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Two months ago, we moved our 84 yr old sister into a reputable Asisted Living Facility. She is a widow with no children and she is intelligent but has dementia and paranoia, which are progressing. I lived with her for a year to help her after she hurt her back but I couldn’t stay forever. She thinks family is stealing her money, etc. so we were not confidant she could tolerate strangers in her home. After her second fall at home, we moved her into Assisted Living.


My sister is very unhappy at the Assisted Living and only wants to go home. It is a “jail” to her. So hard for her and us. Her mental decline is very obvious.


The AL facility just told us today that they need to move her to Memory Care or we’ll have to hire a 24 hour sitter for her. She is confused and wandering at night. They found her near the front door one night. They said she requires Memory Care for her safety or a 24 hr sitter.


I think she will hate Memory Care even more. The part of her that is still intelligent will know she is locked up and she will be embarrassed to be there. Her bedroom will also be a very small room and many of the residents appear non-communicative.


Hiring a 24 hr sitter at the AL facility wouldn’t work financially.


I’m distraught. Any experience or thoughts appreciated.


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You have stated that your sister has been placed in a “reputable” facility, and you have stated several reasons why her family, as loving caregivers, felt that her placement there was necessary.
In a situation almost exactly the same as yours, a psychiatric evaluation by a well trained geriatric professional revealed symptoms of cognitive loss in our LO that we, as family, had not even considered when she was placed in the facility in which she now resides. A recommendation of a very modest dose of a calming medication proved extremely helpful to her.
Her process to the Memory Care floor was so much like your sister’s that the comparison is almost shocking, and our fears were virtually the same as your fears.
My relative had a significant fall history, was a bright, well loved and respected member of the community, began having significant issues while at home with memory loss, paranoia, wandering, severe confusion......
We actually had suggested that we would responsible for hiring a 24/7 aide to shadow her in an area of the residence that was less restricted, but after thorough consideration of all alternatives, had to agree with her truly compassionate caregivers that a “restricted”, locked floor was the best option to provide for her comfort, and most important, her safety.
As to being “very unhappy” it has been my observation that there were indications through my LO’s long life that she was not a particularly “happy” person. Family members visit her at least every other day, and her demeanor, if considered as objectively as possible, is fairly close to about what it was when she was home.
She has some very sad incidents with me, as I believe she and I share one of the last links to her earlier life. This past Saturday she was VERY angry that I refused to “take her home”, but even in her anger, she acknowledged that she wished me no harm for perpetuating her discomfort. When this happens, I have come to learn that she will have forgotten all about such incidents by the time I next visit her.
So a couple things about your observations about your sister- whether other residents communicate or not, dementia is so difficult to predict that your sister may not care at all that some or all of her fellow residents are non-verbal. My LO views the idiosyncratic behavior she sometimes sees with bemused disinterest.
Try to consider the fact that what you are thinking she will think may not be how she actually responds, especially since you can observe deterioration in her overall mental circumstances. Always bear in mind that at this point, her safety is paramount. Painful falls that were weathered in a previous stage of life may now become devastating.
If you have confidence in the staff who are responsible for her care, consider their input and work with them to support what may not be able to make her happy, but may be able to keep her at the best level of health and welfare possible for her unique circumstances.
Being “distraught” is a fact of life for loving caregivers. I wish with all my heart I could tell you something different from that, but I sometimes feel as though I wish I could give her back the mind she’s losing, and knowing that I can’t causes me Indescribable distress.
If we truly love them, we continue to make the terrible, impossible-to-make decisions, hope those decisions are the best to which we have access, and continue to love them at every moment we are with them.
Sending you positive thoughts and courage.
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rocketjcat Oct 31, 2018
What a beautiful response. You have summed up my distress better than I could have.
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Very seldom are residents of these facilities happy to be there. They all beg to “go home”. In my mother’s case, “home” was with her mother and father back in the 1920’s

I believe that, for your sister, you need to look at the big picture. She has dementia and paranoia, and unfortunately this only gets worse with time. Sadly, she will eventually come to the point that she will not know where she is st. However, if she is in the locked unit, she will be safe. These units have smaller resident populations and more staff to care for them.

Facilities do not suggest that a resident be transferred to a locked unit without good reason. My mom was angry as well when we made the decision to move her, bit like your sister, she was angry from the day she realized she was in a facility. This is difficult on everyone involved. Reassure her there is no reason for her to be embarrassed. The staff is used to dealing with these emotions and they will help her get through it.
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As she declines she will need more help. She will need more supervision.
The saying that she "wants to go home" is common and often does not mean "home" it means she wants to go to a time when she was well and felt safe.
I think with a Memory Care Unit she will feel more insulated. She will not have a huge building to wander, to get lost in, she will see the same people every day. She will get to know the halls and the people and this will begin to feel comforting and she will get to know the people that are in that unit and the people will get to know her and her "quirks".
What may seem like confinement to you may not to her. As difficult as it is to accept this will continue to decline and she will need the more insulated life in Memory Care, with people that are used to working with "broken brains"
Keep in mind that when you see a small room that is all you see, what she will see and get to know will be "her" space and she will get to know and be able to remember all of it, where the bathroom is, where the light switch is, where her dresser is.....Large spaces get confusing it takes a lot of time to commit things to memory when your memory is not working.
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AnastasiaT Nov 3, 2018
Very well said! 💜
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The Memory Care unit the ALF is proposing is part of their own facility, is it? - also run by them?

Don't feel restricted to that choice. Looking at a website called www.alzheimers.net I can see that there are many specialist dementia care providers in Virginia; and given the range of mental function that your sister retains she may do better - by which I mean be happier and better supported - in a dedicated environment.

The thing is. In a standard facility, even a good one, that offers continuing care, dementia is treated as a regrettable progression. In a specialist facility, living well with dementia is what they're *for*. There can be a completely different approach and different mindset. Your sister, being aware, might be their ideal kind of resident.

I don't want to raise false hopes and I admit I have no idea of what the state-of-the-art is like in Virginia, but I do urge you to keep looking.
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I very much agree with getting an evaluation by a geriatric psychiatrist to see if her paranoia and agitation can be treated. If meds help, you then need a thorough needs assessment to see what level of care is best for her, going forward.
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Peachtree Nov 3, 2018
I spoke to her geriatrics doctor last year about the paranoia and he said he would not recommend medication unless she became aggressive, etc. because of the side effects. He didn’t specify what side effects but my sister later said one side effect can be a greater risk for falls.
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After working with dementia residents for 8 years, that is the next step, especially if they are confused and wondering. When the dementia is mild and can be handled, they will often be allowed in AL for a short time but dementia gets worse, not better and eventually the smaller home environment with their own living room, dining room and bedroom right together works better because they cannot find their way around on their own and they get confused more and scared.
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People with advanced dementia - those who are wandering and having other safety issues - should be living somewhere that can keep them safe. Specialized communities are being designed and built for people with dementia where they can live safely and with dignity. Look up "dementia village".
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AnastasiaT Nov 3, 2018
From what I've seen, aren't the villages really expensive? Personally I love the idea, it sounds like Heaven on Earth, really...but the cost of the two that my husband and I looked at were really costly and now I can't even remember if they took insurance.
Well, I'll look it up again! You did suggest looking it up! I'm new here, don't mind me! 💜
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Clearly, her level of health has declined. As a result, she needs to be moved to a higher level of care. It is in her best interests to do this.
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No matter where you put your sister she isn’t going to be happy with it since it is not her “home” and even if it were, it may not be the “home” she was remembering. The important thing is by moving her to the memory care unit is that she will be safe and not be able to wander off. So many dementia patients die because they wander off and aren’t found until it is too late. I care for my father and have put locks on all of the yard gates so he can’t get out but I still worry that he will. Now that winter is coming doorknob covers will be put on so he can’t get out or a lock placed where he can’t see it. These are the things a memory care unit take care of so your sister remains safe.
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Your sister is probably too much care for AL. It's a difficult decision, but it sounds like the right one. Are there other MC facilities where you live? -- You could move her to a different facility.
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