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

[Anonymous]

Anonymous wrote:This is my neighbor. She fell and nobody knew for 2 days. She was lucky her sister came to visit after she didn't answer her phone. If she had had something on the stove, she could have burned her house down, as well as her neighbors. But at least she has her freedom, so there's that....

When I was an EMT I responded to a call where an elderly man fell between his toilet and bath tub, could not get out, was found 5 days later dehydrated/barely alive

[Anonymous]

Anonymous wrote:

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.

Collecting more garbage with each passing day...

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

It sounds like you and your friends have had some rough times. But I think your sample is extremely small. A huge number of people die every day. The vast majority of them, even with one level of dementia or another, do not get involved in the kind of events you describe. And there are house fires, car wrecks and people falling down stairs all the time too, the vast majority of them not involving dementia.

Np. Wow…you are so naive. If you are caring for someone with dementia (or overseeing their care at an asl) you will find out. Good luck to you as you will need it!👍

[Anonymous]

Anonymous wrote:

Anonymous wrote:This is my neighbor. She fell and nobody knew for 2 days. She was lucky her sister came to visit after she didn't answer her phone. If she had had something on the stove, she could have burned her house down, as well as her neighbors. But at least she has her freedom, so there's that....

When I was an EMT I responded to a call where an elderly man fell between his toilet and bath tub, could not get out, was found 5 days later dehydrated/barely alive

Yep . My mom at 88 fell and hit her head outside. She crawled bleeding back inside the house and pushed her life alert button. Ambulance took her to hospital and she got 20 staples and stitches in her head. Life alert button saved her life. Glad she followed my instructions and wore the button 24 hrs a day.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

It sounds like you and your friends have had some rough times. But I think your sample is extremely small. A huge number of people die every day. The vast majority of them, even with one level of dementia or another, do not get involved in the kind of events you describe. And there are house fires, car wrecks and people falling down stairs all the time too, the vast majority of them not involving dementia.

Okay, I don’t believe you’ve ever been through this. Every long term cognitive decline situation I know well involves at least some safety crises and a period of abuse/violence. Every one. It’s normal, not abnormal. And to be clear, it’s not solved by using a group facility or not, I’m just saying it’s normal. For one thing I think incidents can happen early in the disease, sometimes before there’s a diagnostic consensus.

So true. And if they are already in a memory care facility they can get kicked out if behavior does not get under control. They will be sent to a psychiatric unit at hospital to get on meds to help them (not a bad thing as they need it). And then hopefully the asl will accept them back. If not, nursing home it is if you can find one that will accept them.

[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.

This!! You won’t know you are demented and will disagree with everyone that is concerned. Good luck.

[Anonymous]

A friend's mom killed herself late-70s to avoid this and it caused a lot of grief and anger among her kids and grandkids. Not sure that's the answer either. They begged her not to take her life. It was very traumatic.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

It sounds like you and your friends have had some rough times. But I think your sample is extremely small. A huge number of people die every day. The vast majority of them, even with one level of dementia or another, do not get involved in the kind of events you describe. And there are house fires, car wrecks and people falling down stairs all the time too, the vast majority of them not involving dementia.

Np. Wow…you are so naive. If you are caring for someone with dementia (or overseeing their care at an asl) you will find out. Good luck to you as you will need it!👍

Perhaps what you interpret as naïveté is actually vastly more experience over many years with a whole bunch of different people than you are relying upon. In other words a broader sample size involving a diversity of behaviors in different circumstances.

[Anonymous]

Anonymous wrote:A friend's mom killed herself late-70s to avoid this and it caused a lot of grief and anger among her kids and grandkids. Not sure that's the answer either. They begged her not to take her life. It was very traumatic.

It's not the adult kids' fault. it's actually quite selfish for the elderly parent to do that. If she wanted something different, she should have made a plan. Stop burdening your adult kids.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

You can get at home palliative care that is covered by insurance! Very, very worth it. Primary care and nurses (to treat acute things but they also help with planning and helping strategize with caregivers).

that doesn't work so well when you also have an autistic 7 year old!

[Anonymous]

Anonymous wrote:

Anonymous wrote:This is my neighbor. She fell and nobody knew for 2 days. She was lucky her sister came to visit after she didn't answer her phone. If she had had something on the stove, she could have burned her house down, as well as her neighbors. But at least she has her freedom, so there's that....

When I was an EMT I responded to a call where an elderly man fell between his toilet and bath tub, could not get out, was found 5 days later dehydrated/barely alive

My lovely neighbor was found deceased laying in her kitchen by my other neighbor after we all on the block had determined no one had seen or talked to her in 2 weeks, and her mail was piling up outside (which is unusual for her). Many had thought she had gone on vacation to visit relatives but in fact she had apparently had a stroke in her kitchen and because she lived alone no one found her in time. Something similar happened to my grandmother but someone from church had gone to check on her and found her in time to get her medical help.

But my neighbor wasn’t as lucky. Some neighbors got together, we broke into her house and found her. It has haunted me ever since. She was a really nice lady, just had barely any family and they all lived very far away.

[Anonymous]

These stories of fell and couldn’t get up should not be happening any more. Buying an allle watch with alerts is cheaper than nursing care. My parents are in their 90s and still living independently. Two out of 7 of my elderly relatives had dementia. I just don’t know why we can’t accept euthanasia for people at the state where they are no longer themselves. That’s what we’d all want l, but no one will do it so you end up with people planning to take their lives when they are still competent — that’s a tragedy. I do thing there will be a sea change. Gen X just looks at this very differently than my parents generation, which has a lot of moral baggage about this stuff.

[Anonymous]

Anonymous wrote:These stories of fell and couldn’t get up should not be happening any more. Buying an allle watch with alerts is cheaper than nursing care. My parents are in their 90s and still living independently. Two out of 7 of my elderly relatives had dementia. I just don’t know why we can’t accept euthanasia for people at the state where they are no longer themselves. That’s what we’d all want l, but no one will do it so you end up with people planning to take their lives when they are still competent — that’s a tragedy. I do thing there will be a sea change. Gen X just looks at this very differently than my parents generation, which has a lot of moral baggage about this stuff.

“Euthanasia” is all too often about putting the euthanizers out of the afflicted person’s misery.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:This is my neighbor. She fell and nobody knew for 2 days. She was lucky her sister came to visit after she didn't answer her phone. If she had had something on the stove, she could have burned her house down, as well as her neighbors. But at least she has her freedom, so there's that....

When I was an EMT I responded to a call where an elderly man fell between his toilet and bath tub, could not get out, was found 5 days later dehydrated/barely alive

Yep . My mom at 88 fell and hit her head outside. She crawled bleeding back inside the house and pushed her life alert button. Ambulance took her to hospital and she got 20 staples and stitches in her head. Life alert button saved her life. Glad she followed my instructions and wore the button 24 hrs a day.

My mom refuses to wear any life button.

[Anonymous]

I think of a nursing home as a bed in a sometimes shared room with strangers. One grandmother was on Medicaid and in such a place.

My mom is in assisted living and has her own one-bedroom apartment so we call it her apartment instead of a nursing home.

Her being at home was making me stressed and ill. The medication management was a nightmare and she was taking meds at wrong times or not at all despite our signs.

She did not want people in the house.