency which is the largest in world, not just the US. As my mother's health declined and the home aide's work increased, I raised their wages until I was paying $175 a day from 2012 to 2014 with ALOT of downtime so the students could study and agency workers could watch TV with my mom and me. Although I always had my own condo, things got so bad that I moved in with my mother during her later years. We paid over $50K per year 7 years ago, and the aides never had the type of demands like the aide in this article who deserves way more money for her work. I support equalizing wages of RN's with home health workers and CNA's, since the latter two groups have much more demanding and unpleasant work than RN's who sit at the nurse's station charting instead of taking care of the patients. Most RN's make in the upper five figures and often six figures. Why not lower their salaries so the wages of CNA's and home health workers could be increased and equalized with the RN's?
My mother and I never got a dime from Medicaid, and it infuriates me that the middle class has to pay in the five and six figures to care for their OWN parents while being forced to pay massive taxes to fund the Medicaid program for people who did not save for old age. Unless someone is a Veteran or childless, their family should pay for their care.
10
@Susan Shapiro. Trust me when I say that the RNs would rather be taking care of patients than charting in the computer.
8
@Susan Shapiro I agree with the first part of your comments. But thinking that the parity will come by taking salary away from RNs is way off the mark. You have no idea of the work and schedules an RN deals with every day. It is not about comparing jobs but compensating the work fairly. This us a societal problem that gas yet to be addressed.
12
Um, no. There is a VAST difference in skill, education, and responsibility between an RN and a CNA and unlicensed HHA. Most hospital RNs have at least a bachelor's degree and many of us are masters-prepared. That is 4-6 years of school, on average, versus less than 1 year for CNAs and an indeterminate amount for HHAs.
I worked as a bedside RN on an acute care for the elderly unit at a major teaching hospital for several years. Yes, I depended on the CNAs who worked alongside me--I had to. But all of my patients received hands-on skilled care from me every shift. Who do you think was monitoring vital signs, administering medication, calling the physician when things went wrong or when a new order was needed, dealing with the pharmacy, educating the patient and family about the plan of care, providing emotional support, etc etc. That is on top of the care I gave in collaboration with the CNAs on the floor--organizing the patients' bath schedules, turning and repositioning patients every 2 hours, protecting against falls, and toileting. I'm sorry that your experience with RNs has been so limited that you see them as interchangeable with CNAs and HHAs, but I assure you--we take on high student loan debt (mine was >$70k) to learn our profession and we take on immense responsibility for our patients once in practice. Who do you think is responsible for the patient's immediate safety 24/7 in a hospital setting? Hint--it's not the doctor.
30
$160 a day plus room and board, roughly $60,000, is a substantial outlay for most families. It will only get more expensive when the home becomes too unsafe for an memory impaired person to live in and you have no other choice but a memory care unit also staffed mostly by low paid immigrants.
However Marjorie provides such kind and thoughtful full care, round the clock with barely a moment to herself, that her pay is beyond inadequate. Housekeeper, nurse, cook and yet she dabs deodorant and cologne on her charge and remains patient after most of us would have lost it. A toddler eventually becomes potty trained and self sufficient. Bob's situation will continue to go downhill. He may not remember the indignities of needing to be perpetually cleaned up but cleaning up an adult, who may at times be resistant, is far more difficult than cleaning up a toddler. Bob will continue to decline. Marjorie has my admiration but she deserves a wage the reflects the amount of work required of her. And since most of us cannot pay $160 a day plus room and board for the many years our loved one lives, we need a solution.
122
@Vickie
Medicare and Social Security should pay for this--they are the major safety nets for older Americans and this is by and large elder care.
Also--hospice rules should be changed so that patients with dementia or any other slowly progressing terminal illness can be enrolled long before the "last 6 months of life," which can be difficult to predict with dementia. This would allow for more comprehensive at-home nursing, medical, psychosocial/spiritual care as well as emotional support for the family and for Marjorie. It takes a village to provide high-quality care for "170 lb toddlers"--we cannot expect immigrant women of color who have no other real economic labor choices to do this all on their own, no matter how appreciative each individual family is.
16
@Vickie Well the family really isn't paying for board - Marjorie is living in the house where Bob is living. that cost is already being paid by the family. Plus, it seems that Marjorie is still paying rent on her own place - she'll need it when the inevitable happens. Doesn't sound like that good a deal for her.
5
@Vickie
What do you mean room? Bob's house is Marjorie's place of work where she is on duty 24 hours a day. Are you saying we should include our desks and chairs and heating/cooling in our office space as our perk/salary?
4
Thanks to those immigrants that are willing to do this type of hard work. When people get older we turned into a baby-like entirely dependent from others assistance. In the other hand, in several nursing homes... I have seen the elderly being abused, their valuables stolen. No accountability, from their peers. In many instances large nursing homes, keeping the elderly drugged in other to “keep” them quiet and under control. In California a quality Home Care can cost approximately from 5,000 to 12,000 dollars per month. SSI care homes doesn’t exist anymore. A place where the elderly will give its entire meager income to the facility. As the elderly population increases, and the number of workers are decreasing thanks to the inadequate Trump’s policies, we going to have more abuse and more deaths affecting the elderly.
17
We can all (or nearly all) agree that Marjorie and her coworkers deserve better pay, and we can advocate Bob move to assisted living facilities, but what we don't address is, who pays? As it is, only the indigent who qualify for Medicaid and the wealthy who can pay out-of-pocket can access either in-home or institutional care. All others--the majority--from the near-poor through the middle class, have only the options of relying on family (if there is willing and able family nearby) or spending down their assets until they qualify for Medicaid (that is, have impoverished themselves). As there is no consensus in our society about what we owe each other, it is not likely better pay for Marjorie or subsidies for institutional living will emerge from our political process.
22
@Eric I am reading a great book about the history of social security. Reading the history and philosophy behind the program I am reminded that it is possible for us to solve difficult problems collectively. The structure behind that program is sound (with the right leadership). It’s essentially an insurance program. We can all agree we’d like to age with dignity and not burden our families so perhaps we expand that program to include elder care. Actually funding the care would improve it. This challenge can be solved. My father ended his own life after a stroke. Stories like this explain why.
5
@Eric
Bob would not be able to enter an assisted living facility. He needs too much care. Residents in assisted living need to be able to do the 'activities of daily living' or their own self-care. Eating, bathing, dressing, toileting (including maintaining continence) and moving in and out of a chair, bed or toilet.
Yes they can get an aide to help them but at the same cost as Marjorie (or more) on top of the monthly rent for the ALF.
I hope that there will be a way to have my health care directive obeyed before it gets to this....
7
Sadly we all have met many Bob's (in one degree or another) in our lifetimes and too few Marjorie's; her salary should be doubled and a plan developed for respite/time off and caretaker support. Where is Bob's family? Home writing the check? Perhaps if the family members spent a few weekends a month caring for Bob, they could more fully appreciate the enormity of Bob's needs and the excellent care he is receiving. Also, it would give Marjorie desperately needed time away from Bob to have some semblance of a life. Regardless of pay, this situation is very sad for Bob and tragic for Marjorie. We should all earnestly hope that we don't become Bob. But if we do, let there be a Marjorie to care for us until the end. And I can only hope that Marjorie too, has a Marjorie.
51
My 67-year old ex-husband had a stroke 5 months ago. After 3 months in intensive care in two hospitals, and 2 months in a rehabilitation facility, he is home, and I am working full-time and taking care of him. His insurance didn't think he needed any assistance, even though he has an indwelling catheter and suffers from occasional fecal incontinence. I personally pay for a home health aide, $25 an hour from 7am-12pm, to help get him ready, change catheter bags, in the morning before I go to work. It's all I can afford. He gets around with a walker, but his balance is not 100%. I have been impressed with the several home health aides he has had. They are caring people, whom I depend on to keep him clean, fed, and cheerful. I wish I could say I was all of those things, but I'm exhausted. Some mornings and nights all I do is clean him up, and then sanitize the bathroom, and shower him. His bed pads and adult size cleaning cloths alone cost a fortune. I'm grateful he had his trach removed, and can eat and speak, I'm grateful he had his feeding tube removed, and can now eat food, I'm grateful his thinking has returned to nearly normal. I am hoping his hands will one day have the dexterity they used to, so he can do more of his own self care. I look forward to retiring in 2 months, so will have more patience and energy to take care of him. This is the best we can do .... and it's not nearly enough.
107
@Laura Mulholland
I'm sorry for what you are your spouse are going through.
Appeal the insurance company. You have rights. They DENY everyone until there is an appeal. The appeal process should be outlined in the policy. There may be a state, local or nonprofit agency to help you word your appeal. Check online if the State Insurance Commissioner has a healthcare division that may have appeal information. Stand up to the insurance company.
Tell his doctor the medical notes need to clearly reflect ALL of his limitations as they are denying him at home care. If he can't wash, wipe or feed himself, he qualifies for home care.
Best to you.
23
@Laura Mulholland
If your husband owns a "tax-qualified" long-term care insurance policy, he should qualify for benefits. Contact Amada Senior Care. They are a nationwide home care agency and they process thousands of long-term care insurance claims every year. They handled my mother-in-law's long-term care insurance claim and got it approved quickly and easily.
3
@Hope They do not deny every claim. But, if they do not receive all the required documentation within 60 days they have to deny the claim. State law requires the insurer to approve or deny the claim within 60 days. I suspect that's what happened in this case. That's why no one should file their own long-term care insurance claim. You should have a qualified home care agency file the claim (which is what we did) or an Aging Life Specialist (aka Geriatric Care Manager).
5
To Bob's family: if you were paying $400 a day to a nursing home that wasn't cutting it, why are you stiffing this saintly in-home worker by paying her $160 a day? I hope you're paying her at least $100 more per day under the table!
233
Agreed that her pay is too low. But the problem here is that the family is paying 75K a year as it is. This is the real dilemma: the cost to a family of paying for full-time or even part time care is way too high and yet the pay for the care worker is way too low. Who can afford 75K a year? The problem of aging cannot be solved by individuals. It is a monumental public problem that our government refuses to face, having become quite accustomed to individuals bankrupting themselves to care for their parents or (mostly women) doing all the free care work on top of their full time jobs.
101
@famharris
The agency is getting a big percentage of her pay. If she could be liberated from the agency, she could have a much better deal.
12
@Susan Shapiro
You had me until the “ yuppie women take jobs away from men “. Seriously? This not the 1950s. Or the 1850s. Yes, I’ve taken Jobs away from men. Because I’m really, really good at my Work.
17
They might still be.
1
They both seem miserable. He is obviously not getting proper medical attention if he is soiling himself as many times as this article mentions. She cannot possibly do her job well and remain human if she is "on call" 24/7. This is no life for either of them. I hope she survives.
26
@D. One thing to understand about Alzheimers: no amount of "medical attention" will prevent a patient from soiling him/herself. Losing control of bowel and urine functioning is part of the disease. A sad but true fact.
15
People like Marjorie are like angels. They clearly deserve better pay and more support than they get.
13
It always amazes me that, in a country as rich as the US, we continue to undervalue the work of those who attend to us at the beginning and end of life. Pre-school teachers and home health care workers are the most important people who shape our worlds when we are at our most vulnerable, yet they are overworked and underpaid - and too often under-regulated.
44
Congrats to Andy Newman for a well crafted effort.
17
It’s Labor Day. It’s time for labor to organize once again. Study the history of the rise and fall of unions from the 19th c to the present. Certainly food and health and hotel workers deserve to be heard and paid. Those in education have been underpaid and under appreciated as an American tradition 🇺🇸
26
I'm wondering why Bob's family doesn't pay Ms. Salmon the $400 per day they would have been paying the nursing home that provided inadequate care. She gives him wonderful 24/7 care, knows him and his needs intimately and keeps him well-fed, clean and safe. Is that not worth the $400 per day they would have otherwise been paying? Why is it acceptable to give this woman $160 per day, no matter how many hours a day she works? I realize the nursing home would have nurses -- mostly LPNs -- but frankly, Ms. Salmon is able to give Bob better care, for the simple reason that he is her only patient. Unlike nursing homes, which assign anywhere from 15 to 45 (and up) patients to a nurse or aide, depending on which shift you are talking about.
28
@JenD If he were in a nursing home, they wouldn't also be paying for the house and the food and supplies. In addition, once Bob himself is "destitute" medicaid will pick up the tab for the nursing home. No third party will pay for this arrangement - Bob's son is taking the financial responsibility for potentially several years to come, if not many years. There is no predicting.
I work in this field on an admin level. There is NO easy solution. There is no one-size-fits-all answer. How we are aging is one of the biggest challenges we will face and it will only get more pressing.
27
@JenD. You are forgetting that the $400 rate would include the cost of housing and food.
11
@JenD I assume that it is costing Bob's family as much as or more than it was costing him in the nursing home. They pay, in addition to Mrs. Salmon's salary, for Bob's housing, food, medical supplies and other expenses. The total probably comes to at least $400 a day. What is not mentioned in the article is any interaction between the family and Bob. Couldn't they spend time with him to allow Mrs. Salmon more time off? They seem to have abandoned him and turned him completely over to the ministrations of Mrs. Salmon. She clearly is doing a wonderful job, but I think Bob's family needs to do more for him than sign the checks. Of course, the article, which concentrates on the efforts of Mrs. Salmon, may not give a complete picture of the contributions of Bob's family to his care, emotional as well as financial.
20
I am so sorry for what this family and Marjorie are going through, but I can't believe that there isn't a memory care unit in a suburban city of New York that can manage Bob. My family has had to address this on two occasions, and it's devastating, but the small town where I grew up had more than one facility that could take with dignity the very worst of what the patient and families have to face. I mean no disrespect to Bob, his family, and particularly Marjorie; it's always easier looking in to provide judgment. (It's just so clear.)
All other points taken that something is very wrong with how home aid workers are scheduled and compensated for very important work.
16
@Patricia
Understood, and I’m sorry for what you dealt with. That wasn’t our experience with nursing homes, however truly terrible it was. I hope that this article broadens the conversation to those who haven’t experienced it firsthand.
2
Unless and until most Americans realize that paying taxes helps to fund the programs to properly pay caregivers in any level of care, then jobs like hers will continue to be low paying, high turn over, burn-out jobs where the chances of abuse are high. Tax the rich appropriately so these programs can be funded appropriately. Americans, demand it of your politicians.
141
What about a story on the poorly trained aides who neglect and abuse those with dementia? We used a reputable home health care agency affiliated with a nursing home and assisted living facility. We communicated our concerns to them on a regular basis, only to have them repeatedly deny that their aides were less than perfect. The agency put aides in the home, collected their fee, but had no oversight or ongoing training. We did not realize the extent of the aides' neglect and harsh actions until we put a camera in my mother's bedroom. You may have interviewed a good aide, but from our experience, this is not the norm.
15
@chip What about those with dementia who abuse their caregivers?
1
She's working 24 hours a day and only gets 3 days off a month. How is that even legal?
This woman is definitely a wonderful person, but the system here is totally unsustainable . keeping elders out of institutions is a great goal, but at what expense? We should look to other countries for ideas. Maybe a single payor system would help?
111
When I began looking for a home care worker for my mom I was flying blind: I was coming off a terrible experience with a service and there was hardly any information about private care, pay, responsibilities, etc. I determined what we could afford and it turned out to be aligned with the average NYC rate. She and I were both fortunate because we both cared about each other and my mother. We also had good instincts and were organized. The part-timers/weekend helpers were not quite as committed, but our full-time care worker became "a boss," so to speak, and recruited, trained, and managed several part-timers so that she could maintain a life for herself. There was a great deal of mutual respect and trust in our relationship. Because my mother was docile, the 24 hour days were not as bad as they could have been and I really pushed for her working Monday through Friday and taking the weekends off, but ultimately, she was my primary person and I let her do what she preferred: if she wanted the extra money, she worked longer stretches. This is an imperfect process but one needs to try and pay as much as possible...and always be kind. A home care worker should never be an outlet for our frustrations with the system.
36
While there are some good facilities for the aged, most are not that good. See this article from NYT Sunday Review: How Not to Grow Old in America.
9
Like so many others, people like Marjorie Salmon are saints and deserve much more respect and compensation than the get. The luckiest among the millions of elderly in decline from dementia have the care provided by Marjorie but most don't. I know because my sister is dying very slowly from early onset Alzheimer's.
I cannot fathom how these caregivers continue to do what they do.
55
Best of luck to you. I am impressed by the size of their heart. Special people
5
To Mr. Dettmer's family and caregiver: Please consider placing Mr. Dettmer in an assisted living residence specifically for people with Alzheimer's. There he will be surrounded by other people and he will have access to activities, exercise, art, music, and most importantly, other humans with whom to interact. Mr. Dettmer is at a point in the disease process where no single caregiver can give him all that he needs. Marjorie is an absolute angel, but I fear for her health as well because of the isolation and grinding work this job demands. I know of what I speak, as my mom suffered from Alzheimer's. My dad's health was quickly deteriorating as he coped with her illness. The best thing we did for her and my dad was placing her at an outstanding residence where she was surrounded by loving professionals and other people with ALZ. The residence had a small indoor aviary, and even a dog and cat which gave it a home-like feel. More importantly, she ate with other residents, went to art class, exercised, and strolled in the gardens in a safe, structured, and secure environment; it was as close to a "normal" life as possible. Mr. Dettmer needs more than even Marjorie can give him.
211
Unfortunately, that situation is an option only if the person or family has the financial resources. My mom didn’t have Alzheimer’s but she had dementia, and she was in the skilled nursing facility of her retirement community for the last 2 years of her life, requiring 24 hour care. She had saved her whole life and had bought a long-term care insurance policy, at a time when that kind of insurance was somewhat affordable, for which she paid premiums for over 20 years. The facility she was in was well run and caring. Her caregivers were wonderful. Her financial planning and well-researched choice of a continuing care facility was a godsend to our family. But once in the 24-hour skilled nursing facility, the cost was $120,000 per year. The long-term care insurance paid about $50,000. We lucked out. My family would never have been able to afford this kind of care for her. And for most people, including my wife and my 65-year-old selves, this level of care for us is pie-in-the-sky.
45
@ls
Yep. Who will pay four assisted living? Wonderful idea. I pay 4 grand a month for my wife in assisted living. Soon I’ll be living out of the trunk of my car.
But it’s my own fault. I refuse to get a welfare divorce. Too stubborn to abandon the wife I love....
33
@John Perry
Why not move into the assisted-living facility with your wife?
8
My sisters and I moved back into our childhood home to care for our parents. We did have daytime aides but then we rearranged our work schedules I work in retail,one sister is a teacher and the other works in a hospital ,so we could take care of them .It is extremely hard work my father lived to be 93 he was a Ww2 vet and ex pow and my mom lived to be 86 .They lived and died with dignity and we grew up in a rowhome and would do it all over again ,with drs appointments making sure they got there ,took their meds etc... And this man’s son is a physician WOW
11
This is an ideal situation for those who can afford it but the future is in Assisted, Independent, and Full Care facilities. Finding reliable caretakers is difficult and more expensive in the long run. There are some very good but not perfect care homes that can provide more mental stimulation for people like this. What happens is that the family cannot leave them there but must be involved almost every day of the week to ensure they get what they need. No one ever promised that getting old and dying would be easy. Prepare yourself.
8
The younger generations do not want to live forever. We want quality of life, and control at the end. Aid in dying will continue its path to legalization across the country.
103
@Meghan you are too young to know what you want. Aid in dying is a good idea but it also means the poor, disabled and elderly will be "helped" to die against their will. Decisions will be made based on $ by insurance companies and medical personnel not the patient. Happening already. You need to consider the broader impact on others less fortunate than you.
8
@Meghan. Oregon has the oldest assisted suicide law in the country but dementia is excluded. I am saving up my pills. I will not end my life like poor Bob!
17
@Meghan
Unfortunately, Aid in Dying would not help in this situation, nor in any situation where mental capacity is lost. In California, people must have less than 6 months to live and be able to make 3 requests for Aid in Dying to 2 different physicians. By the time Alzheimer's patients have less than 6 months to live, they are typically non-verbal and bed bound, their ability to consent for Aid in Dying a thing of the very distant past.
11
When my 94 year old mother moved in with us, she was bed-ridden, and in early dementia. We hired a wonderful live-in who was required to look after all personal care, but no laundry, no cleaning, little cooking, but we were here to support her. As well, she was replaced by another live-in on the weekend so she got a break.
The father should be living with a member of the family, with the live-in support. Rather than buying him a separate house, buy a house that everyone can live in.
To expect this amount of work and on-call time from one person is unfair, immoral, and possibly illegal.
The least the family should do is find someone else for the weekends and raise her salary to $15 per hour. Mortgage the house if you need to.
Marge, and all the other care-givers, deserve more.
321
If they all lived together, nobody would qualify for welfare. This story is an example of a carefully crafted situation to get welfare to pay!
6
@John Perry Medicare is not "welfare." It's a part of the tattered American social safety net that we all pay into with a tiny portion of our taxes so that, if/when something horrible happens to use or our loved ones, some help will be available.
I explained this carefully to one of my daughters when she became totally and permanently disabled at age 19.
41
@john
That's the thing, John. With some kind of Medicaid or Medicare for all, we would pay more taxes upfront but not have to worry about going bankrupt or even foreclosing. My brother lives in Belgium and recently had some serious health concerns. He got great care and is on the mend. What he never got was a bill.
18
Marjorie is a saint but the blatant unfairness of the situation demands change.
Our dysfunctional and monetized health care system has de-professionalized and de-valued the human services that really matter.
There is no cure for Alzheimers. A doctor making $300 k is not going to "fix" this. The home health workers are the ones that fix these dreadful situations and they should be compensated WELL for doing what others are unable/unwilling to do.
Aides need to unionize just as nurses are doing.
44
Pay her for what she deserves and it's certainly not $160 a day for 24/7 a week. This person deserves to live her own life. What should have been mixed into this scenario is having health aide nurses coming in on the weekends to alleviate this stress from Marjorie taking care of Bob. Finding help is not easy in fact it is very difficult but they are out there. A person should not have to rely only cell phone for human contact. Come on Bob's children, please do better than this for the sake of both Bob and Marjorie.
63
@Martha White
To Bob's family: Are you kidding? This is what you pay for around-the-clock care that YOU might have to provide without Marjorie? Cough up triple the amount and you might be more on target with Marjorie's worth!
26
She's not just a pretty woman, but a beautiful soul. May our society learn to reward those who do the work we can't or won't do with a more humane situation working conditions and higher monetary recompense.
40
What will we do as our population gets older? 5.8 million Americans currently have Alzheimer's. By 2050, there are projected to be close to 14 million. And the technology to keep the elderly alive (though likely not thriving) longer will only improve (at least for those who can afford it).
16
@J
We have instructed our families and doctors (in writing) to reject life-saving treatment for us when and if we become demented.
12
@mb
My husband has Alzheimer’s and has 24 hr. care in our home. He started having seizures which increased in frequency and strength.
I understand when people say they do not want “life-saving treatment” but when faced with the decision to let a person die from a seizure there is only one decision that a loved one can make- let that person live.
Believe me, the situation is so much more complex than I ever would have imagined. I face decisions every day about my husband’s care. He would have wanted to die rather than live like he is but he did not have the knowledge of what his problem was before it was too late for him to travel to Oregon and die.
10
@mb In that case, you have done what the law currently allows (so have I). But you could nevertheless end up living for many years in a "memory care facility," whether or not that is the end of life situation you would choose for yourself.
1
Truly, caregiving is a full time job - this article shows why people often have to give up their "regular" jobs to care for an aging parent. It's exhausting - for my mother, every moment of the day was spent caring about and thinking about her own mother.
"The pay is not much — at 16 hours a day, it would come to $10 an hour — but Bob’s family is deeply grateful, and that counts for a lot." This was striking to me. As much as Marjorie is respected, she is always on the clock and severely underpaid. There is room and board - but I wonder how often she can sleep through the night? Alzheimer's patients often wander and get up in the middle of the night - my grandmother did and we had remote cameras and relatives in other time zones who could watch her.
Appreciation and gratefulness does not pay the bills... this family is so lucky to have someone who cares. The reality is money matters. Even for a job description with the term "aide" in it, people often stop caring and can become callous because it's a thankless job and they are really not being paid enough to care. And yet this level of service is unaffordable and too out of reach for many... everyone is struggling.
81
In the US, if you give up your job to care for your parent, you lose your health insurance.
5
My family had a live in caregiver for our mom with Alzheimer's. She became part of our family. Truly an angel who I can't say enough about. She took care of all of us by the peace of mind she gave us. For a family going through this crisis there is no amount of money to compensate these amazing women. She was from the Congo and we did what we could to help her with other expenses. Thank you for shedding light on this important problem that gets lost in all the chaos of today. These caregivers are heroes.
92
A major puzzle is why our local home care agencies charge us $30-$33 /hr even for companion-level care, but only pay their home care aides $11-12.50/hr. The agencies provide little training (typically one week) and no meaningful oversight. Care workers are on their own with clients, and the agencies never, ever solicit client feedback on care worker performance. Scheduling, medicaid/insurance reimbursement submissions, on-staff nurses, and insurance don't seem enough to explain the $18-$21.50/hr gap, but the agencies don't seem hugely profitable. Could changes in how NYS certifies and regulates home care agencies - perhaps by permitting worker coops and agencies focused on medically uncomplicated care - help close the gap between agency charges to clients and worker pay? In the current job market, agencies don't pay enough to attract and retain competent care workers, and so deliver poor value - and a lot of headaches - for their $30/hr. We have abandoned agencies, and for $16-$20/hr we can hire superb care workers. It's fortunate that we can afford to do so.
286
@Robert Thorne I agree. Basic math: the family pays over $75K for Bob's care, Marjorie earns between $45K and 52K. You acknowledge the economic burden that the health care agency bears--paperwork. Does it really cost $30K per health care worker for that paperwork? Lots of unanswered questions here for the next article.
16
@Robert Thorne
What's so puzzling about it?
It's just what you would expect when our entire health care system, top to bottom, is based on profit motive.
11
The situation in Korea is not quite different, but national home care insurance covers part of the payment to care takers. Depending on the individual's need for home care, national home care insurance reimburses certain number of home care costs such as 20 hours per week. The actual cost is much higher than the insurance payment as most need 7-24 services. Nonetheless, it helps. The actual cost level for home care in Seoul seems more expansive than New York as many Korean-Chinese set the price as a group. Most of them, while traveling between China and Korea, are working only for money, which is not a desirable situation. Not many Koreans do not want to work as care taker as it need limitless time and efforts. In any event, the Korean government is trying to expand the insurance coverage step by step. I hope at some point in the future the national home care insurance would cover the full cost of care takers who deserve more appreciation and social recogniation. It is a hard job as the article makes the point.
15
$75,000 dollars a year..
6
Did you get that dollar amount doing the calculations in your head or using a calculator on your smart phone or a pen and paper ? I wouldn’t do that job like this lady does for less than $125,000 a year.
7
It's shameful how the elderly and their care givers are treated in America.
642
The question is, how much could you personally afford to pay for yourself or your parents to have around the clock care? That's what limits the amount a caretaker can make.
12
@Mary What about children who do this for their parents. They are not compensated and most of us work a job and pay for day help. We are living by the skin of our teeth and ruining our health. It is non-stop frustration and torture for both the parent, who might not know, and the child. You feel like you will never see the light of day again.
My father is 91. I think I might die before him.
35
@Mary You are right, it is shameful how the elderly are treated in America. The ex-governor of Iowa released elderly sex offenders from psychiatric care and installed them in nursing homes throughout the state to save money. You can guess what happened to the elderly women in those nursing homes. Disgusting.
11
CBD oil or marijuana would come in handy for many of our seniors and others who need full time care. All people who care for others need to be paid more, period. This is a travesty.
19
That is a horrible idea. Please do not believe the myths about how great marijuana is for medical disorders. There is evidence of efficacy in only two conditions, and most elderly people don’t have either one. It is a dangerous drug.
8
One person doing this for 24 hours is way too much work at any price!
1141
@S. Mitchell
Families used to do this work for their own. My maternal grandmother, who was widowed young, took care of HER mother at home until great-grandma died at 103. I was a child then, but as an adult I felt agony for what my beautiful grandmother must have endured, hauling her mother up from bed with a pulley every morning to clean her. And so on. All alone in this drama. Awful. Terrible. Ugly.
People now should feel unbelievably fortunate that they are able to pawn off this thankless and brutally hard work to paid employees.
This is exactly why so many of us want access to death with dignity. What's the point of suffering and becoming an obvious burden?
114
@S. Mitchell I don't think I'd be up to it.... but let's look at it another way. She's clearing something like $40,000 a year, and has a place to live and meals provided. 5 years so employed and she could bank $200K. That's not too bad. Then she could buy a small house and get a reasonable job.
As I say.... it wouldn't be my choice. But there are positive considerations, too.... in a country with so much abject poverty.
14
@vermontague - She works 26-27 days per month. She lives in Crown Heights, which means she has to pay for her own place and utilities even though she's rarely there. As a freelancer she has to provide her own health insurance, dental care, etc. She isn't living free by a long shot. These arrangements work well for immigrants, who live entirely with the client and send all the money home to their families.
66
Amazing that Medicaid (people who have NEVER paid into the system for medical) get a free home health aide, but Medicare (people and employers who HAVE paid into the system are denied this. How could this happen.
This healthcare aid is an angel.
35
Please do a little more research. Medicaid is not for people who have “never paid into the system”. Medicaid is income based and assists those whose incomes are extremely low. Those individuals may have low income but they have “paid into the system”. Medicaid is also used by individuals that have exhausted their savings to pay for services such as in-home care. People receiving assistance for their Medicare premiums are receiving Medicaid. It’s a complicated system for sure but I don’t think one group of people deserve more or better care than another, no matter their income. This caregiver should not have to work 24/7; that is not a life for her. I feel for her employers as well; unless they have unlimited funds they will run out of money paying her and he too will be reliant on Medicaid in his final days.
16
@NYC Dweller How do you know that every person on Medicaid has never paid into the system? Did you just assume that? And if you read the article, you would know there is a severe shortage of home health aides for people on Medicaid.
12
@NYC Dweller You are wrong when you write that Medicaid is a system that covers a person who NEVER paid into it. That just isn't true in all cases. My mother and father worked for many years, paid into the system, and also saved money in a private savings account. My father never got to age, died in his 60's. My mother developed Alzheimer's and lived into her 90's. Her end of life nursing home care was paid for by her life's savings, and when that ran out, she was covered by Medicaid until her death.
18
Bob’s family needs to spend more time with Bob and give Marjorie a break. A lot more time.
766
@Deirdre That's complex. We don't know the situation. It may very well be that the family in fact doesn't want much do with Bob, or Bob's care - not everyone feels a sense of duty or obligation. But yes, I agree. Marjorie should at the very least have weekends off to spend with her family, plus holidays.
50
@Deirdre We don't know their situation. Sometimes adult children have chronic illnesses etc. They could be neglectful or they could be dealing with their own overwhelming burdens. Easy to cast blame but the particulars of their lives are probably more complex than we imagine.
45
@K
Actually, it's not complex. Much of life entails doing things because they are right, not necessarily because we want to do them.
68
The least Mr. Dettmer’s family could do is pay Marjorie more money. She is a saint whom Jesus has blessed. Do they realize how incredibly lucky they are? I also noticed there’s not a thing written about Mr. Dettmer’s family participating, except to say they’re grateful. I guess so! But I didn’t see anything about them coming over to help her or give her a break, or, heaven forbid, change his diapers. Perhaps they do participate but, again, it’s glaringly absent in the article. Perhaps because it’s true? And the son is a doctor? I thought the article was fantastic. I’ve been there. Marjorie, Bob was right....you are beautiful.
274
@Hortencia
I think they should give Marjorie that nice house when the time comes. That would be gratitude. I hope they look after her in some way, the work she does is priceless. She seems like a real gem.
126
@A.K well you see that the son believes that a mattress over a pull out couch is good enough for Margorie so don't get your hopes up. If he really wanted to do what is right and appropriate she would have a proper bedroom and bed.
19
An amazing person.
25
God love you, Marjorie.
30
How many individuals would want to “live” like Bob? I have much compassion for him, his family, and Marjorie.
As an ICU nurse, I witness that many medical advances extend lifespan and “save lives,” while only leading to misery for the last few years of life.
Please please please - make a living will and speak to your families about your wishes while you are young and have your cognitive abilities intact. An interesting read on the topic is “Why I hope to die at 75” in the Atlantic.
512
He might have a living will. What good does it do in cases of mental decline? I’ve talked to my family about cognitive markers, but what legal course is there?
48
@ICU Nurse Thank you so much for sharing, and being an ICU nurse. Yes it is imperative to have a living will. My mother had Alzheimer's disease and asthma. My niece was driving her to the doctors, when she had respiratory arrest. At the Emergency room, with no DNR, they did revive her about four years before she expired. My mother had live-in caretakers for eight years before she expired from Alzheimer's. So please, check out making a living will and if you want a DNR (do-not-resuscitate order).
19
@ICU Nurse .... The person who wrote - Why I hope to die at 75 - obviously isn't even close to that age ... yet. If they're lucky to get there, ask them then when they plan their exit.
In my 20s, I remember when I thought 40 was a old.
21
A whole new level of humanity and care-giving in this story and in Marjorie's effort. Don't know if I could do this if I was called to do it.
11
People who care for other people. Health aides. Teachers. Librarians. Police people. These are the ones who deserves large salaries
1168
@Mary m I always half jokingly say that I should have gone into the business sector. Seems like easy money comparatively with room to progress. Unfortunately that's not where my skills lie.
11
@Mary m: Thank you! Add to the list, Social Workers.
48
They are the ones who deserve higher salary... We are still living in capitalism. Jobs that make money, pay money. Not jobs that are helpful. Still there should be better support for those occupations. Germany did it well for a while by making a bunch of the listed professsions government employees, which got great benefits even though the pay was still at the lower end compared with high tech industries.
21
For four years, we had a pair of healthcare workers who lived with, and cared for, my elderly parents. They worked in shifts, one week on, one week off, each trading off weeks. We also employed a weekly housekeeper to do the heavy cleaning. I think this is a more humane model, and was paid for their long-term care insurance. We could not have made it without this team of caregivers who enabled us to keep them in their home until the end.
Even so, as adult children we had to be very involved with their care, accompanying them to doctors’ appointments, monitoring any health changes or issues, modifying the house/locks, daily calls and frequent visits.
I’m without children or nieces/nephews and wonder who will coordinate my care. I can’t imagine the same sad end as my parents, and they would be considered fortunate.
357
Thank you for this article. Marjorie is a gem and should be fairly compensated for the invaluable work she does. I do question the ethics of including Bob's full name and face. He has so little control over his life. Could he at least have his dignity and privacy? Name and face are not essential for the story.
Few who care for dementia patient get adequate support, whether home health aides, nursing home workers or family members. I watched my own elderly, exhausted father take care of mother is until dementia forced her into a nursing home where overwhelmed aides drugged her to keep her asleep. I hope this article brings action.
49
@mb I'm with you. As my mother and two of her sisters all got dementia, I am a candidate and do not want to go out like that. Thank you for this resource.
6
Sadly we seem to care more for the unborn than our senior citizens. Our family too had a lovely woman, Carol, from Barbados who took care of my mother-in-law until my she passed away. Carol had a husband and her own family, but Monday through Saturday she lived with my mother-in-law. We are forever grateful for the work Carol did.
148
@Pigenfrafyn
“We” is an extremely vocal and extremely well-funded minority who is twisting our courts and legislatures into a bogus pretense of “caring” for “life” aka fetuses. The work this woman is doing is truly pro-life, she is doing her best to offer a life of dignity to a vulnerable fellow human. No one in the so-called pro-life corps does this work.
13
@Honeybee What's left out of much of this entire conversation is that many home care workers want the extra hours/days...because it is extra money.
10
@Honeybee I sure hope you're volunteering to substitute for all the full-time caregivers in your neighborhood and beyond. Just one day a week, every week, for the rest of your life. OK?
2
This is a telling example of priorities run amok. Low pay for GREAT care... Bob and his family are very lucky...Just wonder how many patients/families actually use this WONDERFUL service--then we would know how many people are WAY underpaid in the field of Human care.
43
Andrew Yang makes the point that we undervalue homecare as a profession be it a wife caring for her kids or the case here. There is much that government and the private sector could do to make homecare work better. Support on-demand using a Uber/Lyft model could provide special services or allow one worker to cover several homes. Lower cost rental of specialty equipment is another opportunity. Universal healthcare should include these elements.
32
@Ken Wallace
I would not even go near the Uber/Lyft business model. For doing very little except electronically connecting supply and demand, they pocket a disproportionally large fee and treat the service providers as contractors. Please, NO, NO, NO
26
Health/home care workers have a high rate of suicide.
Article glosses over this bane of such work.
I lived recently in Mexico where many Americans have self-deported because of the quality of home care.
The workers have higher social esteem than here.
Bob is fortunate to have family willing and able to shell out the amount of money they do, and super fortunate to have a caregiver like Marjorie.
I wouldn't want the job for all the tea in China.
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@Emmett Coyne I agree with you 200% and I still feel stunned and speachless over the situation, I just turned 69 last week, and I climbed Mt. Fuji to celebrate. however, I have some secret "issues" which make me look at Bob's situation, with dread.....This essay is a creeping nightmare for me.
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Thank you, Marjorie, for your love and compassion. This is one of the hardest jobs a person takes on. Caring for a family member 24 hours a day 7 days a week with no respite is demanding beyond belief. You are asked to do things most of us can't imagine and are unable or unwilling to do. Blessings to you and to Bob.
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@Maggiedo
Marjorie needs a lot more than our good wishes and gratitude. She needs us to stand up for her and her fellow workers and demand fairness. The laws need to reflect reality and not be ignored because the industry might “collapse”.
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@Maggiedo
He is not Marjorie's family member. The job she is doing is not based on "love and compassion," though she clearly has a lot of that. She is doing a job for money (and clearly not enough money nor benefits). This is a STRAIGHTFORWARD labor issue--pay her what she is worth and stop skirting labor laws! She is not working as a slave because of "love and compassion," she is doing it because as an uneducated immigrant woman of color she feels she has no other options!
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Wonderful article about caring under paid individuals doing a thank less job. A caring society would provide for its elderly and its young but then of course we would be accused by our most public ally pious of being socialists.
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Thank you for this amazing piece of reporting.
Caretakers like Marjorie are in service to the American people--one citizen, one family at a time. They are the last responders.
They should be given the same respect --and pay -- this country gives military service people, and first responders.
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@Avenue This country doesn't pay its military or first responders well either. They don't generate money, they provide a service. We only value--and pay accordingly--people who make money.
17
This will be unpopular, but when you add in the room and board, for a single person without a family this is a decent paying job.
7
Not when you consider interrupted sleep, morning until night and through the night. It would be a good salary with the boarding if you could work a solid work day, say 7am-6pm 5 days a week.
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Wow. When does the size of your family determine what your compensation should be. Reminds me of when I began my career I was told that men should be paid more because they pay the cost of dating.
The fact that she gets housing means she is on call 24/7. Better off not getting such and living elsewhere. The people in this line of work deserve respect and appropriate compensation.
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She is still paying rent on her own apartment. So I would say room and board is not included.
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Home care aides are a large segment of our underground economy.
The article notes that about 2.3 million are employed in this field. I know that many are off the books, being paid in cash by families. Are these counted in the numbers?
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@Paul’52
Are you concerned that they're becoming rich, Paul? That they may be getting $200 off the books a month? Their work is infinitely more valuable than some paper pusher on Wall Street who makes nothing at all and cares for no one. They only make 1200 times what these workers make so let's crack down on that "off the books" income.
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@CarolSon I would not assume that @Paul'52 is concerned about the off the book income. Seems like he is wondering if the number of home health workers is accurate if it doesn't at least estimate the off the book workers.
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@CarolSon Your reply is absurd and unwarranted. And I'm not talking about $200 off the books a month.
I'm talking about full time workers whose entire pay is off the books, where that pay is from $35,000 - $45,000/year.
And my concern is that the issues surrounding home care work are under reported and that the problems of workers in the field are under estimated.
10