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My Mother is in assisted living now for about 3 years and has dementia, with her short term memory pretty bad. She is able to be physically mobile but chooses to lie in bed all day. I have been told that dementia leads people to seek comfort and security which often means the bedroom.


She won’t engage in the activities there and thinks they are silly. She won’t make friends. Yet she complains of having nothing to do and feeling useless. She won’t help herself by choosing to engage. I work full time but even pre-Covid when I was there to visit I couldn’t get her to go to activities there with me. I have left her mending to do per her request, or knitting projects for the homeless but she is not self-directed enough to complete these tasks which she is still able to do. She always says “thanks, I’ll do it later today’. and never will as she forgets. We have her in individual PT to help retain mobility, and have asked them to try their best to get her to group PT and not give her a choice. That is the problem - they can’t make her if she says no, which is what she does if she pins them and asks “does she have to do it”. She is a rule follower and doesn’t give them trouble if something is not required, but intelligent enough to ask that question. Her days are long and boring and it breaks my heart. My logical mind says “well, if she won’t help herself...” but a dementia mind is not a logical mind. Thanks for any thoughts or encouragement. We can get her out now 2x a week at least!

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She's knackered.

She herself doesn't understand why she feels so unable to get up and get moving. She herself genuinely thinks a little light mending would help to pass the time. She would no doubt be the first to agree that idleness is next to ungodliness, and she herself, when thinking or talking about her typical day, thinks it must be desperately boring and tedious.

But while the inner spirit is willing, the flesh (and especially the heart and brain) is worn out, dog tired, and content to nap in its nice comfy chair.

Exercise will do her good, the PT should be offered, but there is a fine line to draw, and it gets increasingly tricky to find.

Can they link the PT to a purpose, perhaps? E.g. there's a lot more point to getting up and using your walking frame if you're going to lunch, or to look at something in the gardens. This morning I - not tricked, let's say encouraged - a client to walk the long way round from her stairlift to her armchair partly to loosen up her legs a bit, and partly to get her engaged in her breakfast prep (I haven't got her on my round tomorrow or I'd work on step two - get the milk out of the fridge).

But whatever ruses you come up with, remember that all of this team effort is intended to be for her benefit. Your logical mind would be kinder if it told you "if she's happy, I'm happy" - and allowed her happy to look different from what it used to when she was firing on all cylinders.
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There is likely little you can do to change the fact that end of life is not easy on elders and there is honestly loss after loss after loss. My own brother, with early probable Lewy's dementia "made the best of" --in his words--assisted living. Most were very much more impaired than he was. Luckily he was already of a solitary, almost monk-like personality and he enjoyed puttering around, cutting roses for dining tables, could still read and shared books with some, etc. In general, other than a few activities I found most there to keep to them selves and to turn more and more inward. I think it is normal. I wouldn't push her at this, the end of her life to change.
Is this behavior out of character for your Mom. Was she in some prior life very very social?
This isn't always a "fix it " situation. Your Mom is relatively lucky with involved and loving family and a decent place to live. I would be easy on yourself and concentrate more on your own life, and how you will live it moving forward. I sure wish you good luck.
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sparkielyle Apr 2021
I am so sorry - Lewy's is a difficult path for sure. I guess daughter guilt will always be a bit present, but with counseling I do put it in perspective. She is/was such a fantastic Mom. Just breaks my heart.
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Sparkielyle, you're doing the best you can. I'm facing many of the same issues with my Mom, who suddenly had delusions and after rehab, had to be placed in Memory Care 5 months ago. After much research, I found the best place and in addition to 24/7 care, they have all of the amenities you could want, with activities galore. But she won't join in, is very negative, and constantly complains and criticizes the other residents and staff as her delusions and paranoia continue and she is more frail and confused.
The staff and I do the best we can to reassure and redirect, but it doesn't help much or for long. I usually take her to my home once or twice a week (I work from home and help with grandchildren), but I'm not sure if that is really helpful in her settling in process. Many here on AgingCare have told me that "safe trumps happy," and I see how that applies to my Mom more as each day passes.
I was hoping she would be happy, but the fact that she is well cared for and safe in a beautiful, clean, and active environment is a great relief.
Now I have to accept that she may never be happy, and know that I have and continue to try to do the best I can for my Mom, even if she doesn't realize it and probably never will. "One day at a time" surely applies here.
Hugs and blessings to all who are doing their very best for their loved ones.
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hugs!! it's not easy.

if you could find something that gives her a spark! something that motivates her!

often it's TV, food...

reading (with dementia) becomes hard to follow, movies, conversations not easy...

but if there's something that could give her joy.
for some people it's petting animals...

you said she can go out 2x a week.
maybe to have fun with some animals?
cute kittens, bunnies, puppies?

hug!
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Countrymouse Apr 2021
Yes yes yes - pet therapy is VERY popular!
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I'm glad that you can at least now get her out a few times a week, as that will give her a change of scenery, and you will have peace in knowing that at least a few times a week she's having some fun, and getting out of her room.
Perhaps now that you're able to spend more time with her, you can sit with her in her room and get her started on her knitting projects, and encourage her to keep going, and even do them with her. And if you don't know how, perhaps asking her to show you how, might spark her interest.
You can only do so much to get her engaged, so please don't beat yourself up if she chooses not to. You're doing the best you can.
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sparkielyle Apr 2021
You also are spot on. I try to do projects with her while visiting if I can. I will keep trying. Thank you for the words of encouragement!
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Sparkie, you say “She really was social ONLY to the extent that it involved her helping others”. Could you see if there is someone else in the facility who you can say needs her help? Someone having difficulty with their own craft, needs more help with dropped stitches than the staff can do? Someone trying to play the piano, but getting dispirited because nobody listens? It might be worth a try, if the staff can give you some suggestions.
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Countrymouse May 2021
I tried that on my mother the second time she went to respite: make conversation with the other residents because they'd like it, never mind if you would or not.

I think I made her feel guilty but she still didn't set foot out of her room if she didn't have to.
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Some people love to be unhappy. Just say something like, "I am sorry you feel that way", Give a kiss and change the subject.

I was married to a man like that. Therapy taught me that I can't make someone feel anything. You are only responsible for what you are feeling and can do. Oh I got a divorce.
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marte48 May 2021
So, he was right - you really didn't care what he thought or felt.
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Same thing happened with my MIL. Short-term memory was shot, wasn't remembering to even eat so we started her out in AL in a nice place but instead of being social like she had been all her life, she just gradually folded up. Then she decided she didn't want to get out of bed, ever. Not even to go eat with the others. We tried everything like you: PT, incentive charts, encouragement. None of it worked. She's in LTC now and other than her memory and very mild dementia, there's nothing wrong with her at 85. She even survived having covid. There is huge longevity in her family so I'm imagining her lying in bed for literally another 15 years. I hope you can come to peace with it, knowing you've tried everything to give her a better quality of life. That's all you can do.
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Funny how you think you're the only one that has this issue until you have a place like this forum where one can see that all of us are on the same ride with our parent / parents. My mother also will not get out of bed. Been almost 2 years. Same issues, not willing to do anything, nothing is good enough in regards too activities. But that isn't new, for the past 4 years she has had that attitude about activities. Tried everything. Only constant is the wish to die. My only concern now is the effects of staying in bed all the time will have on her body. I've done some research and let me tell you it isn't a comforting read. Effecting lungs, blood, bones and mostly mental. But what do you do. Can't reason with someone who has no reasoning skills. I struggle with the why, and the why nots about her behaviour and choice to stay in bed. Kills me. But her life, her body. Whats good in my mind for her isn't what she wants. So I support. All I can do. I visit, we laugh, I help her eat when she struggles and hold her had when she is upset. For a brief time in her day she is engaged and happy. Right now, in these moments thats enough for me. We all say that we don't understand why our parents with AL or dementia do the things they do. But sometime I try to put my self in there mind, what do they see, what are they thinking about when they are staring off into space. Then I realize who am I to try to make them live up to the standard I want for them. Even though it may what is best for them.
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nature73 May 2021
Very well stated. Thank-you!
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I am a power of attorney to someone with dementia - in a nursing home. No matter what anyone does, she insists in being in her bed almost constantly. They will complain from frustration - how else can they rebel at their situation. Don't force her to do this or that - she is not interested and won't enjoy it. Leave her be where she feels most comfortable - in her bed.
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marte48 May 2021
Thank you for speaking on behalf of the patient! All of these forced activities are more for the benefit of the onlookers. It makes THEM feel happier.
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