He spends all of his time in a downstairs family room. He can still get himself to the bathroom and come upstairs during the day to eat or drink something. That is about all he can do. But at night he just calls for something to eat or drink or even to just cover him up with a blanket. He won't stay on a routine. Seems to sleep only a few hours at a time in a 24 hr period , but not through the night. Sometimes sleeps long stretches during the day. Because of his dementia, I do not want to give him any sleep aids. Any suggestions for someone who doesn't sleep at night.
My wife, Christy has FTD, all three variants.
It took 9 years to diagnose.
I have been caring for her at home since 2006.
Sleep has been one of the greatest difficulty.
It has been solved since 2013.
Until then she was 'hellish'. Now she is a delight.
FTD does not respond to medications and Alzheimer's medication can permanantely damage.
In fact:
http://www.alzcompend.info/?p=268
"Melatonin can cause a number of serious side effects — including confusion and depression — which become more likely as the patient continues to receive it. Supplemental melatonin may exacerbate seizure disorders, which is a concern for Alzheimer’s patients since they can develop seizure disorders at any stage. Since melatonin shrinks arteries, it may be contraindicated in loved ones with cardiovascular disease (including vascular dementia). It may also aggravate autoimmune disorders (which can cause dementia symptoms) such as arthritis and severe allergies.
Daily administration of melatonin, even of a low dose (e.g., less than 3 mg) can cause the loved one to build up a tolerance, and can eventually disrupt, rather than improve, sleep in some people. Also, melatonin can have serious interactions with a number of medicines, including the antidepressants that are often prescribed for Alzheimer’s patients, blood thinners (e.g., warfarin, heparin), blood pressure medications (especially nifedipine), drugs that may affect the immune system (e.g., azathioprine, cyclosporine, prednisone), and fluvoxamine. Anyone considering starting a loved one on melatonin should first discuss it with the doctor and the pharmacist."
The only answer in these 13 years has been cannabis. Normally administered to stop seizures, we found it to also be asleep aid with bright eyes awakening.
I look forward to each day with her.
It took a couple years to figure the type and dose but it has been consistent.
I lived in a state that was not cannabis accepting. The doctors saw the results and wished that they could prescribe.
We relocated to a friendly state and life has been great.
Christy is lost in there, but there are more good times than bad.
Polyester is a synthetic fiber. It does not absorb water, enabling it to trap moisture and heat in hot environments, which can make for sweaty and uncomfortable nights. Polyester fibers may be irritating to sensitive skin, and they tend to attract static electricity whereas cotton does not.
Cannabis is affording all of us full nights sleep. It is remarkable.
The other night, I heard Christy's Cpap leaking.
I found her with such a big grin, the face mask would not seal.
I don't sleep that hard. I can always tell if he is in distress. I still am adamant that if I don't sleep I can't take care of him. For now, this works. Who knows what tomorrow brings. One day at a time...
From 2011 to 2018 I would only get 4 total hours per night. Now, since we dialed in dose and frequency, she sleeps all night.
Canna edible delivered at 2 PM allows willing sleep at 8 PM and awake at 6 AM.
Some nights she awakens to go pee, but right back to sleep. Sometimes she will have a seizure in the night. There is no medication for FTD seizures. I used to have to hold her for an hour.
Canna delivered via her Cpap halts the seizure immediately. The side effects are giggles and sleep.
In a well-run facility, and I realise there are nothing like enough of them, the schedule keeps seniors on the move in an enjoyable way from eight in the morning until they're ready for bed. But they also have teams of staff, whereas you have a team of you.
You don't have any day centres or anything like it near you?
Sleep is crucial, especially for someone with dementia. I notice that when mom doesn't get enough, the next day is a disaster.
I didn't want to lead with this because it sounds so glib and flippant, but I mean it seriously: he needs to be kept awake during the day, for a start. Have you had a look at day care centres or activity groups for people with dementia in your area?
When it's your husband and you're (quite rightly) treating him like your husband, not like a patient or a child, it's very difficult for you to set rules and establish structured routines; so the answer is to find allies who can.
I'd try that first and see; but it would also be sensible to look ahead and think about where you want to go next with your husband's care. Is or was the aim to care for him yourself at home throughout? Have you researched the options?
I tried melantonin. It seemed to work for a while. It doesn't seem to help anymore.
I use earplugs.
I take a low dose, helps me sleep better, all natural and not habit forming.