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!
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.
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.
The Al cannot force her to do what she doesn't want to. Good thing is she likes getting out a couple of times a week. My Mom enjoyed being in the common area or walking around inside the AL. She enjoyed the entertainment they supplied. So I really have no suggestions. Just that I don't think you can do anything to help her.
Mom on the other hand is fairly a solitary soul. Life with dad was no walk in the park and she was often the brunt of his put-downs (he was definitely passive/aggressive). So besides being a loner she has self esteem issues, but is also very opinionated. She doesn't have dementia but after dad died I told her she had to get out and socialize to help stave off dementia - she does have MCI. She was actually getting out a couple times a week doing some activity or other and then COVID where at times the residents of her AL were locked down in their apartments for weeks at a time. She keeps herself busy reading, doing jigsaw puzzles, suduko and word search puzzles; while I'm now able to visit again - but I'll be happier when I'll be able to take her back to the library, out to lunch and shopping.
Best of luck with your mother.
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.
Good luck to you and your family.
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!
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.
My mother lives in Memory Care Assisted Living and they will not allow her to stay in bed past 9:30am unless she is ill or on hospice. She has to be up and dressed and ready for breakfast by 10 am every day, so the aides make sure of it. If she hides out in her room, they come wheel her out of there and into the activity room to socialize with the other 20 residents. It's how they run things at mom's place, which is a good thing. After dinner, the residents can stay in their rooms or come into the common area to watch a movie or do a puzzle. My mother is prone to depression and feeling sorry for herself, so being alone intensifies that. This is why I'm glad the MC has the rules in place they do. But for your mom, if she's content, why fix what isn't broken? You do get her out 2x a week so that's a good thing.
Wishing you all the best.
I think I made her feel guilty but she still didn't set foot out of her room if she didn't have to.
i feel your pain and know the frustration and wish I had and answer for you.
Best wishes
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.
My thoughts are definitely along the lines of Margaret’s - connect her with someone or something where she’s needed, not being entertained. My request to mom’s MC was to find ways to give her a ‘job.’ No one ever bothered, then a few weeks ago one of the directors told me triumphantly that she got mom doing a task for her in her office and she loved it - yes, no surprise. It’s a shame there can’t be more outreach specific to what each resident needs but they can’t when they’re all just doing the state’s staff minimum.
Ask the directors to look for ways she can be enlisted in the business of the place - as a favor, not as an ‘activity.’ And yes, you can keep working on your emotional reaction to it all. :) Ostensibly our day will come too, she doesn’t own this condition in life. Best wishes! 💐
I couldn't believe it when I read this, as I could have written it! The only differences are that my mother has given up walking because of vertigo, and we don't know yet if she has dementia (it's in her family, so likely, and the doctor is supposed to be organizing tests to check). Mum seems to have NPD and has always been lazy and reliant on others, and of course lockdowns have led to her using her brain less and less, so her short-term memory is now poor.
Even before COVID, Mum wouldn't go to most of the social activities put on and scoffed at those residents who chose to play Scrabble, etc. She is now complaining about having nothing to do, no one to see, nowhere to go, yet when the hairdresser (someone she *saw*!) asked if she had made any friends in her AL, she said she 'doesn't do friends'. That's true - she makes no effort to keep up with the few she has, even moaning when they write to her because she feels obliged to write back!
If anyone suggests that she do some mild exercise to help her fend off further blood clots and keep mobile, they are 'bullying' or attacking her. Trying to get her to do things for others wouldn't work either. She used to be really good at knitting and sewing but, despite not having arthritis, she can't be bothered to make anything even for her four great-granddaughters.
As a classic scapegoat child, I have spent the last four years trying to help a woman who clearly doesn't want to help herself; it is unbelievable to us that she would rather sit all day and moan, but that seems to be the case. Maybe she feels that complaining is the only way she has left to make a mark on the world; how terribly sad, and extremely stressful for us who feel morally obliged to try to help her - at great cost to my mental health and my relationship with my husband.
We too are hoping that the easing of lockdown restrictions will at least allow more visitors, to cheer her up a bit if possible and ease the load on us, her 'support bubble'!
Dementia patients tend to do better with structure in their lives = routine. Your mom's current routine is to stay in her room. Ask family, friends, members of your faith community... to visit her and do an activity with her. Ask the staff to wheel her out of her room after breakfast to "try" an activity. If she says she is "done", they can wheel her back to her room. I am hoping that enough "tries" may lead to her "staying".
Bribe her to go.
Tell her she has to go.
Go with her.
Prayers
This is true. My mother wasn't in a NH. The facility is IL/AL/MC. To get to the MC area, I had to walk through the entrance area, past some of the AL/IL dining area and take the elevator downstairs.
I've met many interesting people along the way AND in the MC unit. In the MC, one gentleman was a former judge. Another was an author of children's books. One woman almost made it to 101 (and had lots of stories to tell about kids, grandkids, weddings, great-grandchildren!) Anyone who was willing to talk with me, I would engage with them. I've also chatted with several who were in the foyer or waiting for a meal. One man was actually a few months older than my mother, still very much with it, both physically and mentally! I do miss interactions with these people. The virus shut that down, and now that mom is gone...
Sometimes it does take just the right person. One staff member who especially liked my mother would tell me how she would try to engage with mom, in her initial time there. She said mom would just close her eyes, basically shutting her out. She was persistent and won that battle! She became mom's favorite person there!
For anyone having this kind of issue, esp those who are working full time and can't be with the LO often. Maybe try an agency that hires out companions? I would work closely with them and try to find someone who would have interests similar to what the LOs were in the past and also have a similar or complementary personality. It might take a few tries - give each one some time to try to establish a relationship - but perhaps one or more might find a spark and/or activity they can do together to get them a little more engaged, even if it's just to talk a walk outside (now that nice weather is returning!) It likely won't hurt, but if it can help, why not?
You never really know until you try. I love jigsaw puzzles and another resident did too. I would sometimes work with her on them. I would get mom to come over and join us at the table. To my surprise, she would actually start moving pieces around and actually managed to not only find some that went together, but also locate one that I was looking for! My mother NEVER was interested in anything like that! Another time when I arrived for a visit, she had torn out a picture of a little white fluffy dog. She announced she was going to ask YB to get one of these for her. ??? I think WHAT? Yes, we had a few dogs along the way, some gerbils, mice, but mom was NEVER EVER a pet person. When I would lose a cat, she'd say don't get another. THIS woman wants a dog? Seriously? The facility allows pets, even in MC. In her case, bad idea. She wouldn't have a clue how to care for it, feed it, take it out, etc. The poor thing would likely starve to death! Unless staff took care of it, but then what's the point?
On the other hand, things my mother used to do, she lost interest in. She would, at various times, join exercise classes, to trim down. When they were doing light exercise, they tried to get her to join. I was there and heard her say "I did that for years. I don't need to do it now."
So, you never know what or who *might* spark an interest. We can only try and if it pays off, great! If not, well, we tried.
Like for lunch, shopping, visiting family?
A lot of times an elderly person doesn't want to be part of the activities because they aren't interested in them.
Would it be possible for her to have a hired companion who would take her out a few times a week?
I did companion work years ago for a few people who lived in AL. Most of them had some dementia or mobility issues, but none of them were so bad off that they couldn't be taken out in public anymore.
We'd go shopping, out for lunch, bingo, all kinds of places. I had one old WWII veteran who I would take to the VFW for drinks with his pals that he met there every week.
See if the AL your mom is in will let you hire a companion for her.
I know that years ago Medicare and Medicaid paid for some hours of companion service. They may still. If they don't, hire one through a care website. You can check them out personally and negotiate their pay too.
It might take a few tries, for each companion. If they don't "click", try another! In my comment I mentioned how one persistent staff member kept trying to engage with my mother. She'd close her eyes and shut her out. But, persistence won! She became one of, if not the favorite person for my mother!
Too funny! Not aware of who what or where, but knows this much!
Out of the mouth of babes and dementia residents!