Leaving her be once in awhile

RunningWorried76

PWD (my mom) lives with me and my family. We remodeled our basement so that she has her own space (bedroom, full bathroom, living area with big tv, etc., lots of space!). You could argue it's even nicer than the rest of the house. If mom is left alone, she will just sit in her recliner and watch tv/listen to music all day. Or worse, she'll just lay in bed. So, 3 days a week, we hire a caregiver, who is amazing, to come over, clean up her place, and keep mom busy. Sometimes she'll take her out to the store, or for a walk or even over to her house. 2 days a week, we send mom to an Adult Day Care. So, 5 days a week, she's relatively active (though at financial cost, obviously).

Side note - Mom cannot cook anymore (or do pretty much any other simple stuff), so I make her meals for her.  I have her eat in our kitchen with us as much as I can, but sometimes she eats by herself, though I will sit with her or stay in the room. One of her weird dementia behaviors is she will spit chewed food or take it out of her mouth with her fingers. What's worse is she has no care as to where it goes. I find it on the table, wiped on her clothes, on the stairs, all over. It's pretty disgusting. If I say something to her about it, she looks at me like I'm speaking another language. I don't think she realizes she does that. Point being it's not that pleasant to have a meal with her.

So anyway, that leaves weekends. Once in awhile the hired help will come by on a Saturday for a little bit. Otherwise, I'm the caregiver. This takes time out from my self and my family. I'll tell her let's go for a walk or whatever, but she keeps saying "later, later". And the only thing ever on her mind is eating. When is dinner, when is lunch, etc.? I do my best on Saturday to, at the very least, keep her from laying in bed. But sometimes, I just want to throw up my hands, give up on it, and let her lay in bed. It's a losing battle that stresses me out. And sometimes, like today, I give in. Sure, I make sure he eats her meals, I try to suggest she watch a movie or something, but then she ends up in bed early. Today she told me "good night" at 11 am. I was like, what?! What time do you think it is? I was able to get her to watch some tv, but by 4:00, she was in bed again. I can't stress about it all day. I'll get her out of bed for dinner, but otherwise, it's a battle for the day I don't feel like fighting. 

So, I like to think I'm doing enough for her most of the time, and it's ok to let her be 1 day or so a week, but I often feel guilty about it those temporary give ups. Am I wrong? I don't know.

I don't even know what else to say about this, so I'm going to just end it here. I hope you are all having a good day....

M1

RW, it sounds like you have expectations for what she ought to be doing, but it might help to realize that these are your expectations, not hers.  Apathy and lack of executive function to accomplish tasks are clearly part of the disease.  I would ask you:  does she enjoy the daycare?  Is she involved in activities there, or does she prefer to just sit around there, too?  It might be worth finding that out.  There's probably a very fine line beween trying to keep her engaged, and just letting her be, as you say.  As the disease progresses, I think this is part of it....

Marta

Just a thought:  are there windows in the basement?

RunningWorried76

She is quite active in day care. The supervisor there said she participates in most everything. So it's definitely good for her. I see what you mean about expectations. I guess I can't expect her to act like a spring chicken. But I get bothered when she wants to just lay in bed. Most days I can at least get her to sit in the recliner and she will watch her shows or even sometimes do word search puzzles (though that is getting less and less often lately) or listen to music. And it's not like we expect her to stay down there all the time. I often tell her she can sit in the living room upstairs with us. But I believe downstairs has become her comfort space. Pretty much every time she finishes a meal, she will just say "Ok, I'm going downstairs. Can you put my show on for me?" And I have to say with all this, she does seem happy and I always ask her if she is.

Regarding the basement, yes there are windows, there's one in the TV room and another in the bedroom. I also put one of those bigger than average digital clocks that has the date, time, etc. in large letters in plain sight to try and help her know what day and time it is.

RanchersWife

Maybe she’s tired. My PWD recently lost the ability to initiate activities. She sleeps more now. However, sometimes she does nothing but pace. 

I think it’s great that your mom is happy in daycare, and with her companion, and resting. 

You’re doing a great job. 

abc123

Dear Running, you seem to be doing a fine job of caring for her. What you described is common behavior for PWD. My mom also went through a stage of being highly focused on food and eating. That lasted for a couple of years. And yes! It is still unpleasant to watch her eat. She will toss her food into the air. I have to remind myself that she had brain damage and is not responsible for her behavior. These days, she sleeps more and more. What had made a HUGE difference in her life is hospice. We have a CNA who comes Monday thru Friday. This woman is so good for my mom and dad. She is an experienced hands on caregiver for my mom. I can’t begin to explain the positive changes in mom. Maybe you could arrange for your mom to be evaluated by a hospice. I wish you well and understand how difficult this is. I’m so sorry! But it does sound like you are doing a really good job for your mom. Hang in there.

aod326

One of the things it took me a while to realize is that apathy is a part of the disease. I couldn't understand how I'd go to work (in the stage when DH didn't need 24 hour supervision) and he'd do nothing all day, except watch Netflix, mostly things he'd watched before. That was so unlike his personality and I had conversations about setting goals for the day or week. (Makes me cringe now, but at the time I didn't know he had dementia, and thought he was just a long recovery from brain surgery, so I'll give myself a pass.) He was very active and would run a few miles a day, but that was literally it.

My suggestion would be to give her an opportunity, like, "I'm going for a walk, will you come with me?", but if she says no, don't fret. Don't cajole her, just accept it. More than likely she's perfectly fine. Regarding the eating, she won't realize she's doing it, and pointing it out to her won't stop it. It's not a deliberate choice she's making - it's the degeneration of her brain. (I know that doesn't make it any less unpleasant, but it's really not anything she can change.)

It sounds like you are doing plenty for her, most importantly, caring about her. Good luck.

ComedianZena

I understand, my mom likes to sleep all day. It is difficult because I want her engaged. She has run off three caregivers. I used to take her to physical therapy but then she quit waking up for her appointments. Praying for her to accept outside help. It is hard to watch the people we love diminish with this disease. Remember you are not alone. Praying for you and your family!