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Dr's reluctant to prescribe medications, he has seen several doctors, but he's scared to death of darkness and sees things crawling around in shadows.


Taking:


Namzaric 14/10 mornings


Lyrica 25mg at night


Xeralto for blood clots


Melatonin at night


Incontinence, Balance issues (wheelchair), Gps locator watch, Bi-pap machine if sleeping, Nanny cam, adult daycare with lots of activities, semi keto diet, coffee mornings only.


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Nothing helps my mom sleep. She has been known to stay awake for 5 days. I feel for you and I am currently in the process of getting help for a nursing facility. It is financially impossible to afford right now so I am stuck in an exhausting situation. Thanks to this group we are not alone.
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Levans2008 Dec 2018
Infinity see my answer above.
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Okay so as a caregiver u must get sleep.I will tell you i was experiencing some sleep issues with Mom. But I got 2 toddler gates. She has access to 2 bedrooms and a bathroom. But I gate her off from rest of house otherwise she wanders misplaces things and hides things in her room.We have a routine for meals and medicine and showers. At night she is gated in her bedroom otherwise she fixates on the bathroom. And she has fallen asleep on the toilet! Afraid that is unsafe. So it took a few nights for her to be reminded she has to stay in her room for the night. That that was her area only. And she can come out in the morning after she sleeps! Shes wears a brief and is incontinent anyway so I do not worry about that part. I suggest you toilet her before putting to bed. Talk to PCP about melatonin. Mom takes 10 mg nightly. Also be sure she gets enough activity during the day. But if she is not slept for 5 days see if shes in pain....or could be anxiety....
Do a bedtime routine so she can learn to wind down. Most of us need a wind down routine at night this is normal to fall asleep. Hang in there. It does take alot of problem solving skills with the elderly and their many dx.
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Birdman Dec 2018
Wheelchair his only way of moving around 'out of bed', I'll remove that at night and leave the lights on because 'those things don't like light' and don't seem to come out to bother him unless there are shadows. If he's tired enough he might sleep out of boredom. We'll try fencing in the accessible space to bed only at night while fighting off invading critters with lights. See how it works?
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Is this your husband you're looking after? And he's only 54 years old?

Oh HECK!

Would you consider a temporary placement in a specialist unit? If nothing else is working then he must need constant reassurance, and it is simply not possible for you to stay awake with him indefinitely - it'll kill you.

I would also ask for a review of all medications, giving thought to a complete reset: stop everything, reintroduce with constant monitoring.

Is any one of those doctors weighing in your health as a key factor in his care plan? It is important that somebody does: what happens to him if you break down?
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Hallucinating and delusional thoughts I guess are part of this stage. Because of recent litigation against Dr's that prescribe antipsychotics for Alzheimer's I guess getting a prescription for him at home will be next to impossible. Nursing homes tend to overmedicate, so that's not a good option either.
Took away the wheelchair at night so he can't get out and about, leaving the lights on and adding more so he doesn't freak out.
Fall device will let me know if he falls. That's the best that can be done I guess for now.
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truthbetold Dec 2018
I began to give my dad Serenity in the day and Serenity PM at night. I think it is working. The higher fats and no xarelto for my dad. THe dr took him off because of the risk of hemoraging. You have to find out where the clots are because they may not be in the arteries. ALso give Serrapeptase and Nattokinase, CoQ10 to keep things clear and flowing,.
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I read that in previous centuries it was accepted that there were two sleeps in each night, with a wake between them. Books of prayers were printed for reading and reciting at the waking period. Could you find a sound-only tape or DVD that he could start when he wakes or gets restless? I use that, very soft but enough to stop my mind going round and round. It helps me go back to sleep, and is soothing if I don't drop off.
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I know you are already giving your beloved melatonin, but have you considered meatonin plus L-theanine? I have started giving it to my beloved (who has mid -stage vascular dementia). It has helped with some of the night time issues--sundowning, etc. That is not to say it is perfect every night, but HE certainly sleeps better than I do--and yes, I take it myself. I have supplied a link with some information on L-theanine for you. https://www.thesleepdoctor.com/2017/07/11/understanding-l-theanine-sleep-better-night-feel-relaxed-alert-day/
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After reading many comments, and much research as well, I am happy to report that the current 'plan' is working for NOW.

1- Wheelchair was removed, so he doesn't get out of bed at night.
2- Lights are left on so critters don't come out and attack him in bed.
3- Flashlight was left next to the nightstand to ward off any just in case.

He still only sleeps about a total of 4-5 hours per night (sporadically), but falls have stopped and he doesn't get up. He still complains of the 'Shadow things', however, I found out from many Doctors that because of federal regulations none of them will prescribe antipsychotics out of a controlled environment (nursing home) for Alzheimer's patients.
Also I noted that many nursing homes still tend to overuse the medications as a chemical restraint, and many times over medicate to save staff hours on individual patients rather than look for and address the triggers. I'm sure that the Medicaid supplemented homes that we would be forced into using is within that realm. Because of Federal regulations I'm not sure how they are still overmedicating patients unless they are 'fixing' the reports back to doctors to make it look needed or something. Anyway, best to keep him out of a place like those as long as possible.
On a side note, If the Nursing homes wouldn't have over prescribed the drugs to begin with, we would still have a drug available to use at home 'in the correct dosage' to calm these hallucinations. Shame on them!
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ChrissyB Dec 2018
His hallucinating makes me think Alzheimer's might be an incorrect diagnosis. Exelon worked wonders for my Grandmother who suffers from Lewey Bodies Dementia/Parkinson's.
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Try 2 spoons of tart cherry concentrate (Pure Planet) 30 minutes before bedtime. It works on me!
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Some people use music with delta waves or beta waves ( I forget which ones help your brain go to sleep) and swear by it. You play the music throughout the night and it’s supposed to work in your subconscious to trigger a sleep cycle. For me that didn’t work, and I upped my melatonin dosage until I found the dose that worked. 5 mg of melatonin works for me and stopped the shadows and other things that appeared on the walls and in my head that would torture me when I’d fallen asleep “ naturally”.
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Birdman Dec 2018
Soft piano music playing all night already, and melatonin dose is already 10 mg.
His aunt that also suffered early onset alzheimer's saw elephants in the ceiling that were going to fall on her. Nothing helped her until they gave her Haldol, then elephants went away. Unfortunately, nursing homes have abused that drug and it it not prescribed at home in a low dose to deal with these things now. So he just gets to see them all night lurking in the shadows behind the dresser being warded off by bright lights.
As long as he stays in bed, doesn't fall, and let's everyone else sleep I think it's better than a nursing home.
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sounds like the med people don't want to deal with liability/risk of meds? WOuld you consider a sleep specialist? Maybe a long distance consult if you're not near resources. Also if sleep and quality of life are impacted (not to mention your own!) I'd be wondering about a lighting consult to alleviate the dark corners/shadows. Is the Bi Pap machine essential? Is that interferring/causing some of the problems?
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Birdman Dec 2018
We saw a sleep specialist twice, two different ones. CPAP is needed as his breathing completely stops when he does sleep. They can't give him sleeping pills because it will make his apnea worse. He does seem to know not to sleep without it on, so it isn't problematic for us YET, I'm sure that might soon change as he is declining rather fast due to lack of good sleep.
I just wish federal regulations effected nursing homes, and not the low dosing application of antipsychotics at home so EOAD patients could not be scared of the dark and get the rest they need.
His rapid decline by not sleeping well is going to force us into nursing home shopping. Wise shopping around, and talking to family members of patients.
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The critters wandering around at night might be Charles Bonnet syndrome -- fairly common and, so far as is known, benign condition associated with vision and age.

When mine appear, usually as dark shadows creeping around, I leave the light on so I can see that there's nothing there. Eventually they stop coming (or I start to ignore them). It's an annoyance -- like noisy neighbors.
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Birdman Dec 2018
He actually sees them, even with 'lights on' in Gray shadows. 100% light keeps them from attacking.
These are full hallucinations. Dr seems to think nursing home is the only option, but I already Know staff will just chemically restrain him to vegitive state until death.
Not an option yet while he can still talk and visit with friends.
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Very informatiive/educational responses here. (I'll keep this list myself.)
I'm glad some new behaviors in place are working. Consider:
(1) VALERIAN ROOT is a flowering plant, the root of which is dried and used as an herbal remedy. Valerian has been used in alternative medicine as a possibly effective aid in treating sleep problems (insomnia). Other uses not proven with research have included treating anxiety, stress, depression, attention deficit disorder, chronic fatigue syndrome, tremors, epilepsy, menopause symptoms, and other conditions. It is not certain whether valerian is effective in treating any medical condition. Medicinal use of this product has not been approved by the FDA. Valerian should not be used in place of medication prescribed for you by your doctor.
(2) P.M. Foot Massage to relax.
(3) Comcast TV stations have 'music' 943 series (or in that area). Some are very soothing. I listen to Channel 943.
Gena
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Birdman Dec 2018
Valoriana root at dusk seems to reduce anxiety from his sundowner syndrome. He has taken that for awhile. Doesn't help him sleep anymore.
Pluto tv has the fireside channel with a fireplace burning and soft piano music playing. That keeps him calm and allows us rest even if he's not sleeping. Thanks
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Hi birdman, I soo sympathize with your lack of sleep. We've had the same problem since my mum, moderate/severe Alzheimer's, came to live with is in May of this year. Mum and I have never been ones for pill popping but we were desperate. Mum was also very agitated from leaving her home which she loved. So we took the plunge and asked Dr for Olanzapine plus zopiclone. It didn't help at first but now we've seen a massive difference, She's sleeping from 8pm till 5am now .which is pretty good. Ask for meds if insomnia is persistent..
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Birdman Dec 2018
They won't give him a sleeping pill due to severe apnea. Thanks for your advice.
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Somewhere I read that lower doses of melatonin e.g., 0.1-0.5 mg are better than higher doses--the only catch is you have to give them every 3 hours! There are time-release melatonins, and I take one almost every night. I usually go to bed around 10:30 p.m. and wake up about 3 or 4 a.m. Then I go to bathroom, come back to bed and am usually asleep again for another 4-5 hours. If I need to get up really early for an appointment, I don't take melatonin, but 50 mg benadryl. That works well, but it leaves me feeling groggy for a couple of hours.
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Birdman Dec 2018
We give him 10mg extended release melatonin already. He wouldn't sleep at all if we didn't.
We tried over the counter sleeping pills, and his hallucinations went from nights to all day as well. Even after stopping the sleeping pills it took a couple weeks to get him normal during the day again.
We were thinking nursing home if he didn't come back around again because he would see someone sitting in his wheelchair, and claim it was theirs and not his. Thank God he recovered from the sleeping pills, at least he is fairly capable during the days again. We just need him in daycare and clear of the kitchen. He is not safe in the kitchen day or night!
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My 90 yr old mother lives with me, my husband & 14 yo daughter. I’ve been caring for her for many years, but 18 mos ago dementia worsened, falls became more frequent, and I took on role of 24/7 caregiver. She’s had severe sleep apnea for years & refuses to use cpap. When I started to care for her during the night, I found she was waking & going to the bathroom every 1-2 hours all night long (tested - no UTI). That level of waking took its toll on me. I had to see cardiologist for heart palpitations & learned about Seroquel from him. Mom’s doc prescribed 1/2 of 25mg tab before bed & after a couple of weeks, Mom is now only waking a couple of times each night. We originally tried melatonin & essential oils, but those didn’t work. Seroquel made a huge difference. Although we were concerned w/risk of overmedication w/the apnea, we were able to find dosage that helped her sleep w/o compromising her breathing more than she has already chosen to do by not treating the apnea. And w/her improved sleep, my heart issue has also improved. Hope this may be helpful to someone.
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ChrissyB Dec 2018
We also do 1/2 a seroquel a night. It made a HUGE difference and there were no other decline issues from it. At 1 point we did have to go up to a full 25/ night but we were able to go back down after a bit.
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Birdman, you are getting lots of thoughtful responses (even if some of them don't apply in your situation.) I have comments on two things:
1) "Also I noted that many nursing homes still tend to overuse the medications as a chemical restraint, and many times over medicate to save staff hours on individual patients rather than look for and address the triggers." This may be true in some places. It is not universally true. Both my mother and her sister were in (different) Medicaid-supplemented nursing homes, and neither used drugs as chemical restraints. It took my mom several months to settle in and feel secure but once past that she blossomed. The last two years of her life were more comfortable and accepted by her in the nh environment than when she lived with one of us. Of course you need to investigate and select a home carefully, but it simply isn't true that all homes use chemical restraints. (I'm not advocating placement necessarily -- lots of factors go into that -- but trying to reassure you that if placement becomes necessary it is not the end of careful care!)

2) Melatonin is not considered a "drug" so the FDA rules do not apply. Unlike drugs on the market, the vendors need not prove it is effective, study for appropriate doses, etc. There is a lot that isn't known about that therapy! Our bodies produce melatonin in teeny, tiny amounts. It does not induce sleep but rather is a signal to the body that sleep should occur soon. It can be used to nudge the time someone gets sleepy, and hence it is helpful for jet-lag. But exactly how much to take and when has not been scientifically determined. My sleep specialist said he thought .8 would be a good dose for me, but because that would be hard to do he suggested 1/2 a 1 mg tablet -- the smallest readily available on the market. There may be a way to use melatonin more effectively for your loved one. If you can find a sleep specialist who has a particular interest in that hormone, that might be worth a visit!

Sleep is a HUGE issue for the patient and also for the caregivers. My heart goes out to you.
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Birdman Dec 2018
We are already investigating NH options in the area, but figure we want to spend some time doing this to make sure it's the right fit.
Also getting legal issues delt with now rather than later.
His lack of good sleep if taking a rapid toll on his cognition, and he won't be able to stay home much longer without medications for these hallucinations before it kills him.
However, a few more months making the correct choice for his LTC I think we owe him.
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Birdman: I am lifting you and your father up in prayer.
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My father had similar hallucinations on Lyrica and his doctor stopped it immediately. Was it prescribed for fibromyalgia or something else? Maybe there’s an alternative. Do you know what else might be keeping him awake? Anxiety, pain, depression, too much light at night, too warm in bed, caffeine, bi-pap leaking air, making noise or needs adjustment, etc? Both my parents with dementia were given trazedone for sleep and it worked well. They also took naps during the day. Also, as we age, our sleep/wake cycles shorten. It’s common for seniors to sleep 3-4 hours at a time, be up for a few hours, then sleep another 3-4 hours, etc. Are you counting long naps in his 4 hours?
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Birdman Dec 2018
He sleeps about 1 hour 4-5 times per day. Daycare keeps him awake all day, and nanny cam makes it easy to make his sleep log. He is visably super super sleepy, but just can't sleep.
We removed Lyrica, and his sleep was further disturbed, we have him on the lowest dose to relieve pain without causing additional confusion. Other meds didn't work for him. Thanks
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He could be stressing about a personal matter he does not wish to discuss with you (which could be anything he considers very private) it can cause anxiety and sleep deprivation and he might be seeing crawling things because of sleep deprivation. Or Discuss taking him off all meds with his dr to see if there is improvement and then introduce each med one by one to rule out which med is the cause.
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Birdman Dec 2018
Dr said Alzheimer's meds weren't doing much anymore awhile back. We stopped them, and he made a drastic drop in cognition in about 3 weeks. Went from dressing himself with prompting to not knowing that a shirt goes over the head. We started back his meds immediately, and he recovered only about 70% what was lost.
Dr also removed Lyrica to see if that keeps him hallucinating, that made sleeping impossible for him and was put back on a low dose.
Tried all the Doctors tricks, and we have only lost more cognition and worsening symptoms as a result.
We tried over the counter sleep Aids and brought his hallucinations out to daylight hours as well. It took weeks to get him back baseline after that one.
No thanks, not dropping meds again. He does not have enough cognition to afford another drastic drop again.
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Gt a strong night light, electric candle or leave a small light on within his sight to face off the fears.

Natural sleep aid include magnesium(healthfood store serve with tea) valerian root(strongest) & soft music(or sounds).

I hope that helps
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My Dad with dementia often keeps us up all night also. He gets out of bed continuously, bathroom run, checking his dresser drawers, calling for the dog, and making plans to remodel the house, etc. There are times when he is afraid someone is coming and he needs to watch for them.

I know it is exhausting. In an attempt to get a nights sleep, this is what I do. Remember consistency is best. Familiar routine is always encouraged, although he does not remember one day to the next, Dad responds well to familiarities.

1. I give him 10 mg melatonin at night, suggested by his primary care doctor.

2. I play Kenny G Christmas music on his cd player, same cd, every night, year round.

3. I lay down with him on restless nights, and reassure him he was a good father, he is loved and he will be helping me if we can sleep now so in the morning we will be ready to go. Maybe leaving the light on will help.

Hope this helps a bit, I know each individual is unique you will have to find what works best for you. It is amazing how they all seem to have similar fears and

Once a man, twice a child. So how would you reassure your toddler there are no monsters under the bed?

Good luck, and know you are not alone.
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It looks like changing his sleep schedule to fit his sleeping pattern has worked best. This weekend he slept 9hrs total both days by allowing him to sleep whenever he wants. It means he's up most of the night and sleeping all morning, but hallucinations went away.
He is happy, easy going, and seem to have more cognition. Completely different person!!!
We'll have to cancel daycare so he can get his rest everyday, make more time for him in the afternoons to get him out some, and a variety of changes to adapt to his change in cycle, but it's worth the benefits. :)

We got the idea after hearing about a nightcare facility in NY that does the same thing. Wish they had something like that here.
Without his wheelchair out of the room he stays in bed and watches TV, so safe enough. We'll just have to get used to the TV all night. Fall device would let us know if he falls or tries to get up. And I can come change him when I do my bathroom break at night as well.
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Birdman Dec 2018
https://jewishhome.org/night-care-at-sarah-neuman/

Link to more info
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try chamomile tea with warm lactose free milk and a little sugar if he can have it. sometimes white noise machines can be helpful as well.
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We are dealing with the same issue of my mom not sleeping at night.  We have gone from sleeping 15 hour days to nothing, she is up every 5-10 minutes, opening the door, going to the bathroom, looking for her teeth in her jewelry box, trying to eat, always saying she is hungry. I cannot keep her out of the sweets, have to hide them from her.  It is driving me insane.  She was put on Namenda and taken off Aricept, if anything I felt she got worse. I am having a rough time getting dr to give her anything to sleep which I do not understand at all.  tried melatonin, no help. I am at my wits end.
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Birdman Dec 2018
Dr's don't want to prescribe anything for sleeping outside of a controlled environment.
We just let's ours stay up all night if he wants, place Healthy snacks at bedside, activities he can do by himself, and no wheelchair at night (he can't get out now).
It's been a few days, and it's working great. He sleeps every chance he gets during the day, and we just let him. So much easier.
The Dr wanted us to force him awake all day, hoping he would sleep at night, his cognition plunged, started hallucinating, irritable, you name it.
We went against Dr's orders and now our house is peaceful.
Hope that helps?
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My DH seems to react the opposite for most common sleep aids. He gets worse with melatonin. Lyrica induced fast hallucination reactions after a brief stint on that, and most all anticholinergics make his sleep much worse. Go figure. He reacts badly to antipsychotics, too.
What has helped him immensely has been gaba (the supplement) and magnesium before bed. Those seem to be a must have for his sleep. Also, a general amino acid, coQ10, and b-complex seem to have helped each day.
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The ANSWER to your predicament is NOT a PILL! It is a technique that will overcome the problem you face due to being CONFINED and without physical exercise, etc. This is NOT a rare problem . You experience a problem I myself have had.
I have 2 things that might very well help. The first is a non-prescription solution that acts as a prescribed medication. It is VALERIAN root tea. The active ingredient in it acts like a Benzodiazepine, and if drunk about 1/2 hour before sleep will cause your head to "nod" followed by sleep.
The only other remedy I can suggest is called SHUTI.
This is a "Behavioral Modification Technique" that works VERY WELL. However, it is on done as part of a clinical trial, which SHOULD be available to you even though it might require you signing up for a clinical trial. Not to worry. Following are the restrictions placed on it as of October 12, 2018, but again, it would be of great benefit.


"SHUTi is currently available only to participants in approved clinical trials and to those with subscriptions or pre-paid certificates.
If you are looking to purchase SHUTi for your individual use or a clinician referred you to SHUTi and gave you a clinician code for a discount, this program is not available for consumer purchase as of October 12, 2018. We apologize for any inconvenience this may cause.
However, if you would like to register to be part of an upcoming clinical trial using CBT for insomnia, please click the interest button below (3rd column).
SHUTi is only available to residents/citizens of the USA, Canada, Australia, and New Zealand."

Here is the website that allows you to enroll:
http://www.myshuti.com

I have gone through a part of this, but without a computer in the trial I was in, I could not finish (computer problems).

I strongly suggest you contact these people. The modification runs a couple of weeks but is PROBABLY the only (& best) way out to truly RESTFUL SLEEP.

Good luck!
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You've already been told that sleeping part of the night, then being awake for a couple of hours, then returning to sleep was once the NORMAL way of sleep... in fact was normal for all the centuries pre-dating gas or electric lights. I notice that suggestion has been buried under a lot of other good suggestions, but it really bears more serious consideration. In "olden days", especially in winter, the dark hours were too long, so people woke, talked, had sex while the children slept, etc. Please "Google" "segmented sleep" for more information. Accommodating this can indeed be difficult, but it helps a lot to start off by considering it "normal" and working from there.
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About the melatonin - we tried this and she was taking it several nights per week, and then happened to see an article that taking it regularly would change the cortisol levels and actually cause insomnia. Doctors only seem to want to either give this or some prescription medicine that totally knocks them out during the day also. We have had to use various herbal sleep medicines and change them around.
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I give my husband celestial seasonings sleepy time tea an hour before bedtime. This gives the tea time to work and he has time to relieve himself before bed.
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