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rockyroad40 Asked August 2021

My sister was lied to to get her in assisted living. Can anything be done?

My sister has some dementia and her children thought she should be in assisted living.


She was lied to when they took her to assisted living. She did not want to go and told her children that. They ignored her wishes and left her there.


She feels like she is in a cage. Doors are locked so she can't go outside. And this is supposed to be assisted living?? When she tells the staff she wants to go outside, they just say "oh, you don't want to go there" and don't give her any reason why she can't go there. I have offered to stay with her in her house so she can enjoy her cats and other animals & birds outdoors. Her children refuse to listen to me and say I am making every thing up. The children did not answer me when I told them I would stay with her in her house. Can anything be done about forcing her into assisted living against her will? She is so unhappy.

BarbBrooklyn Aug 2021
RockyRoad, welcome to the forum!

Is your sister in Assisted Living or Memory Care? Memory Care units are generally locked to prevent folks from wandering. Do you know if this was an issue with your sister before she was admitted?

Have you visited your sister and observed her and her environment? If you are hearing all this information solely from your sister with dementia, you might what to corfirm it with a visit.

cwillie Aug 2021
Unfortunately many people who come to the forum have had to trick their loved one into receiving proper care because they are unable or unwilling to recognize the need and plan for the future. The sad reality is that living in memory care sometimes CAN feel like living in a cage, but the other sad reality is that people with dementia can not be trusted to live on their own and memory care is often the best option. Your offer to stay in her house would mean you would have to give up your own home and possessions and become a permanent guest in hers, and it's likely your relationship would suffer because she would be the queen bee despite no longer having the cognitive ability to make wise and prudent decisions. I think the best way to help your sister is to encourage her to look for the positive aspects of her new home: meals, housekeeping, activities and the possibility of companionship.

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Beatty Aug 2021
I make no observations on the OP - let me make that clear.

But I have observed some caregivers (especially nurses!) who have a tremendous section of themelves ready to give - have higher than average degrees of empathy or duty. A 'calling' .

I've also observed sometimes this can override other things eg: on a scale from mildly overriding other's requests, to shutting out some common sense, right up to disregarding other people's points of view, wishes or values. At best: caring and thoughtful, at worst: bossy & controlling.

Do these folk suffer more from F.O.G? (fear, obligation, guilt). Do they place it on themselves?

Case 1 Neighbour RN. Takes over care for MIL (severe ALZ). Works nightshift so can be home to 'care' in daytime. Was a known wanderer but family would not consider a locked memory unit. Result: MIL hit by car when escaped out wandering.

Case 2 Guardionship application. RN wants to move Parent in to care for 24/7, will retire now & not move with her DH as planned to seachange home. (So enforces own marriage separation). Wants to bring Parent interstate - accross country so that 'family' can look after her instead of AL. Family meaning HER only despite this taking Parent away from from ALL other family, kids, grands, greatgrands. Result: Guardianship denied. Better for Parent in AL, in local life-lived town, surrounded by 95% family who constantly visited than in new city, different climate, only one offspring & family, barriers to other family being able to visit.

Case 3 Daughter RN puts up hand for all care duties, despite having own health issues. Then expects & bosses sibs to share workload. Sibs decline, makes relationships tense, visit less. Parent becomes reliant on only this one daughter, reducing social connections. Result: codependent.

I could go on.. probably bored you enough already 😴

Just keep asking yourself everytime WHY do I want to do this?

MJ1929 Aug 2021
Stop interfering in what was likely a heartbreaking decision for your sister's children to make. I doubt you have the full story as to why memory care was needed.

JoAnn29 Aug 2021
Liked what Willie said.

You really have no idea what your sisters children were going thru. Dementia has no rhyme or reason. One day the person seems "with it" the next day in their own little world. They can no longer be trusted to make informed decisions. Your sisters needs have changed. Of course she wants to go home but that is not possible. She needs to be supervised 24/7. Her children have their reasons for not doing the physical caring. Work, children, not caregivers. Maybe your sister was neglecting her cats.

I agree, you need to help her adjust not question her children. Even if in a lockdown situation. There must be an enclosed garden somewhere where you can take her. Moms AL was square with a garden right in the middle. There were benches, chairs and tables. Same with her NH and residents came in and out.

Caring for a person suffering from Dementia is not easy. They are too unpredictable. They get worse in late afternoon and wander at night. Your sister will adjust. It will become her new home. To take place of her cats, maybe find a stuffed one. My daughter had one that people thought was real.

Lvnsm1826 Aug 2021
Think about this. You know how you hear about elder abuse in diff places. It also happens in one's private home. A person is so burnt out with the parent, they just want to wack the person. While, many individuals hold themselves back, there are some who do it. They can't take it anymore and scream or hit the elder. It's horrible.
--
Self sacrifice to help our parents is a Virtuous thing and many are amazing at it. 🙂
But at a certain point, it becomes too much. And professionals need to take over.

KNance72 Aug 2021
I would speak to her healthcare proxy and ask what her primary care physician or neurologist said about her diagnosis . Until you spend some serious time with her you may not notice her symptoms . I am much younger and am exhausted in taking care of my Dad . I would never want to abandon him but I know there maybe a time he needs professional help 24/7 .

Taarna Aug 2021
Whoever has power of attorney gets to decide on where your sister is cared for when she is mentally incompetent. It sounds like she is in a memory care unit and not assisted living. This may be the only way that her children can pay for her care.

It might be better to visit your sister frequently so she can enjoy whatever you bring in from the outside world.

TaylorUK Aug 2021
And if you are taken ill or her dementia increases beyond not even remembering her own children's names, what if she becomes aggressive.
Sorry but I think that with the very best of intentions you are living in cloud cuckoo land. No one wants to watch a loved one confined for their own safety and being upset, but how exactly are you going to cope with soiled linen, needing you 24/7, refusal to eat or do anything in the way of daily tasks as she gets worse. You may manage now - although some dementia doesn't seem to describe the deterioration your sister has already suffered - but the future will only get worse and then finding her a place may be much more difficult.

SacFol Aug 2021
In addition the Teepa Snow YouTube videos recommended by many, I saw a PBS BBC film last night, Elizabeth is Missing, that depicts and brings home the vagaries of having a family member with dementia. While fictional I believe, it really was well done.

“Elizabeth Is Missing is a television drama film directed by Aisling Walsh, adapted by Andrea Gibb from the novel of the same name by Emma Healey. ... It stars Glenda Jackson as Maud, an elderly woman living with dementia who struggles to piece together a double mystery. Wikipedia”
JoAnn29 Aug 2021
Yes, I saw that and it was well done.
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