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

[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).

That was the issue for us. 24/7 at home care is incredibly expensive and was worse than a dementia care facility / nursing home.

[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.

Yes, this exactly.

The Dignitas Clinic is my longterm care plan. I will do it before I am feeble and starting to decline: I'm thinking 78th birthday, because at that point most of my grandparents and greatgrandparents were experiencing their final independent, enjoyable years. I will make it a happy occasion, a final trip through European accompanied by whatever friends or family I have left who are supportive. We will visit all the cities and places where I used to live as an expat, will stay in the best hotels, eat the best food, drink the best wine. I'll smoke weed whenever and wherever. I'll carry around a box of fine chocolates and eat them all myself. Then we'll all head to the clinic in Switzerland, where I will sip that cup of poison and slip away surrounded by happy loved ones. There will be no decline, no dementia, no last memory of me crying in pain or crazy or pleading to be taken home. How is this not preferable to the alternative?

I watched three grandparents and two great-grandparents spend their last months or years in nursing homes, and I do not think it was dignified or compassionate. It was a living hell for each of them. Two died in terrible pain from cancer in their last days (we don't even allow our dogs or cats to reach that end), one spent years locked in his own body in a Parkinsons hell before finally choking on his own saliva, and the worst was the one had a series of small strokes, but could still walk and was lucid most of the time: he had been quite well-off, had given all of his assets to his kids across his last ten independent years, then plaintively said to me, "I gave away all my money to them. And they want to put me in that home. Why won't they make it so I can stay home?" It was as if a switch had flipped, and everyone universally turned off their emotions and feelings for these people who had been beloved and respected only a few years earlier. Maybe that's natural, but I don't think it has to be necessary. There's nothing noble in the end most people will face, so why not plan a dignified exit that will be kinder to me and to my family?

[Anonymous]

Anonymous wrote:

Anonymous wrote:Tell her the house needs repairs so you found a place for her to go until they’re done. When she brings it up later tell her it’s still getting repaired. Tell her the place she’ll be at temporarily is the best in the area and that there was a huge waitlist but they were nice enough to make an exception for her. Don’t sell it as a nursing home.

You have to try to detach as much as possible and come to terms with the fact that at this stage of their lives their safety trumps their happiness.

No, especially at the end of someone’s life their happiness trumps their safety. You got it backwards. Think about what you would want if you found out you had one year to live. Would eeking out one more day be your priority? No - f that. You’d eat all the ice cream and go skydiving.

Now, other people’s safety does trump someone’s happiness, so risking other people’s heath and safety isn’t acceptable. That means no car, and you may need to disconnect the stove. Microwave and electric kettle only. If they start to be a problem for neighbors (ringing doorbell late at night, yelling at children) then their own happiness has to take a backseat.

The use of the word happiness is complicated by the dementia. It’s like asking if a drug user on the street is happy living malnourished and filthy on the street. They think it’s what they want. In their mental state they cannot conceive of being sober and well fed and clean again. This is the best analogy for what happened with my mother.

[Anonymous]

OP, how was this message delivered. I haven't read the whole thread, so apologies.

You research. You visit. And you and any siblings narrow-down the choices to 2 or 3. You know when move-in would be. Then, you take Mom to choose. And it's practically the first time you're talking about it. It's happening. And all sibling are united.

Within a couple months, if she's anything like our parents ... you would have thought it was their idea. They had no memory how much h*ll they put us through. They were happy and adjusted.

When they can't think rationally, you have to do all you can to keep them safe.

[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?

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.

Yes, this exactly.

The Dignitas Clinic is my longterm care plan. I will do it before I am feeble and starting to decline: I'm thinking 78th birthday, because at that point most of my grandparents and greatgrandparents were experiencing their final independent, enjoyable years. I will make it a happy occasion, a final trip through European accompanied by whatever friends or family I have left who are supportive. We will visit all the cities and places where I used to live as an expat, will stay in the best hotels, eat the best food, drink the best wine. I'll smoke weed whenever and wherever. I'll carry around a box of fine chocolates and eat them all myself. Then we'll all head to the clinic in Switzerland, where I will sip that cup of poison and slip away surrounded by happy loved ones. There will be no decline, no dementia, no last memory of me crying in pain or crazy or pleading to be taken home. How is this not preferable to the alternative?

I watched three grandparents and two great-grandparents spend their last months or years in nursing homes, and I do not think it was dignified or compassionate. It was a living hell for each of them. Two died in terrible pain from cancer in their last days (we don't even allow our dogs or cats to reach that end), one spent years locked in his own body in a Parkinsons hell before finally choking on his own saliva, and the worst was the one had a series of small strokes, but could still walk and was lucid most of the time: he had been quite well-off, had given all of his assets to his kids across his last ten independent years, then plaintively said to me, "I gave away all my money to them. And they want to put me in that home. Why won't they make it so I can stay home?" It was as if a switch had flipped, and everyone universally turned off their emotions and feelings for these people who had been beloved and respected only a few years earlier. Maybe that's natural, but I don't think it has to be necessary. There's nothing noble in the end most people will face, so why not plan a dignified exit that will be kinder to me and to my family?

You quoted a post that said people should be ok with exploding houses and said "yes, this exactly?" So a firefighter losing their life and leaving a spouse and young children without a father is "exactly" fine with you? Sick.

[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?

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.

Yes, this exactly.

The Dignitas Clinic is my longterm care plan. I will do it before I am feeble and starting to decline: I'm thinking 78th birthday, because at that point most of my grandparents and greatgrandparents were experiencing their final independent, enjoyable years. I will make it a happy occasion, a final trip through European accompanied by whatever friends or family I have left who are supportive. We will visit all the cities and places where I used to live as an expat, will stay in the best hotels, eat the best food, drink the best wine. I'll smoke weed whenever and wherever. I'll carry around a box of fine chocolates and eat them all myself. Then we'll all head to the clinic in Switzerland, where I will sip that cup of poison and slip away surrounded by happy loved ones. There will be no decline, no dementia, no last memory of me crying in pain or crazy or pleading to be taken home. How is this not preferable to the alternative?

I watched three grandparents and two great-grandparents spend their last months or years in nursing homes, and I do not think it was dignified or compassionate. It was a living hell for each of them. Two died in terrible pain from cancer in their last days (we don't even allow our dogs or cats to reach that end), one spent years locked in his own body in a Parkinsons hell before finally choking on his own saliva, and the worst was the one had a series of small strokes, but could still walk and was lucid most of the time: he had been quite well-off, had given all of his assets to his kids across his last ten independent years, then plaintively said to me, "I gave away all my money to them. And they want to put me in that home. Why won't they make it so I can stay home?" It was as if a switch had flipped, and everyone universally turned off their emotions and feelings for these people who had been beloved and respected only a few years earlier. Maybe that's natural, but I don't think it has to be necessary. There's nothing noble in the end most people will face, so why not plan a dignified exit that will be kinder to me and to my family?

Nice fantasy. Many people think this, but it won’t happen. Your perspective will change and by the time you’re 78 — if you’re lucky enough not to have wasted away slowly of cancer or died suddenly of a stroke — you will feel that living one more day with your children and grandchildren is worth the possible indignity of someone wiping your bottom. Or, dementia will have snuck up on you so slowly that you exist essentially drunk all the time, without the ability to plan that flight to Switzerland.

I see people claim this plan for assisted suicide all the time on this board, but it’s rare to hear of anyone actually doing it.

[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?

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.

Yes, this exactly.

The Dignitas Clinic is my longterm care plan. I will do it before I am feeble and starting to decline: I'm thinking 78th birthday, because at that point most of my grandparents and greatgrandparents were experiencing their final independent, enjoyable years. I will make it a happy occasion, a final trip through European accompanied by whatever friends or family I have left who are supportive. We will visit all the cities and places where I used to live as an expat, will stay in the best hotels, eat the best food, drink the best wine. I'll smoke weed whenever and wherever. I'll carry around a box of fine chocolates and eat them all myself. Then we'll all head to the clinic in Switzerland, where I will sip that cup of poison and slip away surrounded by happy loved ones. There will be no decline, no dementia, no last memory of me crying in pain or crazy or pleading to be taken home. How is this not preferable to the alternative?

I watched three grandparents and two great-grandparents spend their last months or years in nursing homes, and I do not think it was dignified or compassionate. It was a living hell for each of them. Two died in terrible pain from cancer in their last days (we don't even allow our dogs or cats to reach that end), one spent years locked in his own body in a Parkinsons hell before finally choking on his own saliva, and the worst was the one had a series of small strokes, but could still walk and was lucid most of the time: he had been quite well-off, had given all of his assets to his kids across his last ten independent years, then plaintively said to me, "I gave away all my money to them. And they want to put me in that home. Why won't they make it so I can stay home?" It was as if a switch had flipped, and everyone universally turned off their emotions and feelings for these people who had been beloved and respected only a few years earlier. Maybe that's natural, but I don't think it has to be necessary. There's nothing noble in the end most people will face, so why not plan a dignified exit that will be kinder to me and to my family?

Nice fantasy. Many people think this, but it won’t happen. Your perspective will change and by the time you’re 78 — if you’re lucky enough not to have wasted away slowly of cancer or died suddenly of a stroke — you will feel that living one more day with your children and grandchildren is worth the possible indignity of someone wiping your bottom. Or, dementia will have snuck up on you so slowly that you exist essentially drunk all the time, without the ability to plan that flight to Switzerland.

I see people claim this plan for assisted suicide all the time on this board, but it’s rare to hear of anyone actually doing it.

As more and more people live longer with Alzheimers and dementia, more people who are stuck caring for them are absolutely planning assisted suicide. I have repeatedly expressed my wish to not live with Alzheimer's or dementia to my husband and kids. It is such a cruel disease to the person suffering AND their love ones. My mother and aunt both have dementia and my cousins and I are already planning to help each other out if we end of having dementia/alzheimers when the time comes so when we can help each other go to Dignitas or another place.

[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?

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.

I agree. This is super selfish. But the super selfish deserve what is coming to them. PP, you might be eaten by your pets as your body decays for a few days before a relative, neighbor, or mailperson does a well check. I hope whoever finds you isn’t permanently scarred by your stupidity and lack of preparation. My mom is a bit like this and I decided, it’s her prerogative. I’d let her die this way. She might be laying on the floor for days before, we found out, dehydrated and in pain. . . She made it very clear that is her preference. So be it!

[Anonymous]

The hyperbole about exploding houses and naked grannies running down children in their ‘57 Biscaynes is too much!

Every persons’s situation is different and there is no one size fits all solution.

My sense is that people do best in a facility if (1) they are lucid enough to know they need the help and make the choice willingly; or (2) they are so far out of it that at least most of the time they don’t know the difference.

The one thing that matters most in a care facility is the caretakers. Some of them somehow find a way to include love along with the care. Others do not. And some shouldn’t be allowed to take care of livestock, let alone human beings.

It is true that some patients form social bonds, but I think that the majority of people still capable of that wish they were still living independently. It’s hard to be social surrounded by old, dying, deteriorating people.

“Memory care” has to be among the most cynical marketing labels ever devised.

[Anonymous]

It's worth it to do a therapeutic lie as others suggest. They don't understand what it is to age in place with 24-7 caregivers. Friends don't visit, you are alone with a stranger and if you are difficult and that person loses her cool back, it could turn abusive without witnesses. There are so many issues unless it's an easy going pleasant elder with plenty of people happy to check on on the caregivers. I have seen family go through both and I will be going to a continuing care. The settings are beautiful and having friends right there and a life make a difference. I have seen too much rotting at home.

[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?

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.

Yes, this exactly.

The Dignitas Clinic is my longterm care plan. I will do it before I am feeble and starting to decline: I'm thinking 78th birthday, because at that point most of my grandparents and greatgrandparents were experiencing their final independent, enjoyable years. I will make it a happy occasion, a final trip through European accompanied by whatever friends or family I have left who are supportive. We will visit all the cities and places where I used to live as an expat, will stay in the best hotels, eat the best food, drink the best wine. I'll smoke weed whenever and wherever. I'll carry around a box of fine chocolates and eat them all myself. Then we'll all head to the clinic in Switzerland, where I will sip that cup of poison and slip away surrounded by happy loved ones. There will be no decline, no dementia, no last memory of me crying in pain or crazy or pleading to be taken home. How is this not preferable to the alternative?

I watched three grandparents and two great-grandparents spend their last months or years in nursing homes, and I do not think it was dignified or compassionate. It was a living hell for each of them. Two died in terrible pain from cancer in their last days (we don't even allow our dogs or cats to reach that end), one spent years locked in his own body in a Parkinsons hell before finally choking on his own saliva, and the worst was the one had a series of small strokes, but could still walk and was lucid most of the time: he had been quite well-off, had given all of his assets to his kids across his last ten independent years, then plaintively said to me, "I gave away all my money to them. And they want to put me in that home. Why won't they make it so I can stay home?" It was as if a switch had flipped, and everyone universally turned off their emotions and feelings for these people who had been beloved and respected only a few years earlier. Maybe that's natural, but I don't think it has to be necessary. There's nothing noble in the end most people will face, so why not plan a dignified exit that will be kinder to me and to my family?

My mother would say the same thing right now and we are respecting her wishes and having her at home with care. She would tell you a long horrible tale of how terrible we are, how we never visit and are ungrateful. She would leave out the many years of her tantrums, rage fits, going off meds, refusing evaluation, firing every doctor, spending every visit guilt tripping, insulting, and shaming. It was both a therapist and an elder care exert dealing with her who both explained she was never going to be pleased. I had to find what I could handle and set boundaries. I was also told there are difficult elders where the family visits daily and will complain to everyone that they don't get enough love and respect. Often with the aging brain they become like toddlers unable to understand anyone's needs, but their own. So don't assume the family is terrible whether they visit daily, weekly, monthly or yearly. There is likely a massive backstory you don't know and believe me I left out a huge portion in the post.

[Anonymous]

Anonymous wrote:

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.

There is tons of research about this. Read Dr. Mosconi’s book about it. Starting HRT is one option.

My parent has Alzheimer’s, so I have learned a lot about it.

No need to just throw up your hands. IDK what you mean about “what thriving I’m looking for?” Don’t we all want a long healthspan???

[Anonymous]

I want to recommend that people watch tomorrow night’s episode of Anderson Cooper’s The Whole Story on CNN.

Dr. Sanjay Gupta gets assessed for Alzheimer’s risk at a neuro clinic and discusses in depth with specialist dementia physicians the substantive lifestyle changes that can significantly reduce the risk of developing dementia. It’s called The Last Alzheimer’s patient.

[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.

Good reference. Grandmother. Thanks.

https://www.theguardian.com/theobserver/2007/aug/05/features.magazine77

[Anonymous]

Anonymous wrote:The hyperbole about exploding houses and naked grannies running down children in their ‘57 Biscaynes is too much!

Every persons’s situation is different and there is no one size fits all solution.

My sense is that people do best in a facility if (1) they are lucid enough to know they need the help and make the choice willingly; or (2) they are so far out of it that at least most of the time they don’t know the difference.

The one thing that matters most in a care facility is the caretakers. Some of them somehow find a way to include love along with the care. Others do not. And some shouldn’t be allowed to take care of livestock, let alone human beings.

It is true that some patients form social bonds, but I think that the majority of people still capable of that wish they were still living independently. It’s hard to be social surrounded by old, dying, deteriorating people.

“Memory care” has to be among the most cynical marketing labels ever devised.

I think you must be very lucky. I have been at this many years and have made friends through eldercare support groups and reconnected with old friends over eldercare issues. In just my network we have had a parent burn down the house and cause damage to neighbor's house, get into car accident that injured an innocent human, show up naked at the grandchild's room, walk outside naked, fall down steps and die only to be discovered the next day, become verbally, emotionally and in 1 case physically abusive, the list goes on. The damage done to others is horrifying. If a parent dies living they way he/she wanted that is one thing, but to scar or take another life is horrifying.

I wish I was still naive. I wish I could go back 15 years, maybe 20 before I experienced horror stories and had so many friends who had horror stories.