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

Aunt Carol

four-letter word for a female
True & Honest Fan
kiwifarms.net
Joined
Feb 25, 2021
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.
10[1].jpg

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

Vozhd
True & Honest Fan
kiwifarms.net
Joined
Jan 14, 2018
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

kiwifarms.net
Joined
Mar 17, 2020
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

kiwifarms.net
Joined
Jun 2, 2019
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

kiwifarms.net
Joined
Mar 17, 2020
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?
 

T0oCoolFool

kiwifarms.net
Joined
Jun 2, 2019
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

Bone Poet
kiwifarms.net
Joined
Oct 3, 2018
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

kiwifarms.net
Joined
Jun 2, 2019
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

four-letter word for a female
True & Honest Fan
kiwifarms.net
Joined
Feb 25, 2021
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.