After caring for my in-laws with dementia for 2 years, I’ve read and learned a lot about dementia. Recently MY mom has gone from moderate to severe very quickly. (Unlike my in-laws progressing slowly.) I understand sundowning, reversing days and nights but my mom is not sleeping at all! Cat naps during the day… up and agitated ALL night! We are working with a “geriatric specialist,” who has been “playing with different medications” for 2 months now! Nothing helps!! Taking her for walks in the evening, changing times of giving her meds, melatonin etc.
Anyone have this problem or a possible solution? She’s 86 years old… don’t know how she stays awake so many hours!!! WE are exhausted! Any advice greatly appreciated.
I have experienced a bit of success by putting her on a strict schedule of eating and snacking throughout the day. Because she has GERD, diabetes, and high blood pressure she is now on a healthy (but bland) diet. Breakfast is at 9:00am, Snack is at 12:00 noon, Lunch is at 2:30pm, Snack at 5pm, Dinner at 8:30pm, Snack at 11pm, then Snack at 1am (Snacks and meals are scheduled for medication administration that requires food). After 1am there are no snacks or food available until breakfast the next morning. The last snack of the day (1am) is almonds or walnuts (because I read that they will help fill your stomach and can help you sleep).
And, once I give her 1am meds I take her TV remote, phone, and tablet from her. Now I have had to take extreme steps with my mother. She is stubborn and was capitalizing on the fact that she knew I would be sleeping and would use that time to stay up and snack all night, watch TV, play on her tablet or phone, and roam and fall around the house. Furthermore, she is obese and her doctor has had several conversations with her about healthy eating and exercise. Yet she continues to just lay in the bed all day, only getting up to go to the restroom or get her snacks and meals. I have recently started doing some "chair yoga" with her before her 1am snack so that she is relaxed when she should be ready to go to bed.
Once I started the chair yoga and the TV, tablet, phone, and snack options were removed after 1am it was amazing how many times she was able to sleep through the night. She still has access to her calming music, but no TV, tablet, phone, or food.
Now, is she happy about this solution? No, not at all. But as her only caretaker I have had to figure out what I can do until her doctor(s) can find the right medication for her. I cannot be available 24/7 and I cannot watch her 24/7. I can, however, make sure she doesn't have access to TV, tablets, phones, food, or other things to keep her awake 24/7 and keep her on as regular a schedule as possible. Routine will win out eventually? Good luck, cwillie!
My mom did well with mirtazapine - you could ask about that if your doctor is willing to experiment.
But maybe instead of trying to get her to sleep you need to focus more on keeping her safe and occupied without you through the night. Would she be able to stay in bed, or at least stay in her room, if you provided a TV or radio or some other kind of self directed entertainment? If wandering is a concern making the rest of the house safe will have 24/7 benefits - disconnect cooking appliances, alarm doors and windows, pack away of lock up anything harmful. Beyond that a night sitter may be necessary because you can't continue to be a good caregiver without adequate sleep... or it may be time to consider memory care.
(I tried Trazodone and it was a disaster so I slammed the door on that one.)
My mother doesn't like to swallow capsules or pills so all of her supplements for sleep are in gummy form.
I begin about 30 minutes before bedtime with 1 or 2 CBD gummies.
At bedtime I give my mother 1 magnesium glycinate gummy. (The magnesium glycinate doesn't cause bowel movements.)
When she needs to have a bowel movement I give her Milk of Magnesia at bedtime.
Also at bedtime with the magnesium, I give her 10 mg of melatonin gummies.
All of these are natural, calming and help her to sleep. There are nights when she is more restless and doesn't sleep as well and I try to take these in stride, but most of the time she will sleep for 5-6 hour stretches during the night.
I also keep her up during the afternoon until around 5 or 6 pm and not let her catnap all day.
Another positive to making her stay up is that she will eat more and hydrate more - I usually give her a choice of water, milk or juice.
Home is safe … special lock on door - yes she tries to leave. Try to control her diet… but seems to want sugar - typical we are told as they get older the taste buds go and sweet is last to go do they like it. No food after 8 PM.
We keep her awake, take evening walks, etc. We just don’t understand how she doesn’t sleep!!!
She’s never alone … but whoever stays at night gets NO sleep.
I guess we may have to consider a facility. Soooo hard… always says she never wanted to get this way… and never wanted to be put in a nursing home! 😢
Walk her during the day or afternoon, not at night. Give her activities to do during the day: portable foot pedaled, fold towels, reading to u aloud, sorting “laundry”, whatever she will cooperate with. After dinner no blue-light devices that make her brain too active (tablets, etc). Maybe watch peaceful movies (animated Disney or Pixar) that have as little to no violence or fear in them as possible. We use the closed captions and she reads all the movie, even the credits. Bedtime 10pm strictly enforced. We’ve had success with this, hope you do, too!
Glad your MD is working on medications, but often this problem is very resistant. In some people with dementia, the day/night cycle is broken, and the sleep cycle is reduced to naps off and on around the clock.
The 2 behaviors that are very hard to manage at home are nocturnal wandering/agitation and fecal incontinence. These are often the changes that exhaust family caregivers, especially those who are working/have daytime responsibilities.
Do what you can...and start to think about memory care.
Although private pay agencies can provide CGS that you pay for, there are very few places that have overnight awake workers. The cost is highest for those. You may find helpers 'word of mouth' so put the word out that you are looking for help. Or a small posting on local bulletin boards (supermarket, etc) with tear offs for your phone number.
Remember, your needs matter too. If you are injured by tripping on a curb because you are so tired and distracted after being up at night....who takes care of mom then?
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