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OVer and over I am told she can't live alone - you have to make sure she is safe. Well, I am a firm believer that someone with Alzheimers will NEVER be safe again. Just last month, an employee at the extremely expensive, highly-regarded memory care facility was arrested for killing one of the residents. I watched my stepfather decline rapidly once we moved him there. Moving my mom against her wishes will not be a magic bullet that will solve anything in my mind. Why wouldn't we want to allow her to stay in her home until we absolutely have to? At what point do we decide she doesn't have the right to have control over what little she can? She has lost everything - her intellect, her social life, her ability to drive, travel, her husband, her dog, her independence. Are we wrong for trying to respect her unequivocal desire to stay home? I have 2 sisters and all 3 of us are living in a constant state of stress and anxiety and heartbreak and sorrow and irritation and fear and uncertainty. I worry about calling someone because getting authorities of any kind involved seems risky. We don't know what to do but we know that we don't want to be in a situation where we don't have any say about what happens to her. All i know is my biggest fear is Alzheimers and thinking that my only child could possibly have to live like we are living but without siblings to help.

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If you are worried already about your only child having to care for you in your old age, plan now not to be a burden. Arrange your Will, POA, MPOA and funeral plans. It's never too early. Save money so that you'll be able to go to the assisted living place of your choice. You will have friends there, meals provided, transportation to doctors and activities, such as the ice cream shop with other residents, the Christmas parade downtown, shopping jaunts, movie trips, and so on. That's what assisted living and/or memory care is like. I have friends who live there. My mom lived in one for five years, and it was great.

Okay, so you want your mom to live at home. You don't want her to have any of the above. Instead she lives in her home, unsupervised sometimes, can't take care of herself and has little social contact. Alzheimers gets worse and it doesn't give you fair warning when she's about to wander, as my neighbor did in the middle of a cold fall night. She walked down the middle of her street naked. My friend's mom came out of her room stark naked and wearing her Depends on her head because she thought it was a hat. There were visitors present. My dad walked out of his house in the middle of the night, car keys in hand because he had to go to the office and work, he said. Another friend's husband put an egg on the stove to boil and left the house. Friend came home to a smelly mess and made sure he wasn't alone in the house again. One of my LOs got up and got dressed at 3:30 a.m. because he thought it was morning. Fortunately he was caught and told to put pajamas back on, it was still night. I once knew a lady who ate the potpourri. It was in a dish on the living room table, so it must have been food.

Most people don't get killed in memory care. Your stepfather might have declined at exactly the same rate if he hadn't been in a facility.

You and your sisters are the ones whose brains still function. Your mom's brain doesn't. Someone with dementia shouldn't dictate to you (plural). You are bound to keep her safe. She's lost everything? Well, not her life. She still has that. But if she sets her house on fire, or if she falls, breaks bones and dies alone, her death will be horrendously painful. In memory care, she probably dies peacefully in a bed with her three daughters gathered around. I'm very sorry, but this is how it is.

You choose.
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Everyone wants to stay in their home but sometimes it’s just not safe to do so.

My mom with dementia fell 7 times in a matter of 8 months & that was with a live in caregiver. She fractured many bones during that time.

She suffered more at home than she would have in a memory care unit.
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FamilyNeeded Nov 5, 2023
Did they have your mother on any drugs? Like anti-depressants or sleeping pills? These are very dangerous for people with dementia and will CAUSE them to fall. There are natural alternatives that are far safer.

My sister with dementia was given this while still at home and started falling. We got her off of it immediately and she recovered immediately.

Later she was FORCED into a nursing home against her wishes and ours! When I went to see her shortly after they threw her in there she was in a wheel chair ...could not stand, could not speak, was falling out of the chair. They were once again giving her the drugs we had taken her off of.

They even ignored the doctors note saying to remove the drugs. They like people to stay sedated, because they are LAZY and it makes less work for them. They moved her to another facility eventually where they were so rough with her that they broke her femur. Then made her bed ridden even though she could walk, but the staff didn't want to help her walk.

During the lockdowns they removed her food and water without telling us. She died several days later!

So no! She did not suffer at home at all. She suffered when they threw her into these horrible 'CARE' facilities!
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As long as your mom can have 24/7/365 care from a person in her home - ALL THE TIME - she can live at home. Most families do not enlist enough help to cover the time and tasks needed. If you can get volunteers for most of the tasks and time, then you won't need to spend all her money - or yours - with paid sitters/help. This is why so many people go the skilled nursing facility/memory care facility route.
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I worked for an elderly couple 3 evenings a week and the man suffered from Alzheimer's. His daughter was just like you.....full of reasons why her parents should live at home "aging in place" and control what they still could. Except they really couldn't. Why "waste" all their Hard Earned Money in Memory Care Assisted Living? I told her it was a big mistake to leave them alone for the majority of the time, especially overnight. She disagreed and wanted to respect their "unequivocal desire to stay home" in spite of the dangers of doing so.

One night Jim left the home at 2am or thereabouts bc he always insisted he lived down the block. He proceeded to fall in the street and hit his head on the pavement. He wasn't found for several hours when 911 was called. He'd suffered a subdural hematoma and died the next day in the hospital.

His funeral was very sad and I shed quite a few tears for him myself.

I had my mother placed in Memory Care Assisted Living for nearly 3 years and nobody killed her. Dementia did, ultimately, but she was beautifully cared for by "her girls" in the meantime.

As an only child with parents who made no plans for their old age, I got to manage their entire lives FOR THEM, which was nearly a full time and thankless job for me, let me tell you. I had total say over what happened to them in managed care, as their POA, and made all their decisions for them. As much as I had to do for them, at least I didn't live "in a constant state of stress and anxiety and heartbreak and sorrow and irritation and fear and uncertainty" because I knew they were well cared for, I saw to it myself firsthand. If there was something I didn't like, I spoke to the director about changing it. My folks were safe and I did my job.
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ElizabethAR37 Nov 4, 2023
Am I a contrarian? IMO, "Jim" had a reasonably good end--all things considered. Although the circumstances may have been unfortunate, his family did as well. All the emphasis on safety as a be-all and end-all for older adults can overlook the fact that old-old people can end up in an ongoing loop of EXISTENCE. I understand why safety emphasis is pervasive--no one wants to be accused of "elder kill" or abandonment. That said, as an elder, personally I'd vote for Jim's death vs. years of being warehoused in a facility.
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Your mother’s brain is broken. She cannot make decisions. You need to accept that.
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Here's the thing no one tells you about getting old, unless you are lucky most of us will lose everything as we age. It is not something most people talk about or even think about. But it is a reality for so many people.

It's heartbreaking because when you get to that point if your mind is still in tact you may wonder what the hell was the point in life at all just to end up like this at the end?

"Are we wrong for trying to respect her unequivocal desire to stay home?"

Yes you are wrong. This isn't about what a normal and competent person wants. Your mother has ALZ and what she wants and what she needs are two different things.

You need to find a facility for mom to go to. Your mother has an incurable disease and she is going to decline regardless of where she is living.

The only question is are you willing to wait another year or more and live with the anxiety, fear, and stress before having to be forced to place her in a facility?

And by then you will be so burnt out from it all that the love you have for your mother will be replaced by resentment because you didn't move her to a facility sooner. Get your sisters on board with moving mom into a facility sooner rather than later.
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BurntCaregiver Nov 1, 2023
@sp196902

There are other choices besides a care facility or moving the mother in with one of the adult kids.

There is the 24-hour caregiver option if that's a possibility. If a person can stay in there home with help, they have a right to.
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Well, my mother lives in MC, she is very active, attends activities, goes on bus trips and has made new friends. She is 98, been there for almost 4 years and loves it, she is no longer isolated, she is independent.

My stepmother is in MC, declining at a rapid pace, yes, she has no independence as she does not have the mental capacity to care for herself. She is well cared for and independence means nothing to her.

I look at both situations the same way, it is no longer what they want, it is what they need.

Not making an informed decision is not the answer, that is why you are all anxious and stressed. Why not tour some facilities and see what actually goes on.

Don't super impose your analysis of what she is missing on her and if she has dementia her thoughts are not rational in the first place.

Good Luck!
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MeDolly Nov 1, 2023
Oopps....my mother lives in AL. My typo!
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Of course no one wants to leave their home. But if you can no longer maintain your home or care for yourself you really don't have a choice. It is not fair to expect others to tie themselves in knots to allow you to age in place. If you want to age in place then it is up to you to set up what is needed when the time comes and not expect others to just make it happen for you.
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Debmiller Nov 4, 2023
I couldn't agree more! My husband (early onset Alzheimers) refused to plan for his care and clearly believed I would "just make it happen". I regret not taking a stand at that juncture. Hindsight is 20/20. Now I have a new grandson in another state that I can't visit as I would like. I have lived with M.S. for 35 years and now I am stuck with managing things for husband. I will be taking husband to see his first and only grandson once--next week. After that, I see MC in his future. As time has passed living with this disease I have come to understand there are not any good solutions.
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It appears that for the immediate now, you have decided to keep her in her own home. That is perfectly okay. I hope someone is watching her to make sure she doesn't accidentally leave the stove on and burn down the house, or that she falls and no one is there to help her in a timely manner.

There is NOTHING that says that a dementia patient can not stay in their own home. As long as someone can safely stay in their own home and the POA agrees, great, let them do it.

In my case, I moved my mother because 1) I was getting burned out, short tempered and all around just being a mean, nasty human and 2) It was a sanitation issue (however, probably not as bad as it could be) 3) it was more cost effective for her to move into a managed care facility.

However, everyone is different.

If your Mom, and her POA are okay with keeping her in her home, GREAT, let her stay there.
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One of my grandmothers had dementia in her late 70s back in the 1980s. Her oldest son had POA and his wife immediately decided to put her in a NH (the closest one). It was an old repurposed 1940s hospital. Just 2 hospital beds per room and a hard chair. No common areas, no couches, no activities. I don't even think they had a dining hall, they brought trays to the residents rooms. It was clearly not an appropriate placement. It broke my heart, and she lived into her 90s.

Fast forward to the late 1990s when my other grandmother got dementia. We felt like the OP. Living home was at best isolating and at worst dangerous, but we felt a NH would be worse (not knowing that memory care was an evolving concept). I was about 30 at the time and was making decisions that my mother should have been making.

Grandma neither wandered off nor burned up the stove. She was eating canned goods right out of the can. It was very sad. The deal breaker (which I’m learning here is the deal breaker in almost every situation) was toileting. She got sick and couldn’t get to the bathroom and started peeing into old bath towels and worse.

We (my husband and I) ended up calling 911, and then having her released from the hospital into a NH, which had a dementia unit. It was almost as bad as the old hospital. Much more nicely furnished, but they drugged her to the hilt, to where she couldn’t even speak a coherent sentence. She ended up having a stroke, and there was a class action lawsuit that found the new antipsychotic grandma was on caused strokes. (My mother didn’t participate in the lawsuit, which would have only required minimal information).

I know this isn’t helpful and I’m just getting it off my chest. I’m coming to realize that I have felt responsible for my elders since I was a kid. Many here have questioned my decision to care for mom in her home, and keep warning me that it will end badly. But my NH experiences have been pretty bad.

As far as “ice cream shop with other residents, the Christmas parade downtown, shopping jaunts, movie trips, and so on. That's what assisted living and/or memory care is like” I’ve never seen anything like that near me. I HAVE seen nicer facilities than my grandmothers experienced, but unfortunately my mom would probably end up in the same facility as my 2nd grandmother, because it’s close enough to visit often. But now that I’m much older, I would have a lot more say on how my mother is treated.
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sp196902 Nov 1, 2023
I would rather put my parent in a decent facility instead of a crappy one even if it meant I couldn't visit as often. Sometimes you just have to choose the best option and move forward.
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