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My mom has early stage dementia and moved to a new AL home three weeks ago. She knew about the need to move and participated in selecting the new home. Now she is very depressed and wants to return to the old home. She can’t go back because the old place is closing. She was privileged to have the resources to move on her own terms to a beautiful new home. Now she is refusing care and refusing to walk. After three weeks of not walking, she is becoming weak. We all try to talk to her about the importance of moving her body, but she gets angry and tells us to F-off. We can talk her into changing clothes and showers etc. Her refusal to walk is solid. This is life threatening. She could get clots, sores or bowel blockage. She’s a nurse so she knows this. What can I do? I feel like I am helplessly watching her choose life in a wheelchair.


She is on anti-depressants and we have a psychiatrist appt next week.

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Early stage dementia? You may be surprised to learn that her dementia is worse than that, as illustrated by such a self-destructive choice. Just like my mother.

My mother walked daily - we knew how important it was to keep her moving. She was hospitalized for a UTI plus COVID (mild), and kept trying to escape. Then she got mad. Refused to move a muscle ever again. Including her mouth. Ignored the physiotherapists who tried to get her moving again. Tested for everything. A behavioural choice.

She did eventually start talking, opening her eyes and eating again.

In the care home, PTs encouraged her to walk again. She raged. Staff did find her out of bed, in different chairs a few times, but only on her own terms, when nobody was looking.

Now, almost 2 years later, she is still diapered, bedridden and skeletal, with no muscle mass left... but every now and then she decides she’ll sit up and feed herself for a while.

In her mind she walks, swims, drives and is active as ever. She’ll tell you all about her busy days. None of us are about to argue.
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This is so hard. My only thought is that framing the situation as "life threatening" won't work if she's depressed or even just really fed up. In my observation, lots of older people are quite enchanted with the idea of death. (I'm sort of enchanted with it myself!)

So you might instead try to use terms that you think could be more effective: independence (or, more specifically, not having to rely on facility staff to accomplish simple things), regular bowel movements (walking even a little seems to really help with this), ability to get up and walk to table to get.... (think of something appealing that might go on the table; for my mom this is coffee or chocolate).

Dementia diminishes one's ability to act based on cause-and-effect reasoning. It may be that she truly cannot will her self to make the effort to regain leg strength--and that you truly cannot do anything about it.

I wish you luck.
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You are addressing this in all the ways you can. Do be honest with her that the next level of care, going to memory care, isn't going to be something she can love nearly as much as her current place, so that it would behoove her to try to move about and accept this change that wasn't anyone's choice.

She may not be capable of adapting. Her dementia may be progressing, and this loss may be the tipping point. But only time can tell. Allow for adjustment. Three weeks is really nothing in terms of adjustment time at this age, and you will not know if next weeks appointments can help or not.

Be proud you are doing all you can. Much of this is out of your hands. You have made enormous efforts in her behalf. I sure wish you luck, and hope you'll update us.
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I was thinking about this more.
If mom does get to the point where she will not walk it might be necessary to move her to a Skilled Nursing facility. Most AL and MC can not use equipment to transfer a person. And a person that is a "2 person" transfer" is going to be problematic in a typical AL or MC.
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My MIL did something similar. When we moved her to AL she eventually decided she wasn't going to get out of bed or participate in the many great activities and events at this wonderful facility. She was also on meds. We visited her often. She was 5'7" and weighed almost 200 lbs so not easy to get herself out of bed and not easy for use to heave her around in a wheelchair.

She is now bedridden for no other reason than her muscles atrophied from lack of use. We did everything: appealed for extra PT, has incentives, involved the very willing staff... to no avail. She has never had sores or any of the problems you mentions because she's in a good place (not expensive, just good).

To be honest she always did love to be waited on hand and foot and now she has that every day in her LTC facility. The good news is it is covered by Medicaid.

Please don't waste time and money on a psychiatrist unless it is for the meds. She has dementia so her ability to use reason, logic, judgment and empathy are disappearing. We worked with the staff and now my MIL at least will go to any and all activities in her wheelchair. It is what it is.
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I do hope by "AL" you mean Memory Care and not Assisted Living.
Discuss this with her doctor next week and see if an adjustment in meds might help.
Your comment of "she's a nurse so she knows this" is not correct. She may have known it but with dementia a lot that she knew is gone.
If she asks to return to her old house don't tell her she can't.
Tell her ...
"When the doctor says you can go home"
"When you can get up and around on your own we can ask the doctor"
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Dementia in play, moving to a new home is very stressful for someone in cognitive decline.

Have you considered hiring a PT to come in 3 days a week, see if she will rebound with that assistance?

As for wanting to go back to where she was, that is quite normal. She will adjust if allowed to, meaning given time to acclimate without being hovered over by family going there everyday and calling 10 times a day.

Wishing you the best with mom.
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MammaDramma
Sometimes when an elder is moved the dementia progresses.
Sometimes it reaches a plateau and doesn’t change for awhile and then it progresses again.
Not walking can be part of the dementia more than or in addition to the desire to go back to her old home. I have watched my DH aunt go from being one of the most active agile seniors I’ve ever known to being bedfast at this point in her life. She, like your mom will go for a shower, sit in the chair while her bed is being changed but insists she get right back in it. She might eat in the dining room once or twice a year. You are ahead of me in that your mom will go in her wheelchair.
Ask her medical team if she is taking a low dosage of her antidepressants. She could try an increase dose if that is available or perhaps try a different one. Has she been on it long enough to know it has had time to be working?
Sometimes it takes longer for one person than it does another. Ask if she can have physical therapy. DH aunt has it from time to time and it helps strengthen her. Can she see outdoors. Aunt likes her blinds open so she can see outdoors and cooperates more when she can see out. She sees a psych service on a regular basis. She eats well with an appetite stimulate and seems to be happy. She is 97. I accept she is doing the best she can.
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