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

[Anonymous]

So the stories about people killing others because of dementia are unrealistic, but every dementia patient living at home with full agency until they die neatly of a fall is a likely scenation?
Oh, honey, no

[Anonymous]

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.

DP. Yes. When you know, you know, and you can't forget.

[Anonymous]

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.

[Anonymous]

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).

[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.

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.

[Anonymous]

If people posting here genuinely believe they want to stay in there home forever no matter what, I hope they don’t have children or other loved ones. If they truly have no connections, then that’s a fine way to go. But if anyone out there loves you, please do not do this to them. They will not in good conscience be able to simply ignore your situation. In our experience we have dealt with: wandering the neighborhood and elder services being called, rat infestation, multiple falls, total toileting fails, and constant confused phone calls. Do not do this to your children.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Therapeutic lying. House needs to be fumigated; doctor wants her to recover for a few weeks (only works after a fall etc). How bad is her dementia? Will she forget you told her?

Also yes does she need 24/7 watching? (Does she wander? Will she drive or hurt herself or others if unattended?) or is she just losing short term memory ?

This. It works better if she has had to go into a hospital and you have her transferred directly to a care facility.

Once someone has dementia, trying to reason with them doesn't work as well.

If you can, this tends to work best. Although can't always be lined up with when a preferred place has availability.

Ignore what she is saying, OP, its fear and dementia talking.

Do you or any family members live nearby? Or will she have to be relocated geographically as well?

[Anonymous]

Thanks all. We have figured out a strategy with therapeutic lying this week. Wish us luck

[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.

“That I know of.”

And your knowing of them might have something to do with the drama. Non-dramatic cognitive decline that winds up in a quiet death doesn’t get the same attention.

My point is that the post hoc ergo propter hoc association of dramatic events with dementia, as if the drama was inevitable, is fallacious. Each case is different.

[Anonymous]

Anonymous wrote:If people posting here genuinely believe they want to stay in there home forever no matter what, I hope they don’t have children or other loved ones. If they truly have no connections, then that’s a fine way to go. But if anyone out there loves you, please do not do this to them. They will not in good conscience be able to simply ignore your situation. In our experience we have dealt with: wandering the neighborhood and elder services being called, rat infestation, multiple falls, total toileting fails, and constant confused phone calls. Do not do this to your children.

This x100. With dementia in particular most people reach a point where they need 24 hour care. That would have cost us $15,000 a month which was out of reach. My mom was a wanderer and had violent episodes in her last year of life. So she lived in an unsafe situation with my dad with hemp from family and a series of part time in
home caregivers but eventually we had to transition to memory care with some interventions from her doctor and a hospital social worker who finally convinced my father that was best for everyone’s safety

[Anonymous]

I can definitely tell who here has taken care of loved ones with dementia and those who think they know how it is. To the poster who said happiness should trump safety, when it comes to dementia, you’re delusional. I could see a cancer patient skydiving and having a good old time with their remaining time on this earth but a dementia patient? That’s totally laughable.

[Anonymous]

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....

[Anonymous]

Anonymous wrote:Thanks all. We have figured out a strategy with therapeutic lying this week. Wish us luck

Good luck!

[Anonymous]

Anonymous wrote: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.

No, this is the worst strategy! Dealing right now with a parent that fell and broke their hip, and the hospital alone was awful. Totally delirious. Got to rehab #1 and fell so many times in ~5 hours they were there, that they had to go back to hospital, but this time with opioids for pain! Continued delirium, no longer has any idea where they live, or that they can't walk any more due to the broken leg. Needs a babysitter on top of nursing home care so they don't fall.

Really wish we had forced the move to AL before this! Doubt the memory will come back at this rate.

[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?

Neglect and abuse by staff
Their finances drained to zero
Infections