It’s Time to Abolish Nursing Homes
August 25, 2020 5:15 AM Subscribe
"If three out of four Americans want to spend their final years at home, why do so many of us end up in institutional care?" A brief history of eldercare and the challenges faced by those seeking to "age in place."
I worked as a consultant for 'skilled nursing facilites' (SNF) for five years. This article addresses some points but is a shallow dip, with a little focal human interest story, into the array of problems.
Completely buried is the sentence where she notes that 'in the old days...women took the burden.' That is 100% still true, and eliminating the SNF is going to make that far worse. 24hr care is expensive, and the person in a m-f dyad who stays home to avoid paying for it is almost always the woman, who then loses economic power as well as mental health. No one feels better being a solo or near-solo 24hr caregiver.
Three more points: deinstitutionalization in mental health pushes these people towards SNFs, especially after a medical problem; the acuity, that is, the severity of medical problems by people in SNFs is higher than ever, requiring more care; finally, the mindset of quantity of life over quality leads to families and courts choosing to do things, especially in the US, which would not be even offered in other countries- like permanent life support- which necessitates higher levels of care.
I'm on mobile, so I've reached my writing limit, but I spent 5 years there in my 30s and I ain't going back when I'm older.
posted by cobaltnine at 6:21 AM on August 25, 2020 [85 favorites]
Completely buried is the sentence where she notes that 'in the old days...women took the burden.' That is 100% still true, and eliminating the SNF is going to make that far worse. 24hr care is expensive, and the person in a m-f dyad who stays home to avoid paying for it is almost always the woman, who then loses economic power as well as mental health. No one feels better being a solo or near-solo 24hr caregiver.
Three more points: deinstitutionalization in mental health pushes these people towards SNFs, especially after a medical problem; the acuity, that is, the severity of medical problems by people in SNFs is higher than ever, requiring more care; finally, the mindset of quantity of life over quality leads to families and courts choosing to do things, especially in the US, which would not be even offered in other countries- like permanent life support- which necessitates higher levels of care.
I'm on mobile, so I've reached my writing limit, but I spent 5 years there in my 30s and I ain't going back when I'm older.
posted by cobaltnine at 6:21 AM on August 25, 2020 [85 favorites]
I was agreeing until I reached this:
“When it comes to serving individuals with dementia, it can be really difficult for families, service providers, and staff to see how that person can live outside of a [nursing home], and it is important to note that the same security can be done in a home- and community-based setting,” she said.
My father had dementia and after a certain point, it was simply unreasonable for him to be cared for at home. There was no way you could offer enough in-home care for him to live at home. My step-mother fought the good fight for a long time before she finally was willing to have him transferred to a full-time care facility and it was brutal for her.
In-home care should be offered to people more than it is, and we need to do a lot of work on all these support systems to allow for that - but there will still be many cases where a family or (especially) lone spouse cannot reasonably be asked to continue full-time care for a person with advanced dementia in the home. We can and should re-think nursing homes as inevitable, but I'm skeptical about the idea that none is a reasonable goal.
posted by jzb at 6:30 AM on August 25, 2020 [63 favorites]
“When it comes to serving individuals with dementia, it can be really difficult for families, service providers, and staff to see how that person can live outside of a [nursing home], and it is important to note that the same security can be done in a home- and community-based setting,” she said.
My father had dementia and after a certain point, it was simply unreasonable for him to be cared for at home. There was no way you could offer enough in-home care for him to live at home. My step-mother fought the good fight for a long time before she finally was willing to have him transferred to a full-time care facility and it was brutal for her.
In-home care should be offered to people more than it is, and we need to do a lot of work on all these support systems to allow for that - but there will still be many cases where a family or (especially) lone spouse cannot reasonably be asked to continue full-time care for a person with advanced dementia in the home. We can and should re-think nursing homes as inevitable, but I'm skeptical about the idea that none is a reasonable goal.
posted by jzb at 6:30 AM on August 25, 2020 [63 favorites]
I have recently moved my mother from Indiana to a memory care facility 20 minutes from my house in Georgia. It was difficult and traumatic for everyone involved.
Could I be a better child and keep her in my home? I don't know that her life would be better. I can tell you that mine would be much, much worse. I know that part of being an adult is sucking it up and doing what needs to be done, but another part is recognizing when you lack the skills or temperament to do a job. Taking care of my mother is much more than simply providing food, shelter and laundry.
Pre-COVID she came to visit us a couple of times a year. The last time she came to visit us, I woke up at 2 AM to find her fully dressed and preparing to leave the house because she believed she was late for a church meeting. I spent the rest of that visit sleeping on the couch in case she did it again.
Because of her dementia, caring for my mother is three full-time jobs, morning, evening and overnight. At a minimal living wage of $15 per hour, that comes to about $130,000 per year. My mother's current care at an excellent facility comes to about $100,000 per year. That covers trained staff, meals, laundry, cleaning, safety and emotional support. She has a safe place to go for walks and she doesn't feel like she's a burden.
We are all very lucky that my mother's life has allowed her to be able to afford that quality of care.
Abolishing care facilities is not the answer. Proper licensing, rigorous training, requirements and inspections, along with living wages for the staff and financial help for families is the answer.
posted by donpardo at 6:35 AM on August 25, 2020 [84 favorites]
Could I be a better child and keep her in my home? I don't know that her life would be better. I can tell you that mine would be much, much worse. I know that part of being an adult is sucking it up and doing what needs to be done, but another part is recognizing when you lack the skills or temperament to do a job. Taking care of my mother is much more than simply providing food, shelter and laundry.
Pre-COVID she came to visit us a couple of times a year. The last time she came to visit us, I woke up at 2 AM to find her fully dressed and preparing to leave the house because she believed she was late for a church meeting. I spent the rest of that visit sleeping on the couch in case she did it again.
Because of her dementia, caring for my mother is three full-time jobs, morning, evening and overnight. At a minimal living wage of $15 per hour, that comes to about $130,000 per year. My mother's current care at an excellent facility comes to about $100,000 per year. That covers trained staff, meals, laundry, cleaning, safety and emotional support. She has a safe place to go for walks and she doesn't feel like she's a burden.
We are all very lucky that my mother's life has allowed her to be able to afford that quality of care.
Abolishing care facilities is not the answer. Proper licensing, rigorous training, requirements and inspections, along with living wages for the staff and financial help for families is the answer.
posted by donpardo at 6:35 AM on August 25, 2020 [84 favorites]
Geriatrics nurse checking in. Sustainable elder care and nursing home abolition is my “jeez, you have a lot to say, you must be real fun at parties” topic.
1) This article touches on how issues of patient neglect in nursing homes are connected with the imperative to turn profits and cut costs on everything, but doesn’t make the link as explicit as I would like. To put it bluntly: for-profit healthcare causes bedsores and c diff. Some of the nurses and aides I’ve worked with in long-term care are more thorough or attentive than others, sure, but these articles always seem to imply deliberate neglect and I’ve rarely or never seen that to be the case. What I do see, over and over, are staff forced to prioritize in heartbreaking ways when there just aren’t enough workers on the floor to do all the tasks that need done. Poor resident health is largely a reflection of administrative focus on the bottom line and a society that values neither elderly and disabled people or the women of color who provide the lion’s share of elder care.
1a) The fact that both aides and nurses in nursing homes are predominantly women of color makes me especially wary of the “neglectful staff with less training are a big part of the problem” narrative.
2) Is there anyone here with a labor background who can explain to me why unions appear to be throwing all their might behind organizing workers in nursing homes and writing off home care rather than organizing home care workers? I know there’s a long and storied history of pitting poor people against each other that’s probably part of the problem, but the two groups perform such similar tasks and are so demographically similar that it makes sense in my head for them to be lumped into the same unions.
3) We cannot talk about aging at home without talking about the vast amounts of unpaid labor that daughters, sisters, and nieces are expected to perform as part of that process. Right here on AskMe, I can recall multiple instances of posters asking “help, my elderly relative is about to be discharged from the hospital and the hospital is pressuring us into taking on caretaking we cannot sustain to make the discharge happen, what do we do?” It is absolutely okay to not have the temperament for caretaking, or to have a strained relationship with your family that makes caretaking impossible, but the state of funding, waiver waits, etc, is such that family members are often seen as the only option. Wage stagnation and sexism, meanwhile, mean that women run the risk of both temporary poverty during periods of full-time caretaking and longer-term depressed wages due to gaps in working. If we are going to make moves towards aging at home for everyone, there had better be myriad options in place for families with breadwinners who cannot abandon their jobs, queer people with chosen families that aren’t legally recognized, homeless people, single people—anyone who for any reasons may have a limited base of social support to draw on.
posted by I am a Sock, I am an Island at 6:37 AM on August 25, 2020 [153 favorites]
1) This article touches on how issues of patient neglect in nursing homes are connected with the imperative to turn profits and cut costs on everything, but doesn’t make the link as explicit as I would like. To put it bluntly: for-profit healthcare causes bedsores and c diff. Some of the nurses and aides I’ve worked with in long-term care are more thorough or attentive than others, sure, but these articles always seem to imply deliberate neglect and I’ve rarely or never seen that to be the case. What I do see, over and over, are staff forced to prioritize in heartbreaking ways when there just aren’t enough workers on the floor to do all the tasks that need done. Poor resident health is largely a reflection of administrative focus on the bottom line and a society that values neither elderly and disabled people or the women of color who provide the lion’s share of elder care.
1a) The fact that both aides and nurses in nursing homes are predominantly women of color makes me especially wary of the “neglectful staff with less training are a big part of the problem” narrative.
2) Is there anyone here with a labor background who can explain to me why unions appear to be throwing all their might behind organizing workers in nursing homes and writing off home care rather than organizing home care workers? I know there’s a long and storied history of pitting poor people against each other that’s probably part of the problem, but the two groups perform such similar tasks and are so demographically similar that it makes sense in my head for them to be lumped into the same unions.
3) We cannot talk about aging at home without talking about the vast amounts of unpaid labor that daughters, sisters, and nieces are expected to perform as part of that process. Right here on AskMe, I can recall multiple instances of posters asking “help, my elderly relative is about to be discharged from the hospital and the hospital is pressuring us into taking on caretaking we cannot sustain to make the discharge happen, what do we do?” It is absolutely okay to not have the temperament for caretaking, or to have a strained relationship with your family that makes caretaking impossible, but the state of funding, waiver waits, etc, is such that family members are often seen as the only option. Wage stagnation and sexism, meanwhile, mean that women run the risk of both temporary poverty during periods of full-time caretaking and longer-term depressed wages due to gaps in working. If we are going to make moves towards aging at home for everyone, there had better be myriad options in place for families with breadwinners who cannot abandon their jobs, queer people with chosen families that aren’t legally recognized, homeless people, single people—anyone who for any reasons may have a limited base of social support to draw on.
posted by I am a Sock, I am an Island at 6:37 AM on August 25, 2020 [153 favorites]
There's also the fact that a lot of us don't have homes that we own, much less retirement plans. We're paying a large chunk of our income to rent, and even with our 401K, when either of us will be unable to work, we'll be in trouble. Both of us retiring is a joke.
The idea of say, my being cared for by my partner full time at home is utterly laughable.
posted by happyroach at 6:39 AM on August 25, 2020 [18 favorites]
The idea of say, my being cared for by my partner full time at home is utterly laughable.
posted by happyroach at 6:39 AM on August 25, 2020 [18 favorites]
One of the reasons nursing homes have thrived in the late 20th/early 21st century is that people are living a LOT longer than they used to. Census data notes that since 1970, life expectancy at birth has risen nearly 10 years, with another 5-10 years increase projected in the next 50 years. (Caveat that this flattens massive disparities on who is actually living longer.)
On an individual level, this is largely a good thing -- it's shocking to read mid-20th century death certificates and see under "Cause of death" a litany of illnesses that are now, for the most part, treatable if not curable. On an aggregate level, though, this means a lot more accumulation of chronic illness. It's a rare person that "bounces back" from a heart attack or stroke; most often, it's a question of gradually accumulating disability (usually supported by women relatives or caregivers, that much hasn't changed over the last century), until that hip fracture or pneumonia that means Gramps can't go home from the hospital and instead "needs placement." Not to mention that sometimes, the nature of the illness -- such as advancing dementia -- means that Gramps being at home may endanger the rest of the family; frail older folks can draw on surprising reserves of strength when agitated, and is it really best for anyone if Gramps needs to be chemically sedated half the time?
All that, coupled with a decided cultural reluctance (including on the parts of physicians) to broach end-of-life discussions -- remember how the GOP freaked everyone out by stating that Obamacare would lead to "death panels" (i.e. voluntary counseling about living wills, advance directives, and end-of-life care options) -- means that the nursing home industry ain't going anywhere anytime soon. If anything, we've managed to export US-style nursing homes to other countries.
There are alternatives to the traditional nursing home, but you have to be richer than Croesus. I just clicked on the only one in my home state, which cheerfully announces, "Residents invest with a one-time entrance fee upon move-in that provides lifetime rights to the home selected. Entrance fees start around $100,000 [emphasis mine] and are based on a variety of factors including the size of residence chosen as well as the number of bedrooms and bathrooms....Residents pay a monthly fee that covers a host of services and amenities including membership to the VMRC Wellness Center, indoor and outdoor shuttle service, snow and trash removal, window washing and so much more. The monthly fee for some residences also includes utilities and flexible dining dollars." These are often in-through-the-front-door-out-through-the-back kind of places, and I'm guessing that "monthly fee" goes up and up and up as you need higher and higher and higher levels of care.
posted by basalganglia at 6:41 AM on August 25, 2020 [18 favorites]
On an individual level, this is largely a good thing -- it's shocking to read mid-20th century death certificates and see under "Cause of death" a litany of illnesses that are now, for the most part, treatable if not curable. On an aggregate level, though, this means a lot more accumulation of chronic illness. It's a rare person that "bounces back" from a heart attack or stroke; most often, it's a question of gradually accumulating disability (usually supported by women relatives or caregivers, that much hasn't changed over the last century), until that hip fracture or pneumonia that means Gramps can't go home from the hospital and instead "needs placement." Not to mention that sometimes, the nature of the illness -- such as advancing dementia -- means that Gramps being at home may endanger the rest of the family; frail older folks can draw on surprising reserves of strength when agitated, and is it really best for anyone if Gramps needs to be chemically sedated half the time?
All that, coupled with a decided cultural reluctance (including on the parts of physicians) to broach end-of-life discussions -- remember how the GOP freaked everyone out by stating that Obamacare would lead to "death panels" (i.e. voluntary counseling about living wills, advance directives, and end-of-life care options) -- means that the nursing home industry ain't going anywhere anytime soon. If anything, we've managed to export US-style nursing homes to other countries.
There are alternatives to the traditional nursing home, but you have to be richer than Croesus. I just clicked on the only one in my home state, which cheerfully announces, "Residents invest with a one-time entrance fee upon move-in that provides lifetime rights to the home selected. Entrance fees start around $100,000 [emphasis mine] and are based on a variety of factors including the size of residence chosen as well as the number of bedrooms and bathrooms....Residents pay a monthly fee that covers a host of services and amenities including membership to the VMRC Wellness Center, indoor and outdoor shuttle service, snow and trash removal, window washing and so much more. The monthly fee for some residences also includes utilities and flexible dining dollars." These are often in-through-the-front-door-out-through-the-back kind of places, and I'm guessing that "monthly fee" goes up and up and up as you need higher and higher and higher levels of care.
posted by basalganglia at 6:41 AM on August 25, 2020 [18 favorites]
My BFF's sister is a personal care worker in a nursing home and so I have heard a bit about what it is like to work there in a very third hand sort of way. One of the things I heard was that she is allocated 6 minutes per patient to get them out of bed, to the bathroom, dressed and to the breakfast room.
I am a mostly able-bodied adult and I would have to be in a considerable hurry to get those things done in 6 minutes. I can't imagine doing it for someone else. But the facility has budgets to meet, so that's what is allowed. I don't think the problem is that the staff wants to be neglectful, but they are forced into it by owners and managers and levels of funding from the government.
posted by jacquilynne at 6:45 AM on August 25, 2020 [26 favorites]
I am a mostly able-bodied adult and I would have to be in a considerable hurry to get those things done in 6 minutes. I can't imagine doing it for someone else. But the facility has budgets to meet, so that's what is allowed. I don't think the problem is that the staff wants to be neglectful, but they are forced into it by owners and managers and levels of funding from the government.
posted by jacquilynne at 6:45 AM on August 25, 2020 [26 favorites]
"Is there anyone here with a labor background who can explain to me why unions appear to be throwing all their might behind organizing workers in nursing homes and writing off home care rather than organizing home care workers? "
I don't have first hand knowledge of the health care sector, but generally it is much harder to organize workers who are physically seperated, and likely to be, contractors or temporary workers rather than employees.
posted by mikek at 6:50 AM on August 25, 2020 [10 favorites]
I don't have first hand knowledge of the health care sector, but generally it is much harder to organize workers who are physically seperated, and likely to be, contractors or temporary workers rather than employees.
posted by mikek at 6:50 AM on August 25, 2020 [10 favorites]
I came here to say “This smells like an astroturfing effort to foist what should be a socialized cost off on already-struggling individuals and families” but a lot of people upthread have already said it better.
posted by mhoye at 6:57 AM on August 25, 2020 [27 favorites]
posted by mhoye at 6:57 AM on August 25, 2020 [27 favorites]
I can't find the data, but I'm pretty sure the share of elderly in nursing homes has declined by about half over the last few decades. That's offset by overall population aging, so the number has remained about constant - but still means that average number of years a person spends in them has declined substantially. A lot of that is from growth in assisted living.
posted by Mr.Know-it-some at 7:03 AM on August 25, 2020 [3 favorites]
posted by Mr.Know-it-some at 7:03 AM on August 25, 2020 [3 favorites]
Is there anyone here with a labor background who can explain to me why unions appear to be throwing all their might behind organizing workers in nursing homes and writing off home care rather than organizing home care workers?
My wife works for a small home care firm. They are not a skilled care firm, though. Workers in nursing homes tend to be skilled and credentialed at some level or another. Unions would also be dealing directly with large regional or national corporations.
Home health, otoh, consists largely of unskilled workers, working for umpteen small area services. In the case of my wife's small firm, their pricing of service and employee pay is based almost entirely on what Medicare/Medicaid/Veterans Admin. will reimburse for their time (which is criminally low.) They have a small handful of private-pay clients, but even they have reimbursement limits. There's also the incredibly transient nature of their employees. Their employees come and go like the tide. Some never even show up for orientation after accepting the position.
All that is to say that unionizing home health (at least the unskilled workers) probably just isn't workable, due to all the variables, especially the reimbursement levels of the various gov services. It would be akin to herding cats, I suspect.
posted by Thorzdad at 7:14 AM on August 25, 2020 [3 favorites]
My wife works for a small home care firm. They are not a skilled care firm, though. Workers in nursing homes tend to be skilled and credentialed at some level or another. Unions would also be dealing directly with large regional or national corporations.
Home health, otoh, consists largely of unskilled workers, working for umpteen small area services. In the case of my wife's small firm, their pricing of service and employee pay is based almost entirely on what Medicare/Medicaid/Veterans Admin. will reimburse for their time (which is criminally low.) They have a small handful of private-pay clients, but even they have reimbursement limits. There's also the incredibly transient nature of their employees. Their employees come and go like the tide. Some never even show up for orientation after accepting the position.
All that is to say that unionizing home health (at least the unskilled workers) probably just isn't workable, due to all the variables, especially the reimbursement levels of the various gov services. It would be akin to herding cats, I suspect.
posted by Thorzdad at 7:14 AM on August 25, 2020 [3 favorites]
Humans, like as organisms, did not develop to live in isolated couple-pods with only the children of that couple, and then alone with a partner after the kids move out. I’m not saying this means we “should” do x y or z - as far as I’m concerned it’s a neutral fact, just like how we didn’t evolve to sit in front of computers all day and are suffering more back problems and myopia as a result. For most of human existence we lived in much larger household groups, which made elder care typically the responsibility of a larger group of people.
posted by showbiz_liz at 7:16 AM on August 25, 2020 [16 favorites]
posted by showbiz_liz at 7:16 AM on August 25, 2020 [16 favorites]
as far as I’m concerned it’s a neutral fact
Evo-psych arguments, however well-intentioned, aren't neutral facts. Particularly when they're brought into discussions about profit and power. This is perhaps unkind of me, and may not reflect your intentions, but "humans are wired this way" arguments are a long-favored tool of private capital and other enemies of the collective good.
posted by mhoye at 7:21 AM on August 25, 2020 [37 favorites]
Evo-psych arguments, however well-intentioned, aren't neutral facts. Particularly when they're brought into discussions about profit and power. This is perhaps unkind of me, and may not reflect your intentions, but "humans are wired this way" arguments are a long-favored tool of private capital and other enemies of the collective good.
posted by mhoye at 7:21 AM on August 25, 2020 [37 favorites]
She has a safe place to go for walks and she doesn't feel like she's a burden.
My grandmother moved into an assisted living facility about a year ago, and even with the pandemic, she's the happiest that she's been in a long time—and I think a lot of that has to do with her not feeling that she's a burden to anyone.
She had been living with my aunt, who worked so hard to take care of her, but all the love in the world sometimes doesn't beat the experience of a professional. Now that she has professional staff to help her with physical therapy, medication, and everyday needs, she's getting around better, and feeling better. The change in her has been remarkable.
To be sure, there are tons of exploitative assisted living facilities out there, and some elderly would benefit by living with loved ones, but abolishing nursing homes is certainly not the answer.
posted by vitout at 7:21 AM on August 25, 2020 [14 favorites]
My grandmother moved into an assisted living facility about a year ago, and even with the pandemic, she's the happiest that she's been in a long time—and I think a lot of that has to do with her not feeling that she's a burden to anyone.
She had been living with my aunt, who worked so hard to take care of her, but all the love in the world sometimes doesn't beat the experience of a professional. Now that she has professional staff to help her with physical therapy, medication, and everyday needs, she's getting around better, and feeling better. The change in her has been remarkable.
To be sure, there are tons of exploitative assisted living facilities out there, and some elderly would benefit by living with loved ones, but abolishing nursing homes is certainly not the answer.
posted by vitout at 7:21 AM on August 25, 2020 [14 favorites]
For what it's worth, I also thought my grandmother was really happy in her assisted living place. But I don't think it was a total institution in the way that nursing homes are: she had a lot of autonomy and was able to take advantage of it. She ate some meals in the dining room but a lot in her apartment. She called on the staff to do things like fix little things that went wrong in her apartment, but she didn't need them to assist with bathing or other personal tasks. At some point she had to stop driving, but they had a van that took her to the grocery store and the mall to go shopping. It was kind of more like a college dorm than a nursing home. I think that's a different proposition.
My mom recently died of an illness that left her physically and cognitively disabled for her last five months. She was able to die at home, for which I will always, always be grateful. But she was only able to do that because my parents had a ton of resources, including really excellent longterm care insurance of a sort that is not available to many people. She was only able to do that because of the work of home health aides, all of whom were women of color who were paid poverty wages. (My family has tried to do right by them, but that meant violating the terms of a contract that we signed with the home health agency, which said that we would not pay them anything on top of their agreed-upon rate. And there could be significant financial penalties for both them and us if the agency found out that we were supplementing their pay. And again, my family was only able to supplement their wages because we have financial resources.) And she was only able to do that because I literally dropped everything, moved into my parents' house for five months, and did nothing except work, sleep, and take care of my mother. Literally nothing. And while that was (barely) tenable for five months, there's no way that I could have done it for ten years. I'm a human being. I need to be entitled to do something other than work, sleep, and attend to someone's personal needs. And I don't want to have a system that relies on the unpaid work of spinster daughters, because that's oppressive to the spinster daughters and not workable for anyone who fails to have a spinster daughter. I basically agree with everything she says in this article, and I also don't know how to fix the fundamental things that need to be fixed in order to make it possible to abolish nursing homes without adding to the oppression of a lot of women.
posted by ArbitraryAndCapricious at 7:40 AM on August 25, 2020 [49 favorites]
My mom recently died of an illness that left her physically and cognitively disabled for her last five months. She was able to die at home, for which I will always, always be grateful. But she was only able to do that because my parents had a ton of resources, including really excellent longterm care insurance of a sort that is not available to many people. She was only able to do that because of the work of home health aides, all of whom were women of color who were paid poverty wages. (My family has tried to do right by them, but that meant violating the terms of a contract that we signed with the home health agency, which said that we would not pay them anything on top of their agreed-upon rate. And there could be significant financial penalties for both them and us if the agency found out that we were supplementing their pay. And again, my family was only able to supplement their wages because we have financial resources.) And she was only able to do that because I literally dropped everything, moved into my parents' house for five months, and did nothing except work, sleep, and take care of my mother. Literally nothing. And while that was (barely) tenable for five months, there's no way that I could have done it for ten years. I'm a human being. I need to be entitled to do something other than work, sleep, and attend to someone's personal needs. And I don't want to have a system that relies on the unpaid work of spinster daughters, because that's oppressive to the spinster daughters and not workable for anyone who fails to have a spinster daughter. I basically agree with everything she says in this article, and I also don't know how to fix the fundamental things that need to be fixed in order to make it possible to abolish nursing homes without adding to the oppression of a lot of women.
posted by ArbitraryAndCapricious at 7:40 AM on August 25, 2020 [49 favorites]
It's an admittedly short piece and the title is misleadingly hyperbolic. I posted it partly because the issue of eldercare is, IMHO, underdiscussed. I would like to see more resources put toward making it easier for people to explore and pursue the option of aging in place, whether they are Medicare clients or have access to private long-term care insurance. Our experiences with our own aging parents (both dementia-sufferers, among other ailments) is that working out the insurance coverage for facility care was--if not simple, at least more straightforward than trying to arrange coverage for in-home care, even if my mom's current living situation is well suited for her to remain in home for as long as possible. In the past year my sister and her family (local to my mom) have fought really hard to bring mom home from a skilled care facility after recovering from a fall, and as the Covid pandemic broke and spread we are really glad she did. But it was hard, and this is for someone with private long-term care insurance. As with so many other health-related issues, ultimately policies are being driven by industries and financial motives and not the best interests of patients and their families.
posted by drlith at 7:44 AM on August 25, 2020 [6 favorites]
posted by drlith at 7:44 AM on August 25, 2020 [6 favorites]
Yeah.
My mother is 72, she's experiencing mobility problems, she lives with me, my partner, and our son, and mostly it's ok but right now she doesn't need a lot of help. Sooner rather than later she will. Her mobility problems are getting worse.
And, much as we all love each other, the truth is that we don't really like living together. We don't hate it, but she'd much rather have her own place and we'd rather she did. Having her move in seemed like a good idea at first, my partner likes my mother a lot which is fortunate but it's still not a comfortable situation for anyone.
And that's with a person who is fairly independent, needs minimal care, and isn't suffering any age related mental decline. Going forward it's going to be unavoidably tougher. None of us want her, or us later on, to be warehoused in a place while we wait to die. But we're all fairly poor, and the prices for even very limited assisted living are obscene.
Aging in America is terrifying. It's part and parcel of our entire healthcare failure.
posted by sotonohito at 8:06 AM on August 25, 2020 [15 favorites]
My mother is 72, she's experiencing mobility problems, she lives with me, my partner, and our son, and mostly it's ok but right now she doesn't need a lot of help. Sooner rather than later she will. Her mobility problems are getting worse.
And, much as we all love each other, the truth is that we don't really like living together. We don't hate it, but she'd much rather have her own place and we'd rather she did. Having her move in seemed like a good idea at first, my partner likes my mother a lot which is fortunate but it's still not a comfortable situation for anyone.
And that's with a person who is fairly independent, needs minimal care, and isn't suffering any age related mental decline. Going forward it's going to be unavoidably tougher. None of us want her, or us later on, to be warehoused in a place while we wait to die. But we're all fairly poor, and the prices for even very limited assisted living are obscene.
Aging in America is terrifying. It's part and parcel of our entire healthcare failure.
posted by sotonohito at 8:06 AM on August 25, 2020 [15 favorites]
Oh, I'm very glad you posted it, drlith! I think this is an incredibly important conversation to have and I think it's worth starting from the premise that nursing homes are inevitably oppressive and should be abolished. And I think that in general, we're much more likely to hear from able-bodied caregivers like me than from disabled people like Sara Luterman, who wrote this piece, so it's an important corrective to the way these conversations usually go.
(Although actually, I'm not sure that it's true that you hear a lot from able-bodied caregivers who actually give the care. Like, I don't know how many people who write about this stuff have ever actually changed an adult diaper. I'd be kind of curious. I think there are *a lot* of voices that get left out of conversations about aging in America, including those of people who do the physical work of caregiving.)
posted by ArbitraryAndCapricious at 8:10 AM on August 25, 2020 [7 favorites]
(Although actually, I'm not sure that it's true that you hear a lot from able-bodied caregivers who actually give the care. Like, I don't know how many people who write about this stuff have ever actually changed an adult diaper. I'd be kind of curious. I think there are *a lot* of voices that get left out of conversations about aging in America, including those of people who do the physical work of caregiving.)
posted by ArbitraryAndCapricious at 8:10 AM on August 25, 2020 [7 favorites]
And, much as we all love each other, the truth is that we don't really like living together.
This is us as well. We’ve been a multigenerational household for a decade now, because my cop uncle was disabled on the job and then screwed out of his medical retirement and lost his house. We’ve now spent more of our marriage with him here than without him, in a one-bathroom shotgun house. It’s effectively impossible for any of us to really live as we want to.
Being the only woman in the household, and also the primary breadwinner, I’m not altogether sure what the extended family might expect me to do when things go downhill. And they will: he smokes like a chimney, and has had multiple cancers and neurological issues. Plus, he’s (rightly) terrified that his next trip to the VA will expose him to COVID-19, so he’s not getting any of his usual checkups.
There are upsides, but I would have liked to be able to move away by now, or to have kids. (If only he had kids of his own...) If he ends up in a facility, I’ll feel like a failure. In some ways, I already do.
posted by armeowda at 8:28 AM on August 25, 2020 [13 favorites]
This is us as well. We’ve been a multigenerational household for a decade now, because my cop uncle was disabled on the job and then screwed out of his medical retirement and lost his house. We’ve now spent more of our marriage with him here than without him, in a one-bathroom shotgun house. It’s effectively impossible for any of us to really live as we want to.
Being the only woman in the household, and also the primary breadwinner, I’m not altogether sure what the extended family might expect me to do when things go downhill. And they will: he smokes like a chimney, and has had multiple cancers and neurological issues. Plus, he’s (rightly) terrified that his next trip to the VA will expose him to COVID-19, so he’s not getting any of his usual checkups.
There are upsides, but I would have liked to be able to move away by now, or to have kids. (If only he had kids of his own...) If he ends up in a facility, I’ll feel like a failure. In some ways, I already do.
posted by armeowda at 8:28 AM on August 25, 2020 [13 favorites]
I was the primary point-person in handling these decisions for my (now late) mother and stepfather, and now I’m embroiled in it again for my dad and stepmother.
One of the things that was super helpful is that Medicaid benefits “follow the person”, so if an elder can be Medicaid-qualified, then they can take those benefits into home care, by having a 40-hr/week caregiver at home, paid for by Medicaid.
But this leaves a lot of gaps and penumbras around elder care that, as others have said, make this whole landscape super challenging. What would make it more helpful is:
1. Expand the benefit itself, to be able to provide for 24/7 caretaking at home if the elder needs it,
2. Expand the ability to qualify for the benefit, so that you don’t have to be declared indigent in order to get it,
3. Subsidize Assisted Living options, so that it’s actually a feasible option within financial reach,
4. And maybe require a minimum staffing level in a SNF so that there is at least a standard of care capacity there,
A few other things come to mind, but those are the big ones that jump out...
Anyway, my heart goes out to anyone dealing with this. I’m now on my second pair of elderly parents with major health issues. My summer was spent in GA helping my parents manage the medical, legal, and financial issues around a series of health crises, complicated by their dementia and Covid lockdown protocols. (While simultaneously trying to get ready for online teaching in the fall.)
Two hospital stays, three rehab facilities, and a nursing home, an elder attorney, and a whole lot of drama. It’s exhausting. Fortunately, I have a couple of siblings who are great help back in GA, without whom this would be completely unmanageable unless I were to basically give up my career, which is what I literally did here in AZ when it happened to the first set of parents.
And yeah, as a single gay guy in his 50s, with no kids to help me when I’m elderly, I often think about what my sunset years are going to look like...
posted by darkstar at 8:32 AM on August 25, 2020 [18 favorites]
One of the things that was super helpful is that Medicaid benefits “follow the person”, so if an elder can be Medicaid-qualified, then they can take those benefits into home care, by having a 40-hr/week caregiver at home, paid for by Medicaid.
But this leaves a lot of gaps and penumbras around elder care that, as others have said, make this whole landscape super challenging. What would make it more helpful is:
1. Expand the benefit itself, to be able to provide for 24/7 caretaking at home if the elder needs it,
2. Expand the ability to qualify for the benefit, so that you don’t have to be declared indigent in order to get it,
3. Subsidize Assisted Living options, so that it’s actually a feasible option within financial reach,
4. And maybe require a minimum staffing level in a SNF so that there is at least a standard of care capacity there,
A few other things come to mind, but those are the big ones that jump out...
Anyway, my heart goes out to anyone dealing with this. I’m now on my second pair of elderly parents with major health issues. My summer was spent in GA helping my parents manage the medical, legal, and financial issues around a series of health crises, complicated by their dementia and Covid lockdown protocols. (While simultaneously trying to get ready for online teaching in the fall.)
Two hospital stays, three rehab facilities, and a nursing home, an elder attorney, and a whole lot of drama. It’s exhausting. Fortunately, I have a couple of siblings who are great help back in GA, without whom this would be completely unmanageable unless I were to basically give up my career, which is what I literally did here in AZ when it happened to the first set of parents.
And yeah, as a single gay guy in his 50s, with no kids to help me when I’m elderly, I often think about what my sunset years are going to look like...
posted by darkstar at 8:32 AM on August 25, 2020 [18 favorites]
Evo-psych arguments, however well-intentioned, aren't neutral facts. Particularly when they're brought into discussions about profit and power. This is perhaps unkind of me, and may not reflect your intentions, but "humans are wired this way" arguments are a long-favored tool of private capital and other enemies of the collective good.
I am trying to conjure a neutral fact, strictly speaking I don't think this is possible. It's one thing to describe how powerful interests can co-opt just about anything to rationalize any abuse imaginable.. Naturally, we grab the tools available and do what we do. Perhaps some of us attempt to use tools to support one another and establish objectively more sustainable and egalitarian conditions.
I took the comment in a different spirit. Having seen what isolation did to my mother in her last 5 years, I have no doubt on this issue: young or old, most of us need to live in communities.
posted by elkevelvet at 8:32 AM on August 25, 2020 [5 favorites]
I am trying to conjure a neutral fact, strictly speaking I don't think this is possible. It's one thing to describe how powerful interests can co-opt just about anything to rationalize any abuse imaginable.. Naturally, we grab the tools available and do what we do. Perhaps some of us attempt to use tools to support one another and establish objectively more sustainable and egalitarian conditions.
I took the comment in a different spirit. Having seen what isolation did to my mother in her last 5 years, I have no doubt on this issue: young or old, most of us need to live in communities.
posted by elkevelvet at 8:32 AM on August 25, 2020 [5 favorites]
I basically agree with everything she says in this article, and I also don't know how to fix the fundamental things that need to be fixed in order to make it possible to abolish nursing homes without adding to the oppression of a lot of women.
Well, I have an idea, but it would never happen without everyone in our government undergoing a huge seismic mental shift. (*Cough*governmentsubsidizedsinglepayereldercare*cough*)
posted by EmpressCallipygos at 8:32 AM on August 25, 2020 [12 favorites]
Well, I have an idea, but it would never happen without everyone in our government undergoing a huge seismic mental shift. (*Cough*governmentsubsidizedsinglepayereldercare*cough*)
posted by EmpressCallipygos at 8:32 AM on August 25, 2020 [12 favorites]
I think a lot of eldercare actually is single payer, with the single payer being Medicaid. It hasn't really fixed the (multiple, complicated, overlapping) problems that lead to people ending up in nursing homes. I don't actually think this is an issue that is amenable to single-phrase solutions.
posted by ArbitraryAndCapricious at 8:46 AM on August 25, 2020 [11 favorites]
posted by ArbitraryAndCapricious at 8:46 AM on August 25, 2020 [11 favorites]
Well, when I think about the history of differing human family and social structures, the relatively recent phenomenon of nuclear families, and how power and profit fit in, it seems complex and tricky to talk about but also important. I notice within myself an impulse to say, we need more communal living situations, more extended families living together (with a broad, open definition of family that includes blood family, found family, chosen family, queer, ace/aro, and poly family) and then I realize that, given how things currently are, making that shift in the case of older folks who need a lot of daily support would involve a lot more burden falling on women and femme relatives, like multiple people have pointed out.
Coming at this from another angle, one of the things that I think is important and not very presenced in this conversation (here or more broadly in UScentric spaces) is that having folks from multiple generations interacting and sharing closeness--meals, conversations, games--is important for both individual and, in my opinion, social health. Like, placing older folks in institutions cut off from the flow of daily life and essentially bereft of any purpose or social meaning fairly obviously is hurtful to those people, but it's also hurting everyone else by depriving us of connection with our elders.
In societies with so many layers of oppression and dysfunction, it might be hard or even unsafe to be in connection with elders sometimes and/or for some people. So that's real. And also, to me, the way the US relates to older folks feels super connected to the worship of youth, the obsession with newness, the disregarding (or worse) of history.
So, while it might not really make sense to simply return to older practices of multi-generational family households, I do think we can consider the importance of multi-generational connection in how we design and structure institutions. This is already happening, with things like child care centers in nursing homes and care centers for both the young and old.
Alongside of things like universal health care, better wages and working conditions for care workers, universal basic income, worker-owned cooperatives (imagine how the priorities of a worker-owned and run long term care facility would shift from the current ones, especially with abundant funding), I think generationally integrated spaces are something to advocate for.
posted by overglow at 8:49 AM on August 25, 2020 [10 favorites]
Coming at this from another angle, one of the things that I think is important and not very presenced in this conversation (here or more broadly in UScentric spaces) is that having folks from multiple generations interacting and sharing closeness--meals, conversations, games--is important for both individual and, in my opinion, social health. Like, placing older folks in institutions cut off from the flow of daily life and essentially bereft of any purpose or social meaning fairly obviously is hurtful to those people, but it's also hurting everyone else by depriving us of connection with our elders.
In societies with so many layers of oppression and dysfunction, it might be hard or even unsafe to be in connection with elders sometimes and/or for some people. So that's real. And also, to me, the way the US relates to older folks feels super connected to the worship of youth, the obsession with newness, the disregarding (or worse) of history.
So, while it might not really make sense to simply return to older practices of multi-generational family households, I do think we can consider the importance of multi-generational connection in how we design and structure institutions. This is already happening, with things like child care centers in nursing homes and care centers for both the young and old.
Alongside of things like universal health care, better wages and working conditions for care workers, universal basic income, worker-owned cooperatives (imagine how the priorities of a worker-owned and run long term care facility would shift from the current ones, especially with abundant funding), I think generationally integrated spaces are something to advocate for.
posted by overglow at 8:49 AM on August 25, 2020 [10 favorites]
I think a lot of eldercare actually is single payer, with the single payer being Medicaid. It hasn't really fixed the (multiple, complicated, overlapping) problems that lead to people ending up in nursing homes.
Ah, but I didn't necessarily mean "nursing homes" when I said "single payer government-subsidized eldercare". I was envisioning more "whatever route you choose, the government will pay for it, and at a rate that will enable you to not only get high quality care, but will also enable the caregivers you've hired to make a living wage themselves.
More like, if you need an assisted-care facility, the government pays for a state-of-the-art fully-staffed one, but if you'd prefer to have a home health care aide to visit twice a week as you remain at home, the government pays for that too - and they pay a salary well above minimum wage.
posted by EmpressCallipygos at 8:52 AM on August 25, 2020 [9 favorites]
Ah, but I didn't necessarily mean "nursing homes" when I said "single payer government-subsidized eldercare". I was envisioning more "whatever route you choose, the government will pay for it, and at a rate that will enable you to not only get high quality care, but will also enable the caregivers you've hired to make a living wage themselves.
More like, if you need an assisted-care facility, the government pays for a state-of-the-art fully-staffed one, but if you'd prefer to have a home health care aide to visit twice a week as you remain at home, the government pays for that too - and they pay a salary well above minimum wage.
posted by EmpressCallipygos at 8:52 AM on August 25, 2020 [9 favorites]
"people who write about this stuff have ever actually changed an adult diaper" . . . that would be me and tomorrow, I am rostered for another 24 shift with my quietly demented 95y.o. FIL. Actually I am respiting that shift, so my wife, his daughter, can get some physiotherapy for own aging bones. When he was widowed, 5 years ago, his children met to formulate a six-month plan and made a pact that he could stay in his own gaff "until he didn't know where he was". They agreed to contribute either time or money insofar as they were able. But external stuff [redundancy, arthritis, angina, off-the-rails teenager, coronarama] is eroding this worthy aim. The crazy thing is that, if/when he does have that fall and goes to hospital, he can get discharged to a nursing home on the government nickle but the same government can't mobilise a week's respite care to keep the family sane and fit.
And I tell ya that quietly demented sure beats roaring demented. One of the last independent things that Pat did was drop into the local police station on his 2x daily walk and demand that they take him to the President immediately because he knew that the UK Queen's corgis were secreted in the basement of the Vatican. That was on my watch, I really didn't see it coming.
posted by BobTheScientist at 8:54 AM on August 25, 2020 [25 favorites]
And I tell ya that quietly demented sure beats roaring demented. One of the last independent things that Pat did was drop into the local police station on his 2x daily walk and demand that they take him to the President immediately because he knew that the UK Queen's corgis were secreted in the basement of the Vatican. That was on my watch, I really didn't see it coming.
posted by BobTheScientist at 8:54 AM on August 25, 2020 [25 favorites]
then I realize that, given how things currently are, making that shift in the case of older folks who need a lot of daily support would involve a lot more burden falling on women and femme relatives, like multiple people have pointed out.
Keeping in mind that our society is what it is and given there isn't a way to instantaneously change socialization patterns between genders or imbue caregiving skills into men, we could nevertheless instantaneously and immediately alleviate this injustice perpetrated on predominantly female/femme family caregivers by compensating them the same way we do soldiers or cops: good wages, great benefits, hazard pay, and pensions. (Some of these ideals don't actually happen in reality, I know, but at least we already accept the need for all that in theory and consider any shortfall an outrage. That's half the point: recognizing that female-coded family caregiving real work that benefits everyone in society and is therefore deserving of compensation on par with male-coded protection work.)
posted by MiraK at 9:21 AM on August 25, 2020 [18 favorites]
Keeping in mind that our society is what it is and given there isn't a way to instantaneously change socialization patterns between genders or imbue caregiving skills into men, we could nevertheless instantaneously and immediately alleviate this injustice perpetrated on predominantly female/femme family caregivers by compensating them the same way we do soldiers or cops: good wages, great benefits, hazard pay, and pensions. (Some of these ideals don't actually happen in reality, I know, but at least we already accept the need for all that in theory and consider any shortfall an outrage. That's half the point: recognizing that female-coded family caregiving real work that benefits everyone in society and is therefore deserving of compensation on par with male-coded protection work.)
posted by MiraK at 9:21 AM on August 25, 2020 [18 favorites]
Well hey if it’s not my life’s work. Absolutely tons of great comments up above, just my four cents to add:
I have worked in and around nursing homes, and Assisted Living, and Memory Care, and Adult Day Programs (HCBS), and now I’m in PACE, yet another effort to make aging in America a humane experience. It’s not.
BAN NURSING HOMES does not understand the problem. Total institutions are absolutely bad. Nursing homes are often absolutely bad. I have called APS many times in my career, not least on nursing homes. But I hear this argument as “Schools are bad; let’s ban schools and everyone will homeschool!” Does not fix the problem and opens many more.
Money is the root of problems here. Money is why facilities that have enough to provide excellent care still perform at minimum levels though they could do better. Money is why facilities that do not have enough scrape by and fail. Money is why pay is abysmal and conditions are horrific and turnover is constant. Money is why the choice to either pay for a facility or stop working to care at home is an existential nightmare. Money money money.
What’s the solution? Money. More pay and higher standards for care staff. Make it a profession, raise training standards (while not creating employment barriers for those who need this work), pay so you can support a family on a caregiver salary. Develop standards equivalent to nursing or physical therapy in caregiving, memory support, home care. Use this to uplift workers into skilled, compensated careers. Make facilities compete for staff through quality and career support. Increase funding for HCBS so the waitlist goes away; provide education and support to family care partners. Offer RESPITE to care partners; concert facilities into day and respite programs. Close most facilities and put the money into the above. Focus on getting services into rural and exurban areas and inner cities. Create public spaces and civic life with room for disability and dementia. Allow choices for people and their families.
What does that cost? A shit ton. To be sure. But the cost of caring for people living with dementia alone is $305 billion, and unpaid caregiving is worth $244 billion (2020 Alzheimer’s Facts and Figures). Billions and billions in poorly targeted payments. Billions more in lost wages. It can balance out a better way.
We just have to decide that we can’t throw people away.
posted by skookumsaurus rex at 9:38 AM on August 25, 2020 [45 favorites]
I have worked in and around nursing homes, and Assisted Living, and Memory Care, and Adult Day Programs (HCBS), and now I’m in PACE, yet another effort to make aging in America a humane experience. It’s not.
BAN NURSING HOMES does not understand the problem. Total institutions are absolutely bad. Nursing homes are often absolutely bad. I have called APS many times in my career, not least on nursing homes. But I hear this argument as “Schools are bad; let’s ban schools and everyone will homeschool!” Does not fix the problem and opens many more.
Money is the root of problems here. Money is why facilities that have enough to provide excellent care still perform at minimum levels though they could do better. Money is why facilities that do not have enough scrape by and fail. Money is why pay is abysmal and conditions are horrific and turnover is constant. Money is why the choice to either pay for a facility or stop working to care at home is an existential nightmare. Money money money.
What’s the solution? Money. More pay and higher standards for care staff. Make it a profession, raise training standards (while not creating employment barriers for those who need this work), pay so you can support a family on a caregiver salary. Develop standards equivalent to nursing or physical therapy in caregiving, memory support, home care. Use this to uplift workers into skilled, compensated careers. Make facilities compete for staff through quality and career support. Increase funding for HCBS so the waitlist goes away; provide education and support to family care partners. Offer RESPITE to care partners; concert facilities into day and respite programs. Close most facilities and put the money into the above. Focus on getting services into rural and exurban areas and inner cities. Create public spaces and civic life with room for disability and dementia. Allow choices for people and their families.
What does that cost? A shit ton. To be sure. But the cost of caring for people living with dementia alone is $305 billion, and unpaid caregiving is worth $244 billion (2020 Alzheimer’s Facts and Figures). Billions and billions in poorly targeted payments. Billions more in lost wages. It can balance out a better way.
We just have to decide that we can’t throw people away.
posted by skookumsaurus rex at 9:38 AM on August 25, 2020 [45 favorites]
Compensating female-coded labor is a good idea, but there is no amount of compensation and respite that would have made me more able to care for my aging mother in her home without destroying my mental (and possibly physical) health. I think this is the case for many, many people. There isn't an easy solution here, and the best solutionsIMO are going to involve drastically improving institutional care rather than putting the burden back on the family caregivers.
posted by mkuhnell at 9:57 AM on August 25, 2020 [21 favorites]
posted by mkuhnell at 9:57 AM on August 25, 2020 [21 favorites]
We collectively way underestimate how policies and choices regarding our built environment have negative unintended consequences like the ones we are discussing here. Aging in place is good if the place we are talking about is “condo, apartment, townhouse or senior community that we moved to after retirement.” It is not good if place means “single family home in a car-dependent suburb that we bought into 40 years ago.” We simply don’t have a way to provide high-quality, equitable care in that type of built environment. An environment where people are scattered around, isolated, completely reliant on cars and the labor of a service class that can’t afford to live in the community (often because the people reliant on their labor are trying to keep them from living there!).
I think we get better outcomes focusing on creating communities that are hospitable to people of different ages and incomes. Making communities where people are not as car-dependent, where density means people who need support live in closer proximity to each other and the people providing the labor have housing options within the communities they work.
Not under ANY illusion that this will in any way be easy. We are seeing now that nice white liberals will fight endlessly to keep any apartments from being built in their single family home communities. I just don’t see how abolishing nursing homes doesn’t shift the problem to a different domain but with the burdens still shouldered by the already marginalized among us.
posted by scantee at 9:58 AM on August 25, 2020 [17 favorites]
I think we get better outcomes focusing on creating communities that are hospitable to people of different ages and incomes. Making communities where people are not as car-dependent, where density means people who need support live in closer proximity to each other and the people providing the labor have housing options within the communities they work.
Not under ANY illusion that this will in any way be easy. We are seeing now that nice white liberals will fight endlessly to keep any apartments from being built in their single family home communities. I just don’t see how abolishing nursing homes doesn’t shift the problem to a different domain but with the burdens still shouldered by the already marginalized among us.
posted by scantee at 9:58 AM on August 25, 2020 [17 favorites]
If my grandmother weren't in a skilled care facility my mother would be literally dying trying to take care of her. She's been manipulative and just lucid enough that conservatorship isn't a slam dunk, and will fire any home health aides and possibly burn down her home which is a multifamily dwelling so there's others at risk. Because she knows she can manipulate my mother after a lifetime of basically grooming her for it she won't take help from anyone else unless that help can be used to guilt or manipulate my mom. So, yes, she didn't initially want to be in a home, but I'm still thankful it's an option.
posted by BrotherCaine at 10:00 AM on August 25, 2020 [1 favorite]
posted by BrotherCaine at 10:00 AM on August 25, 2020 [1 favorite]
I was curious to see if the article would mention PACE (more background via Wikipedia). From what I know so far of PACE programs, they provides services that help elderly clients age-in-place at home for longer. I haven't dug into it much, I just know it exists. And in a state where nursing home care is notoriously awful, it sounds like a better option for my parents.
I learned about the Village to Village Network here, via another FPP.
Cohousing is another option I have in the back of my mind.
None of these things are substitutes for a nursing home, but they could help delay the need. Just living in a community where neighbors will check in on you and take action if something doesn't seem right could mean identifying and addressing issues before they spiral into more serious problems that require more intensive care.
posted by bunderful at 10:01 AM on August 25, 2020 [3 favorites]
I learned about the Village to Village Network here, via another FPP.
Cohousing is another option I have in the back of my mind.
None of these things are substitutes for a nursing home, but they could help delay the need. Just living in a community where neighbors will check in on you and take action if something doesn't seem right could mean identifying and addressing issues before they spiral into more serious problems that require more intensive care.
posted by bunderful at 10:01 AM on August 25, 2020 [3 favorites]
I'm trying to figure out where to start. I watched my mother expend a great deal of energy and time into caring for her mother to ensure that she could stay in her little apartment as long as possible. My mother did not like her mother very much, and had great resentments from her childhood, but she took on these duties until it was not safe to leave my grandmother alone any more. My mother was a stay-at-home wife and mom, and could not have worked and also provided this level of care to my grandmother.
Eventually my grandmother was moved to a care home - a small house with under 8 residents. It wasn't the nicest place, but my grandmother has lived all her life in poverty and there just wasn't enough money to place her somewhere fancier. My grandmother lived to be 96 and I can't imagine what it would've done to my mother to try to have her in my parents' home all that time.
Then my dad's father started needing more care. My mother and father expended a great deal of energy and time keeping him in his own house as long as possible. My mother and my grandfather did not get along. Then the dynamics between my parents and my grandfather got even more complicated which I'm not going into here, but very bad blood between everyone. My grandfather did eventually end up in a care home - nice because he had more resources, but again, I cannot imagine the damage it would've done to my parents to try to care for my grandfather in their own home.
THEN my father started suffering from a degenerative neurological condition. He lost control of his lower body - couldn't stand or walk, and couldn't control his bladder or bowels. My mom expended a great deal of energy into keeping him at home, evn after, for instance, the time he fell through the plate glass sliding doors in the living room. But my mom couldn't move him if he fell and their house was not set up at all for a wheelchair. Eventually he was moved to a care home - a very nice, incredibly clean one. My mother visited him every single day and read to him and it was wrenching for all of us, but I can understand why she didn't want 24/7 nurses in her own house. My dad spent four years in this condition and died in February. It fucking sucked.
Now, my father-in-law, who is 80, can't drive anymore suddenly and is not doing great at all, and my husband is expending a great deal of energy in driving him to medical appointments and providing services. My husband actually cannot stand the company of his father but here we are. My husband and I both work full-time, which is a difference between us and my mom, not that I think what my mother went through is fair or good. A conversation I regularly have with myself is when I should try to stop working or cut back working so I can provide care to my mother and my father-in-law. My husband and I are Gen X - we do own a home but it is tiny and we can't afford to buy something bigger to house our parents. I can see the road ahead and it is going to be really, really hard. There just aren't any easy or good choices.
posted by See you tomorrow, saguaro at 10:09 AM on August 25, 2020 [24 favorites]
Eventually my grandmother was moved to a care home - a small house with under 8 residents. It wasn't the nicest place, but my grandmother has lived all her life in poverty and there just wasn't enough money to place her somewhere fancier. My grandmother lived to be 96 and I can't imagine what it would've done to my mother to try to have her in my parents' home all that time.
Then my dad's father started needing more care. My mother and father expended a great deal of energy and time keeping him in his own house as long as possible. My mother and my grandfather did not get along. Then the dynamics between my parents and my grandfather got even more complicated which I'm not going into here, but very bad blood between everyone. My grandfather did eventually end up in a care home - nice because he had more resources, but again, I cannot imagine the damage it would've done to my parents to try to care for my grandfather in their own home.
THEN my father started suffering from a degenerative neurological condition. He lost control of his lower body - couldn't stand or walk, and couldn't control his bladder or bowels. My mom expended a great deal of energy into keeping him at home, evn after, for instance, the time he fell through the plate glass sliding doors in the living room. But my mom couldn't move him if he fell and their house was not set up at all for a wheelchair. Eventually he was moved to a care home - a very nice, incredibly clean one. My mother visited him every single day and read to him and it was wrenching for all of us, but I can understand why she didn't want 24/7 nurses in her own house. My dad spent four years in this condition and died in February. It fucking sucked.
Now, my father-in-law, who is 80, can't drive anymore suddenly and is not doing great at all, and my husband is expending a great deal of energy in driving him to medical appointments and providing services. My husband actually cannot stand the company of his father but here we are. My husband and I both work full-time, which is a difference between us and my mom, not that I think what my mother went through is fair or good. A conversation I regularly have with myself is when I should try to stop working or cut back working so I can provide care to my mother and my father-in-law. My husband and I are Gen X - we do own a home but it is tiny and we can't afford to buy something bigger to house our parents. I can see the road ahead and it is going to be really, really hard. There just aren't any easy or good choices.
posted by See you tomorrow, saguaro at 10:09 AM on August 25, 2020 [24 favorites]
There just aren't any easy or good choices.
That's a big theme here for so many of us.
My father moved from an apartment into assisted living. He's adjusting, but not always well. He insists on driving, even when his feet or hands are in pain. He goes out to buy groceries, even though he dislikes cooking and his taste buds are shot, and the place feeds him 3 meals/day. He resents being with people he deems elderly and disabled, even though he is both of those things. Paying for it exhausts all of his savings. My brother and I will have to figure out what's next when he runs out. We can't afford much.
I'm a researcher who's never been able to save much for retirement (having been an independent for a while, and teaching at low-compensation institution, etc). At 53 I don't think the US social safety net will do much when I'm 65+. My best, most serious hope is that either my next couple of books make a mint, or I have a spectacular, total, killing heart attack about the time I can no longer work.
posted by doctornemo at 10:17 AM on August 25, 2020 [11 favorites]
That's a big theme here for so many of us.
My father moved from an apartment into assisted living. He's adjusting, but not always well. He insists on driving, even when his feet or hands are in pain. He goes out to buy groceries, even though he dislikes cooking and his taste buds are shot, and the place feeds him 3 meals/day. He resents being with people he deems elderly and disabled, even though he is both of those things. Paying for it exhausts all of his savings. My brother and I will have to figure out what's next when he runs out. We can't afford much.
I'm a researcher who's never been able to save much for retirement (having been an independent for a while, and teaching at low-compensation institution, etc). At 53 I don't think the US social safety net will do much when I'm 65+. My best, most serious hope is that either my next couple of books make a mint, or I have a spectacular, total, killing heart attack about the time I can no longer work.
posted by doctornemo at 10:17 AM on August 25, 2020 [11 favorites]
skookumsaurus rex calls for a massive governmental investment into elder care.
On the one hand, this sounds great. Generationally, it could be one of the last achievements of American Baby Boomers.
On the other hand, the politics aren't good. Yes, seniors vote and donate more than anyone else. But otherwise...
posted by doctornemo at 10:19 AM on August 25, 2020 [3 favorites]
On the one hand, this sounds great. Generationally, it could be one of the last achievements of American Baby Boomers.
On the other hand, the politics aren't good. Yes, seniors vote and donate more than anyone else. But otherwise...
posted by doctornemo at 10:19 AM on August 25, 2020 [3 favorites]
The nursing home industry seems to be heavily focused on separating individuals from their accumulated life savings before they can pass them on to family. There are bigger, more socially relevant points made by others here (caring for our elderly should be a societal responsibility). Some people/cases undoubtedly benefit from this type of care.
But to my mind, the reason why so many different levels of elder care exist, to such perpetually escalating levels of luxury and cost, is because corporate America feels strongly that if your people can't take it with them, they can spend it on elder care on the way out.
I don't care if I ever get a nickel from my relatives when they pass. But I am indignant at the idea of them being shaken for coins in their golden years.
posted by DirtyOldTown at 10:45 AM on August 25, 2020 [16 favorites]
But to my mind, the reason why so many different levels of elder care exist, to such perpetually escalating levels of luxury and cost, is because corporate America feels strongly that if your people can't take it with them, they can spend it on elder care on the way out.
I don't care if I ever get a nickel from my relatives when they pass. But I am indignant at the idea of them being shaken for coins in their golden years.
posted by DirtyOldTown at 10:45 AM on August 25, 2020 [16 favorites]
Most are aware that assisted living and requiring skilled nursing care are two completely different levels of care. Not driving can re-orient an elder’s lifestyle however if they can manage decision making and minimal self care, they stay in the community (on a bus line) or can opt into assisted living if they can afford it. It has a lot of risk mitigation because there are fewer power tools and less physicality-lifting a basket of laundry can become optional.
Skilled nursing (Nursing homes) comes into play when activities of daily living such as managing medication, being able to manage personal hygiene when bodies go wonky or lose function, as well as cognitive factors such as consistently managing meals without substantial harm to self/kitchen/others are factors that increase the consideration of skilled care.
Most residential houses are not designed for moving an adult using a wheelchair, or even working with someone who has mobility but cannot handle stairs.
On the Benjamin Button aspect of this, we are really solid on supporting tiny dependent humans, but once they reach adult size...we are deeply under-prepared. Some aspects are improving in the US after 30+ years of the Americans with Disabilities Act and its predecessors. Skilled nursing care will remain a need, it’s more about community and social inclusion.
posted by childofTethys at 11:04 AM on August 25, 2020 [5 favorites]
Skilled nursing (Nursing homes) comes into play when activities of daily living such as managing medication, being able to manage personal hygiene when bodies go wonky or lose function, as well as cognitive factors such as consistently managing meals without substantial harm to self/kitchen/others are factors that increase the consideration of skilled care.
Most residential houses are not designed for moving an adult using a wheelchair, or even working with someone who has mobility but cannot handle stairs.
On the Benjamin Button aspect of this, we are really solid on supporting tiny dependent humans, but once they reach adult size...we are deeply under-prepared. Some aspects are improving in the US after 30+ years of the Americans with Disabilities Act and its predecessors. Skilled nursing care will remain a need, it’s more about community and social inclusion.
posted by childofTethys at 11:04 AM on August 25, 2020 [5 favorites]
I wonder if anyone's ever attempted a member-owned nursing home. Sort of like a co-op or a condo, but where the members and their families have ownership, and there's no outside corporate entity involved.
posted by bunderful at 11:09 AM on August 25, 2020 [2 favorites]
posted by bunderful at 11:09 AM on August 25, 2020 [2 favorites]
We moved my folks into a non-profit assisted living facility when my mother's dementia and increasing frailty made staying in their condo too risky. The idea was that the staff would help alleviate my dad of the burden of full-time care, and they both would get more socialization, and assistance getting to appointments, and so forth.
... within four months the facility had been sold to a for-profit company. The entire management staff was laid off and multiple programs quietly shelved. Later front-facing staff members (like the manager of the memory care unit) departed silently and were not replaced for months, without informing family members of the residents. (I left many unanswered voicemails for various people only to later be informed that so-and-so had left.)
Mom died six months after moving in, full of rage and abusive to the end. Dad stayed for three and a half more years, with varying levels of support from the staff, but really we had to pay out of pocket to get him the supportive care he needed, as well as food he was willing to eat. In the end we were spending $17K/month on his care, including his rent.
We didn't have a lot of options: my mother was unmanageable and it was hard enough dealing with her at a remove. Bringing my parents into my house, or my sister's, would have destroyed our mental health or our careers. And they would have been just as isolated as they were in their condo: at least in the ALF they had people around them most of the time. And at least Dad's career as a literal rocket-scientist granted him the resources to cover these expenses.
As an alternative: my cousin M lived with her mother (my father's older sister) for the last 4 years of my aunt's life, and provided basically all of her care. M did not work, became deeply depressed upon her mother's death, and lost any continuity in her resume. I'm pretty sure that that isn't a fair outcome either.
There needs to be another way. I am single with no kids and I'm scared.
posted by suelac at 11:21 AM on August 25, 2020 [11 favorites]
... within four months the facility had been sold to a for-profit company. The entire management staff was laid off and multiple programs quietly shelved. Later front-facing staff members (like the manager of the memory care unit) departed silently and were not replaced for months, without informing family members of the residents. (I left many unanswered voicemails for various people only to later be informed that so-and-so had left.)
Mom died six months after moving in, full of rage and abusive to the end. Dad stayed for three and a half more years, with varying levels of support from the staff, but really we had to pay out of pocket to get him the supportive care he needed, as well as food he was willing to eat. In the end we were spending $17K/month on his care, including his rent.
We didn't have a lot of options: my mother was unmanageable and it was hard enough dealing with her at a remove. Bringing my parents into my house, or my sister's, would have destroyed our mental health or our careers. And they would have been just as isolated as they were in their condo: at least in the ALF they had people around them most of the time. And at least Dad's career as a literal rocket-scientist granted him the resources to cover these expenses.
As an alternative: my cousin M lived with her mother (my father's older sister) for the last 4 years of my aunt's life, and provided basically all of her care. M did not work, became deeply depressed upon her mother's death, and lost any continuity in her resume. I'm pretty sure that that isn't a fair outcome either.
There needs to be another way. I am single with no kids and I'm scared.
posted by suelac at 11:21 AM on August 25, 2020 [11 favorites]
I desperately hope for the early fatal heart attack because I am incredibly fortunate enough to have good work-based life insurance. If I can cash out on that for the family before I'm too old to be of use to my overlords, then they can probably afford to die slower with some comfort. Barring that, I imagine dying slowly in abject poverty. America is broken.
posted by Abehammerb Lincoln at 11:24 AM on August 25, 2020 [7 favorites]
posted by Abehammerb Lincoln at 11:24 AM on August 25, 2020 [7 favorites]
For better and worse, I am now past the point of dealing with parents or grandparents aging. Dealing with the challenges and accompanying challenges was terrible, but a real problem I experienced while navigating these issues was incomprehension from friends and colleagues—especially, if not exclusively, the “younger” ones. (Yes, I know these challenges come to all of us at different times, just speaking my general experience.)
It was like a curtain fell whenever I tried to talk, even in the smallest authentic way, about the challenges. People tried to sympathize, even so, but thanks to lack of inter generational housing/living, many of them had/have never even been anywhere close to a death in the family, let alone watching years of the indignities of old age. Maybe it’s a byproduct of that ever-popular youth culture overflow mentioned, but people just didn’t get it. Trying to talk about the importance at a policy level... hard.
posted by cupcakeninja at 11:28 AM on August 25, 2020 [7 favorites]
It was like a curtain fell whenever I tried to talk, even in the smallest authentic way, about the challenges. People tried to sympathize, even so, but thanks to lack of inter generational housing/living, many of them had/have never even been anywhere close to a death in the family, let alone watching years of the indignities of old age. Maybe it’s a byproduct of that ever-popular youth culture overflow mentioned, but people just didn’t get it. Trying to talk about the importance at a policy level... hard.
posted by cupcakeninja at 11:28 AM on August 25, 2020 [7 favorites]
Former geriatrics nurse with inadequate time or energy to go in-depth on this, but: more positive alternative models for doing what nursing homes are supposed to do exist. The Green House model is a big one. There are a few in the Netherlands that go a bit farther and essentially provide residents with a full village to encourage as much autonomy and ordinary-rhythm-of-life as possible. But, yes, while having nursing homes run as co-ops is not really workable in practice since the whole concept is to provide 24/7 care, there are alternative facilities that emphasize resident autonomy and encourage as much independent living as possible while maintaining supervisory care as needed. The biggest problem with this in the US is that these places are bloody expensive, so have ended up being treated as luxury care more than as a better standard than the corporate warehousing model.
posted by Lonnrot at 11:37 AM on August 25, 2020 [9 favorites]
posted by Lonnrot at 11:37 AM on August 25, 2020 [9 favorites]
This and other discussions that show up here.. Very revealing that we often skirt around deeper issues repeatedly, and there's a sense that all the inequities, indignities, and wrong-ness that has permeated our lives and the lives of others before us.. It's all accelerating to catch up with us (now? tomorrow? 2021?). Tough choices indeed. I can't see past a sea change that uproots the profit-above-all-else ethos that seems to drive to the heart of so many ills.
posted by elkevelvet at 11:53 AM on August 25, 2020 [3 favorites]
posted by elkevelvet at 11:53 AM on August 25, 2020 [3 favorites]
Some things I believe to be true: Old people are not valued. Old people are shelved. Old people lose their voice. Old people are vulnerable to job discrimination. Old people are vulnerable to physical and financial abuse.
My Mother lived with my sister, a nurse, at the end of her life. Sister charged Independent Living rates for Mom to live there, borrowed many thousands, said Mom 'tore up the note'. From my knowledge of our Mom, not likely. Impossible to prove anything. Family, right?
My other sibling's grown child lived with them for a while, routinely stole from them, was physically threatening, is an addict. Family care is not a given, and abuse of various sorts is not uncommon.
I'm not young, and finding a job that pays adequately is difficult, especially in tech fields, where the belief that Olds are Stupid and Incompetent is gospel. Loss of self-sufficiency is horrible for people and steals dignity.
It bolsters my Socialism as I see that greed/profit/money are the drivers. As people age and maybe have health issues, disabilities, lack of energy, they are devalued, though they may still have a lot of expertise. Some old people do lose competence, some old people don't like to learn new things or adapt to change, some are cranky, but have you met young people? Everybody has baggage.
That said, an aunt with dementia was in a small care home, scruffy but clean enough, and genuinely caring. An acquaintance is a CNA at a nursing home(private and well-funded) where it's clear she respects the residents. Another aunt was in a memory care unit of a municipal nursing home, got amazing care and a peaceful death.
I hope I can work again after Quarantine, because my savings are not vast. When I can't stay in my home, I'll sell it and try an apartment or condo in town. When I run out of money, I suppose the system will passively kill me. Peak Capitalism, w00t!
posted by chekhov's sock at 12:23 PM on August 25, 2020 [3 favorites]
My Mother lived with my sister, a nurse, at the end of her life. Sister charged Independent Living rates for Mom to live there, borrowed many thousands, said Mom 'tore up the note'. From my knowledge of our Mom, not likely. Impossible to prove anything. Family, right?
My other sibling's grown child lived with them for a while, routinely stole from them, was physically threatening, is an addict. Family care is not a given, and abuse of various sorts is not uncommon.
I'm not young, and finding a job that pays adequately is difficult, especially in tech fields, where the belief that Olds are Stupid and Incompetent is gospel. Loss of self-sufficiency is horrible for people and steals dignity.
It bolsters my Socialism as I see that greed/profit/money are the drivers. As people age and maybe have health issues, disabilities, lack of energy, they are devalued, though they may still have a lot of expertise. Some old people do lose competence, some old people don't like to learn new things or adapt to change, some are cranky, but have you met young people? Everybody has baggage.
That said, an aunt with dementia was in a small care home, scruffy but clean enough, and genuinely caring. An acquaintance is a CNA at a nursing home(private and well-funded) where it's clear she respects the residents. Another aunt was in a memory care unit of a municipal nursing home, got amazing care and a peaceful death.
I hope I can work again after Quarantine, because my savings are not vast. When I can't stay in my home, I'll sell it and try an apartment or condo in town. When I run out of money, I suppose the system will passively kill me. Peak Capitalism, w00t!
posted by chekhov's sock at 12:23 PM on August 25, 2020 [3 favorites]
skookumsaurus rex calls for a massive governmental investment into elder care.
-posted by doctornemo
Well yes I suppose I do! But I would characterize it as a call for a massive governmental (and therefore social, it’s our taxes) in health care, period. My bias is towards elder care for sure because of my work but the reality is, as we are exploring in this thread, that elder care cannot be neatly siloed from the well-being of others.
Uncompensated care for the elderly disproportionately impacts women, of which the impacts are disproportionately on lower earners, who are disproportionately POC...
Those who are most impacted economically by elder care through lost wages, mental and physical health impacts, and lost time are working class women of color, who make up the majority of professional caregivers, for which they are also poorly compensated. And the impacts spread. Many of the most impacted are caring for children at the same time. Many are in single family households. By losing out on their wages, public health as a whole goes down. Consider too the socio economic impact of all that lost and captured (by companies) money... poorer neighborhoods, poorer kids, worse futures.
It’s not like this is the only fundamental unfairness of capitalism, but it’s a big one. Everyone ages, everyone stops earning, everyone has to do the best on they can on the change they have left and what they can scrape up from family and friends. And it’s a real problem. How are you supposed to accumulate wealth? How do you provide for your kids if you spent it on your folks? What the hell are we childless people supposed to do?
A massive investment in elder care is cool, but really it’s not the idea. The idea is a massive investment in us. And a world that is better for the aging is by definition better for all of us because we all age. It’s certainly better for other disabled people. It’s better for working people.
The big catch? Social investment in other people. The ability to see the well-being of people who we do not identify with as entangled with our own. Who knows if or when we may collective realize that our well-being as a nation is built on and contingent on that of working class women of color. I was hoping that Covid may be the example we needed, but that doesn’t seem to have panned out.
posted by skookumsaurus rex at 12:39 PM on August 25, 2020 [14 favorites]
-posted by doctornemo
Well yes I suppose I do! But I would characterize it as a call for a massive governmental (and therefore social, it’s our taxes) in health care, period. My bias is towards elder care for sure because of my work but the reality is, as we are exploring in this thread, that elder care cannot be neatly siloed from the well-being of others.
Uncompensated care for the elderly disproportionately impacts women, of which the impacts are disproportionately on lower earners, who are disproportionately POC...
Those who are most impacted economically by elder care through lost wages, mental and physical health impacts, and lost time are working class women of color, who make up the majority of professional caregivers, for which they are also poorly compensated. And the impacts spread. Many of the most impacted are caring for children at the same time. Many are in single family households. By losing out on their wages, public health as a whole goes down. Consider too the socio economic impact of all that lost and captured (by companies) money... poorer neighborhoods, poorer kids, worse futures.
It’s not like this is the only fundamental unfairness of capitalism, but it’s a big one. Everyone ages, everyone stops earning, everyone has to do the best on they can on the change they have left and what they can scrape up from family and friends. And it’s a real problem. How are you supposed to accumulate wealth? How do you provide for your kids if you spent it on your folks? What the hell are we childless people supposed to do?
A massive investment in elder care is cool, but really it’s not the idea. The idea is a massive investment in us. And a world that is better for the aging is by definition better for all of us because we all age. It’s certainly better for other disabled people. It’s better for working people.
The big catch? Social investment in other people. The ability to see the well-being of people who we do not identify with as entangled with our own. Who knows if or when we may collective realize that our well-being as a nation is built on and contingent on that of working class women of color. I was hoping that Covid may be the example we needed, but that doesn’t seem to have panned out.
posted by skookumsaurus rex at 12:39 PM on August 25, 2020 [14 favorites]
but there is no amount of compensation and respite that would have made me more able to care for my aging mother in her home without destroying my mental (and possibly physical) health
I hear you, mkuhnell, but compensation goes to the very heart of why it's difficult for women to split the caregiving burden with others. When there is compensation for family caregivers, it becomes possible for others in the family to participate in the caregiving. When there is compensation for family caregivers, there is money to hire respite care workers. When there is compensation for family caregivers, it becomes possible for someone like you, for whom the family caregiving is a bigger burden than you can bear, to outsource it entirely without going bankrupt.
Just like every child of school age comes with a dollar amount attached to them, to be transferred to whichever school they go to, every person who needs care would come with a similar dollar amount attached to them, to be transferred to whoever provides care to them. Just like signing up for military duty entitles folks to structured benefits based on their level of commitment, so too would signing up for caregiving duties entitle family & outside caregivers alike to structured benefits. Just like cops are protected by workplace safety/fairness laws which limit their shift hours per day/week/month and provide overtime if they work extra, so too would family caregivers be entitled to treat taking care of mom like the job it is rather than being expected to work 24/7/365 with no protections at all.
Moving caregiving into the realm of paid work is the only way to deal with this. Capitalism has taken advantage of feminized caregiving labor being provided to society for free; the market externalizes all caregiving costs and reaps all the profits. It's high time feminized invisible work was made visible and paid for.
posted by MiraK at 12:42 PM on August 25, 2020 [10 favorites]
I hear you, mkuhnell, but compensation goes to the very heart of why it's difficult for women to split the caregiving burden with others. When there is compensation for family caregivers, it becomes possible for others in the family to participate in the caregiving. When there is compensation for family caregivers, there is money to hire respite care workers. When there is compensation for family caregivers, it becomes possible for someone like you, for whom the family caregiving is a bigger burden than you can bear, to outsource it entirely without going bankrupt.
Just like every child of school age comes with a dollar amount attached to them, to be transferred to whichever school they go to, every person who needs care would come with a similar dollar amount attached to them, to be transferred to whoever provides care to them. Just like signing up for military duty entitles folks to structured benefits based on their level of commitment, so too would signing up for caregiving duties entitle family & outside caregivers alike to structured benefits. Just like cops are protected by workplace safety/fairness laws which limit their shift hours per day/week/month and provide overtime if they work extra, so too would family caregivers be entitled to treat taking care of mom like the job it is rather than being expected to work 24/7/365 with no protections at all.
Moving caregiving into the realm of paid work is the only way to deal with this. Capitalism has taken advantage of feminized caregiving labor being provided to society for free; the market externalizes all caregiving costs and reaps all the profits. It's high time feminized invisible work was made visible and paid for.
posted by MiraK at 12:42 PM on August 25, 2020 [10 favorites]
We've know that we're heading for a retirement disaster for some time now. The median Baby Boomer hasn't saved enough for a halfway decent nursing home let alone years of expensive in-home nursing and care. It will fall on the younger generation to bail them out, which is problematic because the game is already rigged against them (for a substantial part, by the well off segment of the Baby Boomers).
posted by Candleman at 1:20 PM on August 25, 2020 [8 favorites]
posted by Candleman at 1:20 PM on August 25, 2020 [8 favorites]
Uh, money. The answer is money.
posted by Ray Walston, Luck Dragon at 2:53 PM on August 25, 2020
posted by Ray Walston, Luck Dragon at 2:53 PM on August 25, 2020
this is a loaded topic. Like others in this thread, I currently find myself in the middle of it -- taking care of my aging mother who would otherwise require 24-7 care.
I can't begin to put into a few words everything that comes to mind right now beyond a simple, "Holy shit, does western culture, the Americas in particular, ever get aging wrong!?" It's resolutely inevitable yet the vast majority of us just aren't up to facing it realistically, me included. At least I was until four years ago. Now I have no option.
posted by philip-random at 3:24 PM on August 25, 2020 [1 favorite]
I can't begin to put into a few words everything that comes to mind right now beyond a simple, "Holy shit, does western culture, the Americas in particular, ever get aging wrong!?" It's resolutely inevitable yet the vast majority of us just aren't up to facing it realistically, me included. At least I was until four years ago. Now I have no option.
posted by philip-random at 3:24 PM on August 25, 2020 [1 favorite]
My father had dementia and after a certain point, it was simply unreasonable for him to be cared for at home. There was no way you could offer enough in-home care for him to live at home.
Yep, same with my Mum. My eldest sister had been caring for her full-time at (Mum's) home for the past 5-6 years. Dementia, coupled with an ailing body, has left Mum in a state where she is difficult to care for, needs 24 hour care and, honestly, doesn't know where she is and so "ageing in place", while a nice idea, is not only impossible but completely irrelevant.
She has her own room at a Wesley Mission facility nearby and, when there aren't covid lockdowns, gets regular visits from family. The facilities are quite nice, the staff are awesome, the food and care she receives are excellent, the lists of activities they do every day are quite frankly exhausting even to me (and are different every day, and every week), and thanks to Australia's socialised medicine (which the conservatives are working diligently to destroy), Mum's old age pension covers all of it and she (well, we) hasn't had to lose the house.
So, yeah.
posted by turbid dahlia at 3:30 PM on August 25, 2020 [8 favorites]
Yep, same with my Mum. My eldest sister had been caring for her full-time at (Mum's) home for the past 5-6 years. Dementia, coupled with an ailing body, has left Mum in a state where she is difficult to care for, needs 24 hour care and, honestly, doesn't know where she is and so "ageing in place", while a nice idea, is not only impossible but completely irrelevant.
She has her own room at a Wesley Mission facility nearby and, when there aren't covid lockdowns, gets regular visits from family. The facilities are quite nice, the staff are awesome, the food and care she receives are excellent, the lists of activities they do every day are quite frankly exhausting even to me (and are different every day, and every week), and thanks to Australia's socialised medicine (which the conservatives are working diligently to destroy), Mum's old age pension covers all of it and she (well, we) hasn't had to lose the house.
So, yeah.
posted by turbid dahlia at 3:30 PM on August 25, 2020 [8 favorites]
The median Baby Boomer hasn't saved enough for a halfway decent nursing home let alone years of expensive in-home nursing and care.
The number of people who had anything like the income to, y’know, have a life, while proactively amassing the mountain of money one could very well need to afford even a halfway decent nursing home is vanishingly small. It’s simply an impossible task, especially given the american healthcare system’s ability to outstrip anyone’s worst-case cost scenario.
Boomers didn’t do it. The boomers’ parents didn’t do it. Neither will any near-future generations. Effective change to this problem will require deep, root-level reprogramming.
posted by Thorzdad at 4:31 PM on August 25, 2020 [6 favorites]
The number of people who had anything like the income to, y’know, have a life, while proactively amassing the mountain of money one could very well need to afford even a halfway decent nursing home is vanishingly small. It’s simply an impossible task, especially given the american healthcare system’s ability to outstrip anyone’s worst-case cost scenario.
Boomers didn’t do it. The boomers’ parents didn’t do it. Neither will any near-future generations. Effective change to this problem will require deep, root-level reprogramming.
posted by Thorzdad at 4:31 PM on August 25, 2020 [6 favorites]
I'm surprised the subject of euthanasia hasn't come up. My partner and I joke about how well know when it's time to go, though we've not as yet done anything concrete. We've both had parents get dementia and been institutionalized and find the process simply mad.
I realize that's somewhat different than assisted living, but assisted dying would be a great relief as well.
posted by CheeseDigestsAll at 4:59 PM on August 25, 2020 [8 favorites]
I realize that's somewhat different than assisted living, but assisted dying would be a great relief as well.
posted by CheeseDigestsAll at 4:59 PM on August 25, 2020 [8 favorites]
CheeseDigestsAll, absolutely, I would sign up for that in a flash. "If past the age of 60+, I suffer from any of the following conditions and am unable to make an informed decision myself..." etc.
posted by turbid dahlia at 5:21 PM on August 25, 2020 [1 favorite]
posted by turbid dahlia at 5:21 PM on August 25, 2020 [1 favorite]
Effective change to this problem will require deep, root-level reprogramming.
yeah ... and step one is people need to accept that
1. they're going to die, and
2. the odds are it won't be casually in their sleep, or in any other quick-painless-convenient way -- much as children don't show up toilet trained, socialized, able to dress and feed themselves.
Which I suppose is my overall take on the "aging problem". We need to handle it the way we handle public education. That is, in a functional culture, we may argue about the details of cross the board, free public education, but we do agree that it's necessary. The same thing has apply to aging, elder care, dying -- all the messy end of life stuff. First, we've got to accept that we need to take care of people as they (usually gradually) become no longer able to take care of themselves ... without bankrupting them and their families. We have no choice in the matter. Everything other option goes to a dark, corrupt place. This has to become fundamental.
Then we can worry about the details.
posted by philip-random at 6:02 PM on August 25, 2020 [1 favorite]
yeah ... and step one is people need to accept that
1. they're going to die, and
2. the odds are it won't be casually in their sleep, or in any other quick-painless-convenient way -- much as children don't show up toilet trained, socialized, able to dress and feed themselves.
Which I suppose is my overall take on the "aging problem". We need to handle it the way we handle public education. That is, in a functional culture, we may argue about the details of cross the board, free public education, but we do agree that it's necessary. The same thing has apply to aging, elder care, dying -- all the messy end of life stuff. First, we've got to accept that we need to take care of people as they (usually gradually) become no longer able to take care of themselves ... without bankrupting them and their families. We have no choice in the matter. Everything other option goes to a dark, corrupt place. This has to become fundamental.
Then we can worry about the details.
posted by philip-random at 6:02 PM on August 25, 2020 [1 favorite]
Humans, like as organisms, did not develop to live in isolated couple-pods with only the children of that couple, and then alone with a partner after the kids move out. I’m not saying this means we “should” do x y or z - as far as I’m concerned it’s a neutral fact, just like how we didn’t evolve to sit in front of computers all day and are suffering more back problems and myopia as a result. For most of human existence we lived in much larger household groups, which made elder care typically the responsibility of a larger group of people.
It's very funny that this comment was asserted to be an alleged 'tool of private capital'. The whole rest of the thread is people complaining about the reality of actual market solutions for elder care.
posted by Kwine at 8:27 PM on August 25, 2020 [1 favorite]
It's very funny that this comment was asserted to be an alleged 'tool of private capital'. The whole rest of the thread is people complaining about the reality of actual market solutions for elder care.
posted by Kwine at 8:27 PM on August 25, 2020 [1 favorite]
Been there, lived this. On the one hand, I think nursing homes are frequently horrible and I'd rather kill myself than end up in one. On the other hand, much as I hate "it takes a village," it really takes a village to take care of someone who can't take care of themselves, and it's absolutely a draining nightmare to be a single caregiver all alone.
And then there's being unable to pay for a nursing home (it was going to cost my mother $24k a month to keep my father alive in one, we gave up and pulled the plug), not being able to afford to get help, and not being able to handle it alone either.
posted by jenfullmoon at 9:40 PM on August 25, 2020 [2 favorites]
And then there's being unable to pay for a nursing home (it was going to cost my mother $24k a month to keep my father alive in one, we gave up and pulled the plug), not being able to afford to get help, and not being able to handle it alone either.
posted by jenfullmoon at 9:40 PM on August 25, 2020 [2 favorites]
So my aunt is in a nursing home founded about a century ago by single working women, who came together to set up a facility for aging, single working women, to be managed and run by single working women because nobody else was going to look after us. Men were allowed to move in about fifteen years ago.
My aunt is healthier now than when she moved in five years ago. She had a brain tumour which rendered her wheelchair-bound but after surgery the rehab at the home has meant that she is physically in better shape and is now able to reduce her diabetes medication to tablets, vs injections previously.
The non-profit operates only one facility and in discussion with the management, their intention is to operate only the one facility. It is large enough that all necessary services can be provided, but as the finance manager says, "economies of scale is an excuse to cut services."
When my mother gets stroppy about me not being ready to retire to spend more time looking after my children (youngest 15), I tell her that I am ready to move in with my aunt. At least once a week, I offer up a prayer of thanks that it is, in fact, an ATTRACTIVE option.
posted by Barbara Spitzer at 10:55 PM on August 25, 2020 [6 favorites]
My aunt is healthier now than when she moved in five years ago. She had a brain tumour which rendered her wheelchair-bound but after surgery the rehab at the home has meant that she is physically in better shape and is now able to reduce her diabetes medication to tablets, vs injections previously.
The non-profit operates only one facility and in discussion with the management, their intention is to operate only the one facility. It is large enough that all necessary services can be provided, but as the finance manager says, "economies of scale is an excuse to cut services."
When my mother gets stroppy about me not being ready to retire to spend more time looking after my children (youngest 15), I tell her that I am ready to move in with my aunt. At least once a week, I offer up a prayer of thanks that it is, in fact, an ATTRACTIVE option.
posted by Barbara Spitzer at 10:55 PM on August 25, 2020 [6 favorites]
For most of human existence we lived in much larger household groups, which made elder care typically the responsibility of a larger group of people
Just gotta point out, for the majority of human history once agriculture was developed, that larger group, that external family, was together because they HAD to stay together. They farmed and lived together because they had no choice. So if the parents were physically and emotionally abusive, the children mostly had no choice. They stayed or starved.
And if you have a look at more modern times, say by reading Dr. Sarah Tabers analysis of the American family farms? You see that the patriarchal psychology of American slavery continued throughout the American farm family system--including a LOT of abuse.
In fact I would say that's one reason the nuclear family became so popular--it was a way to escape the generational abuse of extended families. No better way to escape mom's fists than moving halfway across the country.
So we might, when the call goes out for "community" care of elders, consider what that may mean. Especially when it calls for sticking abusive parents back with their children.
In short, if you had asked me to be part of a community with my alcoholic father, I would have said no think you. I had to do some care for him before he died, but I would not live with him.
posted by happyroach at 12:29 AM on August 26, 2020 [17 favorites]
Just gotta point out, for the majority of human history once agriculture was developed, that larger group, that external family, was together because they HAD to stay together. They farmed and lived together because they had no choice. So if the parents were physically and emotionally abusive, the children mostly had no choice. They stayed or starved.
And if you have a look at more modern times, say by reading Dr. Sarah Tabers analysis of the American family farms? You see that the patriarchal psychology of American slavery continued throughout the American farm family system--including a LOT of abuse.
In fact I would say that's one reason the nuclear family became so popular--it was a way to escape the generational abuse of extended families. No better way to escape mom's fists than moving halfway across the country.
So we might, when the call goes out for "community" care of elders, consider what that may mean. Especially when it calls for sticking abusive parents back with their children.
In short, if you had asked me to be part of a community with my alcoholic father, I would have said no think you. I had to do some care for him before he died, but I would not live with him.
posted by happyroach at 12:29 AM on August 26, 2020 [17 favorites]
I dug through the nursing home administrative code for IL which includes these highlights:
Here is how staffing ratios are calculated
5) Effective January 1, 2014, the minimum staffing ratios shall be increased to 3.8 hours of nursing and personal care each day for a resident needing skilled care and 2.5 hours of nursing and personal care each day for a resident needing intermediate care. (Section 3-202.05(d) of the Act)
That's direct care in a day. The government says that someone must recieve just 3 hours and 50 minutes of direct nursing care a day to be in a skilled facility. They don't mandate staff per number of people, but instead do math with service hours to determine staffing ratios which gives incentive to under calculate patients needs to minimize the state requirements.
Here is a bit about bedroom sizes
1) Single resident bedrooms shall contain at least l00 square feet. Multiple resident bedrooms shall contain at least 80 square feet per bed. Minimum usable floor area shall be exclusive of toilet rooms, closets, lockers, wardrobes, alcoves, vestibules, or clearly definable entryways.
2) Multiple resident bedrooms shall not have more than four beds nor more than three beds deep from an outside wall. All beds shall have a minimum clearance of three feet at the foot and sides of the bed.
And that's one of the main reasons COVID spreads through nursing homes. We don't have to give residences in nursing facilities the space to be safe from stuff like flu. We could offer all nursing home residents single rooms, but that is real estate.
Changing topics, HBCS waivers (home based community service) is used when people recieve care in the home and have medicaid. States administer these programs so differently and some very poorly. In IL a person under 55 with a disability will get more money and more service hours than a person over 55 with THE SAME disability. These are two diffrent waiver programs with two different budgets, and the Il Deptment of Aging assigns less dollars per service hour than someone in the persons with disabilities waiver. There are some other key differences in how the programs are implemented. The state pays about 17.00 per hour for agency based unskilled home care, though of you are private pay it likely will cost you more.
(Note 17.00 is the rate to the agency, not what the actual worker recieves)
These services are so important, but individualized care is of course more expensive care, but it's also guarenteed to be provided to one individual and not split up unevenly because another patients needs are higher or whatever the reason. But nursing homes are an important part of the continium of care.
There are really good reasons to have someone under a team of medical personnel at all times. To state that dementia is just adding security home where somebody can't escape from is simplistic. Not everybody can handle a 170lbs adult male who is confused and thinks he is being attacked. Not everybody had the judgement of when to give prn meds. Not everybody has the time or effort or physical strength that caretaking of an adult requires. This is why it's needed.
People need more than the bare minimum of care that keeps them alive. They need respect, dignity and choices. They need interaction and time. They need to be able to express their individuality. I hope that one day nursing home care in the US can do that.
posted by AlexiaSky at 3:10 AM on August 26, 2020 [2 favorites]
Here is how staffing ratios are calculated
5) Effective January 1, 2014, the minimum staffing ratios shall be increased to 3.8 hours of nursing and personal care each day for a resident needing skilled care and 2.5 hours of nursing and personal care each day for a resident needing intermediate care. (Section 3-202.05(d) of the Act)
That's direct care in a day. The government says that someone must recieve just 3 hours and 50 minutes of direct nursing care a day to be in a skilled facility. They don't mandate staff per number of people, but instead do math with service hours to determine staffing ratios which gives incentive to under calculate patients needs to minimize the state requirements.
Here is a bit about bedroom sizes
1) Single resident bedrooms shall contain at least l00 square feet. Multiple resident bedrooms shall contain at least 80 square feet per bed. Minimum usable floor area shall be exclusive of toilet rooms, closets, lockers, wardrobes, alcoves, vestibules, or clearly definable entryways.
2) Multiple resident bedrooms shall not have more than four beds nor more than three beds deep from an outside wall. All beds shall have a minimum clearance of three feet at the foot and sides of the bed.
And that's one of the main reasons COVID spreads through nursing homes. We don't have to give residences in nursing facilities the space to be safe from stuff like flu. We could offer all nursing home residents single rooms, but that is real estate.
Changing topics, HBCS waivers (home based community service) is used when people recieve care in the home and have medicaid. States administer these programs so differently and some very poorly. In IL a person under 55 with a disability will get more money and more service hours than a person over 55 with THE SAME disability. These are two diffrent waiver programs with two different budgets, and the Il Deptment of Aging assigns less dollars per service hour than someone in the persons with disabilities waiver. There are some other key differences in how the programs are implemented. The state pays about 17.00 per hour for agency based unskilled home care, though of you are private pay it likely will cost you more.
(Note 17.00 is the rate to the agency, not what the actual worker recieves)
These services are so important, but individualized care is of course more expensive care, but it's also guarenteed to be provided to one individual and not split up unevenly because another patients needs are higher or whatever the reason. But nursing homes are an important part of the continium of care.
There are really good reasons to have someone under a team of medical personnel at all times. To state that dementia is just adding security home where somebody can't escape from is simplistic. Not everybody can handle a 170lbs adult male who is confused and thinks he is being attacked. Not everybody had the judgement of when to give prn meds. Not everybody has the time or effort or physical strength that caretaking of an adult requires. This is why it's needed.
People need more than the bare minimum of care that keeps them alive. They need respect, dignity and choices. They need interaction and time. They need to be able to express their individuality. I hope that one day nursing home care in the US can do that.
posted by AlexiaSky at 3:10 AM on August 26, 2020 [2 favorites]
And oh, I hope that this is implicit in my statements above but the other most important thing to do to get a better world for all? Ban profit. Health care is insanely difficult and costly and complicated to provide in all kinds of settings. Not a damn one of them actually benefits from private profit; it just leaches money away. I'm not talking about novel drug development or biotech or whatever, I'm talking about hospitals and clinics and skilled nursing facilities and the like. Do we need a unified National Health System? Not necessarily, it's nice to have smaller orgs that better fit the needs and mindsets of their communities. It's nice to have some competition in major markets and variety of services and all kinds of things that a single monolith may not be set for, but there is no reason why we shouldn't just say that all providers should be nonprofits or governmental entities and be done with at least profiting from this.
posted by skookumsaurus rex at 8:13 AM on August 26, 2020 [4 favorites]
posted by skookumsaurus rex at 8:13 AM on August 26, 2020 [4 favorites]
Following on from "Ban profit." Exactly why my aunt is in good quality care - it is a non-profit running the place.
And ONLY on the one location - some non-profits are unable to resist the lure of EXPANSION - which means stretching resources or diverting resources. A regular story is that when a facility is opening there are enthusiastic, qualified staff to provide support services, therapies, etc. Once the facility is established and the organisation is opening a new facility - those enthusiastic, qualified staff are sent on to the new facility - grrrrrr.
posted by Barbara Spitzer at 3:50 PM on August 26, 2020
And ONLY on the one location - some non-profits are unable to resist the lure of EXPANSION - which means stretching resources or diverting resources. A regular story is that when a facility is opening there are enthusiastic, qualified staff to provide support services, therapies, etc. Once the facility is established and the organisation is opening a new facility - those enthusiastic, qualified staff are sent on to the new facility - grrrrrr.
posted by Barbara Spitzer at 3:50 PM on August 26, 2020
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Getting old, especially in America, is a very frightening prospect unless you have a couple of vaults full of cash somewhere. I'm 62 and, after seeing how things went for my mom (who had to rely on Medicaid to pay for her care in the memory care wing of a nursing home) and my FIL (who managed to save just enough to afford a tiny room in an assisted living facility), I am scared shitless about my future. Simply put, I do not want to get old in this country.
posted by Thorzdad at 5:50 AM on August 25, 2020 [92 favorites]