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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.

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A huge thank you to all who have responded. I have learned so much from all of you in the past and continue to learn. Unfortunately, we do not have any geriatricians in our city or the adjacent city (1 hour drive away). We have seen 3 of the 4 neurologists and frankly I am not impressed with their lack of knowledge of the elderly. I did contact her PCP, a family medicine practitioner, he is having her tested for vitamin D levels and UTI, both causes of nocturia. We shall see what he finds. Her current AL is providing a movement sensor/alarm which notifies the worker she is moving, so far it must be working as she has only fallen once when the sensor was not working. Thank you again for all your wise suggestions. I truly appreciate it.
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ElenaMorera, Seroquel is prescription-only, so a doctor would be involved in that decision. I strongly recommend talking to a doctor (preferably one specializing in treating elders and/or dementia) before starting ANY drug or supplement for sleep problems when the patient has dementia.

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.
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Regular melatonin doesn't work for me, but the time-release version is fairly effective. Ambien works better than anything, but my doctor won't prescribe it.
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ElenaMorera: I do recommend Seroquel as others have said here.
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ElenaMorera, I feel your pain. My mother is the same way. She is up several times at night, mainly to use the bathroom (sometimes to get a cup of coffee...). She is also a fall risk. She fell the other day and hit her head on the tile floor. Ended up with a huge knot on her forehead...Now has a nasty black eye. She is 94 and has had several falls over the last 4 years. Other than her nose, she has not broken anything. I sure hope I have her bones! She really has a balance issue, but refuses to use a walker. Then again, if she steps backwards while using the walker, she will probably fall anyway. I ended up having to get caregivers to sit with her at night to keep her safe. They come from 8 p.m. to 8 a.m. M-F, and it costs $22 per hour. It is working out, but I worry that she is going to run out of money if she is still with us in 2 months. She is so much clearer and stable on her feet after a good night's sleep. We are trying melatonin, but I am not convinced it works well enough. I did give her Benadryl (Tylenol PM) the other night, and it did work (after the on-call nurse said it was okay to use). But, the hospice doctor called and said that it would be safer for her to use melatonin instead of benadryl.... I am trying to stay away from prescription medications. I have read where they can cause the patient to be more of a fall risk... Not sure I need Mom to be "more" of a fall risk than she already is...
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2 Benadryl half hour for bed will help her stay asleep and they are non habit forming.no prescription needed. Over the counter 
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My late mom had the same problem and ended up with several broken bones. We had put her to the nursing facility after the hospitalization. I hated doing it to her, but I couldn’t take care of her because I am severely disabled.
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Check with her doctor but Melatonin works wonders and it's not a prescription drug. You buy it under vitamins. I use it myself on nights when I have trouble sleeping. My mom would wake up all hours of the night and come in my room and scare the heck out of me. Once we started with the melatonin (only 3 mg) and she would sleep through the night. Her doctor actually recommended we try that before sleeping pills.
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Any reason why the mattress of the bed can't be put right on the floor? Skip the frame and box spring? If she is in a hospital bed they do have the hospital beds that go down to within 7 inches of the floor. My mom cannot get up from the floor, so by having her bed on the floor she CAN NOT fall if/when she tries to get out of bed. Putting her on the floor to begin with has saved us soooooo many falls.
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Could the staff at her AL facility use a bed alarm or a pin alarm? I know that won't prevent her from getting up, but at least they would know and could go in and help. Also, there is a 10mg melatonin that is controlled release so it stays in their system longer. The one I get also has 5htp in it, which is supposed to help with sleep. Other supplements you could try include Valerian, gaba, magnesium.
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Many elderly people have "nocturia" which is the urge to urinate many times a night. Many others as well- Parkinsons (the biggest disability group I work with) have nocturia in 60% of the cases. Often a "SuperPole" or balance pole of a "Friendly Bed" will allow a person to safely "stand and pivot" onto a bedside commode and back into bed. No walking (when sleepy, weak, heavily medicated, and in the dark) means no chance of falling.
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Good idea about the geriatrician. Explain to them the situation and ask what would be the best drug to keep her asleep at night so she won't get up and wander around. I understand how worrisome that can be.
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My Mother is having the same problem. She has balance issues and is not sleeping well. Maybe the problem is that her naps are too long, she sleeps too much after lunch. At night she doesn´t feel tired. I put away the coffee and sugar in the evenings. I am controlling her sleeping hours. Now she is having Melatonin at night, but is not too much help. I feel very broken inside, I need rest.
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Elena, is mom's doc either a geriatrician or neurologist thAt specializes in dementia? Many family docs are clueless about aging and dementia.
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Seroquel was the answer for my mom. Without it she was like the energizer bunny with rabies at night. With it she sleeps all night, even if she gets up to use the bathroom she goes right back to sleep.
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Thank you Jeannegibbs. I will talk to doc about the Seroquel. You are correct, we cannot afford to do nothing. I am afraid another fall could be fatal. And unfortunately, mom cannot afford an aide, so we depend on the bare-bones night staff to take care of her.

Thank you!
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I understand your concern! Sleeping through the night was the first deal-breaker for keeping my husband home. His neurologist said he only worked on one symptom at a time and asked what we wanted to start with. Not sleeping through the night!! The neuro doc consulted with a psych doc who specialized in sleep disorders. They agreed that Seroquel would be worth a try. It worked! He took it the full 10 years of his dementia journey. He never had to have the small dosage adjusted. But it definitely doesn't work for everyone! In my support group nearly everyone tried this drug for their loved ones. I'd estimate about half had good results. The others discontinued it.

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.
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