On the Job, 24 Hours a Day, 27 Days a Month

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.

Comments: 259

  1. 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?

  2. @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.

  3. @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.

  4. @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.

  5. 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.

  6. 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.

  7. 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.

  8. She is still paying rent on her own apartment. So I would say room and board is not included.

  9. 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.

  10. @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.

  11. 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.

  12. 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.

  13. @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”.

  14. @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!

  15. 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.

  16. @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.

  17. 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.

  18. @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

  19. 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.

  20. 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.

  21. @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.

  22. @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.

  23. @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?

  24. 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.

  25. @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.

  26. 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.

  27. @Karen My spouse and I never had children. Most of my family is gone and what I have left lives in another state. There will be no one to take care of me if I outlive my spouse. I also have no problem with suicide.

  28. People who care for other people. Health aides. Teachers. Librarians. Police people. These are the ones who deserves large salaries

  29. @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.

  30. @Mary m: Thank you! Add to the list, Social Workers.

  31. 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.

  32. 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.

  33. 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.

  34. 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?

  35. @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).

  36. @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.

  37. God love you, Marjorie.

  38. An amazing person.

  39. 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.

  40. @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.

  41. @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.

  42. Bob’s family needs to spend more time with Bob and give Marjorie a break. A lot more time.

  43. @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.

  44. @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.

  46. 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.

  47. 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.

  48. @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.

  49. @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.

  50. One person doing this for 24 hours is way too much work at any price!

  51. @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?

  52. @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.

  53. @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.

  54. 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.

  55. 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.

  56. It's shameful how the elderly and their care givers are treated in America.

  57. 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.

  58. @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.

  59. @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.

  60. $75,000 dollars a year..

  61. 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.

  62. 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.

  63. 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.

  64. @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.

  65. @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.

  66. 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.

  67. 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.

  68. In the US, if you give up your job to care for your parent, you lose your health insurance.

  69. 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).

  70. @J We have instructed our families and doctors (in writing) to reject life-saving treatment for us when and if we become demented.

  71. @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.

  72. @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.

  73. 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.

  74. 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.

  75. @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!

  76. 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.

  77. 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.

  78. 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!

  79. @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.

  80. @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.

  81. 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.

  82. @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.

  83. @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!

  84. @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.

  85. 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.

  86. 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

  87. 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.

  88. 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.

  89. @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....

  90. @John Perry Why not move into the assisted-living facility with your wife?

  91. 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.

  92. Best of luck to you. I am impressed by the size of their heart. Special people

  93. 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.

  94. 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.

  95. 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?

  96. 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.

  97. @chip What about those with dementia who abuse their caregivers?

  98. 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.

  99. 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.

  100. @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.

  101. 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.

  102. @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.

  103. @JenD. You are forgetting that the $400 rate would include the cost of housing and food.

  104. @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.

  105. 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 🇺🇸

  106. Congrats to Andy Newman for a well crafted effort.

  107. 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.

  108. People like Marjorie are like angels. They clearly deserve better pay and more support than they get.

  109. 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.

  110. @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.

  111. They might still be.

  112. 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!

  113. 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.

  114. @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.

  115. @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.

  116. 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.

  117. @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.

  118. @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.

  119. @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).

  120. 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.

  121. 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.

  122. @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.

  123. @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....

  124. 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.

  125. $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.

  126. @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.

  127. @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.

  128. @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?

  129. 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.

  130. @Susan Shapiro. Trust me when I say that the RNs would rather be taking care of patients than charting in the computer.

  131. @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.

  132. 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.

  133. Home Health Workers are truly angels. They deserve more income and respect for the hard work they do.

  134. 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.

  135. Adult day care does not and will not care for patients with even the mildest dementia.

  136. 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.

  137. @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.

  138. 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.

  139. 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?

  140. 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.

  141. @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.

  142. 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.

  143. @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.

  144. I am a geriatric care manager and I agree with you: a good caregiver is Everything!

  145. 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.

  146. @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'.

  147. @Twitchly In addition t god blessing her, (s)he should make sure she's getting paid what she's worth!

  148. 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.

  149. 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.

  150. @Can Marjorie has an apartment. She doesn't need housing.

  151. 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.

  152. God love her, this woman is a saint. Most people wouldn’t last a day in her job. I include myself in that assessment.

  153. 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.

  154. @Blue in Green Unfortunately your daughter cannot decide on the morphine pump. Doctors do and they will not approved it.

  155. @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.

  156. @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...

  157. 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.

  158. @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.

  159. @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?

  160. @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.

  161. 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.

  162. @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.

  163. 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.

  164. @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.

  165. 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.

  166. 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.

  167. 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.

  168. @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.

  169. 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.

  170. 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.

  171. @As So in other words, this important work, almost exclusively done by women, should be uncompensated.

  172. @As and they can pay their mortgage and bills how, exactly?

  173. If only it was that easy!

  174. 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.

  175. 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.

  176. 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.

  177. 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.

  178. 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.

  179. @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.

  180. 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.

  181. 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.

  182. 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...

  183. 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.

  184. In the long run, I suppose they will. And in the long run, we are all dead.

  185. @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.

  186. 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?

  187. 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.

  188. I hope Bob's family remembers Marjorie in a meaningful way. Words are nice but that's all they are.

  189. 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.

  190. 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.

  191. 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."

  192. 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.

  193. 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?

  194. @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).

  195. 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.

  196. 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.

  197. 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.

  198. 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.

  199. @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.

  200. 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.

  201. @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.

  202. 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.

  203. @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.

  204. 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.

  205. @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.

  206. 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.

  207. 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.

  208. 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.

  209. 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.

  210. @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.

  211. @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?

  212. 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.

  213. 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

  214. 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.

  215. @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.

  216. 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.

  217. 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.

  218. @Adjit - So will you avail yourself of this service if you need it one day?

  219. So when are you going to sign up to do this job?

  220. @Adjit*** she is there alot but has her own apartment

  221. 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.

  222. The home-health-care industry is one that is screaming for unionization.

  223. @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?

  224. 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.

  225. @mosselyn ....but you were free to give her additional pay...........

  226. @NS How can you be sure that mosselyn could have afforded to give the caregiver additional pay out of pocket?

  227. 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...

  228. @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.

  229. @SE Suicide/Homicide is not a plan. It's denial.

  230. 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.

  231. @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.

  232. 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?

  233. @AC Not sure of the total difference, but some needs to go to the relief help and maybe some to supplies.

  234. 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.

  235. 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..

  236. And yet again, somehow our economic peers in Europe manage to get this done, safely and humanely.

  237. “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.

  238. 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.

  239. 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.

  240. @Ant Group homes with several caregivers rotating through is an excellent idea!

  241. @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.

  242. @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.

  243. 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.

  244. 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.

  245. @Kathleen mardiguian: Lucky you have funds to afford this care. Many don't.

  246. 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.

  247. 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.

  248. @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?

  249. @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?

  250. @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.

  251. Missing from the story were visits from Bob's son and daughter. How often do they visit? Any grandchildren to visit?

  252. @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 .

  253. @Asheville Resident I also wonder who buys the groceries for this household. Maybe they are delivered.

  254. @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?

  255. 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.

  256. @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.

  257. @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.

  258. @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."

  259. 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.