How much sleeping is "too much"

cb4jb

Hi, new to this community and have many questions, but the one that's top of mind today is that my DH, who was diagnosed with VD but also elevated levels of Alzheimer's last summer, seems to be slipping away faster all the time. He's now very weak and wants to sleep almost all the time. We've been letting him eat breakfast in his room, come out just long enough for lunch, and then the caregiver gets him up about 4 for some "exercises" and supper before going back to bed by 6:30. Do we need to insist he wake up more? He's not interested in anything, gets frustrated with speech, and has fallen 3 times. (We now have more caretakers and a bed alert to help with that.) I wish we could still have some fun together…

Chris20cm

For years I have managed DW's sleep schedule, waking her at 8:00 am so she wouldn't sleep too long and not want an afternoon nap, waking her up from naps so she wouldn't sleep or she would go to bed too late at night. Mostly it has worked well, but now I think I am going to quit over-managing. If her body and mind want to sleep, I should leave her alone I guess.

Every person is different and there's so darn much trial and error in dementia caregiving.

Chance Rider

I also used to try to manage my husband’s sleep, mostly to avoid him napping too much during the day. Now, in stage 5 I just let him nap/sleep whenever. He seems to take at least 3 one hour long naps a day. I don’t know for sure since he has his own room and aside from peeking in from time to time I leave him to sleep. I told his neurologist and GeriPACT doctor about his sleeping and napping and they weren’t concerned. I figure his brain needs rest. Plus, it gives me a bit of a break.

Sweetwater

I let my LO sleep as much as he wanted.

janeedee

I also leave DH sleep. Has VD and Alz. Whenever it has been much more sleep than usual, it was always a UTI. Amazon has testing strips so you can test at home before calling Dr.

blacksparky

I too just let my DW sleep as much as she wants during the day. So far it doesn’t matter if she naps or doesn’t nap, she still goes to bed around 8:00pm and sleeps to at least 5:30am. I take her daily naps as a respite for me.

BPS

A few years ago I was concerned about my wifes sleeping. She would sometimes sleep 30 hours straight only getting up to go to the bathroom and when I would wake her to eat or drink something. It wasn't all the time but it concerned me, so I talked to her doctor and he said that as long as we were both ok with it and she was getting food and drink that it was not hurting her. She went through spells like that for a couple of years. Now she is in stage 7 and sleeps 20 or more hours a day many days. I think that if that is what they want to do and it is not causing a problem then let them.

cb4jb

Thanks, all—I'm not sure I COULD keep him up much longer than he wants, but he still seems so restless at night. We're having a big family lunch for Father's Day and family June birthdays on Sunday, so fingers crossed we'll at least have some time all together. I've been studying some today—I think he's about level 6.5 at this stage. A lot of changes in the last 2 months, and I think he's "given up." It's so sad to watch and have it be beyond my ability to help.

howhale

Sleep is just one of the many things we have to learn to accept differently in their world. I tried also to manage my DW sleep but learned it was a mistake to try to force my normal behavior upon her. Yes, it impacted my own sleep at night but that is just what we do to be the care giver for our loved one. We have to adjust to their world now and it is hard, so very hard, but we do it out of love for them. By the end I became convinced that they know at some level within themselves what is happening to them but cannot change it. Any form of dementia/alzheimer is terrible for us and for them.

harshedbuzz

https://alzconnected.org/discussion/comment/274671#Comment_274671

Dad reached a point where having multiple people in the house was too much for him well before the end of stage 6. I recall his last Christmas— just 6 extra adults (no children) for a quiet brunch at his best time of day and things went sideways quickly. He became very agitated and retreated to his room where he kept calling for my mom. Make sure he has a place where he can get away from it all.

cb4jb

https://alzconnected.org/discussion/comment/275370#Comment_275370

Our teen age grandkids live up the street, and he seems to enjoy them, but his tolerance time is getting shorter. So far the kids are understanding, and I think this is a good experience for them too, but I dread the day DH just doesn't want them around anymore. So many people want to visit—he was a pretty popular local musician in his day—but I've had to discourage that even though it seems so lovely and kind to me.

dcare45

Another great post and helpful comments. I have had the same question for a while.

DW is stage 5-6 probably. She sleeps 8-10 hours through the night. Usually with no disruption thank God. She also will occasionally nap for an hour or two during the day. I was trying to keep her up during the day but it doesn’t seem to matter either way so I let her nap.

She also doesn’t care for long visits from people or many people at once. She is polite about it. The visits usually end when she announces “ if you guys want to you can go home now “. 😂 thankfully everyone understands and gets a giggle.

howhale

I saw this same experience with my DW in her later stages. I had to limit the number of visitors or family at one time and I coached them all beforehand about the visit. I made sure they knew what they were going to see and experience. Visits were limited in time and I would watch my wife's behavior, facial expressions, withdrawal, etc. to cue them. They enjoy the visits I believe but their system is just to weakened to sustain any "performing" they may do for very long. With explanations in advance, most everyone understood. I also coached them on how to interact with her such as speaking louder, speaking to her face, sometimes kneeling in front so she could see them when talking, all the things I did "normally" now to communivate with her in her way.

tonyac2

Same here. I tried to keep my DH on a daily schedule. To bed at 8pm, up at 9:00am, nap at 2:00pm, back to bed at 8;00pm. In the beginning, it was erratic with him awake off and on throughout the night, but then we were able to transition into the above schedule. As his dementia progressed, he slept more and more, near the end. It was close to 20, 21 hours a day. Once again, dementia demanded that I adapt, and I lovingly did for his sake, and what for dementia was doing to his body and mind. It’s all so heartbreakingly hard. I hate dementia.