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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.


Help!

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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Reply to Countrymouse
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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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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 9, 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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Have you asked a pharmacist if it could be a side effect of medication?
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busymom Dec 8, 2018
I agree, medications have side affects. The pharmacist is a key person to discuss this with. Amazing how much more they know about medications than many physicians do. Also, some physicians just don't look at all the medications being taken by a patient.

Because I have back issues and my doctors don't like many sleep aids, my spine surgeon OK'd (as did my family physician) for me to take Benadryl at night. I only take 25 mg (suppose you could take an even smaller dose), but that's 1 of the pills in a typical bottle. For some people Benadryl does the opposite of causing them to be drowsy, so you have to know how a person responds to it. I also don't take the various medications that is listed by Birdman, so I wouldn't tell you to try this without your checking with the doctor and pharmacist.
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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 7, 2018
Infinity see my answer above.
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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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Reply to LaborofLove2
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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 7, 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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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 8, 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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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 8, 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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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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