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

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.

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.

Can the doctor still deem her of sound mind enough to give you POA? There are some incredibly selfish & heartless people out there who suddenly become “burdened” with their aging parent who raised them! It is a very sad situation for a helpless person. They actually cut ties with people who try to help because it upsets their ruthless children & they take it out on their parent. I’ve seen it happen twice. Try to get a POA or an attorney to have your sister stay with you.

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.

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.

At your age, can you actually be your sister's hands-on caregiver?

The bottom line is who has POA for your sister’s health? Unless your sister is suffering some type of abuse or negligence at the AL place, I am afraid there is little you can do. If so, see an elder care lawyer to get custody of your sister.

https://www.agingcare.com/questions/this-is-for-mj1929-i-am-not-interfering-i-am-deeply-concerned-her-dementia-is-not-that-far-along-jus-469187.htm

OP responded on another thread.

This is so hard. There are so many levels and ways this can happen. Some are valid in saying that family sometimes has to make really hard choices in their loved ones best interest when they can no longer care for themselves as well for their safety.

But you came here as a concerned sister and out of love for her - I think sometimes things here come off unkind because many tend to forget this isn’t “their” story - and some tend to react as if this is - we all agree no caregiving journey is alike and with that said I think this woman deserves advice if anyone has any on how to make sure these decisions are in the best interest and safety of her sister.
I am unsure without POA how to do this other than to reach out to her regular doctors (whom know her and her health history well) or even help Her reach out to her drs? Ask her if she has a trusted dr that she or you can reach out and ask that it be looked into. Maybe there is someone here who has the same concerns for a friend or family and can give you better advice. I hope so.

We have to stop and try to find a better way to help and support each other and not be so quick to judge as no journey is alike. Maybe her kids did make the best decision for their mom - and maybe kind advice can help this sister understand that better. I just really think we need to find a little more kindness here - this is a support board - life is hard enough - let’s help each other learn and understand this difficult journey - her question could be valid and if it’s not then maybe others can help her understand her sister illness better - best wishes Rockyroad

It's true that every family's experience with an elderly member is different.
It's also true that making the decision to put an elderly parent in a nursing home, memory care facility, or assisted living can be a tough decision for their adult kids to make.

With all respect to everyone on this thread, I'm going to disagree with most of you.

Everybody who's a regular in this group knows that I was an in-home caregiver for almost 25 years to elderly, but not limited to only elderly.
I have in that time had many clients on my service whose adult children simply dropped them off at a facility with no explanation and did not give it a second thought. All many of these clients needed to remain independent and living in their own homes was a little help with things like housekeeping, errands, meals, and someone to check in on them daily after my time with them was up.
The only reason their adult kids put them away was because they couldn't be bothered or have their lives inconvenienced in the slightest way. The ones whose elderly parents made good decisions like getting property and bank accounts over to their kids names years before so they could leave something behind for them or help their grandkids out with college, were always just packed off straight away. Then the kids sold their property, collected the money and just moved on with their lives. I have seen this many times and it's broken my heart every time.
No one should be allowed to deprive an elderly person of their liberty and have them literally locked up because they have some dementia and maybe need some help at home that can be managed.
Rockyroad40 is a retired nurse so this is a person who knows what she's talking about and also knows what taking on the responsibility of caregiver to her sister will be. She's willing to move in with her sister and take this on so should be allowed the chance to try. If it doesn't work out then go for assisted living or a memory care facility.
I think it is absolutely disgusting that her nieces and nephews would put their own mother away like that when her sister, a nurse is willing to have a go at being her live-in caregiver.
And what comes around goes around. Their kids will do the same to them some day and God judge them.

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?

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.

Like I said every story is different.

Kindness and support should be given. Some people are at step one when they come here - so just because many of us are at step 500- 1000 or more and have had time to digest our loved ones needs or illnesses doesn’t mean we can’t bring what we have learned or share the hard parts without kindness and support.

I have seen some posts off and on that come off as anger or judgement - and it could be just the way the it come off in print so maybe be a little more careful before we hit send.

I do hope I have never come off harsh to anyone as I really do respect that I have not walked in anyone else’s shoes. I can share my story and how I got through it. I do know that we have all been in really hard places and we also want some who is at “step one” to really understand the reality of what level care can become. It doesn’t need to be sugarcoated but it can strive for a better delivery.
Every scenario stated here Can happen and has happened. I didn’t say some really good advice wasn’t given - I said kindness -!knowledge and support helps and that some words come off harsh and don’t help people and for sure not at step one and day one. Day one of this journey is scary and hard - I just think we can be better and remind ourselves this isn’t day 1000 for many - it’s day 1.

Personally, I am in total agreement - I believe that is wrong.

People will respond, “only angelic parents deserve care.” Maybe they don’t feel their parent is worthy of time/effort or they have a busy life/career. Maybe they are living paycheck to paycheck. Maybe they fought/lived through abuse/alcoholism/chain smoking or a million other reasons or excuses. (Some angry ones will post and write that this post is “mean” - lying to parents isn’t?). Anyone can make a difference/heal a relationship/be part of a solution. Anyone can turn it around or choose to be a role model or provide payback to the person who made their very existence possible.

The fact that people choose to outsource parent care is logistics, laziness, lack of support, emotional/physical toll, general inability or a million other reasons.

For me, all negatives were far outweighed by positives: love, joy, miracles of sharing even the hard times, small triumphs despite a failing course, and deep companionship. No amount of money, a fabulous job, or appeasing an unsupportive spouse could be worth doing that to my parent.

This typical American treatment, is not surprising. I was a caretaker of my parents and my parents were a caretaker of my grandparents. Most of my siblings, however, would have lied to and tricked my parents and most of my aunts/uncles would have tricked my grandparents also. Anything except for caretaking. Your family is not unusual.

Family caretakers are outnumbered, or there wouldn’t be a nursing home, assisted living and memory care facility around every bend. Most people outsource caretaking.

Can this be done at home? Of course! All the CNAs, RNs, LPNs and NPs, DOs, MDs, are certainly “on-paper” qualified and willing, loving family members with strength and good health can certainly do it. Those with compassion and empathy can do it very well. Lots of times, one CNA is caring for numerous patients simultaneously in a “home.” So anyone meeting qualifications for any of these educational programs can do it for one! CNAs are often true angels, the best of the best.

Some people might write, well, my loved one needs “lock down” but locks to keep our loved ones safe can be installed in homes too —we install all varieties of locks and alarms to keep our stuff safe, after all!!!

This topic is a hot button. Maybe people are consumed with guilt over their own choices and want confirmation that they are doing the right thing so they come through their cell phone to find camaraderie here instead of taking those same minutes to visit their lonely loved ones.

But what about Covid? How could anyone who is honestly missing their loved ones -and complaining about inability to visit too- stand by and leave them trapped, constantly exposed and unvisited “in the name of staying safe” when they could bring them home and keep everyone safer while having those unlimited hypothetical visits they are lamenting about?

You will read numerous threads here, where people who have tricked their loved ones will instruct others to lie and trick their family members too.

Because her kids must have legal and medical POA (or she wouldn’t be there) tread carefully or they can legally exclude you from even visiting.

Tell them that your care will save them money (this will motivate some). Tell them this will take no effort from them.

If you can afford it, hire help so you have breaks when needed. CNAs can help you learn shortcuts and how to protect your back. You will need some help to get through. Over time, her condition will worsen and accept that. End of life will involve toileting accidents, heavy lifting, wheelchairs, uncertainty, lots of doctors and incredible flexibility Before you commit, make sure you are “all in.”

Mary Todd Lincoln was put in an institution by her son and taken out by her sister who cared for her to the end.

Even if you aren’t able to take this on, you are kind for considering.

Wishing you the best. ❤️

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.
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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.

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 .

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”

It sounds like your sister was told she was moving to assisted living, but is in “memory care.” It has been my experience that some aging in place facilities initially move the resident into the “memory care” area for evaluation. Depending on findings, the resident might need less levels of care and can move to “assisted living.” If not, they remain in “memory care.” Also, facilities require documentation from the primary care physician indicating the individual needs 24 hour care. I really don’t think the children lied to your sister. I think they probably needed to make her “safety” a priority. I’m sorry you are experiencing this. It’s a very stressful life change.

Send her to Switzerland

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.

Rockyroad, you can petition for guardianship of your sister. This will give you the ability to do what is best for her.

Go to www.nelf.org and find a certified elder law attorney in your area to help you navigate this process.

I was told by a hospitalist that my dad needed memory care and it just wasn't true. He lived in a board and care and actually recovered enough of his health to move back into the world. I know that I would have eventually been faced with placement, dementia progresses beyond the ability for 1 person to take care of, if he hadn't died from vivid. In a very real way, he was blessed that he got to live his last days on his terms and never had to live in a facility.

For anyone thinking that he couldn't keep himself safe and he contracted covid because of that. Nope, he contracted covid in the hospital. He did just fine until then.

Perhaps this woman is like my dad, to sick to take proper care and now proper care has rehabilitated her to the point that she is well enough to go home.

I hope that is the case and that you find a good attorney to get it sorted out.

If you read the profile you will see the sister is 80 yrs old. The OP is either older or younger. At 71, I know for a fact I could not care for someone. My back would not take it. I don't have the stamina and I don't have the strength.

I agree that the definition of "family" has changed since I was a kid. Back then people stayed close to where they were born and raised. Not so anymore. People need to go where the jobs are. Two people in a marriage have to work just to pay the bills. The cost of living just gets higher and higher.

ACD you made your choices. I bet there are people who would be willing to care for a LO but its just not financially possible. My daughters are single. When I am 85, they will still be in their 50s. I do not expect them to quit their jobs that they need to live to care for me. More and more couples are having children later in life. The average I see is the age of 35. That means when they are 80 their children will be 45. A time in life they are raising children and needing to work. My Mom was 21 when she had me. I have friends that mothers were younger. So for some people its seniors caring for seniors. Some of these Senior children have health problems of their own. And...not everyone is a Caregiver. And there is not always money to hire help.