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!
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!
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.
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?
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.
Link to more info
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.
Natural sleep aid include magnesium(healthfood store serve with tea) valerian root(strongest) & soft music(or sounds).
I hope that helps
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.
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
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.
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.
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!
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
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
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.
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.
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.
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.
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!
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.
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?
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.