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She is 92 and had a massive stroke 4 years ago. She was sleeping about 18 hours a day. About 3 months ago that changed and now she hardly sleeps. She is in bed 24 hours a day. She only gets up when I help her to the bathroom. She stopped calling me for help in getting up so I got a motion detector so I know when she is moving. The motion detector goes off every few minutes around the clock. She lays in bed and picks at her face or tries to pull her teeth out. I barely get any sleep. I'm lucky if I can get something to eat before she needs me for something. I believe she has entered another phase. Has anyone had a similar experience?

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John, I think your mother needs a doctor who is interested in treating her as she is, 92 and all. A geriatrician focuses on the elderly. A dementia specialist such as a neurologist or a geriatric psychiatrist would be appropriate, too.

I don't know how you feel about nursing homes, but you and Mother might both be better off if you could visit her as a loving, well-rested son. Have you considered this?

I'm also going to suggest the book, "Being Mortal: Medicine and What Matters in the End," by Atul Gawande. The author is a surgeon, interested in quality of life near its end. He has many examples that make for interesting reading.
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Many of us whose loved ones have/had dementia have experience with very strange and inconvenient sleep patterns. Not everyone with dementia has sleep disturbances, but very many do!

My husband took both something to relieve anxiety so he could sleep, and something to deal with excessive daytime sleepiness. My mother needed only something to help her sleep. Discuss this with her doctor. DON'T try do-it-yourself medication. I hope her doctor will take this as seriously as my husband's neurologist and sleep psychiatrist did.

I really don't know if a more "mainstream" sleep pattern is an improvement for the patient, but it is definitely better for the caregivers! Without some relief from the sleep issues I would not have been able to keep my husband at home with me for the entire dementia journey (10 years).

My mother's night behavior disturbed other residents in her nursing home. The staff was considering moving her to the memory care floor, but the drug helped her sleep through the night, and allowed her to stay among people she could socialize with.

One person involved in dementia care told me the drugs my husband took were "overkill" for a simple sleep problem. She said it was using a cannon to kill a mouse. Only someone who has never experienced sleep issues in a loved one with dementia would consider it a "mouse." I hope your mom's doctor is more understanding.

On a separate note, the motion sensor doesn't seem to be accomplishing what you want. You want to be there to help mom if she needs to get out of bed, but you are getting all kinds of false alarms when she is trying to pull her teeth. I used a motion sensor positioned to detect just motion outside of the bed. If my husband swung his arm or leg over the edge of the bed, I was aware of it.

I also used an assist bed rail for my husband. The one I used is here: https://www.amazon.com/Drive-Medical-Home-Assist-Board/dp/B0014DSATA?th=1 but there are several brands and styles available. It allowed my husband to pull himself up to get out of bed, instead of half falling out. And the extra time it took to use this gave me a little more time to see what was going on. Later I had trouble getting out of bed with sciatica and I loved having something to pull myself up on! I've also loaned it to a friend whose post-stroke weakness made it hard for her to get out of bed, or even to get herself into a sitting position. She said it was a lifesaver, for herself and for the daughter she didn't have to keep asking for assistance. I don't know if this would be helpful for your mom or not, but you have to figure out how to avoid being awakened every few minutes, but also to tell when she really needs you!

Since this is such a common issue, please let us know what you try and what works for your dear mom.
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I agree with getting your mom to a doctor who cares about her wellbeing as well as yours. My mom's doctor also used the "What do you expect, she's 95" when I took her because she was losing so much weight. Made steam come out of my ears. Your mom deserves a doctor who will take her lack of sleep seriously. Please keep us posted.
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Personally, I never experienced this. Just getting up at 3 am thinking its time to get up. You need to call her doctor and see if she can be given a sleeping pill for at least thru the night. Hopefully, someone else can help.
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I think you should see a doctor about a sleep med. I know your Mother has dementia but lack of sleep can seriously effect her demeanor
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Jeannegibbs That is similar to the bed rail I am using. She has gotten to the point where she doesn't have the cognitive ability to realize that she needs help. Her sense of balance is long gone and she will fall over without knowing what's happening. She is also deaf, which makes it very difficult communicating. Her doctors seem to have written her off. I often get the answer, "She's 92." I get this from the PCP and the cardiologist. They seem to want to move on to patients who are more responsive to help.
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Jeannegibbs, could you share your solution for your husbands excessive daytime sleepiness? Moms daytime tiredness really concerns her. “ I don’t do anything, why am I so tired.” She does take melatonin at night to try to get enough sleep at night but still takes many naps during the day.
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We give mom melatonin. I was a serious melatonin cynic but what did they prescribe for her when she was in the hospital? Melatonin. If mom doesn't get enough sleep it's a disaster the next day. Like she can't walk and is confused. Ever since she started taking melatonin and is sleeping steadily every night, she is better than she's been in a long time in terms of mental state as well as in motor control.
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