Am I going crazy...

lindalouielou

For the past 3 weeks my DH has been sleeping all day long. He hasn't been eating and has lost a lot of weight. He was diagnosed with Dementia about 6 years ago. If he gets up, it is usually about 5 pm and he rarely gets dressed. BUT now, for the last two days, he has gotten up around 3 pm and gets dressed? He has actually been able to converse with me and is willing to eat. (I was so worried when he was sleeping that I reached out to his doctor and she assured me that it was part of the disease. I have even begun checking with in home care groups so I can safely leave the house. That is too expensive so I am seeking other alternatives) Has anyone else experienced this? He isn't on any medication for his dementia. Could he have had an infection? I just don't know what is going on. I will see how today goes and see if he is able to get up and get dressed. This could be 3 days in a row that he is back to his "normal" abnormal self...

M1

Have you thought about calling for a hospice evaluation? You don't need a doctor's order for this, you can call yourself and ask for an assessment.

lindalouielou

No. I thought I had to get a Doctor's note for that. Thank you for this. I will reach out to them.

Denise1847

Does he possibly have a UTI?

Judy.T.

Check your city council on aging. Ours offers vouchers for receipt care. Volunteers of America also has a buddy program where a volunteer will come visit for an hour a week. It gives you a little break.

BPS

My wife has been doing the same thing. She gets up about 2:00 for several days in a row some times for over a week then one day she won't get up at all for up to 36 hours except to go to the bathroom and have a drink and eat a little only if I bring it to her then she goes back to getting up mid afternoon for a while. The doctor has said it is not hurting her as long as I keep her hydrated and nourished. M1 mentioned getting a hospice evaluation and I don't know anything about that but am interest as to what that would do so I am going to check in to it.

Kharli

Hi, I am several years into early onset dementia 56, uncertain yet as to which kind…. BUT my point is that I ALWAYS was an early morning person . It used to absolutely kill me to stay up until midnight. When this early onset started coming on, everything switched, Now I’m lucky if I get up before 2pm , and half of the time I can’t fall asleep until 6 am! This cycle feels absolutely insane and yet, there’s something quite peaceful about being awake when everyone else is asleep- it’s so very very quiet. Guess maybe that’s it- who knows

lindalouielou

https://alzconnected.org/discussion/comment/188842#Comment_188842

Thank you for your insight. Sorry you have to deal with this awful disease.

lindalouielou

My DH is still sleeping most of the day(s) and eats very little. Now he says he is constipated and spends way too much time in the bathroom. I asked him earlier how things were going and he said he was back to normal. Then, about a half an hour later I approached him as he was headed back into the bathroom. I asked him if he was ok and he said he was constipated. Has anyone else experienced this. Is he so confused that he doesn't know or can't remember or?? I've been making him eat even if he doesn't want to. Of course, it is only a few bites of what I fix him. We see the doctor on Tuesday, next week. It is a vicious circle for sure. Any advice? I just ordered the book called 36 hour day and can't wait to start reading it.

Thank you all so much for your support and suggestions!

Denise1847

https://alzconnected.org/discussion/comment/190221#Comment_190221

Perhaps select foods that will assist him with the constipation. Check out Teepa Snow on YouTube. Sleeping excessively is part of the disease process.

JDancer

Liquids are also very important to avoid constipation.

ButterflyWings

My DH often gets a 1/2 capful of Miralax daily to help keep him regular, but still solid. We started this at hospice nurse reco, when some meds caused constipation. Also, daily fresh fruits and veggies help a lot here, even if blended into a homemade protein smoothie which we do a lot.

pookabera

https://alzconnected.org/discussion/comment/190221#Comment_190221

First: you are not going crazy. Very few things are predictable with dementia. Behaviors and symptoms can flip or shift as time passes. I definitely recommend the 36 Hour Day; it does a great job of explaining dementia as a disease and explaining the progression and behaviors both in terms of how the loved one reacts and experiences it as well as giving approaches caregivers can try.

My Dad also has some dementia-related behaviors related to bowel movements/constipation (this is a continuation of lifelong issues, but exasperated by the dementia), sleeping, and eating.

Some foods we've been able to give my dad to help with constipation/keeping things regular: watermelon, juice, water (!!!), we've mixed baby food prunes into applesauce... If he's open to fresh fruits and veggies I'd definitely recommend that. I've heard that prune juice can help.

As they start losing their appetite and sleeping more it can be difficult for their bodies to regulate bowel/urine output, things are just going to start moving more slowly. It can also become difficult for their brains to maintain the connection with the digestive system. Or as their bodies weaken, if the BMs aren't soft enough, it's hard to pass. It can all be a bit a process to work out what works best and know exactly what's going on.

I also agree with the hospice evaluation - Our hospice team has been so so helpful at helping with the bowel regimen (and with everything in general). And because laxatives/stool softeners/enemas/suppositories/etc! can all have differing effects on the body; I'd definitely recommend checking in with his doctor before administering anything.

For eating - Are you eating with him? Sometimes my dad would eat "better" if I was eating in the room with him. Other times he'd tried to give me his food and get irritated when I told him I had my own haha

For sleeping - Things tire out the brain more quickly for people who have dementia. Tasks like using the bathroom, watching movies, any sort of "activities of daily living" can wear them out. It can make maintaining your schedule difficult as the caregiver. Our hospice team put my dad on seroquel to help with behavioral problems and his sleep schedule, which has helped (my mom is now able to actually get some sleep at night).

I also think a hospice eval could help you assess whether it's safe to have him home alone.