My sweet husband is at an AWKWARD STAGE OF DEMENTIA. He tries to be independent, but creates so many problems for me. He doesn't come to bed til about 2 am. Then he turns on all the lights, shaves, showers, and then fills the bathtub for a bath. An hour later, he crawls into bed. After being kept awake for that hour, I have to get up and fuss with his bi-pap machine to get his mask on right because he puts it on so tight that he has even cut into his cheeks. The mask leaks all night and wakes me several times.
SLEEP DEPRIVATION is becoming a really big problem for me not only because of him, but the older dogs we had rescued. I am so exhausted that I am making big mistakes now too.
After I go to bed around 9:00, he gets up and starts looking around for junk food, for his bottles of liquor that I found hidden and disposed of, meds, and other things that he feels are comfort for him. I can't sleep with him going through the house. The next morning, I find problems that he has created. And sleeping meds do not work on him.
SEDENTARY LIFESTYLE is an issue as well for him. I can't keep him active so that he will be tired at night. If left alone, he will watch TV 18 hours a day. I try to take him for a walk, for activities at the senior center, etc., He doesn't want to participate. He just wants to sit and watch TV. I can't live his life for him or keep myself tied to him 24/7.
How do others deal with their sleep deprivation with sick loved ones when there is no one to lend a hand at night?
And How do others keep their loved ones active when they don't want to be? How can I keep him from becoming a vegetable in front of the TV for 18 long hours?
Any magic pill?????
2 Answers
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First
You cannot continue to do a good job as a caregiver (or anything else) if you are continuously sleep deprived. That is just a biological fact. So, that is the issue that needs addressing first.
Freqflyer's suggestion of separate bedrooms might work if your husband is safe on his own. My husband (dementia) was not. If he was awake I needed to be aware of it. Dementia definitely reaches a point where the person cannot be left alone -- not while you go to a store and not while you are sleeping. If your husband hasn't reached this point yet, take advantage of that and sleep in separate rooms.
You say that sleeping meds don't work on him. That is too bad, because that was ultimately what allowed me to keep my husband home with me. The drug that worked for us -- seroquel -- isn't exactly a "sleeping med" but my husband's doctors (a sleep psychiatrist and a neurologist, working together) understood the critical nature of him sleeping through the night, and were willing to try this. Have you discussed this problem with both the doctor who treats the dementia and the doctor who prescribed the bi-pap? Impress upon them the critical nature of this issue. Maybe some sleeping meds haven't worked, but be sure you've fully explored this avenue before giving up on it.
We used a pill for excessive daytime drowsiness, too. A pill to sleep, then a pill to stay awake. May sound crazy ... but it gave us 9 good years of a quality life together. I am extremely grateful to the doctors who fought hard for quality of life for my husband.
Dementia messes with the sleep/wake cycles. It robs people of initiative. I'm all in favor of any means to help them overcome these problems, which are not their fault and not character flaws.
If Hubby cannot sleep through the night, cannot be more active in the day, and is not safe to leave alone at night, what are your other options?
1) Bring in a night time helper. He or she should start about the time you go to bed (in a separate bedroom) and just be responsible for keeping your husband safe.
2) Sign him up for a day health program. That would be a few hours a week he is not in front of the television.
3) When the night aide and some daytime activity are not enough, consider placement in a care center.
My heart really goes out to you. I've been there myself and I am so glad that we found a solution that enabled me to continue to care for my husband at home. I sincerely hope that you do, too.
Please keep us updated. Many people are in your shoes, and we learn from each other.
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