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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.

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Could he have FTD or another dementia than standard Alzheimer's?
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.
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Donvee, please make sure that you read NancyNurse’s post of 23 April. I really think that’s your answer!
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Polyester bedsheets are an irritant and disturbs sleep. Even the blends.

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.
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As someone with my own sleep issues, I find that alternating Melatonin with herbal sleep remedies (prefer without valerian but all contain hops) works, emphasizing the latter (not full dosage on bottle). The Melatonin works if used for travel or every few days.
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llamalover -
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...
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crzyhorseldy: Wow. You are fortunate. Not much would wake me up now and when I was caring for my late mom, I never really rested. I kept one ear open. That was really hard. I am glad that this works for you. Good luck.
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With advise from our doctor I have been giving tylenol PM to my husband instead of sleeping meds at bedtime. This seems to help.
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My DH with PD has vivid dreams, sometimes paces up and down the hallway at night. used to call out for me. I just lock my door and unless I hear something totally catastrophic, I don't respond. He has learned that he has to take care of his own business after I go to bed. It was hard at first, but after so many nights of lost, or interrupted sleep (which is just as debilitating) I had to find a solution. This has worked for me for that last 2 years, and he hasn't suffered, still sleeps all he wants at night and during the day, I get my much need 8 hours and am able to function and care for him as I need to. Just say NO is all I can offer. It works for me
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Donvee Apr 2019
Thank you. Makes the most sense. I have been starting to do that. Hope things are going as well as they can for you.
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Melatonin 5mg . Don’t let him sleep during day. No coffee.
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How about a day care facility? Ideally, you could use a night nurse because you need your rest, else you'll be good to no one when you fall ill. Not if, but when.
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I have this same issue. Mom sleeps during the day and is awake and alert at night. Last night we were up at 3am and I was preparing a snack for her to eat. Trouble is - I work from home all day while she sleeps they she wakes up when I am tired and ready for bed. Looking for a solution too. Trying g to keep her up in the day was impossible.
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Can you get a caregiver to come in for overnights to see to his needs so you can sleep?
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Indica edibles or smoke. Christy would sleep an hour or two and then keep me awake for the time to go back to sleep.
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.
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debi2debra1 Apr 2019
Thank you for replying to the above question! I too having problems with my husband I sleeping! ( my problem will be, my husband will not wear his Bi-PAP so what do you do in this situation‼️
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MargaretMcKen he was able to cope in the nursing home because he had no choice. The nurses made sure he was comfortable and everything was in reach and then turned out the lights and goodnight. No wife to jump to every time he yelled. Amazing as soon as he learned that they wouldn't jump for every little thing he would settle right down and sleep all night. Mom lived another 21 years of good health.
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He won't stay on a routine because you haven't put him on one, and it's not working for either of you. You need sleep. Without sleep, everything else will be more difficult for you. Your husband's needs are only going to increase. You will burnout trying to meet his needs.
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Need, I know this almost impossible in a home setting but you have to wake her up *for* something. She can't concentrate on a tv program, partly because she's exhausted, 'cos she's been awake all night 🙄, and she can't read or amuse herself. So - taking her out for a walk. Active conversation. Craft activities in a group. Singing. Chair-based exercise. Visits from pre-schoolers. Visits by minibus to garden centres. The sky's the limit in some settings.

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?
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His doctor needs to get involved. And a sleep aid is actually what he needs. You may need one as well. Did you know you can die from a lack of sleep? Sleep aids don't hurt a patient with dementia, if anything they stave off the disease by allowing the person with it to have a better quality of life. Why would you take that away by not helping your husband, as well as yourself, get a good night's sleep? Keep us posted.
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Mom has the similar problem with getting up at night multiple times. Unlike grandma she is awake during the day and does the bulk of her sleeping at night. But she still gets up 3 or 4 times a night for 30 mins to an hour at a time and mainly sits on the toilet without really using it. I've talked about this with her neurologist and psychiatrist. Both didn't think it would be a good idea to put her on anything to make her sleep more soundly at night other than melatonin.

Sleep is crucial, especially for someone with dementia. I notice that when mom doesn't get enough, the next day is a disaster.
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What support are you currently getting with your husband's care?

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?
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I've tried keeping grandma awake during the day. I tried coffee, tea, I keep the drapes open. None of it seems to work. Like right now as I type this, she's sitting her in a chair sleeping. If I wake her up, she'll be asleep again in about 5 seconds. So unless I'm constantly waking her up, how would I keep her awake during the day? She does a bulk of her sleeping during the day while being active at night. It's like her cycle is reversed. Melatonin worked for a bit but doesn't seem to anymore.
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That sounds like grandma. She now yells like she's used to do only when she's fallen. Now she does it for everything. Mostly it's to let me know she's hungry.

I tried melantonin. It seemed to work for a while. It doesn't seem to help anymore.

I use earplugs.
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See if her doctor can help.
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Wow, sounds like my situation. Check with his doctor, he should be able to take melatonin to help him sleep. Doctor can prescribe higher disease than available OTC.
I take a low dose, helps me sleep better, all natural and not habit forming.
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My father in law did this to my Mother in law. Difference being he'd had a stroke and couldn't do for himself. She would try so hard to make sure he had everything he needed right nearby when she would get him ready for bed. Drink at beside, a snack nearby, the urinal in reach and a blanket on and another folded at his good side. He would still wake her repeatedly all night long. We could see that she was running on empty and were afraid for her health and wellbeing. We told Dad if he couldn't at least do his part in letting her get some solid sleep nights that he would have to go into a home. After 3 years we finally convinced her to do just that. Guess what? Once he was in the nursing home he could sleep all night and take care of his own "needs". Maybe reinforcing to him the need for your own rest so you will be able to care for him and if not looking at Memory care for him. Amazing how that sometimes will hit the spot. Or even having someone spend the night a few nights a week so you can get some well earned shuteye.
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Why do you think he could cope in the nursing home? Any guesses?
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