Mom prefers to lay in bed all day.

Hi Mandy,

Is she getting up to go to the bathroom?

I wonder if she's not able to know that she's made a move to your home, and is inclined to stay in bed because nothing looks familiar? Plus the disease removes a person's ability to initiate multi-step tasks, and people lose touch with all the things that used to cue them to do things. Perhaps she's already challenged by an unfamiliar environment on top of the loss of executive ability, and she's making a choice that feels safe for her. My mom also hit a stage where she just wanted to be left alone-that was late 5.

It can't hurt to get her moving a bit like you've been doing so she keeps up some kind of muscle tone, as it will be easier for you to care for her if she retains some mobility. As well, if she falls, which is usually inevitable, she may be able to rally from it better. You might want to talk to her provider about her possibly being a fall risk and see if you can't get her set up with some PT.

Is it possible she’s perfectly content, and it’s bothering you more than her? She may not have the ability anymore to initiate activities and may have apathy characteristic of dementia. If she’s been adequately trialed on antidepressants, maybe you will have to accept this is her level of functioning? She will obviously develop poor exercise tolerance and muscle atrophy but you may be trying to fight an impossible battle here. Maybe others will have additional perspectives or suggestions.

I’m sorry—I don’t mean to imply at all that the whole situation isn’t incredibly frustrating, sad, and heartbreaking. It is. Sending you comfort 💕

She sounds like she's where my mom has been until fairly recently. It's frustrating but, short of parking yourself on top of someone in the later stages, it's going to be hard to keep them engaged. I think that as my mom's physical abilities slipped she didn't want to challenge herself because the disease progression set her up to fail, and I can't blame her for that. The world definitely closes in. I went the 'let her be' route, since she seemed content. Now after a fall and broken hip I wonder if forcing her to be more active would have helped with rehab, but in reality she got another tenacious UTI just before she disharged from rehab back to her MC that's pushed her further into stage 6 and a vicious cycle of loss of function → Increased episodes of UTI → loss of function. And frankly, she's in her mid-90's and lost the ability to retain any information. When she made the move to MC forcing her into situations that she wasn't interested in seemed a bit much. She spent a lot of time in her comfy chair playing on her ipad. Doesn't make me feel any less guilty and try to second-guess every decision. I honestly wish she'd be able to die in her sleep, but it seems like this will drag out just chipping away at her abilities and function. It's hard to watch.

I think that it's great that your mother has had the ability to tell you she has no regrets. She must find you such a comfort. It's a horrible disease that removes our loved one's autonomy and leads to a lot of anxiety and second-guessing on the caregiver's part.

@mandy_r

Dementia comes with many losses beyond memory.

For my dad, who also had mixed dementia, inertia and apathy were a big part of how his condition manifested. It would not be an overstatement to say that the man wore out 3 couches in the middle and late stages of the disease. In the middle stages, he perched on one end of a couch where he watched TV or tried to read (he could decode but not retain what he read) and took all his meals. My parents split the year between MD and FL until after he was diagnosed and he moved back to my area. By this point he was late stage and would recline, attempting to eat and drink in this position and growling when mom tried to get him to sit up.

Mom, too, worried about this inactivity being "not good for him". But at the end of the day, your mom, like my dad, has 2 terminal conditions. If feels weird, I know, but if your mom is settled and comfortable you are rocking this caregiver gig.

HB