Wanting to go back to bed.

Yorklady53

My DH was diagnosed in February. We had all seen changes for more than a year, and now it retrospect I should have recognized issues years ago.

I find that he will fixate on an issue and just keep at it even when trying to redirect. Before we even pull out of the driveway he wants to take his seat belt off, this will go on the entire trip but I usually calmly tell him he has to wait until we arrive at our destination, no harm done.

His latest obsession though is driving me around the bend. He started asking to go to bed right after dinner and I would tell him it’s too early for bed. He would keep asking but I would be firm about not going to bed too early. A few weeks ago he started asking shortly after lunch to go to bed. Now he is asking right after he has his shower and breakfast.

I want him to be able to sleep when he wants but I am so worn out from caregiving that I need to sleep during the night to have the energy to get us through our days. I can’t let our schedule get too out of synch because all of our appointments and tasks have to be done during the day. 

I know that he has to be bored out of his mind because all he does day in and day out is to watch the Western channel. We have things that we need to do most days but nothing seems to be enough to interest him and keep him from wanting to go to bed.

Any suggestions on how to redirect would be appreciated.

dayn2nite2

I don't understand - is he up all night if you let him sleep during the day or are you just afraid he'll be up all night?

How many "appointments" do you have where he absolutely needs to be present for?  Any of his appointments need to be minimized down to bare bones, like twice-yearly doctor visits.  Your appointments you should be going to alone since they don't involve him.

This would be a time where you need to start enlisting caregivers to watch him while you are out of the house taking care of these scheduled items (again, for him there need to be very few and he doesn't need to accompany you to yours).

His brain is progressively being affected by this disease and he needs to sleep more.  Keeping him up all day and running around is only going to end up agitating him.  Your life at this point is going to become more solitary because your partner is impaired, so you need to start living in that realm by having caregivers come to the home while you are out or involving him in a day program if one is offered in your area.  Even there, if he wants to sleep they will let him because that's the disease.

I would start getting used to having people sit with him because if you don't you'll end up in a position where you are a prisoner in your own home and you won't be able to go to your own appointments either.

Rescue mom

I also am not clear on what’s going on, but day2night makes sense to me. 

One gentle caution about one other thing you mentioned—it’s been discussed here a lot in the past but probably before you joined. 

We caregivers worry about them being bored. “I know he must be bored…” I’ve said it; I would absolutely be bored out of my little mind, if I did no more than my DH with Alzheimer’s does.

 But we are not the person with dementia. Yes, some may be bored/fidgety restless, etc., and we want to help them.

But many others really are OK just watching out a window, or watching an old TV show, or doing basically nothing (what looks to us like nothing). They have a disease that destroys the mind. What bores us may be OK with them. We can’t always judge what’s in their mind.  It can be hard to tell sometimes, but if he seems peaceful and OK watching old TV, I would take that as a blessing.

Sjodry

Yorklady53,

My mom is sleeping much more with this stage of her disease. During a recent hospice re-evaluation to determine whether she continues to qualify, I was mentioning one of my frustrations with her facility to the hospice case manager who was evaluating her (the facility staff often neglects to open her curtains in the morning, among many other things). The case manager confirmed that it is a good thing to try to keep the person oriented to night and day.

This is not quite the same issue you are dealing with. My mom is suddenly sleeping much more and complaining of pain as well. I still have them open the curtains no matter whether she is sleeping or not. At one time I had a nice clock with large numbers/letters which identified the time of day (morning, noon, afternoon and evening) until my mom decided to wash it.

With my mom’s stage of disease, I don’t redirect, I just let her sleep at this point. I think that the disease is progressing. She does get up sometimes at night, but also seems to still be sleeping for the most part during the night (after sometimes having slept most of the day away). I think some of these situations are certainly dependent upon the stage of illness for your husband.

Best of luck to you. Sometimes we just end up with some trial and error before we find what works best.

Take care.

Sandy

Yorklady53

Thanks for responses. 

He would be up all night if he slept all day. I know he needs more sleep and he does get much more than he did even 3 months ago. He now goes to bed between seven and eight and usually gets up around 7:30. He naps in his recliner a good bit during the day which doesn’t affect him sleeping well at night. I worry that if he starts to sleep even more he will keep me up all night. 

He doesn’t go to my dr or dentist appointments and I have someone in once a week so that I can schedule my appointments then. I just don’t want him to get day and night confused because I also need to sleep.

I think that I’m the one with the issue so I’ll try letting him go to bed whenever he wants and see how that goes.