The plight of the elderly in First world countries - (And the ethical implications of commoditizing elder care)

[Aunt Carol]

A Life Worth Ending

TLDR: NYMag article where the writer basically says 'My mom was one of the most resourceful, intelligent, charismatic people I knew, but after a series of medical interventions, she now needs around the clock care and the only things left in her mind are anger and fear because she doesn't understand anything that's going on around her. We take care of her because we love her and it's the right thing to do and we are wealthy enough to do it, but her existence is torture and it would be better if she was dead. So instead of planning for long-term care insurance, I'm going to plan some kind of exit.'

Thoughtful and accurate. The problem seems to be that every family has to discover it for themselves. Happened with one of my grandparents; my parent is the Maui brother and the only medical professional in that family.

Roz Chast wrote/drew a book about her own parents' aging, Can't We Talk about Something More Pleasant? which helped grandma-pill my holdout aunt. Even though pictures always help, it's a bit New Yorker-flavored.


Upthread I speculated that more young people having a stint working in nursing homes would help get an understanding of the current American way of death into the public consciousness.

I wonder if a few popular movies on the subject would help, or a background plot arc in a prime time soap. Seems like the few dementia and decline movies tend to focus on the patient, their spouse, and lots of flashbacks. Adult children having to revisit old family dynamics and make goals-of-care decisions would be a great excuse for an ensemble cast to chew the scenery.

No details given by the writer about what that exit will be. But whatever the answer is, I'm interested too. Can people fly to countries that perform assisted suicide just for that purpose? Can you arrange for that ahead of time or do you absolutely have to do that when you're lucid? Legalizing assisted suicide in North America sounds gruesome, but I'd sign up for that. If this became legal, could you sign up for it ahead of time? Because by the time you need it, you're probably too far gone to understand anything that's going on.

This has come up a few times in the munchie thread, so I'll quote myself:

That's exactly the current problem:

If you have a diagnosis of early dementia, you're not eligible for medical aid in dying because it's early dementia and not end-stage.
If you wait until you have have late dementia, you're no longer compos mentis, and thus cannot receive medical aid in dying.

This would require a lot of legal debate and lobbying to fix, and the people who are dealing with a quiet personal tragedy are not best-equipped to do it. Any time people talk about MAID, they get irate young spoonies and misinformed religious people rallying against it. Better as a politician just not to touch it; it's not like the soon-to-be-dead are a big voting bloc.

 

[JosephStalin]

Some observations from one in his seventh decade of life...

Ya, want to see something horrible, check out any over-55 mobile home park. Place tends to be as quiet as a cemetery. All those people living in their boxes, waiting for death. Not for me.

Something sad - go to a nursing home. Once again, another warehouse for those waiting to die. Not unless I'm a fucking vegetable. Keep in mind many want to stay alive as long as possible, no matter what their condition, because as long as they are alive they keep drawing pensions/Social Security/VA disability benefits - money for their wife/family. These people keep putting their family first.

In our state (Insanity, also known as CA) they did the smart thing of paying family members to care for the elderly. FAR cheaper than any nursing home. Pay's just over $15/hour, get a little sick leave. If you join the union you can get certain benefits through them. You need not be someone's relative to care for someone under this system, either.

Have been pretty fucking lucky. Been able to beat the life-threatening and life-damaging conditions on the operating table. Have avoided becoming an invalid/vegetable/etc. so far. No idea what the future brings, though. I stay optimistic.

 

[fuknhek]

Exit International: This is the organization that designed the 3d printed suicide pods. I've heard of them but I haven't read through all of their material. I think if the author of that NYmag article were planning some kind of 'exit', this is the org he might consult. And I don't know why but the fact that they include an article about the thoughts of a rabbi arguing (basically) for the sanctity of life, that makes the organization seem less ghoulish and gung-ho about death than someone might think.

No idea if they have any kind of lobbying arm to change the legal bind you pointed out, @Aunt Carol.

This is getting a little off topic, since this doesn't address the needs of existing elderly people and the people who care for them. It might help me when I get to the point where I'm facing the early stages of dementia, or I get the news of impending serious illness that I'm certain won't have a good outcome. But who wants to bring this to someone else as an option? Like, hey Nan you're really sick and you probably won't get better, have you considered painless assisted suicide?

@Aunt Carol That comic you linked to seems amazing. Everyone should have this kind of conversation with their older relatives while they're still lucid enough to make decisions for themselves.

 

[T0oCoolFool]

This thread is depressing. I was hoping I could read something positive or at least hopeful. The way modern society views old people and how they handle elder care is goddamn depressing.

I don't want my mom to go to a nursing home, but that's what I fear will happen. And this thread makes me worry even more.

 

[fuknhek]

This thread is depressing. I was hoping I could read something positive or at least hopeful. The way modern society views old people and how they handle elder care is goddamn depressing.

I don't want my mom to go to a nursing home, but that's what I fear will happen. And this thread makes me worry even more.

Aging and death are depressing, I get you. It's bad enough to think about yourself getting old and dying, it's even worse to have to think about someone you love getting old and dying.

I guess the ideal end is to live a long, healthy and cogent life, full of happiness and vigor, until you suddenly die in your sleep or drop dead of an aneurism or something. Not many people end that way. There is usually a slow decline where you need a lot of care.

Why do you hate about the thought of your mom in a nursing home? Is it just because you think they're awful? What do you think would be better?

 

[Iron Jaguar]

They're living too long and sucking up resources. Especially the Boomers.

 

[T0oCoolFool]

Aging and death are depressing, I get you. It's bad enough to think about yourself getting old and dying, it's even worse to have to think about someone you love getting old and dying.

I guess the ideal end is to live a long, healthy and cogent life, full of happiness and vigor, until you suddenly die in your sleep or drop dead of an aneurism or something. Not many people end that way. There is usually a slow decline where you need a lot of care.

Why do you hate about the thought of your mom in a nursing home? Is it just because you think they're awful? What do you think would be better?

I loathe nursing homes. I absolutely despise them. Even the "good" ones are terrible. Elder abuse and neglect is high, and lots of nursing home staff couldn't give less of a damn. Even if you find a "good" nursing home with staff that do their absolute best, it's still terrible because there's never enough staff, and they're burned out and overworked, so your loved ones may end up suffering or dying simply because the nurse on call is running on nothing but fumes due to pulling double shifts.

Nursing homes are depressing as hell. Even if you don't have to worry about neglect, they're simply soulless and boring. And filled with nothing but sad grandmas and grandpas wishing their family would visit. Some family do visit every day, but it's rare, and even then, it's not the same as living in your own home and dealing with your friends and family.

I don't ever want to go to a nursing home. My dad said he will kill himself before going to one willingly. My mom said the same thing. I don't blame them, nursing homes are scary.

 

[Mr. Skeltal]

This thread is depressing. I was hoping I could read something positive or at least hopeful. The way modern society views old people and how they handle elder care is goddamn depressing.

I don't want my mom to go to a nursing home, but that's what I fear will happen. And this thread makes me worry even more.

I'll care for my parents but I refuse to let my children go through what my mother and grandmother went through with my great-grandmother. Dementia is a genuine killer and a horrible condition to "live" with.

I'd rather have a tragic "ice fishing" accident than live with dementia.

I loathe nursing homes. I absolutely despise them. Even the "good" ones are terrible. Elder abuse and neglect is high, and lots of nursing home staff couldn't give less of a damn. Even if you find a "good" nursing home with staff that do their absolute best, it's still terrible because there's never enough staff, and they're burned out and overworked, so your loved ones may end up suffering or dying simply because the nurse on call is running on nothing but fumes due to pulling double shifts.

Nursing homes are depressing as hell. Even if you don't have to worry about neglect, they're simply soulless and boring. And filled with nothing but sad grandmas and grandpas wishing their family would visit. Some family do visit every day, but it's rare, and even then, it's not the same as living in your own home and dealing with your friends and family.

I don't ever want to go to a nursing home. My dad said he will kill himself before going to one willingly. My mom said the same thing. I don't blame them, nursing homes are scary.

Nursing homes are greenrooms for death. I hated having to visit them and would rather die violently like my late brother-in-law than linger on like my poor great-grandmother. Past a certain age I'll probably just write myself a DNR that neither my wife nor children can fuck with.

 

[T0oCoolFool]

I'll care for my parents but I refuse to let my children go through what my mother and grandmother went through with my great-grandmother. Dementia is a genuine killer and a horrible condition to "live" with.

I'd rather have a tragic "ice fishing" accident than live with dementia.


Nursing homes are greenrooms for death. I hated having to visit them and would rather die violently like my late brother-in-law than linger on like my poor great-grandmother. Past a certain age I'll probably just write myself a DNR that neither my wife nor children can fuck with.

I also hated visiting them. One time this old lady in a wheelchair legit grabbed my arm as I walked by and said "Please let me leave here, please" and just kept begging me and anyone else that walked by to let her go back home. It was heart breaking and it haunts me every time I think about it. Thinking of how one day you're a young and vibrant human, next thing you know, you're stuck in a damn nursing home.

I'm with you. I'd rather die a horrible death than slowly rot in a nursing home.

 

[Aunt Carol]

Exit International: This is the organization that designed the 3d printed suicide pods. I've heard of them but I haven't read through all of their material. I think if the author of that NYmag article were planning some kind of 'exit', this is the org he might consult. And I don't know why but the fact that they include an article about the thoughts of a rabbi arguing (basically) for the sanctity of life, that makes the organization seem less ghoulish and gung-ho about death than someone might think.

I looked around their site. It's interesting how carefully their articles and fora are reg-walled:

Entry to the forums is by approval only.​

A one-month wait period may apply to new subscribers & Exit members.​

If you are over 50 years and of sound mind then you are welcome to apply for membership of the Forums through our Registration Page.
For questions you may contact us.​

Remember – you will first need to subscribe to The Peaceful Pill eHandbook.​

Photo ID is required.​

Not bulletproof, but they sure don't want any teens and troons fucking up a sincere mutual-aid network.

This is getting a little off topic, since this doesn't address the needs of existing elderly people and the people who care for them. It might help me when I get to the point where I'm facing the early stages of dementia, or I get the news of impending serious illness that I'm certain won't have a good outcome. But who wants to bring this to someone else as an option? Like, hey Nan you're really sick and you probably won't get better, have you considered painless assisted suicide?

@Aunt Carol That comic you linked to seems amazing. Everyone should have this kind of conversation with their older relatives while they're still lucid enough to make decisions for themselves.

Another interesting rabbit hole is VSED, voluntarily stopping eating and drinking. Maybe it's a kind of suicide-light, or maybe it's a conscious version of when a very demented person just becomes uninterested in eating and slowly drifts away. Young munchies have started invoking the name, but it seems like it's something people 80+ are just naturally better at.

You're right that active euthanasia is a hard thing to pitch another person, and that's probably part of why legal change is difficult. Imagine being the caregiver for a severely demented relative and publicly advocating for euthanizing your Pop-pop; the backlash would blow past the Schiavo scale.

The way things are now, and are likely to be for a while, the dialogue is more about goals of care in the context of an existing illness. In long term care there are people with "no antibiotics" on their care plan, waiting for pneumonia or a pressure injury. In acute care hospitals, the timeline for death and for decisions is shorter, which has good and bad aspects. There are still people who were out gardening in the morning, had a stroke at lunch, never regain consciousness and are gone by the next week. However, if the next of kin chokes in the clutch, once that percutaneous feeding tube is in, it's legally and ethically hard to stop the train.

When an older person can speak for themself, they usually talk about what they saw happen to their parents (and sometimes their partner or siblings) and tend not to choose aggressive care when it's projected to be futile. (Semi-related link: How Doctors Die )

When an older person is already not mentally intact--or worse, when this is a sudden change from complete independence--that's when it gets difficult. Sometimes they're not demented but they have that cognitive impairment where it's easy for the kids to tell them what to do, and the kids didn't watch Dad die because Mom was there to hide the hard parts, but now it's Mom's turn. Sometimes the patient and their close relatives have come to the same sad decision--and then an absent sibling flies in from out of town, activates all the old family guilt buttons, makes sure Mom is going to have a long and painful death, and flies back to California again.

You can never say it out loud, but it's a lot like when you have to make the euthanasia decision for a pet. How much pain can you justify for a feeling being who can't understand the future?

A few years ago, my cat was diagnosed with an advanced lymphoma. We later joked that if I'd decided to go with kitty chemo and massive abdominal surgery for the poor cat, that'd mean my mother taking my name off her advance directive.

 

[Secret Messages]

If I’m in shape enough to leave the care home I’m getting out. If I’m incapable of climbing out the window just put a bullet in my head so I don’t waste away my children’s inheritance paying top dollar to exist glassy-eyed, eating slop and getting my diaper changed. I have a family history of dementia and if I’m diagnosed, after my affairs are sorted the non-emergency line will find me OD’d on painkillers in my bathtub with a Do Not Resuscitate.

 

[Manul Otocolobus]

That writer made the same mistake my father's side of the family did with my grandmother, which was the same damn mistake that my mother's side of the family repeated for my grandfather.

On my father's side, my grandmother was 91 years old. She had suddenly developed a heart valve issue that would surely, eventually, kill her. Unless... they did surgery. My father, as well as my aunts and uncles all said "Ok, so do it!" and I was alone in saying "This is a terrible idea. Let her die. She deserves to have a nice, quick end after 90+ years. I love grandma as much as everyone else, but she deserves dignity. Don't do anything. At her age there is a fairly high chance that she will see a substantial neurological deterioration following a caridac procedure involving prolonged anesthesia" For as much notice as my father, as well as my aunts and uncles gave me, I might as well have let out a fart. She had the procedure, and the outcome was as I predicted, a persistent dementoid state. My father would be standing there and she would ask when he was going to visit, and address my father as his father, who had been dead for more than 30 years. She would have hysterical screaming episodes in the middle of the night. This went on for two years until she finally died of a heart attack. It was a very, very long two years for me, my father, and the rest of the family.

On my mother's side, my grandfather was 82 years old. It started with him developing a major deterioration in his sight. Then an increasing constellation of minor symptoms. Until suddenly one day he didn't know where he was (he was at home, the same place he'd lived for more than 20 years), who anyone was (including my grandmother), and what was going on. Once we got to the hospital it was clear he's had some kind of stroke. The various specialists advocated for various intervention, as well as a transfer to a nursing home. Once again I advocated for doing absolutely nothing, taking him home, and letting him die. He had said, on multiple occasions that if anything happened to him to take him home and let him die, and if we didn't, he would find a way to come back and "haunt your miserable asses for all time". Of course, once again, being the grandchild, my opinion was invalid. Fortunately, my mother held the same opinion I did. Unfortunately that was at odds with what my grandmother and my uncles wanted. So, they patched him up as best they could, which meant he was in a persistent state of sorta being there but not really, and living in a nursing home. 9 months go by and he had a heart attack in the middle of the night. Rinse and repeat of the last visit to the hospital, with yet another piece of his mind slipping away. Once again, I advocate for letting the poor man die with dignity, and once again, I might as well have been picking my nose for as much attention as it got. Yet another stroke 6 months later. Rinse and repeat once again at the hospital. Exact same scenario, exact same outcome. A little less than two and a half years later he has a massive stroke that there is no recovery from and dies. Again, a very, very long two years for all involved.

The only benefit of going through this is that my mother said I am to take her out at all costs if there is absolutely any chance of her experiencing a similar outcome. I am quite relieved by this. I have made sure my siblings and my good friends know the same is true for me. My father, as a catholic, wants the full court press. I told my brother than he can handle that since I'm responsible for Mom.

 

[Aunt Carol]

Of course, once again, being the grandchild, my opinion was invalid.

I'm so sorry to hear this story keep playing out, and there you were as Cassandra.

The only benefit of going through this is that my mother said I am to take her out at all costs if there is absolutely any chance of her experiencing a similar outcome. I am quite relieved by this. I have made sure my siblings and my good friends know the same is true for me.

Question about the family members who voted for the medical torture: have they learned anything? Have they said anything about their end-of-life plans? Cognitive dissonance would probably prevent anything now, but in a few years or with a diagnosis, I'd hope they would say "jeez, I saw what happened with Dad/Mom, here's what I want."

It seems to keep playing out, family by family, the first one in a generation to have a lingering death is the painful example for everyone in some kind of radius of distance, genetic relation and age.

 

[Manul Otocolobus]

I'm so sorry to hear this story keep playing out, and there you were as Cassandra.

Thank you.

Question about the family members who voted for the medical torture: have they learned anything? Have they said anything about their end-of-life plans? Cognitive dissonance would probably prevent anything now, but in a few years or with a diagnosis, I'd hope they would say "jeez, I saw what happened with Dad/Mom, here's what I want."

It seems to keep playing out, family by family, the first one in a generation to have a lingering death is the painful example for everyone in some kind of radius of distance, genetic relation and age.

Yes, my one uncle on my mother's side had a revelation a few years later that he did the wrong thing. He acknowledged that he let his own issues with my grandfather cloud his judgement, and wouldn't want the same for himself. He actually apologized to my mother and me, which was cathartic.

 

[Bunny Tracks]

One of my best friends has worked in a nursing home for several years, and the thing that stuck out to me from his stories is that it's rarely the residents that are the biggest problem.

It's actually the staff.

From what I've gathered, the staff at his place seems to be little more than a clique of Nurse Ratchets, and broken-down jocks with little to no prospects.

Petty arguments break out all the time, and things get stolen constantly. Residents get dumped into activities they don't want to do, or just left in their rooms because the staff doesn't want to deal with them. Hell, sometimes they just get left in hallways.

If you're like my friend, and actually try to do fix this, you get written up because the person that did this is friends with upper management and because a lot of the residents don't actually remember what happened.

No one checks the cameras either, because only management can do that, so usually it's their word against theirs with a third-party who can't even remember what really happened.

 

[Aunt Carol]

Residents get dumped into activities they don't want to do, or just left in their rooms because the staff doesn't want to deal with them.

Depending on the facility, the Activities department doesn't help the matter.

They get judged on butts in seats, or attendance at activities, so I knew them as being ruthless at recruiting people to come play bingo, or to sit and molder in the same room as bingo and have it count as a social activity. Residents with no volition were like free points to them. I had an Activities Directer come and sneer at us and ask if there was a reason Mrs. Smith can't come to the movie. Well, because she was changed, full-lifted into the wheelchair, fed lunch and then you had a minion sneak in and wheel her her to music already. You have a quota, but tell that to the skin on her butt that's still up in the chair.

The same SNF decided to start a token economy to get residents to activities. There was a one-woman beauty shop at the facility who came in a few days a week, and it was a big flex for the residents to have the money to go there. Private pay residents, no problem; other residents just got their hair washed with their regular bath from the aides. So there would be lucid residents shuffling off to every activity they could, to earn tokens toward a free beauty shop visit.

I remember one old lady confessing to me that she absolutely hated bingo, but you got two tokens plus you could win more with a bingo, and she was trying to save up for a perm.

 

[Bonesjones]

No, I feel you. I live in NYC for a reason, as far away from California as I can be while still in the USA.

Lol if you actually believe that

 

[Mayhem]

I can powerlevel a lot here, as I have been a caregiver for more than a decade — secondary for a while, and primary for the last two years.

My health is totally shot. I’m on anxiety meds, thyroid meds, and I’ve got weight that I cannot lose, no matter how little I eat. I went into menopause ten years early, so I will likely never have a child of my own. I don’t sleep well. My back and body ache every day. I cry at work and in my car regularly. Every intimate relationship I’ve been in for the past ten years has failed.

The person I care for, my mother, had a massive heart attack a decade ago due to smoking, raging diabetes, and extremely high blood pressure. She was lucky to have survived. I am grateful she did, but ten years later, I honestly would be relieved if she died in her sleep or overdosed on pills. Her mind is still fine, but she is miserable and really doesn’t want to live anymore. However, she’s not in hospice care, doesn’t have an expiration date. She could be dead by the end of this year, or still kicking in five years. I have no idea and neither do her doctors.

The stress on caregivers is immense, and caregivers are majority female. A third of us Americans here on KF are currently caring for an elderly relative or a sick spouse or child. There comes a point with many of us where we just cannot take care of our elderly any more: they become incontinent, angry, depressed, abusive. Dementia takes its toll. Most caregivers don’t want to put their family in a care home, but they live so fucking long and there is very little help for us. We have to work and care for our own families, too, or else we’ll end up alone, with no one to love us or care for us, and even less lucky than the people we cared for.

As someone stated earlier, Medicare will pay for part of the care, when it is mandated on doctors’ orders. Getting those orders is an adventure in and of itself. When our elderly need more care than a simple hour or so per day, that is when the money dries up. Very few have the money for extended long-term care in a facility, and the nice facilities can be five figures a month. There are also laws in many states that allow strangers to seize the assets of the elderly ”for care,” which means that the court-appointed stranger can sell everything the person owns and throw them into a cheap nursing facility, then pocket the rest of the money, even if they have a will and named their heirs. It’s state-sanctioned thievery.

Honestly, my mother did a month in a care facility and was…happy. She did better there than at home because she had people to talk to and things to do, like physical therapy. But she doesn’t want to go back. She’s determined to die at home, and in the meantime, is making me fucking miserable and destroying our relationship. Having to clean up your parent’s shit, wipe their ass, bathe them, feed them, and put up with their psychological and physical abuse will make you hate them.

I would never intentionally harm my mother. But I can’t say that I’ll be all that sad when she’s gone. And I think most caregivers would say the same. Her doctor’s office is full of elderly people, in wheelchairs and in walkers, on oxygen, being accompanied by their exhausted children, who are also old before their time. People can live a very long time now with serious illness, but I don’t think it’s a good thing.

 

[Jarch6]

I would never stick my parents or grandparents in some home, and I would sooner go into the countryside and die before being interred in one. However, if your parents were the sort who actually kicked you out of the house at eighteen to fend for yourself because they bought into some "pull yourself up by your bootstraps!" meme, I can understand why you'd do the same to them at the end of their life. Furthermore, what an ignoble end. Rather than dying surrounded by family or friends, as an elder would in the past, so many of these people are subjected to a prolonged hospice drugged to the gills watching TV. Avoid such a fate, do not saddle yourself with metabolic dysregulation and feebleness from a poor diet and inactive lifestyle - cling onto vitality.

 

[Aunt Carol]

Ya, want to see something horrible, check out any over-55 mobile home park. Place tends to be as quiet as a cemetery. All those people living in their boxes, waiting for death. Not for me.

This is probably telling on myself and the community where I choose to live, but there are a ton of people we see inpatient who live at an over-55 mobile park and still do hella meth. The information age has helped people stay involved in all the family and semi-family feuds even when they're inpatient; their cell phones jingle and ding all through the night as the squabbles continue on group texts and Facebook, grandmas deferred to as the speed-fueled matriarchs they are.

I'm not endorsing the lifestyle choices, especially in the setting of cardiomyopathy, but maybe you're only looking at nice over-55 MH parks.

One of my best friends has worked in a nursing home for several years, and the thing that stuck out to me from his stories is that it's rarely the residents that are the biggest problem.

It's actually the staff.

From what I've gathered, the staff at his place seems to be little more than a clique of Nurse Ratchets, and broken-down jocks with little to no prospects.

Shit wages+shit working conditions retain shit people; the people with morals and a hope to do better eventually leave. Not to exonerate terrible staff, but the administration of a nursing home has a lot to do with it. If they decide it's just fine to have one CNA for thirty residents, then the kind of person who will stay is either very, very devoted, or someone who looks at the half-assed job it's possible to do, says "meh," and eats some pudding from the nutrition fridge.

There is a really weird regulatory grey area and it varies by state, but AFAIK most places do not have a legal staffing ratio for long-term care, so Management can handwave something about acuity and leave two aides and a nurse for a hundred or so people. Someone has an accident using the full lift? Well, it's staff's fault for not having two caregivers when using the lift per policy, never mind if that'd even be possible given what they have to work with.

Similar weirdness: an adult foster home or similar can hire you as a "caregiver" off the street, and you're OK to give meds including subcutaneous insulin. (Some places have a brief orientation and employ people as a "med-passer," actual title.) Take a month-long CNA class and get licensed, and you can't legally apply medicated ointment.

RNs at a SNF are often graduates of a substance-use program; if you were diverting IV opiates and want to stay clean/are required to tell the Board that you want to stay clean, working somewhere there aren't any IV opiates is more sustainable than having a second witness with you in an acute care setting.