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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!

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 30, 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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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 30, 2021
Yes yes yes - pet therapy is VERY popular!
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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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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 30, 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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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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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 1, 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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My mother is 75. No dementia yet, but it’s near. My mother is the same. Lazy and non self efficient at all. Gripes that there’s nothing to do when there are things to do. Drives me crazy.
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My 91 yo mom's entire week's 'socialization' is now 90 minutes at the local Sr Center playing BINGO.

That's it. She has refused now to go to the grocery store, sends YB and lets him shop for her. He won't bring a scooter-cart to the car for her (she needs to keep walking, and she only needs to walk 20' to where the cart is parked. But she won't even attempt it).

YB said she needs to make SOME effort, and we all agree. Not in a mean way, but very matter-of-fact. None of us can lift her, she's getting weaker and is falling more often. Dr. says she needs to KEEP walking as much as possible, not staying in her recliner all day.

I can't say she's lazy, but I can say she is just tired. She has brought up to me that she'd LIKE to move into a wheelchair, but I had to tell her that once she did that, she would also be moving into ALF. There is no room for the wheelchair. Same as with a powerchair. She was in the process of trying to obtain another powerchair and I told her that if she got one, it wouldn't really help her, she would be required to move somewhere that can handle the size of the chair.

None of this had occurred to her. YB has accamodated all her wishes to this point, but at some point--with about zero QOL, and being in chronic pain, she has to accept that the level of care she'd require if she chooses to 'step down' in her efforts. No more semi-independent living.

It's sad. She lost the will to work on independent living during covid. She just doesn't care any more. She has ONE friend, with whom she is no longer allowed to 'run around'. (Woman is legally blind and a terror on the roads).

She's probably depressed, but would NEVER take anything for it. Honestly? At 91, we expect nothing of her, but that she keep walking. Once she quits, her whole life will change.
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cweissp Apr 30, 2021
Midkid58 so sorry. My father was much the same at 91 - though he'd been wanting to die for 3 or 4 years by that time. He did however keep walking some - he had balance issues and fell - A LOT! At 91 he ended up in hospital which we all thought was a respiratory infection, It was however his heart with several issues. After he got out of rehab he stated he no longer wanted active treatment. He was worn out. It could be your mother is just all worn out and doesn't want to make the effort anymore.

Good luck to you and your family.
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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 4, 2021
Very well stated. Thank-you!
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