Mom prefers to lay in bed all day.

mandy_r

My mother has moderate stage Alzheimer's and Vascular dementia. I have been caring with her since March. Before she came to live with us, she tended to spend a lot of time in her bedroom. Now that she is living here, she prefers to spend all of her time lying in bed and just says this is what I like to do and this is where I am comfortable. I have tried all the things and have at least tried to get her out of bed for two meals a day, so that she can at least get some steps in walking to the kitchen. I know this is not good for her. I am back and forth between just keeping her happy, safe and comfortable or being stern with her all the time to get out of bed. I should add that she does have bad knees as well. Open to any words of wisdom or advice.

Emily 123

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.

mandy_r

https://alzconnected.org/discussion/comment/229244#Comment_229244

Hi Emily,

My mom is incontinent, so she wears a brief at all times. She does not feel the urge that she needs to go. I have a hard time getting her to the bathroom during the day because she says she doesn't have to go. It is a constant battle. I explain to her that she needs to try anyway. Or she will say she was just there…in her mind I think she really thinks she has but hasn't.

I do think you are right about her staying somewhere that is familiar to her. I also think it is because she feels confused a lot and so just keeps to herself. We actually just got done with some PT and OT. I thought that would help with her wanting to get out of bed. I feel like we are back at square one.

She has just basically given up on enjoying any part of life. She is on an antidepressant, and we have tried others but nothing changes. Thank you for your insight. I appreciate it.

housefinch

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.

mandy_r

https://alzconnected.org/discussion/comment/229252#Comment_229252

Yes, I agree all of what you said is more than likely true. I guess the hardest part is me trying all the things I know she needs to be doing and her not wanting to help herself at all. Which, I know some of this is from the disease. In the end, I just want to know I did all I possibly could. But, I also want her to be happy and content. She could have many years of life left, but he has said many times over that she is ready to go and she has no regrets in life. I appreciate your insight. Thank you for that.

housefinch

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 💕

mandy_r

I appreciate your insight and didn't take your response like that at all. Thanks again.

Emily 123

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

Your story sounds very familiar to mine. A UTI is what landed her in the hospital and resulted in rehab and during that time, we decided it was best for her not to be living alone anymore and moved her in with us. Another hard part is my mom is only 80. But, she feels and acts as if she is in her mid 90's. Thank you for sharing your story. It helps to know that someone else knows the situation and how you may be feeling. Even if I am second guessing every decision!

harshedbuzz

@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

mandy_r

https://alzconnected.org/discussion/comment/229561#Comment_229561

Thank you for sharing. I am noticing this seems to be a common trait. I appreciate your feedback. This is such a horrible disease.