She's not sleeping and we are afraid she'll fall. My mom was diagnosed with dementia, stage 5. Lives in a "group home" they call it assisted living and have 24/7 supervision. She is ambulatory but has balance issues. She thinks she can move around by herself and does not need help, but she loses balance and falls easily. Our biggest concern is at night, she gets up 9-18 times per night! As far back as we can remember she would tell us she would not go camping or stay in peoples' homes because she gets up too many times in the night to urinate. As she became more demented getting up continued but with more falls. At the previous place she lived she fell 9 times in 10 months! (broken clavicle, ribs, neck bone, cracked head 2 times with 6-10 stitches each time, etc) She is in a new place and we are all trying to figure out how we get her to fall asleep and stay asleep, getting up a few times but not 9-18 times. She is not incontinent, I think she is afraid she will soil herself. Her PCP does not think it is "overactive bladder" as this problem is only at night, many times she does not have any urine left in her bladder, so gets up and does not need to. BTW, when I ask her why she gets up so often she denies getting up more than 2 times, so she does not remember. She is already on Sertraline 125 for anxiety/depression. We are not too keen on putting her on more anti-anxiety meds due to side effects. We tried Melatonin for 4 days and all it did was make her groggy and she still got up 11 times each of those nights. Any suggestions on what this could be? Is it part of the dementia, is it muscle memory of so many years getting up to urinate? I read your postings and have learn so much from your experiences. Any suggestions would be greatly appreciated.
I can certainly understand not being keen on putting her on more anti-anxiety meds. There are always possible side effects. But the side effect of doing nothing is falls, the next one of which could be fatal. So if her doctor suggests some additional med to try, weigh very seriously the risks of continuing as-is vs the risks of taking the drug.
Another possibility is to hire an aide to stay with her all night to ensure she doesn't fall when she gets up. Could Mom afford this?
Since this is a long-standing sleep problem, it might be worthwhile to have testing done at a sleep clinic.
Thank you!
For example, benadryl is contraindicated for people who have dementia. You can look it up to see the reasons. It is possible that the risks from benadryl are much less than the risks of falling, so a doctor may recommend it anyway, but I would let a doctor be involved in the decision. My husband had Lewy Body Dementia and for that population "[benadryl ] May produce confusion and hallucinations in people with LBD and should be avoided."
Melatonin is a powerful hormone, produced in the body in teeny tiny amounts -- much less than in any supplement. It is over-the-counter in the US but in other countries it requires a prescription. It is generally considered safe. I would ask a doctor about dose and timing. Also Melatonin can interact with other drugs, so the doctor should be aware of what the patient is taking. Melatonin is not effective for everybody.
I know that sleep problems are serious and I understand the need to resolve them. I just think a doctor should be involved in decisions about drugs and supplements.