Mom says she’d rather live in the streets than nursing home

[Anonymous]

Anonymous wrote:I have a wealthy relative with round the clock care at home, and it’s just a private nursing home. That has pluses and minuses honestly.

Everyone thinks they could iust fall and die at home but in reality it would probably be a lot slower, more painful and horrible than that.

+1 this is so much lonelier than living where you can have daily social interactions with different people if you want to and privacy in your room if you prefer that.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I’m a childless fifty year old who has taken care of many elderly relatives in a variety of settings.

I’ve pretty much decided I’d rather die puttering around my apartment and falling than in a nursing home.

What are her finances like ? Could she or you afford home caregivers?

It’s not all about you. This attitude is so self-centered and selfish.

Dementia patients left on their own become a danger to everyone else. Their neighbors, first responders, random innocent people.

Nah, I am team stay at home.

I tried that for 6 months and it was a disaster. My mom was super nasty and occasionally violent/destructive. She would also often not make it to the bathroom on time. It’s sounds nice to be able to stay “at home” on paper but becomes a bad reality pretty quickly. Also, depending on needs, in home care could be way more costly than a dementia care facility (which is already super expensive).

[Anonymous]

Anonymous wrote:

Anonymous wrote:So move her in with you if she can't be alone.

Great idea….and they can just run a nursing home out of the house with multiple 24 hr caregivers and randomly send her to hospital when needed. Oh and just take a dementia patient to all their doctors/dentist/eye appointments as they will understand and be totally cooperative. Easy peasy. Not.

Factor in the Sun downing, constant complaining, violent outbursts, cleaning diarreah off of walls and floors, etc etc. No bueno.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I know a couple with dementia who stayed in their home until the end.

They were wealthy enough for round the clock care, and their son and DIL lived in the house right next door, and were able to pop in and out as needed, manage the nurses and hired help, and organize medical appointments.

I cannot emphasize enough how unusual of a set-up this is. If the children live far away, they cannot monitor the caregiving and medical appointments. If the money isn't there, caregiving cannot happen unless one or more children given up their entire lives to caring for their parents.

This is why most patients with dementia are better off in memory care. With frequent visits, to check that they were reasonably looked after.

This is probably the best scenario I’ve heard of.

I myself would want to OD rather than waste away without my memory while spending $10k/mo while doing so.

The problem with that plan is you won’t be aware of your cognitive decline, so you’ll eventually forget it.

It’s like the people (in multiple threads on this forum) who say they have big plans to downsize when they reach a certain life stage, yet some of them will likely end up staying in their slowly deteriorating large house, rejecting offers to help move to the very lifestyle they once espoused.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I’m a childless fifty year old who has taken care of many elderly relatives in a variety of settings.

I’ve pretty much decided I’d rather die puttering around my apartment and falling than in a nursing home.

What are her finances like ? Could she or you afford home caregivers?

It’s not all about you. This attitude is so self-centered and selfish.

Dementia patients left on their own become a danger to everyone else. Their neighbors, first responders, random innocent people.

NP here. No, this poster's attitude is not "selfish." Can you truly not understand the horror and stress of having to move from your familiar home, losing everything you recognize and what remaining independence and control you have all at once? There have been many studies proving that moving into nursing home/care shortens the life of the patient. It's a monumental and horrible thing, though of course some families must do it for financial reasons.

The other poster asked about the mother's finances. Some people actually can afford quality demential care at home. It's a valid question when you consider what is at stake.

I've seen three relatives go into assisted living and nursing homes at very plush facilities, and it was terrible always. It was not the ideal way to spend your last years. Frankly, it was hellish. And these were the "best" facilities.

Like that PP, I'd rather die at home, or just die. Let's not pretend these places are ideal, or that the trauma is not real for the inmate.

Serious question here. What's hellish and terrible about it that's not related to the patient's dementia - which they'll have at home anyway? isn't it better to have not only caretakers but also a community of people their age around, so they're not isolated?

NP. The set up totally eliminates agency. They should have patients do tasks for rewards, which has been shown in studies to improve mood. Infantalizing adults robs people of their self-sufficiency, which is essential to thriving.

Can you imagine going to Disneyland forever and never being able to make a choice about what rides you go on or what meals you eat?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I’m a childless fifty year old who has taken care of many elderly relatives in a variety of settings.

I’ve pretty much decided I’d rather die puttering around my apartment and falling than in a nursing home.

What are her finances like ? Could she or you afford home caregivers?

It’s not all about you. This attitude is so self-centered and selfish.

Dementia patients left on their own become a danger to everyone else. Their neighbors, first responders, random innocent people.

Nah, I am team stay at home.

I tried that for 6 months and it was a disaster. My mom was super nasty and occasionally violent/destructive. She would also often not make it to the bathroom on time. It’s sounds nice to be able to stay “at home” on paper but becomes a bad reality pretty quickly. Also, depending on needs, in home care could be way more costly than a dementia care facility (which is already super expensive).

This. I did it for a year to try and honor her wishes but when I found her sprawled out on the floor one morning w/ shit smeared from head to toe and all over the floor, w/o a care in the world that she was covered in it and that I’d be the one to clean it up, I said no more.

[Anonymous]

I’m pp and I’m not talking about people with severe dementia. Just generally about facilities. We as a country don’t prioritize prevention and thriving.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I’m a childless fifty year old who has taken care of many elderly relatives in a variety of settings.

I’ve pretty much decided I’d rather die puttering around my apartment and falling than in a nursing home.

What are her finances like ? Could she or you afford home caregivers?

It’s not all about you. This attitude is so self-centered and selfish.

Dementia patients left on their own become a danger to everyone else. Their neighbors, first responders, random innocent people.

NP here. No, this poster's attitude is not "selfish." Can you truly not understand the horror and stress of having to move from your familiar home, losing everything you recognize and what remaining independence and control you have all at once? There have been many studies proving that moving into nursing home/care shortens the life of the patient. It's a monumental and horrible thing, though of course some families must do it for financial reasons.

The other poster asked about the mother's finances. Some people actually can afford quality demential care at home. It's a valid question when you consider what is at stake.

I've seen three relatives go into assisted living and nursing homes at very plush facilities, and it was terrible always. It was not the ideal way to spend your last years. Frankly, it was hellish. And these were the "best" facilities.

Like that PP, I'd rather die at home, or just die. Let's not pretend these places are ideal, or that the trauma is not real for the inmate.

Serious question here. What's hellish and terrible about it that's not related to the patient's dementia - which they'll have at home anyway? isn't it better to have not only caretakers but also a community of people their age around, so they're not isolated?

NP. The set up totally eliminates agency. They should have patients do tasks for rewards, which has been shown in studies to improve mood. Infantalizing adults robs people of their self-sufficiency, which is essential to thriving.

Can you imagine going to Disneyland forever and never being able to make a choice about what rides you go on or what meals you eat?

different poster here
#1 the communities allow the patient a choice in food and also a choice in activities. So they do not "totally eliminate agency."
#2 The whole point is that the dementia patients are NOT self sufficient nor are they "thriving"--and they never will again. Dementia patients don't get better.

[Anonymous]

Anonymous wrote:My great-aunt w/dementia was like this. Kept saying "I NEVER want to go to a nursing home"- but she wasn't eating regularly, would wander and get lost, etc. But she was generally "ok"

To move her, one of my aunts took her shopping while the other sisters quickly moved her stuff (including her clothes, artwork/pictures and a few furniture pieces) into her room at the nursing home. Instead of taking her home after the shopping trip, my aunt brought her straight to her new room and she barely noticed the difference!

We were incredulous - none of us knew her memory loss was so significant until that point.

Ann Patchett has an essay about doing something similar. The person (an aunt?) did not notice.

[Anonymous]

Anonymous wrote:I’m pp and I’m not talking about people with severe dementia. Just generally about facilities. We as a country don’t prioritize prevention and thriving.

What are the steps to preventing dementia that we as a country should prioritize? What type of "thriving" specifically are you looking for?

And severe dementia can develop quicker than the loved ones/caregivers realize. When someone is around the dementia patient frequently they don't see it and are often in denial.

[Anonymous]

Just wait for her to fall and go to the hospital. Then she will have to go to rehab. Then don’t let her move home.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My great-aunt w/dementia was like this. Kept saying "I NEVER want to go to a nursing home"- but she wasn't eating regularly, would wander and get lost, etc. But she was generally "ok"

To move her, one of my aunts took her shopping while the other sisters quickly moved her stuff (including her clothes, artwork/pictures and a few furniture pieces) into her room at the nursing home. Instead of taking her home after the shopping trip, my aunt brought her straight to her new room and she barely noticed the difference!

We were incredulous - none of us knew her memory loss was so significant until that point.

Ann Patchett has an essay about doing something similar. The person (an aunt?) did not notice.

Wow

[Anonymous]

There are no good options. If they stay at home there’s almost no way to keep up with their care or their caregivers. They’re a nuisance to neighbors (“I saw your mom walking outside in a t-shirt and underwear in the middle of winter.”) they knock on random doors, burn stuff, and call you a million times a day. They call the morning of a doctor’s appointment and say they don’t feel well enough to go. They forget everything, can’t follow instructions, and change their minds about things it takes you forever to figure out. But they’re in the own home, with the things and foods they like, and can watch whatever they want on tv.

At a facility, they can sit in dirty diapers for hours on end, and basically just aren’t treated that kindly. And every place is always understaffed so some basic needs go unmet. The food is usually not great, and they don’t get to eat all the stuff they like and are used to. Imagine eating institutional meals for the rest of your life. But some people do socialize and sort of make friends. And strangely enough, locked memory care units are almost better. They let them wander as much as they want (dementia patients seemed programmed to do that) and a lot of them are physically healthier than non-dementia patients.

Honestly, the only good scenario is to be super rich with close family who doesn’t mind helping with your care.

[Anonymous]

Anonymous wrote:I’m a childless fifty year old who has taken care of many elderly relatives in a variety of settings.

I’ve pretty much decided I’d rather die puttering around my apartment and falling than in a nursing home.

What are her finances like ? Could she or you afford home caregivers?

This 100%. So many people on DCUM infantilize the elderly and think they can just take away their rights. So what if your mother dies by falling in her house if it's what she wants? I would much rather die living the way I want than being forced into a gross, smelly, depressing nursing home, that my kids will dread coming to whenever they "have" to visit. This is how I feel about my mother. I absolutely loved my mother growing up. She wasn't perfect, but she and my dad gave us a nice life. She is now wasting away in a memory care unit and I literally can't stand her. If she had just lived the way she wanted, in her own home, her life wouldn't be ending this way. So she leaves the stove on and dies in an explosion? Seriously. As long as she doesn't hurt others, then I still say that would be way better than the way she lives now, hated by the one livng relative she has left, through no real fault of her own. I plan to do better for my kids. And would probably follow through on what your mother said, and take the pills.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I’m a childless fifty year old who has taken care of many elderly relatives in a variety of settings.

I’ve pretty much decided I’d rather die puttering around my apartment and falling than in a nursing home.

What are her finances like ? Could she or you afford home caregivers?

This 100%. So many people on DCUM infantilize the elderly and think they can just take away their rights. So what if your mother dies by falling in her house if it's what she wants? I would much rather die living the way I want than being forced into a gross, smelly, depressing nursing home, that my kids will dread coming to whenever they "have" to visit. This is how I feel about my mother. I absolutely loved my mother growing up. She wasn't perfect, but she and my dad gave us a nice life. She is now wasting away in a memory care unit and I literally can't stand her. If she had just lived the way she wanted, in her own home, her life wouldn't be ending this way. So she leaves the stove on and dies in an explosion? Seriously. As long as she doesn't hurt others, then I still say that would be way better than the way she lives now, hated by the one livng relative she has left, through no real fault of her own. I plan to do better for my kids. And would probably follow through on what your mother said, and take the pills.

Surely you're being sarcastic.

You think an exploding house will only effect the elderly person living in it? Not the neighbors? Not the first responders that have to come put out the fire (remember just a couple months ago in Sterling a firefighter lost his life in a house explosion?)