The eldercare crisis in the United States
August 26, 2021 10:04 AM Subscribe
Talking to dozens of adult caregivers, I heard variations on the same theme over and over again: It’s brutal, it’s tearing my family apart, it makes me resent everyone, including the people for whom I’m providing care. The suffering is not new. The crisis has just further expanded within the middle class and the population at large, gradually making it less and less ignorable. “We can’t have a strong economy if we have millions of people working as full-time caregivers and making so little that they are still living in poverty,” Secretary of Commerce Gina Raimondo recently told the New York Times. “We can’t have a strong economy when we have millions of other people dropping out of the work force to take care of elderly loved ones.”
Oh yeah, I can see this one coming at us fast. We're privileged enough that we (and our parents) can throw some money at the problem ... but watching what my parents had to do for my grandparents in their later years, I know that even if you're able to pull in paid help it can start looking like a full time job. A very stress ful heartbreaking one.
Plus we're not even on the same coast as one pair. Yikes.
posted by feckless at 10:22 AM on August 26, 2021 [9 favorites]
Plus we're not even on the same coast as one pair. Yikes.
posted by feckless at 10:22 AM on August 26, 2021 [9 favorites]
^^ Yep. My parents had money to pay for caregivers, but even then, there were periods of time when it was still basically a full-time job for me. This is not the kind of thing where you can really pay someone else to take care of everything -- not if you care about their total well-being, anyway.
And yes, we were on opposite coasts, making it a lot harder. To add to that, my folks lived in a remote rural area. Every time I had to fly out, it required a flight across the country followed by a 4-5 hour drive. Sometimes in the dead of winter. Add in flight delays, and it was a 24-hour one-way trip at times.
posted by mikeand1 at 10:32 AM on August 26, 2021 [5 favorites]
And yes, we were on opposite coasts, making it a lot harder. To add to that, my folks lived in a remote rural area. Every time I had to fly out, it required a flight across the country followed by a 4-5 hour drive. Sometimes in the dead of winter. Add in flight delays, and it was a 24-hour one-way trip at times.
posted by mikeand1 at 10:32 AM on August 26, 2021 [5 favorites]
Wow, this is me for the past 18 months. Mom declined both physically and mentally, and if you took an eye off her for a second, she would get up and fall. She wouldn't let anyone outside of the family care for her, and she constantly worried about money. She has a pension, but her care took two middle aged women out of earnings for over a year (me and my SIL), and ground us both into fine powder.
Then there's the guilt. At what point do I put her in a nursing home? How much can you give for someone you love so dearly? What if I decide too early, or too late? That decision came when she could no longer stand up. She hates the nursing home, and it kills me, but it would take a half-dozen people to care for her at home. She's been there two months now, and I still can't get my neck to relax- it's been clinched for over a year. And I'm still too tired, or maybe too old, to get out and look for a job.
posted by Miss Cellania at 10:40 AM on August 26, 2021 [59 favorites]
Then there's the guilt. At what point do I put her in a nursing home? How much can you give for someone you love so dearly? What if I decide too early, or too late? That decision came when she could no longer stand up. She hates the nursing home, and it kills me, but it would take a half-dozen people to care for her at home. She's been there two months now, and I still can't get my neck to relax- it's been clinched for over a year. And I'm still too tired, or maybe too old, to get out and look for a job.
posted by Miss Cellania at 10:40 AM on August 26, 2021 [59 favorites]
I get that many people do want to look after their aging parents. That's fine. My children, however, are to make no sacrifices on my behalf. If it comes to it, I'll do my own "Leaving Las Vegas" routine rather than force them to sacrifice their own futures. It's my job to look after them, right to the end.
posted by No Robots at 10:40 AM on August 26, 2021 [17 favorites]
posted by No Robots at 10:40 AM on August 26, 2021 [17 favorites]
No Robots, my mother said for decades that we should put her in a nursing home instead of sacrificing ourselves, but then when she needed care, she insisted she didn't need care, until she eventually forgot about her earlier plans.
posted by Miss Cellania at 10:45 AM on August 26, 2021 [49 favorites]
posted by Miss Cellania at 10:45 AM on August 26, 2021 [49 favorites]
Miss Cellania, I'm very sorry for you. I hope I don't wind up like your mother. I've gently broached the matter with my kids. I hope they will remain strong even if I don't.
posted by No Robots at 10:48 AM on August 26, 2021 [5 favorites]
posted by No Robots at 10:48 AM on August 26, 2021 [5 favorites]
No Robots, that's a pretty horrible burden to put on your kids, a bit? Forcing you into care when you don't want it?
posted by sagc at 10:52 AM on August 26, 2021 [1 favorite]
posted by sagc at 10:52 AM on August 26, 2021 [1 favorite]
a lot of this has been this way at least since the 90s. there's just no reasonable amount of money that you or i could save that would allow a parent or a spouse to live with full-time care in a nursing facility long-term. a lot of people who would move into the independent living community where i grew up would hold on to their money up until the nursing home and then would just fling it out to children and relatives as quickly as possible.
if they didn't, they'd spend a few years burning through it only to discover that once they'd switched to medicaid+state benefits their level of care would improve drastically. and that they'd be broke anyway.
this was 25 years ago, when nursing homes were just plain mostly-full.
posted by gorestainedrunes at 10:52 AM on August 26, 2021 [12 favorites]
if they didn't, they'd spend a few years burning through it only to discover that once they'd switched to medicaid+state benefits their level of care would improve drastically. and that they'd be broke anyway.
this was 25 years ago, when nursing homes were just plain mostly-full.
posted by gorestainedrunes at 10:52 AM on August 26, 2021 [12 favorites]
Plus we're not even on the same coast as one pair. Yikes.
Same here, except both pairs. All are in the early Boomer demographic (early-mid 70s) and are still reasonably independent, although we already have one who has started having short-term memory issues the past few years :/ Honestly, I don't know what we'll do if we hit the point that someone needs full-time care, my job is heavily tied to our current city so relocating to be closer is likely out of the question. My mom had a hard time taking care of her own mother who lived a little over an hour away, we are the better part of a day's travel away flying (and over two days driving).
We are fortunate in both having siblings that live close to the respective parents but we can't help but feel guilt about not being able to do more. No doubt there are many others in the same situation.
posted by photo guy at 10:53 AM on August 26, 2021 [1 favorite]
Same here, except both pairs. All are in the early Boomer demographic (early-mid 70s) and are still reasonably independent, although we already have one who has started having short-term memory issues the past few years :/ Honestly, I don't know what we'll do if we hit the point that someone needs full-time care, my job is heavily tied to our current city so relocating to be closer is likely out of the question. My mom had a hard time taking care of her own mother who lived a little over an hour away, we are the better part of a day's travel away flying (and over two days driving).
We are fortunate in both having siblings that live close to the respective parents but we can't help but feel guilt about not being able to do more. No doubt there are many others in the same situation.
posted by photo guy at 10:53 AM on August 26, 2021 [1 favorite]
No Robots, that's a pretty horrible burden to put on your kids, a bit? Forcing you into care when you don't want it?
Sorry, not reading you here. I'm saying that my kids should do whatever is convenient for them. If that means putting me into care, I'll go along.
posted by No Robots at 10:58 AM on August 26, 2021 [3 favorites]
Sorry, not reading you here. I'm saying that my kids should do whatever is convenient for them. If that means putting me into care, I'll go along.
posted by No Robots at 10:58 AM on August 26, 2021 [3 favorites]
Elder care, like dental care, is another of those things that just... inexplicably isn't included in America's already-deeply-fucked healthcare system. A lot of people just assume it's part of Medicare/Medicaid, until the fateful day arrives when their parents need care and they discover, nope, you're out of pocket for tens of thousands of dollars a year if you don't want to provide care yourself.
Unlike dental care, most elder caregivers aren't highly trained and aren't part of a cabal with bargaining power, so their work gets valued at almost nothing. Since they're not part of the health insurance equation, they get to deal with the double whammy of "it's just WOMEN'S work" and "how am I supposed to afford this out of pocket?" which drives wages down even further. It's hard to attract workers to low-wage jobs that are physically and mentally brutal, so a higher-than-average number of elder care workers have checkered histories, which means (along with the utterly shit wages which almost certainly aren't enough to live on without supplemental income) they're more prone to the criminal behaviors described in the article. That FURTHER lowers the opinion many people have of elder care workers, and the vicious spiral continues.
Now add a demographic crisis like the Boomers hitting retirement age, and you've summoned the perfect storm of American shittiness. God help our parents when they need care, because they've spent the last forty years preaching the kind of Reagonomics that guarantee them shitty caregivers.
posted by Mayor West at 11:00 AM on August 26, 2021 [32 favorites]
Unlike dental care, most elder caregivers aren't highly trained and aren't part of a cabal with bargaining power, so their work gets valued at almost nothing. Since they're not part of the health insurance equation, they get to deal with the double whammy of "it's just WOMEN'S work" and "how am I supposed to afford this out of pocket?" which drives wages down even further. It's hard to attract workers to low-wage jobs that are physically and mentally brutal, so a higher-than-average number of elder care workers have checkered histories, which means (along with the utterly shit wages which almost certainly aren't enough to live on without supplemental income) they're more prone to the criminal behaviors described in the article. That FURTHER lowers the opinion many people have of elder care workers, and the vicious spiral continues.
Now add a demographic crisis like the Boomers hitting retirement age, and you've summoned the perfect storm of American shittiness. God help our parents when they need care, because they've spent the last forty years preaching the kind of Reagonomics that guarantee them shitty caregivers.
posted by Mayor West at 11:00 AM on August 26, 2021 [32 favorites]
God help our parents when they need care, because they've spent the last forty years preaching the kind of Reagonomics that guarantee them shitty caregivers.
Is it possible we can have this thread without shitting on all boomers for the political viewpoints of some of them?
posted by FencingGal at 11:04 AM on August 26, 2021 [25 favorites]
Is it possible we can have this thread without shitting on all boomers for the political viewpoints of some of them?
posted by FencingGal at 11:04 AM on August 26, 2021 [25 favorites]
Another problem is that there are way too many people who would like women as a reserve army of the underpaid. Tactically I wouldn’t even frame this as "too hard on caregivers" as much as "too hard on patients", which is also true.
Akenfield interviews the first public health nurse in the village. IIRC she found one of the aged being cared for at home closed into a cupboard.
posted by clew at 11:08 AM on August 26, 2021 [6 favorites]
Akenfield interviews the first public health nurse in the village. IIRC she found one of the aged being cared for at home closed into a cupboard.
posted by clew at 11:08 AM on August 26, 2021 [6 favorites]
Sorry, not reading you here. I'm saying that my kids should do whatever is convenient for them. If that means putting me into care, I'll go along.
Upon reflection, I think I see what you are saying. If I should weaken and place my kids in the position of making decisions that are against my changed wishes, then, yeah, that would be shitty of me. I just hope that doesn't happen, and if does, that they consider it just another shitty thing I've done to them. I also hope that they realize that feeling bad about abandoning me or going against my wishes is better than screwing up their material well-being on my behalf.
posted by No Robots at 11:09 AM on August 26, 2021 [3 favorites]
Upon reflection, I think I see what you are saying. If I should weaken and place my kids in the position of making decisions that are against my changed wishes, then, yeah, that would be shitty of me. I just hope that doesn't happen, and if does, that they consider it just another shitty thing I've done to them. I also hope that they realize that feeling bad about abandoning me or going against my wishes is better than screwing up their material well-being on my behalf.
posted by No Robots at 11:09 AM on August 26, 2021 [3 favorites]
Going through this exact scenario a few years ago with both my mother (dementia) and FIL (old, no longer able to walk) showed me exactly what sort of hellscape growing old in the US is. I'm 63 and I'm scared senseless at the thought of growing any older, especially if I start seriously deteriorating.
I can assure you, no parent wants to put their children in the position of becoming their full-time caregiver.
posted by Thorzdad at 11:10 AM on August 26, 2021 [15 favorites]
I can assure you, no parent wants to put their children in the position of becoming their full-time caregiver.
posted by Thorzdad at 11:10 AM on August 26, 2021 [15 favorites]
I think it's incredibly common to plan on doing a Leaving Las Vegas to spare yourself and your family members the worst of it. I'd long planned on doing so when I hit the terminal phase of my illness (in my case, it's a slow glide and through providence and medical intervention I'm still catching air to hold me aloft). I'd long thought of wandering into a dark wood, or finding an ice floe and shrinking into the horizon. But AHP's description of a succession of cliffs is so spot on -- when my moment neared, I was so tired and my mind was so fuzzy and there was always more I needed to do before taking that step, and there were treatment options that previously had seemed out of the question but by that point they seemed not so bad. So here I am, and I can't blame folks at all for changing their minds, for opting for long-term care, or their families opting for that on their behalf, because there's always another treatment, another gust to help stay the fall.
My grandmother is 106 this year and living independently in her home. Her sister had dropped dead at 102 on her way back from getting the mail, and my grandmother is hoping for the same, but to land on softer carpet. My mother's whole self-image centers on being capable and strong, and with things how they are, I'm not sure which of us will outlive the other. She may very well make it to 100+ like her mother. She won't ever want to live in a long-term care setting, but I'm certain she's already picked a section of floor not too far from the mailbox.
Also, eventually we will need like an Anne Helen Peterson filter before long. She's amazing and I'm glad her work pops up here so often.
posted by mochapickle at 11:10 AM on August 26, 2021 [42 favorites]
My grandmother is 106 this year and living independently in her home. Her sister had dropped dead at 102 on her way back from getting the mail, and my grandmother is hoping for the same, but to land on softer carpet. My mother's whole self-image centers on being capable and strong, and with things how they are, I'm not sure which of us will outlive the other. She may very well make it to 100+ like her mother. She won't ever want to live in a long-term care setting, but I'm certain she's already picked a section of floor not too far from the mailbox.
Also, eventually we will need like an Anne Helen Peterson filter before long. She's amazing and I'm glad her work pops up here so often.
posted by mochapickle at 11:10 AM on August 26, 2021 [42 favorites]
We are fortunate in both having siblings that live close to the respective parents but we can't help but feel guilt about not being able to do more.
My parents are blessedly well enough that this conversation would be a few years off, but...this is a conversation I'm going to have to have with my brother someday; he and my sister-in-law live 30 minutes' drive from our parents, and I live 3 state lines away. It's looking very likely that the bulk of the caregiving for our parents will fall on him and his family - they are already kind of in each others' pockets a lot, so it's kind of happening already. But I will take him aside in a few years and say that when things start getting hard-core with the caregiving, I will start planning some two-week visits every four or five months, where I take on the caregiving so he can get a break.
Uprooting my entire life to move there and take things on altogether is more than I can do (I'd have to quit my job to do that), but I'd definitely be able to take that on.
posted by EmpressCallipygos at 11:15 AM on August 26, 2021 [2 favorites]
My parents are blessedly well enough that this conversation would be a few years off, but...this is a conversation I'm going to have to have with my brother someday; he and my sister-in-law live 30 minutes' drive from our parents, and I live 3 state lines away. It's looking very likely that the bulk of the caregiving for our parents will fall on him and his family - they are already kind of in each others' pockets a lot, so it's kind of happening already. But I will take him aside in a few years and say that when things start getting hard-core with the caregiving, I will start planning some two-week visits every four or five months, where I take on the caregiving so he can get a break.
Uprooting my entire life to move there and take things on altogether is more than I can do (I'd have to quit my job to do that), but I'd definitely be able to take that on.
posted by EmpressCallipygos at 11:15 AM on August 26, 2021 [2 favorites]
We were not lucky with my dad, who we had to let die because we couldn't afford to keep him alive any more. My mom is still in good health, thank god, but I dread the day I have to be caregiver because I suck at it and we fight a lot.
As for me, I think I'll just have to ah, take care of myself in a certain kind of way when the time comes because there will be no one around to do it, and who wants to live like that anyway.
posted by jenfullmoon at 11:25 AM on August 26, 2021 [5 favorites]
As for me, I think I'll just have to ah, take care of myself in a certain kind of way when the time comes because there will be no one around to do it, and who wants to live like that anyway.
posted by jenfullmoon at 11:25 AM on August 26, 2021 [5 favorites]
It really seems like no one in this country has a right to be alive except those who are actively working jobs good enough to provide excellent insurance. Everyone else is just kind of hanging on as best they can with help from other humans who also want them to stay alive. But if you don't have that you are screwed.
posted by bleep at 11:35 AM on August 26, 2021 [43 favorites]
posted by bleep at 11:35 AM on August 26, 2021 [43 favorites]
Over the last 20 years, my wife and I, both ‘boomers,’ took in and provided terminal care for my father, my mother, and, along with another boomer SIL, her father. Her mother is now in her 90s and fading fast. Luckily, we had the income to allow us to afford a caregiver in our home during the day so we could continue to work. Now retired, we three have plenty of time to care for the one remaining parent and also allow the others to have some respite.
Our families were bigger as were families on average in the 50s so there were many potential caregivers even if the job fell mostly on the eldest ones. But such has been the pattern for generations. I can remember both my grandmother and grandfather lived with us in their last years until their death. My maternal grandmother was in a nursing home and I viewed that as a horrible isolating experience for her.
Now looking forward, families are smaller and the financial means of my children and their cohort - again on average - are less. As we age and become more frail, we do see this as a burden that falls unequally on our children as compared to us. But, there’s little to be done about this as it’s driven by demographics and other social and political factors we cannot change or control.
Unlike some of the posts above, I’m do not view institutionalization of the elderly for care as a good thing. Yes, it can relieve the time burden on children. But, I’ve worked in health care and nursing homes, at least in the US, are uniformly hideous - and hideously expensive. There is increasing corporatization of nursing homes by the usual suspects - hedge funds, etc - and prices have skyrocketed. Smart financial types see the increasing demand and a chance to extract as much of the boomer generation’s wealth (and that of their children) as they can. Yet, the wages paid the nursing home staff are uniformly poor. The demand for in-home caregivers is rising. Unsurprisingly, many of these low paid jobs are held by women and recent immigrants. Still, in our experience, home care is cheaper, even when paying caregivers living wages, and a better option overall.
posted by sudogeek at 11:39 AM on August 26, 2021 [14 favorites]
Our families were bigger as were families on average in the 50s so there were many potential caregivers even if the job fell mostly on the eldest ones. But such has been the pattern for generations. I can remember both my grandmother and grandfather lived with us in their last years until their death. My maternal grandmother was in a nursing home and I viewed that as a horrible isolating experience for her.
Now looking forward, families are smaller and the financial means of my children and their cohort - again on average - are less. As we age and become more frail, we do see this as a burden that falls unequally on our children as compared to us. But, there’s little to be done about this as it’s driven by demographics and other social and political factors we cannot change or control.
Unlike some of the posts above, I’m do not view institutionalization of the elderly for care as a good thing. Yes, it can relieve the time burden on children. But, I’ve worked in health care and nursing homes, at least in the US, are uniformly hideous - and hideously expensive. There is increasing corporatization of nursing homes by the usual suspects - hedge funds, etc - and prices have skyrocketed. Smart financial types see the increasing demand and a chance to extract as much of the boomer generation’s wealth (and that of their children) as they can. Yet, the wages paid the nursing home staff are uniformly poor. The demand for in-home caregivers is rising. Unsurprisingly, many of these low paid jobs are held by women and recent immigrants. Still, in our experience, home care is cheaper, even when paying caregivers living wages, and a better option overall.
posted by sudogeek at 11:39 AM on August 26, 2021 [14 favorites]
It’s brutal, it’s tearing my family apart, it makes me resent everyone, including the people for whom I’m providing care.
that was my story for better part of five years up to about six months ago. Though I only really resented the person I was caring for to the degree that they had a lot of denial going on about growing old -- that a few thoughtful decisions before they turned eighty would have made things way easier for everyone, including them, particularly them.
Which is probably the single most important thing I learned from it all:
You don't get to choose when you get old.
And by "old" I guess what I mean is reaching that point when you really do need help just to take care of everyday stuff. Whether it be cooking, cleaning, shopping ... going to the bathroom. The reality is that most of us will get to this point before we die. A car won't crash into us. We won't have a massive heart attack on the side of a mountain. A thrill killer won't randomly take us out. We will get old. We will need help before we die, maybe for years. This is not a bad thing. It's a very human thing that's been going on for however long humans have been around. We dishonour ourselves if we deny it.
And so on. I'm way too expert on all of this and bluntly tired of talking/thinking about it.
posted by philip-random at 11:48 AM on August 26, 2021 [38 favorites]
that was my story for better part of five years up to about six months ago. Though I only really resented the person I was caring for to the degree that they had a lot of denial going on about growing old -- that a few thoughtful decisions before they turned eighty would have made things way easier for everyone, including them, particularly them.
Which is probably the single most important thing I learned from it all:
You don't get to choose when you get old.
And by "old" I guess what I mean is reaching that point when you really do need help just to take care of everyday stuff. Whether it be cooking, cleaning, shopping ... going to the bathroom. The reality is that most of us will get to this point before we die. A car won't crash into us. We won't have a massive heart attack on the side of a mountain. A thrill killer won't randomly take us out. We will get old. We will need help before we die, maybe for years. This is not a bad thing. It's a very human thing that's been going on for however long humans have been around. We dishonour ourselves if we deny it.
And so on. I'm way too expert on all of this and bluntly tired of talking/thinking about it.
posted by philip-random at 11:48 AM on August 26, 2021 [38 favorites]
my experience with my mom having a short rehab stay in a SNF two years ago matches sudogeek above. The place was horrid -- the staff was generally great but clearly overworked, and all the money was going to the corporate owners (there was even a f---in' limo in the parking lot one day I visited).
An Employee-owned SNF would be a wonderful alternative.
posted by Heywood Mogroot III at 11:52 AM on August 26, 2021 [6 favorites]
An Employee-owned SNF would be a wonderful alternative.
posted by Heywood Mogroot III at 11:52 AM on August 26, 2021 [6 favorites]
Can we perhaps stop looking at this as a 'burden' and, without delving into semantics, look at it as a measurable problem for which a solution/s needs to be found? Given our recent census we have a reasonably good indicator of the 'when', the 'where', and the 'how many' in order to set forward a clear solution/s.
posted by IndelibleUnderpants at 11:53 AM on August 26, 2021 [2 favorites]
posted by IndelibleUnderpants at 11:53 AM on August 26, 2021 [2 favorites]
Speaking from experience, just like many of you, there will come a point when you just can't do it anymore. It doesn't mean that you failed. It doesn't mean that you don't care. You just broke down. Caring for the elderly isn't like a Hallmark movie. Caring for the elderly breaks you. Be prepared for when it happens, and don't blame yourself when it does.
posted by Beholder at 12:58 PM on August 26, 2021 [23 favorites]
posted by Beholder at 12:58 PM on August 26, 2021 [23 favorites]
You don't get to choose when you get old.
Or IF, honestly. My mother spent her entire life in a sort of relentless pursuit/enjoyment of Perfect Health. She had been sick precisely once in my entire life, excepting the random bout of food poisoning or mild cold.
Then she turned 60 and everything literally, as in three days after her birthday, went to shit all at once. She got one bad diagnosis and then a completely random injury and the one-two punch gave her a severe anxiety problem (which went unaddressed because she has no reference point for having a chronic illness or issue of any kind) and then later she got a whole new bad diagnosis and a mere 5 years later my siblings and I are puzzling out whether this woman, who until recently would have passed for someone in their early 40s, can even live alone anymore.
No single diagnosis of hers is actually all that debilitating on its own; they're all treatable, some are curable. But the constellation of problems, the way they exacerbate and complicate each other, the way your resilience at 60 is not your resilience at 20... if you're the sort of person who's spent 60 years pretending to be immortal, woof, it's a short pier.
I myself sit here in my 40s in relatively solid health, much as she was back then, and even though I've definitely never felt immortal it's still really sobering. It has definitely shifted my views on my health from "setting myself up for the future" to "doing what I need to enjoy myself now," because in 20 years my body apparently ain't gonna give a FUCK whether I ran 2 miles a day, it's gonna fall to pieces when it wants to for its own reasons.
posted by We put our faith in Blast Hardcheese at 1:19 PM on August 26, 2021 [28 favorites]
Or IF, honestly. My mother spent her entire life in a sort of relentless pursuit/enjoyment of Perfect Health. She had been sick precisely once in my entire life, excepting the random bout of food poisoning or mild cold.
Then she turned 60 and everything literally, as in three days after her birthday, went to shit all at once. She got one bad diagnosis and then a completely random injury and the one-two punch gave her a severe anxiety problem (which went unaddressed because she has no reference point for having a chronic illness or issue of any kind) and then later she got a whole new bad diagnosis and a mere 5 years later my siblings and I are puzzling out whether this woman, who until recently would have passed for someone in their early 40s, can even live alone anymore.
No single diagnosis of hers is actually all that debilitating on its own; they're all treatable, some are curable. But the constellation of problems, the way they exacerbate and complicate each other, the way your resilience at 60 is not your resilience at 20... if you're the sort of person who's spent 60 years pretending to be immortal, woof, it's a short pier.
I myself sit here in my 40s in relatively solid health, much as she was back then, and even though I've definitely never felt immortal it's still really sobering. It has definitely shifted my views on my health from "setting myself up for the future" to "doing what I need to enjoy myself now," because in 20 years my body apparently ain't gonna give a FUCK whether I ran 2 miles a day, it's gonna fall to pieces when it wants to for its own reasons.
posted by We put our faith in Blast Hardcheese at 1:19 PM on August 26, 2021 [28 favorites]
I miss my parents every day and yet I am forced to feel some kind of fucked up gratitude that they died relatively young.
It's wrong and cruel and all of those things and has been for decades. We could solve it with money, a fraction of what we flushed in Afghanistan would allow all our seniors to have good care, dignity and compassion in their last years.
posted by emjaybee at 1:47 PM on August 26, 2021 [28 favorites]
It's wrong and cruel and all of those things and has been for decades. We could solve it with money, a fraction of what we flushed in Afghanistan would allow all our seniors to have good care, dignity and compassion in their last years.
posted by emjaybee at 1:47 PM on August 26, 2021 [28 favorites]
WA is attempting to even pretend to think about addressing this with the new state Long Term Care insurance and the amount of wilfully stupid selfishness being expressed in response is just infuriating. The legislature was dumb enough to include a choice to opt out of the insurance - which made everyone just lose their fucking minds over the option to not be part of a public scheme that they might not even need or which might not meet their precious fucking snowflake needs or did you know that long term care is a scam anyway and if you just saved up the amount this tax would cost you you could get unicorns to care for you at half the price in a castle on a fluffy cloud? How much can it *really* cost to live fulltime in a nursing home anyway? And what good is it to anyone to get a benefit that won't cover ten years in a nice nursing home?
I really hope they manage to pass some updates that totally screw every selfish bastard that opts out of this.
posted by bashing rocks together at 1:50 PM on August 26, 2021 [8 favorites]
I really hope they manage to pass some updates that totally screw every selfish bastard that opts out of this.
posted by bashing rocks together at 1:50 PM on August 26, 2021 [8 favorites]
that a few thoughtful decisions before they turned eighty would have made things way easier for everyone, including them, particularly them
philip-random, if it's not too personal, what kinds of decisions would have helped? My parents are both 70, in pretty good health. They talk about considering now things that will make life easier as they age, but I don't really know what my sis and I should be doing now or talking about now to ease whatever may come.
posted by dorey_oh at 2:01 PM on August 26, 2021 [3 favorites]
philip-random, if it's not too personal, what kinds of decisions would have helped? My parents are both 70, in pretty good health. They talk about considering now things that will make life easier as they age, but I don't really know what my sis and I should be doing now or talking about now to ease whatever may come.
posted by dorey_oh at 2:01 PM on August 26, 2021 [3 favorites]
My parents are both 70, in pretty good health. They talk about considering now things that will make life easier as they age, but I don't really know what my sis and I should be doing now or talking about now to ease whatever may come.
Step one: buy a copy of Atul Gawande's Being Mortal. Read it with a highlighter in hand.
Step two: Think about the questions you need to get answers to so you can help your parents plan.
Step three: Start having these conversations with your parents. Regularly. Casually. Bring it up. Don't stop bringing it up. Get them to talk about what they want/need, what their fears are, what they can't imagine living without.
Step four: Get your parents to talk about the resources they have available to them (and you) for the long term.
Step five: Find a reasonably-good estate planning lawyer and draw up some papers -- at the very least, get medical power of attorney, an advanced directive, and legal power of attorney, so you have the authority to make decisions for them in an emergency. And keep copies of the medical power of attorney and advanced directive on your phone, so when you get a 2AM call from the ER you don't have to remember to dig out the paperwork.
Those are just a few steps I can think of. It's different in different countries, and with different families, but communication is vital. And actual planning: my family made every decision between 6 months and 3 years too late.
posted by suelac at 2:15 PM on August 26, 2021 [66 favorites]
Step one: buy a copy of Atul Gawande's Being Mortal. Read it with a highlighter in hand.
Step two: Think about the questions you need to get answers to so you can help your parents plan.
Step three: Start having these conversations with your parents. Regularly. Casually. Bring it up. Don't stop bringing it up. Get them to talk about what they want/need, what their fears are, what they can't imagine living without.
Step four: Get your parents to talk about the resources they have available to them (and you) for the long term.
Step five: Find a reasonably-good estate planning lawyer and draw up some papers -- at the very least, get medical power of attorney, an advanced directive, and legal power of attorney, so you have the authority to make decisions for them in an emergency. And keep copies of the medical power of attorney and advanced directive on your phone, so when you get a 2AM call from the ER you don't have to remember to dig out the paperwork.
Those are just a few steps I can think of. It's different in different countries, and with different families, but communication is vital. And actual planning: my family made every decision between 6 months and 3 years too late.
posted by suelac at 2:15 PM on August 26, 2021 [66 favorites]
The regular conversations are key, but I'm lucky that my family talks about these things, dealing with my partner's family who just doesn't discuss these things
has made it super challenging when dealing with their parents. My family has its own issues, but I know my parents wishes with respect to DNRs, have power of attorney and know where to find all important documents; but we're also very long lived and omg I can't envision my parents making it to 95 and living independently like their parents did (and my grandmother had a live in caretaker M-F who we (mom, brother and I) relieved on weekends and holidays and yes that was my 20's, taking a bus to spend weekends spent caring for my grandmother, which was certainly not easy).
We recently used COVID as an excuse to discuss if my parent's wishes had changed; better to know earlier than later if views are changing. But broadly it's so much labor to keep track of on top of maintaining your own existence...
posted by larthegreat at 2:54 PM on August 26, 2021 [2 favorites]
has made it super challenging when dealing with their parents. My family has its own issues, but I know my parents wishes with respect to DNRs, have power of attorney and know where to find all important documents; but we're also very long lived and omg I can't envision my parents making it to 95 and living independently like their parents did (and my grandmother had a live in caretaker M-F who we (mom, brother and I) relieved on weekends and holidays and yes that was my 20's, taking a bus to spend weekends spent caring for my grandmother, which was certainly not easy).
We recently used COVID as an excuse to discuss if my parent's wishes had changed; better to know earlier than later if views are changing. But broadly it's so much labor to keep track of on top of maintaining your own existence...
posted by larthegreat at 2:54 PM on August 26, 2021 [2 favorites]
My mom has needed in-home care for the past 4 years. When I've been there on visits, I've watched as she berates these caregivers like they were unruly children, and then she gets angry and surprised when the caregivers burn out and leave. Agency after agency has fired her as a client because she is just...imperious, is the only thing I can think of. Once I pointed out to her that if I had a job where I was being treated like she treated her caregivers, she'd advise me to quit and get out of there ASAP, possibly file grievances (former HR professional). She got very agitated: these people are in her home, and they're not treating her and her possessions with the respect that they'd probably treat their own parents' things with! They don't even take initiative to clean the kitchen or do laundry or anything! (During visits, I've heard her snap at this caregiver and that one for not doing X according to Mom's standards. If I worked in an environment like that, I'd stop taking initiative too. In fact, I've done just that...and shortly thereafter, I was jobsearching, would find a new job, and would move on.)
She does not want to talk about what situation she's in, she does not want to talk about her future plans/options for someone else caring for her if/when she's unable to live on her own, she just keeps saying "I'll kill myself if I can't stay in this house" but she's not interested in hospice care (hospice care will keep you comfortable, but if you suddenly want to go to the hospital...you lose hospice care.) I'm now resigned to the fact that, at some point, she's going to get forced into a nursing home. And when she dies, I can either panic like fuck-all and try to figure out finances, or I can just sit back in my home 1000+ miles away and say, government, take it all.
posted by Tailkinker to-Ennien at 3:02 PM on August 26, 2021 [3 favorites]
She does not want to talk about what situation she's in, she does not want to talk about her future plans/options for someone else caring for her if/when she's unable to live on her own, she just keeps saying "I'll kill myself if I can't stay in this house" but she's not interested in hospice care (hospice care will keep you comfortable, but if you suddenly want to go to the hospital...you lose hospice care.) I'm now resigned to the fact that, at some point, she's going to get forced into a nursing home. And when she dies, I can either panic like fuck-all and try to figure out finances, or I can just sit back in my home 1000+ miles away and say, government, take it all.
posted by Tailkinker to-Ennien at 3:02 PM on August 26, 2021 [3 favorites]
Having been through this with my father-in-law… I get why people always leap to “I’ll just commit suicide.” Because with the system we have now, unless you are fabulously wealthy, there is no other solution to the problem of needing care that takes more resources than any one person has.
But that is fucked up. My father-in-law’s life was not worth less because he was paralyzed and needed a high level of care. He enjoyed time with family and friends. He had thoughts, opinions, hobbies, wisdom, joy. The idea that his life wasn’t worthwhile? That your life or my life wouldn’t be worthwhile if we needed the same level of care? It’s fucking disgusting.
“But it’s also not feasible to just expect family members to sacrifice everything to provide that care!” — Yeah, no shit. I’m sick and tired of the happy-crappy, “It’s all worth it! It’s not work, it’s a blessing!” narrative about family caregiving. It’s work. It’s far too much work to just simply expect of family members as a matter of course. It is the intensity of having a newborn, but for years and years, and the newborn is adult-sized. It completely consumes you. It breaks everybody.
So what’s the solution? Long-term, change the system. Short-term… get an elder care attorney to explore all your financial options. If you can, hire an elder care consultant to help you sort through options, too. I’m still angry that my mother-in-law refused to do this part because she was afraid of what a lawyer or consultant might cost. But she may indeed have been right in assuming that there weren’t any options.
Then you just… sacrifice everything because the alternative is unthinkable. My husband’s family did what they had to do. It broke relationships, it broke finances, it drained everyone’s physical and mental health. But there was no other option.
It pretty well convinced me that the only thing the future really holds is suffering and death. Intellectually, I recognize that sounds kind of like PTSD. But it just… there were no solutions, so everyone just broke and somehow kept going anyway, and it only ended when he did die, which hurt much worse. That’s just reality. It’s what I have to expect someday with my own parents, and someday with my husband. Every good or hopeful moment is just a temporary distraction from that ultimate reality.
(That may be disordered thinking… but if so, note that means my mind’s still broken years later.)
posted by snowmentality at 3:07 PM on August 26, 2021 [37 favorites]
But that is fucked up. My father-in-law’s life was not worth less because he was paralyzed and needed a high level of care. He enjoyed time with family and friends. He had thoughts, opinions, hobbies, wisdom, joy. The idea that his life wasn’t worthwhile? That your life or my life wouldn’t be worthwhile if we needed the same level of care? It’s fucking disgusting.
“But it’s also not feasible to just expect family members to sacrifice everything to provide that care!” — Yeah, no shit. I’m sick and tired of the happy-crappy, “It’s all worth it! It’s not work, it’s a blessing!” narrative about family caregiving. It’s work. It’s far too much work to just simply expect of family members as a matter of course. It is the intensity of having a newborn, but for years and years, and the newborn is adult-sized. It completely consumes you. It breaks everybody.
So what’s the solution? Long-term, change the system. Short-term… get an elder care attorney to explore all your financial options. If you can, hire an elder care consultant to help you sort through options, too. I’m still angry that my mother-in-law refused to do this part because she was afraid of what a lawyer or consultant might cost. But she may indeed have been right in assuming that there weren’t any options.
Then you just… sacrifice everything because the alternative is unthinkable. My husband’s family did what they had to do. It broke relationships, it broke finances, it drained everyone’s physical and mental health. But there was no other option.
It pretty well convinced me that the only thing the future really holds is suffering and death. Intellectually, I recognize that sounds kind of like PTSD. But it just… there were no solutions, so everyone just broke and somehow kept going anyway, and it only ended when he did die, which hurt much worse. That’s just reality. It’s what I have to expect someday with my own parents, and someday with my husband. Every good or hopeful moment is just a temporary distraction from that ultimate reality.
(That may be disordered thinking… but if so, note that means my mind’s still broken years later.)
posted by snowmentality at 3:07 PM on August 26, 2021 [37 favorites]
Every good or hopeful moment is just a temporary distraction from that ultimate reality.
(That may be disordered thinking… but if so, note that means my mind’s still broken years later.)
I...don't think that it is, though. I think the disorder is in the society that insists upon pretending that death and suffering are not ultimately what we ALL get, no matter what or who we are. There are ways for society to ease the burden of the suffering and diffuse it to a manageable level, and US society is not doing those things, it's true.
But we will all suffer and then we will all die, and everything else we experience in life is just a distraction on the way to that.
posted by We put our faith in Blast Hardcheese at 3:21 PM on August 26, 2021 [3 favorites]
(That may be disordered thinking… but if so, note that means my mind’s still broken years later.)
I...don't think that it is, though. I think the disorder is in the society that insists upon pretending that death and suffering are not ultimately what we ALL get, no matter what or who we are. There are ways for society to ease the burden of the suffering and diffuse it to a manageable level, and US society is not doing those things, it's true.
But we will all suffer and then we will all die, and everything else we experience in life is just a distraction on the way to that.
posted by We put our faith in Blast Hardcheese at 3:21 PM on August 26, 2021 [3 favorites]
Yeah my parents saw retirement as something that was never ever going to happen. They'd work until they died, because that's what they had told themselves for 40 years. Except well, your body sometimes just doesn't work as well as it did and you can no longer work. And then the dementia sets in and well...yeah.
I spent years trying to get my parents to do some sort of planning, some sort of anything. Hell I couldn't even convince Mom to work in her 60s for 18 months so she could get all her 'credits' and have her own Social Security 'I'll get half of Dad's! She'd say. Well yeah and then she found out last year what happens when Dad died.
Even in 2021, we are failing the most vulnerable with weird-ass SS rules, and Medicaid look-backs. Makes me think the best planning for me when it all goes down is some morphine.
posted by 922257033c4a0f3cecdbd819a46d626999d1af4a at 3:23 PM on August 26, 2021 [2 favorites]
I spent years trying to get my parents to do some sort of planning, some sort of anything. Hell I couldn't even convince Mom to work in her 60s for 18 months so she could get all her 'credits' and have her own Social Security 'I'll get half of Dad's! She'd say. Well yeah and then she found out last year what happens when Dad died.
Even in 2021, we are failing the most vulnerable with weird-ass SS rules, and Medicaid look-backs. Makes me think the best planning for me when it all goes down is some morphine.
posted by 922257033c4a0f3cecdbd819a46d626999d1af4a at 3:23 PM on August 26, 2021 [2 favorites]
Not a lawyer etc. but we went the Transfer on Death Deed (to us kids as joint tenants*) route for my mom, who was the sole owner of her house.
That and a relatively small reverse mortgage balance accrual allowed her to live the last 10 years of her life on medicaid and within the $2000 max asset cap medicaid perversely still requires.
* legal pitfall of joint tenancy deeding to siblings: in California, siblings can't quitclaim their portion of the house to end the joint tenancy without triggering a reassessment of their portion to market price, increasing the Prop 13 valuation of the house thereby -- to avoid this pitfall, if the siblings trust each other just deed the house to one sibling and have them reapportion it afterwards . . . instead of quitclaim the other siblings can sign a Disclaimer of Interest (within 9 months of the TOD deed executing on death) to have recorded on the title, which avoids this reassessment issue too
posted by Heywood Mogroot III at 3:31 PM on August 26, 2021 [3 favorites]
That and a relatively small reverse mortgage balance accrual allowed her to live the last 10 years of her life on medicaid and within the $2000 max asset cap medicaid perversely still requires.
* legal pitfall of joint tenancy deeding to siblings: in California, siblings can't quitclaim their portion of the house to end the joint tenancy without triggering a reassessment of their portion to market price, increasing the Prop 13 valuation of the house thereby -- to avoid this pitfall, if the siblings trust each other just deed the house to one sibling and have them reapportion it afterwards . . . instead of quitclaim the other siblings can sign a Disclaimer of Interest (within 9 months of the TOD deed executing on death) to have recorded on the title, which avoids this reassessment issue too
posted by Heywood Mogroot III at 3:31 PM on August 26, 2021 [3 favorites]
philip-random, if it's not too personal, what kinds of decisions would have helped? My parents are both 70, in pretty good health. They talk about considering now things that will make life easier as they age, but I don't really know what my sis and I should be doing now or talking about now to ease whatever may come.
Every situation is unique its way, so I'll try not to get too into details. I'm thinking of my mom here as my dad pre-deceased her by over a decade.
She lived in a comparatively remote community and wanted to stay there in her comparatively unique home. So she should've/could've taken a clearer eyed look at what it would require for her to be comfortably cared for in that home and community.
This basically meant two things:
1. some re-thinking of how the house was laid out should her mobility become an issue (it did and given longstanding arthritis issues, it should not have been a shock). Things like no stairs being required to get in or out the door, at least one bathroom being big enough to comfortably accommodate a wheelchair, and her main living area (bedroom, sitting room etc) all being on the same level.
2. setting up a suitable live-in option for a caregiver (ie: a more or less standalone suite that would afford them a measure of privacy, their own space).
Dealing with these concerns would not have been prohibitively expensive. And done right, they would only have added to the value of the home. But whenever I (or one of my siblings) raised the issue, she changed the subject, refused to dwell on such gloomy stuff. And then stuff happened and all of these very foreseeable problems became very real. The layout of the house was not appropriate for her. There was a spare room for a live-in caregiver but no real privacy beyond that, which meant it pretty much had to be family member ...
And so on.
We made it work. My five years taking care of her were not hell on earth. But a few thoughtful, comparatively inexpensive situation-specific decisions would have made a huge difference for both her comfort and everybody's mental health.
Or as she put it herself at one point (in a different context). "Change is inevitable. The question is, do you make the change or do you wait for the change to make you."
posted by philip-random at 3:54 PM on August 26, 2021 [14 favorites]
Every situation is unique its way, so I'll try not to get too into details. I'm thinking of my mom here as my dad pre-deceased her by over a decade.
She lived in a comparatively remote community and wanted to stay there in her comparatively unique home. So she should've/could've taken a clearer eyed look at what it would require for her to be comfortably cared for in that home and community.
This basically meant two things:
1. some re-thinking of how the house was laid out should her mobility become an issue (it did and given longstanding arthritis issues, it should not have been a shock). Things like no stairs being required to get in or out the door, at least one bathroom being big enough to comfortably accommodate a wheelchair, and her main living area (bedroom, sitting room etc) all being on the same level.
2. setting up a suitable live-in option for a caregiver (ie: a more or less standalone suite that would afford them a measure of privacy, their own space).
Dealing with these concerns would not have been prohibitively expensive. And done right, they would only have added to the value of the home. But whenever I (or one of my siblings) raised the issue, she changed the subject, refused to dwell on such gloomy stuff. And then stuff happened and all of these very foreseeable problems became very real. The layout of the house was not appropriate for her. There was a spare room for a live-in caregiver but no real privacy beyond that, which meant it pretty much had to be family member ...
And so on.
We made it work. My five years taking care of her were not hell on earth. But a few thoughtful, comparatively inexpensive situation-specific decisions would have made a huge difference for both her comfort and everybody's mental health.
Or as she put it herself at one point (in a different context). "Change is inevitable. The question is, do you make the change or do you wait for the change to make you."
posted by philip-random at 3:54 PM on August 26, 2021 [14 favorites]
I wonder if SARS CoV 2 will push people into needing care long before they expected to need it? What percent of those diagnosed with COVID have long-term effects that significantly disable people? All of these people needing care especially older people, will it spur legislation to deal with this or will it be a hellscape until the last of the current generation that needs this care die?
posted by RuvaBlue at 4:53 PM on August 26, 2021 [7 favorites]
posted by RuvaBlue at 4:53 PM on August 26, 2021 [7 favorites]
There are ways for society to ease the burden of the suffering and diffuse it to a manageable level, and US society is not doing those things.
Is any industrialized society on the planet handling care of its elderly in a humane way, or is everyone just dumping the costs onto families?
posted by monotreme at 5:11 PM on August 26, 2021 [2 favorites]
Is any industrialized society on the planet handling care of its elderly in a humane way, or is everyone just dumping the costs onto families?
posted by monotreme at 5:11 PM on August 26, 2021 [2 favorites]
Way too many people say, "Oh I'll just die/kill myself when I get to that point, rather than burdening others."
I'm sorry, but that's a really poor "plan." If that's really your plan, then I strongly advise you to develop a backup plan, because there's a very good chance you'll change your mind about voluntarily dying once you actually get to that point.
posted by mikeand1 at 5:22 PM on August 26, 2021 [23 favorites]
I'm sorry, but that's a really poor "plan." If that's really your plan, then I strongly advise you to develop a backup plan, because there's a very good chance you'll change your mind about voluntarily dying once you actually get to that point.
posted by mikeand1 at 5:22 PM on August 26, 2021 [23 favorites]
Oh hey there! I'm writing from Canada, which is supposed to be better than the US in matters of health care, and inarguably is for most of it, but I still had to take early retirement in order to care for my mother (88, memory and cognitive issues, though no formal diagnosis) and my mother in law (84, Alzheimers diagnosis made at least five years ago, still going strong). I can tell you that even the most genial octogenarians take massive amounts of work, enough to leave you dazed at the end of the day; it' similar to having small children but without the fun parts, or the parts where they grow up and become more independent. And add all the extra heartbreak: My mother a day or two ago, asking me about that man I was married to... what was his name. My father, I say. Oh yes, who was he? And you just want them to mother you sometimes, too, but in the meantime you're cleaning a shit explosion off the floor, and comforting them through said shit explosion, and oh god it's rough.
Regarding the idea that people will spare their kids the burden, my spouse's grandmother just died a few weeks ago. She was adamant, too, that she would just walk out into the snow and never come back. She said this many times, and was quite serious about it, but in the end she was 106 and bedridden for a few years before she left this world.
It is primarily women who are bearing this load. The daughters or daughters in law. There are many thousands--millions--of women trying to manage elder care and work and are being squeezed dry, because we cannot refuse to care for those we love. The work has to be done, and so we do it. Government help, at least in Canada, is there, but it's too little and generally is too late. So many women's lives are sacrificed to this.
posted by jokeefe at 5:49 PM on August 26, 2021 [30 favorites]
Regarding the idea that people will spare their kids the burden, my spouse's grandmother just died a few weeks ago. She was adamant, too, that she would just walk out into the snow and never come back. She said this many times, and was quite serious about it, but in the end she was 106 and bedridden for a few years before she left this world.
It is primarily women who are bearing this load. The daughters or daughters in law. There are many thousands--millions--of women trying to manage elder care and work and are being squeezed dry, because we cannot refuse to care for those we love. The work has to be done, and so we do it. Government help, at least in Canada, is there, but it's too little and generally is too late. So many women's lives are sacrificed to this.
posted by jokeefe at 5:49 PM on August 26, 2021 [30 favorites]
I strongly urge potential caregivers (US) to get power of attorney. When my father fell off of his cliff, it was in the middle of lockdown COVID and it was terrifying not having it and not having an easy way to get it done. The other option would be to apply for guardianship, and that can take months and is even more expensive.
My father was also very, very much planning on giving up before being forced to "live like this". Yet here he is, in a very diminished state, still wanting very much to live.
posted by armacy at 6:35 PM on August 26, 2021 [10 favorites]
My father was also very, very much planning on giving up before being forced to "live like this". Yet here he is, in a very diminished state, still wanting very much to live.
posted by armacy at 6:35 PM on August 26, 2021 [10 favorites]
The active caregiver gets a Durable Power of Attorney, Medical Power of Attorney, signs on the bank account, oversees expenditures, before you find they have invested their future with Publisher's Clearing House, and buy a million small expensive, useless things, that make them feel closer to winning. Get most payments on auto pay, set up the mortgage with PITI, and some states don't take property tax if income is low, and the individual is over 70. If they live in a condo, make sure to oversee all potential assessments, and make sure all payments are made.
Just thinking about what I went through with my now deceased parents while still raising a family as a single parent, is traumatizing, because I feel I served no one well.
Read up on the The Prescription Cascade in the Elderly
Remember pre-diabetes is not a disease, and does not require medication. Diabetic drugs are not for weight loss. Learn what normal values are so you can keep the sheer number of prescriptions down. Learn that almost all women who have had children have hiatal hernias, and a host of other bothersome, but not something that requires medication. There are so many things...
posted by Oyéah at 6:54 PM on August 26, 2021 [11 favorites]
Just thinking about what I went through with my now deceased parents while still raising a family as a single parent, is traumatizing, because I feel I served no one well.
Read up on the The Prescription Cascade in the Elderly
Remember pre-diabetes is not a disease, and does not require medication. Diabetic drugs are not for weight loss. Learn what normal values are so you can keep the sheer number of prescriptions down. Learn that almost all women who have had children have hiatal hernias, and a host of other bothersome, but not something that requires medication. There are so many things...
posted by Oyéah at 6:54 PM on August 26, 2021 [11 favorites]
My mom used to be a case manager for adults with disabilities in New Hampshire. The other day she told me that caregivers who were family members of her clients were eligible for payment and training. I believe this PDF documents that program. The relevant bit, on page 26, seems to be this:
• Strengthen respite for families. This includes funding and trained, available, on-call resources.
Hourly rates shall be increased to attract/retain qualified providers.
• Include the option for payment to family caregivers for their direct support of any individual
over age 18, with rigorous safeguards to prevent conflict of interest and/or quality of services
for any member.
I thought I saw an ad or something on John Oliver(?) saying that one of the goals of the US infrastructure bill was to provide payments for family members forced to quit their jobs to care for older parents. I would guess that it got edited out of the pared-down current bill.
posted by bendy at 6:59 PM on August 26, 2021 [3 favorites]
• Strengthen respite for families. This includes funding and trained, available, on-call resources.
Hourly rates shall be increased to attract/retain qualified providers.
• Include the option for payment to family caregivers for their direct support of any individual
over age 18, with rigorous safeguards to prevent conflict of interest and/or quality of services
for any member.
I thought I saw an ad or something on John Oliver(?) saying that one of the goals of the US infrastructure bill was to provide payments for family members forced to quit their jobs to care for older parents. I would guess that it got edited out of the pared-down current bill.
posted by bendy at 6:59 PM on August 26, 2021 [3 favorites]
Non-paywalled version of The Prescription Cascade in the Elderly.
(I love archive.today at least as much as I love Threadreader.)
posted by bendy at 7:03 PM on August 26, 2021 [1 favorite]
(I love archive.today at least as much as I love Threadreader.)
posted by bendy at 7:03 PM on August 26, 2021 [1 favorite]
Greetings from deep in the thick of this world from the professional side! I've worked as a home health aide and an RN, at nursing homes and home-based programs, as the person giving the care on the floor and as an administrator. Several years of observations:
-The observation that Petersen and others make about how women almost always provide all the elder care is accurate, but it doesn't even scratch the depths of how any woman in a person's (but let's be real, most often a man's) orbit can get drafted as a caretaker. You would not believe the number of mothers-in-law who end up being the primary contact and decision maker for their husband's parents, or the number of ex-wives caring for once-estranged husbands. Remember Eyebrows McGee's comment way back in the emotional labor thread about the health and social consequences of men having no networks outside their spouse? This is the end result. Men, cultivate relationships and make good advance directives so you don't end up burdening a random woman in your periphery with your care!
-On the flip side, as with babysitting, sons or nephews who assume caretaking roles for elderly relatives and have even the most basic degree of competence get endless fawning about how well they're doing and about the sacrifices they make. I have known both male relatives and male home health aides/CNAs who provide excellent care, but the amount of praise they get relative to female relatives and aides who also go above and beyond in the care they give is unreal.
-As with young children, a lot of people with dementia benefit tremendously from routine. The program I work at now, among other things, has day centers that provide health care, meals, recreation, and a number of other services for elders. When covid shut down the centers, a number of folks who had been managing tenuously on their own or with just a bit of family oversight lost a major source of structure, not to mention a place where they could eat and have someone administer their morning medications. Lots of those folks are in nursing homes now. I would bet good money that programs like mine all over the country saw a rise in nursing home placements in 2020 compared to 2019, and I would love to see pieces about these trends alongside those about what kids have lost from not having in-person school.
-I would love to see home caretaking elevated into a "good American job" as one of Petersen's interviewees suggests, but I fear that this is a losing battle because it's a job that's both strongly gendered and strongly racialized. You can draw some pretty clear lines from slave women looking after white children on plantations to nursing homes aides today being primarily African American or non-white immigrants of many ethnicities. Even within nursing, as a white student in a BSN program, I received messages both implicit and explicit that working in a nursing home was simultaneously "boring because you just give pills" or "so hard" or "it just pigeonholes you." I can't say I loved working in a nursing home, not at all, but it sure taught me to see through all those racist dog whistles.
None of this is to say that it's not worth trying to unionize caretakers, or raise wages, or make nursing homes that are run as workers' co-ops, or challenge the racism and sexism that tell us to devalue the work. It's just worth noting the years' worth of stereotypes and implicit biases we're working against.
posted by I am a Sock, I am an Island at 7:42 PM on August 26, 2021 [38 favorites]
-The observation that Petersen and others make about how women almost always provide all the elder care is accurate, but it doesn't even scratch the depths of how any woman in a person's (but let's be real, most often a man's) orbit can get drafted as a caretaker. You would not believe the number of mothers-in-law who end up being the primary contact and decision maker for their husband's parents, or the number of ex-wives caring for once-estranged husbands. Remember Eyebrows McGee's comment way back in the emotional labor thread about the health and social consequences of men having no networks outside their spouse? This is the end result. Men, cultivate relationships and make good advance directives so you don't end up burdening a random woman in your periphery with your care!
-On the flip side, as with babysitting, sons or nephews who assume caretaking roles for elderly relatives and have even the most basic degree of competence get endless fawning about how well they're doing and about the sacrifices they make. I have known both male relatives and male home health aides/CNAs who provide excellent care, but the amount of praise they get relative to female relatives and aides who also go above and beyond in the care they give is unreal.
-As with young children, a lot of people with dementia benefit tremendously from routine. The program I work at now, among other things, has day centers that provide health care, meals, recreation, and a number of other services for elders. When covid shut down the centers, a number of folks who had been managing tenuously on their own or with just a bit of family oversight lost a major source of structure, not to mention a place where they could eat and have someone administer their morning medications. Lots of those folks are in nursing homes now. I would bet good money that programs like mine all over the country saw a rise in nursing home placements in 2020 compared to 2019, and I would love to see pieces about these trends alongside those about what kids have lost from not having in-person school.
-I would love to see home caretaking elevated into a "good American job" as one of Petersen's interviewees suggests, but I fear that this is a losing battle because it's a job that's both strongly gendered and strongly racialized. You can draw some pretty clear lines from slave women looking after white children on plantations to nursing homes aides today being primarily African American or non-white immigrants of many ethnicities. Even within nursing, as a white student in a BSN program, I received messages both implicit and explicit that working in a nursing home was simultaneously "boring because you just give pills" or "so hard" or "it just pigeonholes you." I can't say I loved working in a nursing home, not at all, but it sure taught me to see through all those racist dog whistles.
None of this is to say that it's not worth trying to unionize caretakers, or raise wages, or make nursing homes that are run as workers' co-ops, or challenge the racism and sexism that tell us to devalue the work. It's just worth noting the years' worth of stereotypes and implicit biases we're working against.
posted by I am a Sock, I am an Island at 7:42 PM on August 26, 2021 [38 favorites]
Big money in slow dying.
posted by turbid dahlia at 8:49 PM on August 26, 2021 [4 favorites]
posted by turbid dahlia at 8:49 PM on August 26, 2021 [4 favorites]
It's a rather ghoulish thing to say but I feel so fortunate that both my parents had passed by the time I hit 40, and both relatively quickly.
My father did physical work and while having a few minor age-related malfunctions (bursitis, hip replacement) was in rude health both mentally and physically, going downhill skiing in the Alps and visiting his 90-year-old aunt on the regular until being found stone dead behind the house at 75. Absent the fact he was never able to fully retire I'm so grateful he went when, and in the way he did, not least because it's probably pretty close to how he would have chosen to die.
My mum, many years later and also the picture of health otherwise, also went at 75, after a stage IV cancer diagnosis which had already started to metastasise. She needed care and, despite swearing for years that she would never ask me to care for her and would go into a nursing home, SURPRISE!!! -- when the time came she demanded home care and actively placed this responsibility on my shoulders, despite my living abroad. The reality of the situation along with the lifelong toxic patterns it invoked blew up my life and years later I'm still dealing with the fallout.
She'd had supplementary health insurance so fortunately there were no bills to contend with and home hospice care was included, but Advocate's hospice care supplies equipment, and has a roving nurse and home health aide staff for emergencies and weekly check-ins, but family members have to take on 100% of the care burden. As she had no support network of any kind I became her 24-hour carer, save the moments when her only friend -- also 75 -- would visit and sit with her for an hour or two so I could go to the shops or the pharmacy.
The only not-horrible thing I can say about that experience is that it didn't drag on for years.
As bad as that was I still feel I got off easy compared to my cousins. While their situation isn't playing out in the US the circumstances are universal, and apply somewhat to those questions upthread about how to prepare for needing care in later age: Understand the day will come when you need help or care of some kind, and think about how to be as light a burden as possible.
Their mother was in that liminal stage where her age-related physical and cognitive decline wasn't bad enough to qualify for institutional assistance but also couldn't sustain full independence. So while she swore up and down she didn't need help, her children also got multiple phone calls every day whenever something went wrong, and would often find things in a parlous state when they arrived to visit, because she refused to accept the reality of her situation. The burden on them became orders of magnitude heavier because they had to take on not only the functional labour of doing the things she couldn't do for herself, but also the emotional labour of figuring out what needed doing, and had their lives thrown into chaos when they had to drop everything to deal with a problem that could have been solved easily with a bit of notice. All because their mother wanted the luxury of claiming she didn't need help whilst simultaneously having others solve all her problems. In situations like this the toddler comparison is apt.
It's difficult to care for someone, and it's difficult to be cared for. It's difficult to admit you can't do everything for yourself anymore. It's difficult to need help to manage the basics of your daily life. It's difficult to give up freedoms, to relinquish power, to accept the parent/child dynamic is in some ways being flipped. But for many people it's inevitable, and thinking hard about what that's going to look like on the day-to-day is as important as laying out your house to accommodate caregivers and getting your financial affairs in order.
Accept that you'll need to make concessions in your day-to-day life to make it easier for those family members whose responsibility it becomes. Maybe that means a daily phone call to check you've taken your medications, or eaten a meal. Maybe that means rearranging your furniture or the contents of your refrigerator. Maybe that means scheduled visits, or only going to the shops once a week when someone can drive you. Maybe that means regular family meetings where your needs and abilities are discussed, and a group decision is made about the best way to facilitate those needs. Maybe that means creating a routine that is not ideal for you but is workable, or agreeing to something you're not 100% happy with because it makes it easier for those around you to give the help you need.
posted by myotahapea at 11:42 PM on August 26, 2021 [11 favorites]
My father did physical work and while having a few minor age-related malfunctions (bursitis, hip replacement) was in rude health both mentally and physically, going downhill skiing in the Alps and visiting his 90-year-old aunt on the regular until being found stone dead behind the house at 75. Absent the fact he was never able to fully retire I'm so grateful he went when, and in the way he did, not least because it's probably pretty close to how he would have chosen to die.
My mum, many years later and also the picture of health otherwise, also went at 75, after a stage IV cancer diagnosis which had already started to metastasise. She needed care and, despite swearing for years that she would never ask me to care for her and would go into a nursing home, SURPRISE!!! -- when the time came she demanded home care and actively placed this responsibility on my shoulders, despite my living abroad. The reality of the situation along with the lifelong toxic patterns it invoked blew up my life and years later I'm still dealing with the fallout.
She'd had supplementary health insurance so fortunately there were no bills to contend with and home hospice care was included, but Advocate's hospice care supplies equipment, and has a roving nurse and home health aide staff for emergencies and weekly check-ins, but family members have to take on 100% of the care burden. As she had no support network of any kind I became her 24-hour carer, save the moments when her only friend -- also 75 -- would visit and sit with her for an hour or two so I could go to the shops or the pharmacy.
The only not-horrible thing I can say about that experience is that it didn't drag on for years.
As bad as that was I still feel I got off easy compared to my cousins. While their situation isn't playing out in the US the circumstances are universal, and apply somewhat to those questions upthread about how to prepare for needing care in later age: Understand the day will come when you need help or care of some kind, and think about how to be as light a burden as possible.
Their mother was in that liminal stage where her age-related physical and cognitive decline wasn't bad enough to qualify for institutional assistance but also couldn't sustain full independence. So while she swore up and down she didn't need help, her children also got multiple phone calls every day whenever something went wrong, and would often find things in a parlous state when they arrived to visit, because she refused to accept the reality of her situation. The burden on them became orders of magnitude heavier because they had to take on not only the functional labour of doing the things she couldn't do for herself, but also the emotional labour of figuring out what needed doing, and had their lives thrown into chaos when they had to drop everything to deal with a problem that could have been solved easily with a bit of notice. All because their mother wanted the luxury of claiming she didn't need help whilst simultaneously having others solve all her problems. In situations like this the toddler comparison is apt.
It's difficult to care for someone, and it's difficult to be cared for. It's difficult to admit you can't do everything for yourself anymore. It's difficult to need help to manage the basics of your daily life. It's difficult to give up freedoms, to relinquish power, to accept the parent/child dynamic is in some ways being flipped. But for many people it's inevitable, and thinking hard about what that's going to look like on the day-to-day is as important as laying out your house to accommodate caregivers and getting your financial affairs in order.
Accept that you'll need to make concessions in your day-to-day life to make it easier for those family members whose responsibility it becomes. Maybe that means a daily phone call to check you've taken your medications, or eaten a meal. Maybe that means rearranging your furniture or the contents of your refrigerator. Maybe that means scheduled visits, or only going to the shops once a week when someone can drive you. Maybe that means regular family meetings where your needs and abilities are discussed, and a group decision is made about the best way to facilitate those needs. Maybe that means creating a routine that is not ideal for you but is workable, or agreeing to something you're not 100% happy with because it makes it easier for those around you to give the help you need.
posted by myotahapea at 11:42 PM on August 26, 2021 [11 favorites]
It's not just older people. There are tens of thousands of children who care for parents and get no statutory assistance whatsoever.
posted by parmanparman at 2:32 AM on August 27, 2021 [5 favorites]
posted by parmanparman at 2:32 AM on August 27, 2021 [5 favorites]
My father-in-law is in a nursing home. He was getting benefits from the VA while he was in assisted living but they mostly ended when he entered the nursing home. My wife is currently in the middle of a finger-pointing exercise between the nursing home and the VA over who has responsibility for repairing the hearing aids the VA originally gave him. It never ends.
posted by tommasz at 6:19 AM on August 27, 2021
posted by tommasz at 6:19 AM on August 27, 2021
My mother in law simply dropped dead at work. We know to count this as a blessing.
Meanwhile, my father's about to turn 90. Disabled, only mobile with a rollator. He takes a bushel of meds each day. From his assisted living facility he cycles in and out of the local hospital and rehab unit with various injuries, crises, diseases: infections, falls, sprains, wounds.
When he's in his home he sleeps most of the time, often passing out at the lunch table. Otherwise he reads nothing by spy stories and thrillers, which makes him happy.
He resents every bit of the medical situations he's in. He despises how his body fails him and disdains most of the people he interacts with.
His savings are dwindling. At some point he'll be broke. I don't think he wants to consider what happens next.
I'm around 700 miles away. He refuses every offer I make to visit and help out. So I do what I can remotely: arranging for COVID shots, talking to medical and housing people, trying to get him connected to the local library.
posted by doctornemo at 6:29 AM on August 27, 2021 [4 favorites]
Meanwhile, my father's about to turn 90. Disabled, only mobile with a rollator. He takes a bushel of meds each day. From his assisted living facility he cycles in and out of the local hospital and rehab unit with various injuries, crises, diseases: infections, falls, sprains, wounds.
When he's in his home he sleeps most of the time, often passing out at the lunch table. Otherwise he reads nothing by spy stories and thrillers, which makes him happy.
He resents every bit of the medical situations he's in. He despises how his body fails him and disdains most of the people he interacts with.
His savings are dwindling. At some point he'll be broke. I don't think he wants to consider what happens next.
I'm around 700 miles away. He refuses every offer I make to visit and help out. So I do what I can remotely: arranging for COVID shots, talking to medical and housing people, trying to get him connected to the local library.
posted by doctornemo at 6:29 AM on August 27, 2021 [4 favorites]
I can't tell you how depressing this thread is to someone who has no family. What happens to us?
posted by HotToddy at 6:37 AM on August 27, 2021 [15 favorites]
posted by HotToddy at 6:37 AM on August 27, 2021 [15 favorites]
It really seems like no one in this country has a right to be alive except those who are actively working jobs good enough to provide excellent insurance. Everyone else is just kind of hanging on as best they can with help from other humans who also want them to stay alive. But if you don't have that you are screwed.
And this was the norm for most of our history - and even after the creation of Social Security, etc., for those that didn't benefit from the postwar boom (i.e. those whose primary working years didn't occur during it, or didn't climb into the middle class), old age very often meant poverty.
I think semi-regularly of Kent McKenzie's 1956 short film "Bunker Hill" (sadly not available online AFAIK, but included as an extra with the Criterion DVD of his extraordinary feature "The Exiles"), which captured essentially an entire neighborhood of elderly Angelenos, mostly men, living in tiny, SRO-style rooms, dressed shabbily, and spending their days in bars, parks, etc. Unless you had extended family to make up for what you couldn't pay out of pocket for, that was your fate.
And the housing options shown there obviously largely don't exist now.
I'm surprised that, given the constant click-bait focus on millennial finances, the topic of retirement and old age don't come up more. I think they're the first generation that is going to see a large % of it being in dire financial circumstances when they're too old to work.
posted by ryanshepard at 6:46 AM on August 27, 2021 [3 favorites]
And this was the norm for most of our history - and even after the creation of Social Security, etc., for those that didn't benefit from the postwar boom (i.e. those whose primary working years didn't occur during it, or didn't climb into the middle class), old age very often meant poverty.
I think semi-regularly of Kent McKenzie's 1956 short film "Bunker Hill" (sadly not available online AFAIK, but included as an extra with the Criterion DVD of his extraordinary feature "The Exiles"), which captured essentially an entire neighborhood of elderly Angelenos, mostly men, living in tiny, SRO-style rooms, dressed shabbily, and spending their days in bars, parks, etc. Unless you had extended family to make up for what you couldn't pay out of pocket for, that was your fate.
And the housing options shown there obviously largely don't exist now.
I'm surprised that, given the constant click-bait focus on millennial finances, the topic of retirement and old age don't come up more. I think they're the first generation that is going to see a large % of it being in dire financial circumstances when they're too old to work.
posted by ryanshepard at 6:46 AM on August 27, 2021 [3 favorites]
I can't tell you how depressing this thread is to someone who has no family. What happens to us?
We get the consolation of not leaving anyone else destitute or in the position of making an impossible decision.
posted by mochapickle at 7:05 AM on August 27, 2021 [9 favorites]
We get the consolation of not leaving anyone else destitute or in the position of making an impossible decision.
posted by mochapickle at 7:05 AM on August 27, 2021 [9 favorites]
I think about the issue in the FPP (taking care of an aging parent) often, since I can see that day approaching. My parent is in great health currently, but one fall or other medical issue could change that instantly.
I can't tell you how depressing this thread is to someone who has no family. What happens to us?
This is what actively worries me. We don't have kids and don't have nieces/nephews who would take on those roles, either. It's a common situation -- many people have no children, or are totally estranged from them or otherwise never going to have a younger caretaker. I assume a lot of the burden falls on friends (also older, also dealing with their own problems and worries) but that seems like a fragile basis to plan on.
posted by Dip Flash at 7:09 AM on August 27, 2021
I can't tell you how depressing this thread is to someone who has no family. What happens to us?
This is what actively worries me. We don't have kids and don't have nieces/nephews who would take on those roles, either. It's a common situation -- many people have no children, or are totally estranged from them or otherwise never going to have a younger caretaker. I assume a lot of the burden falls on friends (also older, also dealing with their own problems and worries) but that seems like a fragile basis to plan on.
posted by Dip Flash at 7:09 AM on August 27, 2021
We get the consolation of not leaving anyone else destitute or in the position to make an impossible decision.
Right. And I'm having trouble discerning from the comments what an elderly person is supposed to do even if they do have family. If you accept help, you're a burden. If you refuse help, you're an oppositional toddler.
posted by HotToddy at 7:14 AM on August 27, 2021 [5 favorites]
Right. And I'm having trouble discerning from the comments what an elderly person is supposed to do even if they do have family. If you accept help, you're a burden. If you refuse help, you're an oppositional toddler.
posted by HotToddy at 7:14 AM on August 27, 2021 [5 favorites]
Their mother was in that liminal stage where her age-related physical and cognitive decline wasn't bad enough to qualify for institutional assistance but also couldn't sustain full independence. So while she swore up and down she didn't need help, her children also got multiple phone calls every day whenever something went wrong, and would often find things in a parlous state when they arrived to visit, because she refused to accept the reality of her situation. The burden on them became orders of magnitude heavier because they had to take on not only the functional labour of doing the things she couldn't do for herself, but also the emotional labour of figuring out what needed doing
Lol are you my cousin??? Because it me. We keep saying that if mom would just let us take it over--set up autopays, manage her bank accounts, sort her mail--we could make her life run smoothly. (This would hugely help with her anxiety disorder no doubt!) But she just won't.
And I'm having trouble discerning from the comments what an elderly person is supposed to do even if they do have family. If you accept help, you're a burden. If you refuse help, you're an oppositional toddler.
What I'm gleaning from the comments (and admittedly projecting from my own experience) is that what an elderly person is supposed to do is be an active participant in planning their care from an early date. Keep their finances and paperwork organized and ensure their family knows how to find them. Get long-term care insurance, if it's possible. Be clear about their wishes and not be in denial about the inevitability of aging. Prepare for the worst, in other words, while hoping for the best.
It doesn't seem like a lot to ask but it must be, based on how few people seem able to do it. It involves accepting, again, that everyone even you will suffer and die, and most people just. will. not.
This is the rare situation where I feel a lifetime of suicidal depression has actually set me up to cope appropriately, lol. I have no emotional or psychological blocks around considering my own death. That said, I still have not managed to fully organize the transfer of all my accounts and stuff, because it's just lots of STUFF in a time when my executive function and energy are shot.
posted by We put our faith in Blast Hardcheese at 7:38 AM on August 27, 2021 [6 favorites]
Lol are you my cousin??? Because it me. We keep saying that if mom would just let us take it over--set up autopays, manage her bank accounts, sort her mail--we could make her life run smoothly. (This would hugely help with her anxiety disorder no doubt!) But she just won't.
And I'm having trouble discerning from the comments what an elderly person is supposed to do even if they do have family. If you accept help, you're a burden. If you refuse help, you're an oppositional toddler.
What I'm gleaning from the comments (and admittedly projecting from my own experience) is that what an elderly person is supposed to do is be an active participant in planning their care from an early date. Keep their finances and paperwork organized and ensure their family knows how to find them. Get long-term care insurance, if it's possible. Be clear about their wishes and not be in denial about the inevitability of aging. Prepare for the worst, in other words, while hoping for the best.
It doesn't seem like a lot to ask but it must be, based on how few people seem able to do it. It involves accepting, again, that everyone even you will suffer and die, and most people just. will. not.
This is the rare situation where I feel a lifetime of suicidal depression has actually set me up to cope appropriately, lol. I have no emotional or psychological blocks around considering my own death. That said, I still have not managed to fully organize the transfer of all my accounts and stuff, because it's just lots of STUFF in a time when my executive function and energy are shot.
posted by We put our faith in Blast Hardcheese at 7:38 AM on August 27, 2021 [6 favorites]
I was just re-reading Roz Chast's memoir, Can't We Talk about Something More Pleasant?, which is on exactly this topic.
posted by EllaEm at 8:12 AM on August 27, 2021 [2 favorites]
posted by EllaEm at 8:12 AM on August 27, 2021 [2 favorites]
We get the consolation of not leaving anyone else destitute or in the position of making an impossible decision.
Someone will still have to make the impossible decision. It will just be a stranger instead. I don’t know if that makes it any easier on them.
posted by notoriety public at 8:13 AM on August 27, 2021 [3 favorites]
Someone will still have to make the impossible decision. It will just be a stranger instead. I don’t know if that makes it any easier on them.
posted by notoriety public at 8:13 AM on August 27, 2021 [3 favorites]
-Please have a will drawn up and filed with the city/county
-Please have your wants/needs explicitly laid out in that document and with your primary care providers (doctors, etc.)
-Please have this difficult conversation with elderly parents, before it's too late, just talk about it and know where the will is located
Clarity in these places provides so much guidance when someone becomes incapacitated or passes suddenly. Americans (and others I'm sure) are too afraid to acknowledge the real truth of death, that we are all going to die.
It can linger and take 8 years like with my mother's FTD (frontal temporal dementia which is particularly insidious) Or happen in a moment as with my father when his heart stopped in his sleep.
posted by djseafood at 10:00 AM on August 27, 2021 [3 favorites]
-Please have your wants/needs explicitly laid out in that document and with your primary care providers (doctors, etc.)
-Please have this difficult conversation with elderly parents, before it's too late, just talk about it and know where the will is located
Clarity in these places provides so much guidance when someone becomes incapacitated or passes suddenly. Americans (and others I'm sure) are too afraid to acknowledge the real truth of death, that we are all going to die.
It can linger and take 8 years like with my mother's FTD (frontal temporal dementia which is particularly insidious) Or happen in a moment as with my father when his heart stopped in his sleep.
posted by djseafood at 10:00 AM on August 27, 2021 [3 favorites]
Lol are you my cousin??? Because it me. We keep saying that if mom would just let us take it over--set up autopays, manage her bank accounts, sort her mail--we could make her life run smoothly. (This would hugely help with her anxiety disorder no doubt!) But she just won't.
Heh. Given the population of our home country, it's exceedingly unlikely. (Also these cousins are nowhere near interesting enough to even recognise, much less deploy, your username.)
Unfortunately, though, this behaviour seems far more common than one would hope.
And I'm having trouble discerning from the comments what an elderly person is supposed to do even if they do have family. If you accept help, you're a burden. If you refuse help, you're an oppositional toddler.
Caring for others is always a burden, in the literal sense that it takes more effort than doing nothing. But if you cooperate in that care you can make that burden as light as possible, and may even find a way to get some mutual fulfilment from the experience.
This is the rare situation where I feel a lifetime of suicidal depression has actually set me up to cope appropriately, lol. I have no emotional or psychological blocks around considering my own death. That said, I still have not managed to fully organize the transfer of all my accounts and stuff, because it's just lots of STUFF in a time when my executive function and energy are shot.
Lol now is when I ask if you're actually me; don't ever let anyone tell you suicidal depression isn't good for anything. I've spent copious amounts of time thinking about and planning for my demise: writing a will, keeping documents in a location and order that would make objective sense to an outside observer, even tracking alterations to my house like defunct wiring.
I have nobody to care for me, now or when I grow old. I don't think I've ever expected it to be any different, honestly. (Whilst in the midst of some DIY I half-humorously commented to a relative abroad that if my wobbly ladder gave out under me it would likely be weeks before someone stumbled across my corpse.) I've long felt that life is an unappealing enough prospect that I can only tolerate it if I'm free from impairment, so contemplation of death is something I'm pretty comfortable with.
I can't tell you how depressing this thread is to someone who has no family. What happens to us?
Given the choice, I'd much prefer to go out on my own terms than to waste away in a care facility, my continued existence dependent on someone else's labour.
Fortunately I live in a sparsely populated area with seriously cold winters.
posted by myotahapea at 10:36 AM on August 27, 2021 [4 favorites]
Heh. Given the population of our home country, it's exceedingly unlikely. (Also these cousins are nowhere near interesting enough to even recognise, much less deploy, your username.)
Unfortunately, though, this behaviour seems far more common than one would hope.
And I'm having trouble discerning from the comments what an elderly person is supposed to do even if they do have family. If you accept help, you're a burden. If you refuse help, you're an oppositional toddler.
What I'm gleaning from the comments (and admittedly projecting from my own experience) is that what an elderly person is supposed to do is be an active participant in planning their care from an early date.Yea, this is where I was trying to go with that comment. If you accept the time will almost certainly come that you need assistance, and are willing to discuss it openly with with your family/friends/neighbours, find a system that works for everyone and willingly participate in it, things are immensely eased for everyone. Problem is, too many people choose to be oppositional toddlers, doing the equivalent of clamping their lips shut and twisting their faces away from the spoon when someone tries to keep them fed. And if you vehemently resist discussing how to get your needs met because you refuse to even consider the possibility you're not 100% independent, only to e.g. call your children and demand they drive 60km *right now* because you hear a strange noise in the house or can't remember where you put your newest prescription, you're sacrificing others' lives on the altar of your ego.
Caring for others is always a burden, in the literal sense that it takes more effort than doing nothing. But if you cooperate in that care you can make that burden as light as possible, and may even find a way to get some mutual fulfilment from the experience.
This is the rare situation where I feel a lifetime of suicidal depression has actually set me up to cope appropriately, lol. I have no emotional or psychological blocks around considering my own death. That said, I still have not managed to fully organize the transfer of all my accounts and stuff, because it's just lots of STUFF in a time when my executive function and energy are shot.
Lol now is when I ask if you're actually me; don't ever let anyone tell you suicidal depression isn't good for anything. I've spent copious amounts of time thinking about and planning for my demise: writing a will, keeping documents in a location and order that would make objective sense to an outside observer, even tracking alterations to my house like defunct wiring.
I have nobody to care for me, now or when I grow old. I don't think I've ever expected it to be any different, honestly. (Whilst in the midst of some DIY I half-humorously commented to a relative abroad that if my wobbly ladder gave out under me it would likely be weeks before someone stumbled across my corpse.) I've long felt that life is an unappealing enough prospect that I can only tolerate it if I'm free from impairment, so contemplation of death is something I'm pretty comfortable with.
I can't tell you how depressing this thread is to someone who has no family. What happens to us?
Given the choice, I'd much prefer to go out on my own terms than to waste away in a care facility, my continued existence dependent on someone else's labour.
Fortunately I live in a sparsely populated area with seriously cold winters.
posted by myotahapea at 10:36 AM on August 27, 2021 [4 favorites]
Problem is, too many people choose to be oppositional toddlers, doing the equivalent of clamping their lips shut and twisting their faces away from the spoon when someone tries to keep them fed.
people who talk like this about the disabled, secure in the knowledge that it's socially acceptable to do so as long as the disabled are also old, are frequently the same people who do a lot of macho posturing about going out on their own terms but don't actually do it. Even people thoroughly depressed and terrified about old age rarely do it, because about the time you realize it's time is usually right after you lose the mental or physical capacity to follow through without help. and after that, someone is usually watching who won't let you.
so good luck wandering off into those "seriously cold winters" if someone like you is around to scold you for presuming to go outside on your own two feet without a permission slip, like a grown-up who has a right to.
I really can't tell you how odd it is to read the demand that old people cooperate in their care, followed by the declaration that you, being exceptional, reserve the right not to cooperate, to refuse care, to opt out on your own terms. that's what all difficult old people think they're doing, that's what the people you describe with such vivid resentment think they're doing. Everybody thinks avoiding dependence and maintaining freedom is good for them, and accepting dependence and following directions is good for other people.
posted by queenofbithynia at 1:21 PM on August 27, 2021 [19 favorites]
people who talk like this about the disabled, secure in the knowledge that it's socially acceptable to do so as long as the disabled are also old, are frequently the same people who do a lot of macho posturing about going out on their own terms but don't actually do it. Even people thoroughly depressed and terrified about old age rarely do it, because about the time you realize it's time is usually right after you lose the mental or physical capacity to follow through without help. and after that, someone is usually watching who won't let you.
so good luck wandering off into those "seriously cold winters" if someone like you is around to scold you for presuming to go outside on your own two feet without a permission slip, like a grown-up who has a right to.
I really can't tell you how odd it is to read the demand that old people cooperate in their care, followed by the declaration that you, being exceptional, reserve the right not to cooperate, to refuse care, to opt out on your own terms. that's what all difficult old people think they're doing, that's what the people you describe with such vivid resentment think they're doing. Everybody thinks avoiding dependence and maintaining freedom is good for them, and accepting dependence and following directions is good for other people.
posted by queenofbithynia at 1:21 PM on August 27, 2021 [19 favorites]
These days, I am going through almost daily severe anxiety attacks. My mother has been robbed at her nursing home, and I have to deal with it, and even though I knew in advance this would be bad, I am still shell-shocked.
Since 2002, I have been dealing with old and dying relatives. In some cases I have been able to share the burden with my (wonderful) siblings and cousins, and in some cases it just hasn't been an option, no fault of theirs. I've recently been diagnosed with PTSD, so it is not a good situation.
During all those years, I've met most of the issues that are brought up here, starting with my granddad who died of cancer in 2002. If I had known what I know today, that wouldn't have been so terrible, but I didn't. My granddad had always claimed he would commit suicide if he became terminally ill, but he did none of the sort. Contrariwise, he clung to life in a way that made his last days extremely painful and literally terrifying. I think my mother, uncle and aunt are still very scared of death after that experience, because in our family people live long lives, and they have seen no other deaths. Just to be clear, I never thought suicide was a good solution, but today I would have known how to get him into palliative care. And maybe he could have lived longer if we had known what to do, because probably he didn't get the right treatment for his cancer.
Being a next-of-kin is almost a profession. and at this point of life I am a professional with the battle scars to prove it.
My dad had an impressive control of his system that meant that he only shat himself or puked all over the house when I was there. My siblings and the professional carers never saw it. I had never in my life thought I could deal with that but I could.
My grandmother refused to talk with the medical staff at the hospital about her end-of-life care till I was present, and since I was in Japan at work at the time, that meant staying alive for ten days with hardly any organ function. Humans are wild.
To get back to my mother, uncle and aunt, they "disappeared" while my grandmother was dying. But my cousin and I shared the responsibility, so I'm not whining.
But I'm burying the lead: I'm in socialist paradise Denmark, where the whole economic aspect of this is non-existent and care is provided as a given to all vulnerable people. I had paid leave while my grandmother was dying when I eventually returned to Denmark, my sisters had paid leave while my stepmom and dad where dying. (It's not that simple, but in comparison with the US it is). I can't tell you how often I have thought about how terrible it must be for Americans to be in the same situation as I have been for near twenty years, with no real governmental support in your country.
Even in a country with universal healthcare and good facilities for vulnerable citizens, the support and engagement of relatives is crucial. It's not that the hospitals and nursing homes don't take care of the people without relatives, they just give them a lower priority.
I have children, and they have seen by example that one cares for the vulnerable in our family. They were there the night my gran died, and it was a warm night as well as very sad. They visited my dad at the hospice, hours before he died. They know death is part of life, in a way my generation never learnt. I don't love my mother, but I care for her. I hope my kids have learned from this, and I know our relation is better than the one I have with my mother. But one never knows.
posted by mumimor at 1:38 PM on August 27, 2021 [10 favorites]
Since 2002, I have been dealing with old and dying relatives. In some cases I have been able to share the burden with my (wonderful) siblings and cousins, and in some cases it just hasn't been an option, no fault of theirs. I've recently been diagnosed with PTSD, so it is not a good situation.
During all those years, I've met most of the issues that are brought up here, starting with my granddad who died of cancer in 2002. If I had known what I know today, that wouldn't have been so terrible, but I didn't. My granddad had always claimed he would commit suicide if he became terminally ill, but he did none of the sort. Contrariwise, he clung to life in a way that made his last days extremely painful and literally terrifying. I think my mother, uncle and aunt are still very scared of death after that experience, because in our family people live long lives, and they have seen no other deaths. Just to be clear, I never thought suicide was a good solution, but today I would have known how to get him into palliative care. And maybe he could have lived longer if we had known what to do, because probably he didn't get the right treatment for his cancer.
Being a next-of-kin is almost a profession. and at this point of life I am a professional with the battle scars to prove it.
My dad had an impressive control of his system that meant that he only shat himself or puked all over the house when I was there. My siblings and the professional carers never saw it. I had never in my life thought I could deal with that but I could.
My grandmother refused to talk with the medical staff at the hospital about her end-of-life care till I was present, and since I was in Japan at work at the time, that meant staying alive for ten days with hardly any organ function. Humans are wild.
To get back to my mother, uncle and aunt, they "disappeared" while my grandmother was dying. But my cousin and I shared the responsibility, so I'm not whining.
But I'm burying the lead: I'm in socialist paradise Denmark, where the whole economic aspect of this is non-existent and care is provided as a given to all vulnerable people. I had paid leave while my grandmother was dying when I eventually returned to Denmark, my sisters had paid leave while my stepmom and dad where dying. (It's not that simple, but in comparison with the US it is). I can't tell you how often I have thought about how terrible it must be for Americans to be in the same situation as I have been for near twenty years, with no real governmental support in your country.
Even in a country with universal healthcare and good facilities for vulnerable citizens, the support and engagement of relatives is crucial. It's not that the hospitals and nursing homes don't take care of the people without relatives, they just give them a lower priority.
I have children, and they have seen by example that one cares for the vulnerable in our family. They were there the night my gran died, and it was a warm night as well as very sad. They visited my dad at the hospice, hours before he died. They know death is part of life, in a way my generation never learnt. I don't love my mother, but I care for her. I hope my kids have learned from this, and I know our relation is better than the one I have with my mother. But one never knows.
posted by mumimor at 1:38 PM on August 27, 2021 [10 favorites]
I've been pondering if and how I should participate in this thread, as this is all pretty fresh for me. I was the "care manager" for my elderly, terminally ill mother, and whoever up thread said that it's a profession is right. Caretaking, whether it is for children or the elderly, is hard fucking work. There is a heavily gendered component to all of this. Women, very generally speaking, outlive their male spouses. Elderly men often get to stay at home with their wife/girlfriend taking care of them, and the wife/girlfriend often does not have the supports she needs to support him. And then there are daughters, daughters-in-law, and nieces who step in. I don't think the elderly are like children, but there certainly are commonalities between eldercare and childcare, and the biggest one I see is that most men leave it to women to figure it out, on a shoestring budget -- whether at the family level or the society level.
While my mother was dying, my parents-in-law updated their wills, living wills, POA, advanced directives etc etc etc and my mother-in-law presented it to us with the attitude that she had really worked this all out, she was a Responsible Older Person, and there would be no questions as to what to do. I was having a hard time with my mother's care and I think my MIL thought that she was showing us they wouldn't be as 'difficult' as my mother had been. But here's the thing -- my mother had all the paperwork, had had it in place for many years. Knowing and communicating to your family that you don't want to be resuscitated if your heart stops is NOT THE SAME THING as preparing for the slow decline that marks most people's later years. People think about the dramatics of catastrophic health events and hospital stays, and not so much about the just not being able to move around as well as you did when you were 60.
So I had to say to my in-laws, well, you say you want to stay in your home, what are you doing to make that a possibility? There's not enough space in bathroom for an adult to comfortably help a child on the toilet, how do you think that's going to work for you? What about the steps? Who's going to cook, shop, etc? Do you know how much home health aides actually cost?
And then they reminded me they have long term care insurance. "The good kind." Well, my mother had probably the best long term care insurance that this country has ever seen, and insurance denied her claim when she was mostly bedbound and dying of cancer.
We (meaning my husband and I) spent nearly $50,000 on the last four months of my mother's care AT HER HOME. That was for about 19 hours/day. Her friends filled in the other hours (I live 3 hours away). At one point my husband said to a friend of my mother's that maybe we needed to transfer her to a nursing home, and the friend was anti-nursing home and said, "But the nursing home in town is $5k per month!!!!!" But we were paying more than double that to follow my mom's wish and keep her in her home for her last few months of life.
So all y'all who plan to live at home on your own until the end, is that really a plan if you don't have the funds to pay for caregivers? And haven't changed your house to accommodate the needs?
Oh - and the elderly euthanasia thing - no offense to those who aired those thoughts in this thread, but my eyes roll right out of my head when people say that now. My mother was one of those people. She even went through the whole Death With Dignity rigamarole in our state. She couldn't bring herself to do it, even if she seemed to the doctors that she was really understood and was committed to the idea of it. Toward the end the hospice nurses shared with me that they weren't surprised that she wasn't one of those people who could do it. They said that most people can't do it, that those who can are a very particular type of personality and outlook and it doesn't seem to have much to do with how "comfortable" with the idea of death you were before getting closer to it.
I told my husband, after all of this, that I want to move to an assisted living facility near family. None of this idealized 'dying at home in your own bed' nonsense. (Because it's not your own bed anyway, there comes a point where the caregivers have to bring in a hospital bed to take care of you.) Right now an ALC sounds awesome to me -- professionals can manage schedules, rides, etc etc, call in the medical care when I need it, and I can hang out with my other elderly peers and drink coffee and play games and gossip.
I am so glad I had the emotional fortitude to help my mother the way I did, but nothing about it was easy in spite of her advanced preparations.
posted by stowaway at 2:30 PM on August 27, 2021 [16 favorites]
While my mother was dying, my parents-in-law updated their wills, living wills, POA, advanced directives etc etc etc and my mother-in-law presented it to us with the attitude that she had really worked this all out, she was a Responsible Older Person, and there would be no questions as to what to do. I was having a hard time with my mother's care and I think my MIL thought that she was showing us they wouldn't be as 'difficult' as my mother had been. But here's the thing -- my mother had all the paperwork, had had it in place for many years. Knowing and communicating to your family that you don't want to be resuscitated if your heart stops is NOT THE SAME THING as preparing for the slow decline that marks most people's later years. People think about the dramatics of catastrophic health events and hospital stays, and not so much about the just not being able to move around as well as you did when you were 60.
So I had to say to my in-laws, well, you say you want to stay in your home, what are you doing to make that a possibility? There's not enough space in bathroom for an adult to comfortably help a child on the toilet, how do you think that's going to work for you? What about the steps? Who's going to cook, shop, etc? Do you know how much home health aides actually cost?
And then they reminded me they have long term care insurance. "The good kind." Well, my mother had probably the best long term care insurance that this country has ever seen, and insurance denied her claim when she was mostly bedbound and dying of cancer.
We (meaning my husband and I) spent nearly $50,000 on the last four months of my mother's care AT HER HOME. That was for about 19 hours/day. Her friends filled in the other hours (I live 3 hours away). At one point my husband said to a friend of my mother's that maybe we needed to transfer her to a nursing home, and the friend was anti-nursing home and said, "But the nursing home in town is $5k per month!!!!!" But we were paying more than double that to follow my mom's wish and keep her in her home for her last few months of life.
So all y'all who plan to live at home on your own until the end, is that really a plan if you don't have the funds to pay for caregivers? And haven't changed your house to accommodate the needs?
Oh - and the elderly euthanasia thing - no offense to those who aired those thoughts in this thread, but my eyes roll right out of my head when people say that now. My mother was one of those people. She even went through the whole Death With Dignity rigamarole in our state. She couldn't bring herself to do it, even if she seemed to the doctors that she was really understood and was committed to the idea of it. Toward the end the hospice nurses shared with me that they weren't surprised that she wasn't one of those people who could do it. They said that most people can't do it, that those who can are a very particular type of personality and outlook and it doesn't seem to have much to do with how "comfortable" with the idea of death you were before getting closer to it.
I told my husband, after all of this, that I want to move to an assisted living facility near family. None of this idealized 'dying at home in your own bed' nonsense. (Because it's not your own bed anyway, there comes a point where the caregivers have to bring in a hospital bed to take care of you.) Right now an ALC sounds awesome to me -- professionals can manage schedules, rides, etc etc, call in the medical care when I need it, and I can hang out with my other elderly peers and drink coffee and play games and gossip.
I am so glad I had the emotional fortitude to help my mother the way I did, but nothing about it was easy in spite of her advanced preparations.
posted by stowaway at 2:30 PM on August 27, 2021 [16 favorites]
At one point my husband said to a friend of my mother's that maybe we needed to transfer her to a nursing home, and the friend was anti-nursing home and said, "But the nursing home in town is $5k per month!!!!!" But we were paying more than double that to follow my mom's wish and keep her in her home for her last few months of life.
Yeah, this is sounding like my dad's situation. I despise nursing homes, but after awhile normal human beings living by themselves are not a bunch of medical professionals who are able to give constant (albeit possibly dubious) care.
posted by jenfullmoon at 5:57 PM on August 27, 2021 [2 favorites]
Yeah, this is sounding like my dad's situation. I despise nursing homes, but after awhile normal human beings living by themselves are not a bunch of medical professionals who are able to give constant (albeit possibly dubious) care.
posted by jenfullmoon at 5:57 PM on August 27, 2021 [2 favorites]
people who talk like this about the disabled, secure in the knowledge that it's socially acceptable to do so as long as the disabled are also old, are frequently the same people who do a lot of macho posturing about going out on their own terms but don't actually do it. Even people thoroughly depressed and terrified about old age rarely do it, because about the time you realize it's time is usually right after you lose the mental or physical capacity to follow through without help. and after that, someone is usually watching who won't let you.
so good luck wandering off into those "seriously cold winters" if someone like you is around to scold you for presuming to go outside on your own two feet without a permission slip, like a grown-up who has a right to.
I really can't tell you how odd it is to read the demand that old people cooperate in their care, followed by the declaration that you, being exceptional, reserve the right not to cooperate, to refuse care, to opt out on your own terms. that's what all difficult old people think they're doing, that's what the people you describe with such vivid resentment think they're doing. Everybody thinks avoiding dependence and maintaining freedom is good for them, and accepting dependence and following directions is good for other people.
I didn't expect to wake up this morning and learn that "if you require uncompensated assistance from others, those people get to have a say in how they provide that assistance" was a hot take. Seems I was wrong.
The selective reading gets pretty irritating, though, when you seem to wilfully ignore the whys of how I came to the decisions you so roundly belittle.
I, like millions of others round the world, have no one to care for me.
My parents are dead.
I have no siblings.
I have no partner.
I have no children.
I have been estranged from my father's family since his death nearly 20 years ago.
My mother's family is dysfunctional and the only relatives I have a significant relationship with were born the same year as me.
Even if I had support networks I now live far from any of them.
So thoroughly am I a one-person show that I actually needed to draw up a will, something the vast majority of people in my country don't bother with because estate distribution is legally directed. But every entity the state mandates as a recipient of a deceased person's estate is, in my case, dead or nonexistent. So it will either please or disappoint you to know that there will not be 'someone like me around to scold me for presuming to go outside on my own two feet without a permission slip'.
The simple fact I had to face and accept, years ago, was that I've got nobody but me. I cannot expect to form any relationships of the sort which would result in someone choosing to care for me of their own free will. That requires giving sober, serious thought to what's going to happen if some life-altering calamity strikes. Even if I wanted to put someone through what my mother put me through, what her sister is putting her children through, there would be nobody to do it. The options which remain to me are limited. Maybe I'll get lucky, and go the way my father did. There's no guarantee, though, so recognising that an elective end may be the best choice available is a necessary component for my life planning.
But by all means, tell me again how stupid and hypocritical and deluded I am, how seeing these things differently from the way you do is simply 'macho posturing'. I won't be reading it, as I'm done with this thread.
posted by myotahapea at 12:30 AM on August 28, 2021 [8 favorites]
so good luck wandering off into those "seriously cold winters" if someone like you is around to scold you for presuming to go outside on your own two feet without a permission slip, like a grown-up who has a right to.
I really can't tell you how odd it is to read the demand that old people cooperate in their care, followed by the declaration that you, being exceptional, reserve the right not to cooperate, to refuse care, to opt out on your own terms. that's what all difficult old people think they're doing, that's what the people you describe with such vivid resentment think they're doing. Everybody thinks avoiding dependence and maintaining freedom is good for them, and accepting dependence and following directions is good for other people.
I didn't expect to wake up this morning and learn that "if you require uncompensated assistance from others, those people get to have a say in how they provide that assistance" was a hot take. Seems I was wrong.
The selective reading gets pretty irritating, though, when you seem to wilfully ignore the whys of how I came to the decisions you so roundly belittle.
I, like millions of others round the world, have no one to care for me.
My parents are dead.
I have no siblings.
I have no partner.
I have no children.
I have been estranged from my father's family since his death nearly 20 years ago.
My mother's family is dysfunctional and the only relatives I have a significant relationship with were born the same year as me.
Even if I had support networks I now live far from any of them.
So thoroughly am I a one-person show that I actually needed to draw up a will, something the vast majority of people in my country don't bother with because estate distribution is legally directed. But every entity the state mandates as a recipient of a deceased person's estate is, in my case, dead or nonexistent. So it will either please or disappoint you to know that there will not be 'someone like me around to scold me for presuming to go outside on my own two feet without a permission slip'.
The simple fact I had to face and accept, years ago, was that I've got nobody but me. I cannot expect to form any relationships of the sort which would result in someone choosing to care for me of their own free will. That requires giving sober, serious thought to what's going to happen if some life-altering calamity strikes. Even if I wanted to put someone through what my mother put me through, what her sister is putting her children through, there would be nobody to do it. The options which remain to me are limited. Maybe I'll get lucky, and go the way my father did. There's no guarantee, though, so recognising that an elective end may be the best choice available is a necessary component for my life planning.
But by all means, tell me again how stupid and hypocritical and deluded I am, how seeing these things differently from the way you do is simply 'macho posturing'. I won't be reading it, as I'm done with this thread.
posted by myotahapea at 12:30 AM on August 28, 2021 [8 favorites]
myotahapea, I for one found your posts very instructive and helpful, if sad and sobering, instructive because your situation is so very different from my own and profoundly helpful in giving me a sense of my own immediate privileges (I have a wife and children who love me as I love them) . Thank you. I wish you the very best for the future.
posted by dutchrick at 1:12 AM on August 28, 2021 [2 favorites]
posted by dutchrick at 1:12 AM on August 28, 2021 [2 favorites]
There are, in addition to those who have family who might need care, many people (especially women) who are facing aging after a lift time of providing care to their own children, who also needed constant care. This is one of the things that is playing out in Ireland, and it heartbreaking to watch people see if they and their child can go to the same place, so they can at least keep an eye on their care. For this and other reasons you have people in care homes for older people who really should be somewhere better for their needs and wants.
Anyway, that is a very particular nightmare that rarely gets figured in, which has a lot to do with how we as societies often really don't provide much long term care well at all.
posted by lesbiassparrow at 6:35 AM on August 28, 2021 [3 favorites]
Anyway, that is a very particular nightmare that rarely gets figured in, which has a lot to do with how we as societies often really don't provide much long term care well at all.
posted by lesbiassparrow at 6:35 AM on August 28, 2021 [3 favorites]
None of this idealized 'dying at home in your own bed' nonsense. (Because it's not your own bed anyway, there comes a point where the caregivers have to bring in a hospital bed to take care of you.)
The rest of your comment is very familiar to me, but dying in a hospital is the one thing my mother asked me to save her from and it was the one thing I was able to do for her, among a host of other horrible things that nobody can save anybody from. They do not invariably have to bring in a hospital bed for you, depending on the manner and rapidity of your death (for my father they did, and so he did not die in his own bed, but he died in his own bedroom next to his wife. Knowing that she had done that for him, all alone, and gone on living in the same house for another 30 years, I owed it to her to try to arrange the same for her, because she wanted it very badly.)
So she did die in her own bed, and I don't think it means anything in the final minutes but it means more than you might imagine in the final months. People in decline who have been going to the hospital non-stop for a year, or years, know what they are afraid of, they have probably been inadvertently witness to at least one hospital death, and I don't think they are unreasonable in the least.
it is also nice to have a (comparatively) small promise to your parent that you can keep, when so many promises you might like to make are not possible for anyone to keep. There comes a point, not for all but for many, when they can't live where they want. but for most, they can die where they want if somebody will fight for it. Part of the difficulty is getting other family members and medical aides to understand that the person is going to die anyway, and that it is better they die a week or two sooner in relative comfort where they are a person than have their lives stretched out a week or two more in public, in a place they hate with people they don't know.
money is, yes, an enormous pre-requisite for having the power to get this done. though I look forward to avoiding a huge number of complications that await my elders through the simple expedient of not having a house. no need to downsize if you never had bigger than a rented 1-bedroom!
anyway not everybody cares equally about the location of their last days, or is able to sublimate what they do care about into a single strong symbol that way. but I found it a great consolation to, as I say, have one practical want that I could fulfill for my mother through horrible effort and struggle. there isn't always much of anything else you can influence.
posted by queenofbithynia at 8:42 AM on August 28, 2021 [7 favorites]
The rest of your comment is very familiar to me, but dying in a hospital is the one thing my mother asked me to save her from and it was the one thing I was able to do for her, among a host of other horrible things that nobody can save anybody from. They do not invariably have to bring in a hospital bed for you, depending on the manner and rapidity of your death (for my father they did, and so he did not die in his own bed, but he died in his own bedroom next to his wife. Knowing that she had done that for him, all alone, and gone on living in the same house for another 30 years, I owed it to her to try to arrange the same for her, because she wanted it very badly.)
So she did die in her own bed, and I don't think it means anything in the final minutes but it means more than you might imagine in the final months. People in decline who have been going to the hospital non-stop for a year, or years, know what they are afraid of, they have probably been inadvertently witness to at least one hospital death, and I don't think they are unreasonable in the least.
it is also nice to have a (comparatively) small promise to your parent that you can keep, when so many promises you might like to make are not possible for anyone to keep. There comes a point, not for all but for many, when they can't live where they want. but for most, they can die where they want if somebody will fight for it. Part of the difficulty is getting other family members and medical aides to understand that the person is going to die anyway, and that it is better they die a week or two sooner in relative comfort where they are a person than have their lives stretched out a week or two more in public, in a place they hate with people they don't know.
money is, yes, an enormous pre-requisite for having the power to get this done. though I look forward to avoiding a huge number of complications that await my elders through the simple expedient of not having a house. no need to downsize if you never had bigger than a rented 1-bedroom!
anyway not everybody cares equally about the location of their last days, or is able to sublimate what they do care about into a single strong symbol that way. but I found it a great consolation to, as I say, have one practical want that I could fulfill for my mother through horrible effort and struggle. there isn't always much of anything else you can influence.
posted by queenofbithynia at 8:42 AM on August 28, 2021 [7 favorites]
My heart goes out to all who posted in this thread who are having to work through such difficult things. I know this well. My father had congestive heart failure and he was one of the anomalous people with congestive heart failure who was until the end pretty active. Two weeks before he died I arrived at his house to find dragging fallen branches from the back yard to the curb. He died in his sleep, in the house he lived in for 50 years without ever becoming a real burden to anyone. This was a blessing and I wish this blessing for you, me and everyone I love.
posted by bluesky43 at 8:49 AM on August 28, 2021 [9 favorites]
posted by bluesky43 at 8:49 AM on August 28, 2021 [9 favorites]
there is also the problem that a number of assisted living communities have limits on whether residents can have pets, and if they can, how many & how large. my mother made a number of tedious jokes about how three 10 lb cats ought to be even more acceptable than one 50 lb dog, but the fact was, the most appealing places that allowed the most independent living would have made her dispose of her dependents to access their privileges, and she was not a person who would ever do such a thing. which is one reason I was willing to assist in her last days, even with her intensely aggravating faults, having once been one of her dependents myself. so virtue is sometimes rewarded, even when virtuous people are also incredibly difficult.
which is also to say, one of the greatest things you can do for an older person you know, parent or not, even if you haven't got the money to do much else for them, is to promise on all that is holy that you will find homes for their pets if their pets outlive them, and not allow them to be abandoned at a shelter or put to death for the sake of convenience. you have to mean it and you have to make them believe it. but once again it's a huge thing because it's a promise that can actually be kept.
After my mom was over 60, she only ever adopted elderly or sickly or just mean cats through some 'senior to senior' special no-fee pet adoption program. I encouraged this heavily because I thought it was good for her, and it had scared me to hear her talk about never having cats again because she couldn't be sure of outliving them -- she thought it would be immoral to take on a responsibility she might die without fully discharging, but she was depressed without animal company. so I told her to go ahead and adopt, I'd never let anything happen to her cats, in the full cynical assurance that these sickly beasts, unadoptable to any but the most soft-hearted, would all predecease her.
but they didn't. oops.
but not oops after all, because they were with her to the end and certainly loved her more than the visiting nurses did (and no wonder; no blame to the nurses.)
but I was able to keep my promise thanks to the amazing saintly selflessness of a couple of other people. It should have been a lot harder but I got lucky.
posted by queenofbithynia at 9:45 AM on August 28, 2021 [12 favorites]
which is also to say, one of the greatest things you can do for an older person you know, parent or not, even if you haven't got the money to do much else for them, is to promise on all that is holy that you will find homes for their pets if their pets outlive them, and not allow them to be abandoned at a shelter or put to death for the sake of convenience. you have to mean it and you have to make them believe it. but once again it's a huge thing because it's a promise that can actually be kept.
After my mom was over 60, she only ever adopted elderly or sickly or just mean cats through some 'senior to senior' special no-fee pet adoption program. I encouraged this heavily because I thought it was good for her, and it had scared me to hear her talk about never having cats again because she couldn't be sure of outliving them -- she thought it would be immoral to take on a responsibility she might die without fully discharging, but she was depressed without animal company. so I told her to go ahead and adopt, I'd never let anything happen to her cats, in the full cynical assurance that these sickly beasts, unadoptable to any but the most soft-hearted, would all predecease her.
but they didn't. oops.
but not oops after all, because they were with her to the end and certainly loved her more than the visiting nurses did (and no wonder; no blame to the nurses.)
but I was able to keep my promise thanks to the amazing saintly selflessness of a couple of other people. It should have been a lot harder but I got lucky.
posted by queenofbithynia at 9:45 AM on August 28, 2021 [12 favorites]
"Toward the end the hospice nurses shared with me that they weren't surprised that she wasn't one of those people who could do it. They said that most people can't do it, that those who can are a very particular type of personality and outlook and it doesn't seem to have much to do with how "comfortable" with the idea of death you were before getting closer to it."
stowaway, or anyone really - any idea what type of personality and outlook would make it more likely for someone to follow through with ending their life before things got "too bad"?
posted by wannabecounselor at 5:51 AM on August 30, 2021 [1 favorite]
stowaway, or anyone really - any idea what type of personality and outlook would make it more likely for someone to follow through with ending their life before things got "too bad"?
posted by wannabecounselor at 5:51 AM on August 30, 2021 [1 favorite]
I would guess a Spock-like mentality able to coldly calculate the payoff of living longer vs. the costs.
posted by Heywood Mogroot III at 11:58 PM on September 1, 2021 [1 favorite]
posted by Heywood Mogroot III at 11:58 PM on September 1, 2021 [1 favorite]
O hai, soul-crushing article! I've been doing this for about six weeks now. I should have been barraging Ask with questions, and I will do so soon. This began with a discrete crisis, but that has exposed that my folks really are not making it on their own any more. Don't know what I'll do when FMLA runs out. (This was my first surprise - I had thought it was some extra leave I can get; no, it is just a way to use up all your sick and vacation leave without getting fired).
I've had a relatively gentle introduction. Both my people are able to dress, wash (more or less) and use the bathroom (mostly). My person who is worst-off with dementia (damage from strokes) and mobility problems can be engaged with - I can have a conversation and (eventually) reason with him. He's cooperative and the typical irritability/rage episodes of dementia have been manageable. But for how long? There really aren't any guarantees after age 80, and six months is a long time, at that age.
posted by thelonius at 6:29 AM on September 2, 2021 [5 favorites]
I've had a relatively gentle introduction. Both my people are able to dress, wash (more or less) and use the bathroom (mostly). My person who is worst-off with dementia (damage from strokes) and mobility problems can be engaged with - I can have a conversation and (eventually) reason with him. He's cooperative and the typical irritability/rage episodes of dementia have been manageable. But for how long? There really aren't any guarantees after age 80, and six months is a long time, at that age.
posted by thelonius at 6:29 AM on September 2, 2021 [5 favorites]
Yeah extreme old age is pretty brutal. The people who carry on more or less as themselves, just more frail, and die when they are 90, are the real lottery winners in life. I just spent half an hour trying to explain to a man who was a professor of mathematics, one of the most intelligent people I have ever known, that his doctor wants to change his meds due to blood work. And I'm not sure he has quite got it.
posted by thelonius at 5:29 PM on September 2, 2021
posted by thelonius at 5:29 PM on September 2, 2021
The people who carry on more or less as themselves, just more frail, and die when they are 90, are the real lottery winners in life.
Blessedly - maybe - both my grandfathers lived long, and were fairly independent in their final years. My maternal grandfather did have to move into a care facility, but was still lucid at 93; ideas came to him a bit slower than before, but they got there. (He was an MIT-trained metalurgist so he was no slouch brainwise.) My paternal grandfather did get a little fuzzy - the very last time we spoke was on the phone, and I could tell he didn't quite remember who I was, but my father was caring for him and told me that daily he asked him "how with-it are you" kinds of questions and Grandpa always remembered me in that context.
Grandpa also stayed at home out of sheer cussedness - and fortunately we lived close enough that Dad could go check in on him every day on his lunch break, and enlisted a cousin to also stop in for morning. In fact, Grandpa died while he was sitting at the kitchen table one morning waiting for the cousin to bring him breakfast; he would head down to his kitchen in the morning and sometimes doze off in the chair while he waited for her, and one morning when she came over and called out a hello he didn't wake up like he usually did.
So the odds are good for me genetically. I just hope I don't end up as an exception to the rule.
posted by EmpressCallipygos at 7:35 AM on September 3, 2021 [1 favorite]
Blessedly - maybe - both my grandfathers lived long, and were fairly independent in their final years. My maternal grandfather did have to move into a care facility, but was still lucid at 93; ideas came to him a bit slower than before, but they got there. (He was an MIT-trained metalurgist so he was no slouch brainwise.) My paternal grandfather did get a little fuzzy - the very last time we spoke was on the phone, and I could tell he didn't quite remember who I was, but my father was caring for him and told me that daily he asked him "how with-it are you" kinds of questions and Grandpa always remembered me in that context.
Grandpa also stayed at home out of sheer cussedness - and fortunately we lived close enough that Dad could go check in on him every day on his lunch break, and enlisted a cousin to also stop in for morning. In fact, Grandpa died while he was sitting at the kitchen table one morning waiting for the cousin to bring him breakfast; he would head down to his kitchen in the morning and sometimes doze off in the chair while he waited for her, and one morning when she came over and called out a hello he didn't wake up like he usually did.
So the odds are good for me genetically. I just hope I don't end up as an exception to the rule.
posted by EmpressCallipygos at 7:35 AM on September 3, 2021 [1 favorite]
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My elderly parents both passed away in the last five years. This was all I could think of.
posted by mikeand1 at 10:13 AM on August 26, 2021 [25 favorites]