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MANYBLESSINGS Asked October 2010

What type of sleep aid can I use for my mom with dementia who's having trouble sleeping?

Does anyone have a suggestion as to a sleep aid that will give a dementia sufferer sleep vs. increasing the agitation, confusion and only making the dementia worse? My mother is 95, a hospice patient and lives with us along with my 85 year old father-in-law and our 4 month old grandson. My mother has been up numerous nights extremely confused. Of course, everything she says is very real to her and when I try to either reason with her or try to tell her she can't leave at 3am, she digs her heels in. There is no reasoning with her and I can't tie her to the bed. I need something to give her peace from her deeply confused state. I am exhausted and it breaks my heart watching her struggle with a mind that lies to her. Last night I was up all night trying to keep her from taking the car, that she quite driving 5 years ago, to pick up her brother, who died 12 years ago. She has no balance, her legs are weak and she can barely walk yet was fighting me tooth and nail because I had my hand on her arm trying to keep her from falling down. It is extremely frustrating for not only my family and myself, but her as well. I know if I could just give her a pill during those times that would knock her out and give her a good night's sleep by the next morning life would be better......for us all. Last night, I gave her a Darvocet, two Ativan and an anti-depressant that was supposed to help. HA! I know the doctors don't want to prescribe sleeping pills because they can be deadly in the elderly. I am exhausted because I care for my grandson during the day as well as my mother and now I am up all night too. I need some rest. I love my mother with all my heart and soul and would do anything for her comfort. All her life she told me, "If I EVER lose my mind, just pull the plug because I NEVER want to live like that." And here she is alive in the shell that was once my mother. It is so, so sad because I know she is miserable, exhausted and trying to make sense in situations when there is non to be made. I sure could use some suggestions. No she is not hungry, needs to use the bathroom or any of the other issues sometimes associated with agitation. It is her mind making the unreal seem real to her. I feel so awful and it is heartbreaking to watch and deal with. Thanks!

chl64 Nov 2010
That's been my world for the past year. I still can't believe it's a problem the medical field can't seem to manage. My mom was given Lorazepam (1 mg) which would put her to sleep but she was up and running wild 3 hours later. When she went on hospice (she's off now) her nurse said I could give her another one around 2am. That helped a lot but our answer came when my brother who has terrible (untreatable) insomnia told me about an herbal remedy called "Knock-out" (melatonin and valerian mix I think) which has worked. Occasionally she still gets up around 3 or 4am then I give her the Lorazepam. Her doctor didn't seem to thrilled about an herbal remedy but it's worked and he hasn't come up with a better solution. Good luck. I know how exhausted you must be!

Just a little side note: A few months ago I started sleeping on an air mattress on her floor. She has a child's bed rail which I've read IS A BIG NO NO because they'll hurt themselves climbing over them and I'm sure that's true. In our case however she just rattles it and starts yelling (she could slide down and around it if she was really trying to get out). Anyway, that wakes me up and it only takes a minute to give her the Lorazepam (same as Ativan I think??) and we're both quickly back to sleep. Made a world of difference to me. Sleeping in her room on an air mattress sounds awful but it sure beats chasing her through the house at 3 in the morning and trying to get her back into bed. I could never get back to sleep after wards.....

EllerySir Apr 2016
Wife has FTD final stage. Acute since 2011. Hellish. Aggressive, resisitive, combative, non communicating, little cognition. She was active all day and slept little at night. She could not attend day care as she beat up the staff. She could not go out in public.
Physicians tried all the common Rx for aggression and sleep. The Rx either did nothing or doubled her over 90 degrees and made her drool. She was still aggressive. She just wandered the house, bumping into walls. And we hated the thought of dumping more chemicals into her, as we are suspecting BP Rx as either cause or severity of the disease.
She gets daily oatmeal with prunes, coconut oil for digestion and brain, honey for antibacterial and lemongrass oil for relaxation (1 drop = 6 mangoes).
Watermelon, because she is stubborn about drinking. We have to hand feed her, usually, but she will feed herself watermelon. We found that cut up watermelon chunks is a great snack if eaten while still a little frozen. Also frozen grapes are the same. We freeze them in quart baggies. We found that both watermelon and grapes become sweeter when frozen.
To get her to drink, we alternate a spoon full of food and a spoon full of water. We use a large spoon.
Meals like chicken and rice, we add a lot of water and make it a soup.
She was often compacted, out of fear of producing stink, so she would always clench.
She was that way as her former self. It is more critical now to encourage production. Frequency, amount and consistency are a topic of celebration daily in this house. We also monitor urine output and are surprised that she can produce a gusher several times per day. It doesn't seem like she inputs that much liquid.
We use a 10 function urinalysis strip and it shows her as half normal hydration, but we live in the desert, so full hydration is difficult even for me.
The test strips also indicate UTI, which had been a problem for years. A UTI will certainly cause night wakening. No UTI's since April 2015.
After 4 years later, an old friend called and suggested something that has worked and now we get a sweetheart most of the time in the day, better communication and often full nights of sleep. We now can tell when she is hungry or needs toilet.
She is grown 2 year old who can't form words or respond, but she can now rattle off a story of jibberish and laugh. We don't know the story but her laugh, makes us laugh. Most hours of the day are no longer hellish and she sleeps 9 PM to 5 AM. On some occasions she will wake to go pee in the middle and it is the greatest miracle, that she knows and can let me know.
We have been giving her an equal THC CBD combination, twice per day. It has been found that the CBD counters the psychotropic affect of the THC. It took over a year to get the right dose and combination, but the results have been consistent for 6 months, now. We often are wide eyed and open mouthed when words we haven't heard in years, happen. I was wiped out of her existence in 2012, but I have been getting unsolicited hugs, lately. We wish we had known 5 years ago.

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anonymous101100 Nov 2010
chl64, we have been thru the wandering over a year and I think its finally under control with the 3 depakote (knock on wood). Just wanted to suggest something to you. We have moms door cut in half and its locked on the opposite side. Its wonderful! She can get up but not out and her room is clutter free safe. A lot of times she goes to the door, then back to bed, or in her chair or recliner. We also have chains on the tops of off of our exit doors but she cant get out of her room, but can look out in the hall an across into our room . We had her mattress on the floor low when she had the broken hip just in case, I also was doing the sleeping on the floor before. good luck with the melatonin, it worked for my mom at first , but then she started not sleeping and I increased it and then she started having bad dreams on it. THe depakote works great, and no naps. Be SO careful on the lorazapam type drugs, my mom tried them and sometimes she was hyper on them, sometimes not, but they constipate terribly. My Mom takes a teaspoon of miralax in her coffee or tea 2x a day. good luck

SueC1957 Apr 2016
I read through all 62 entries just to make sure that no one had already suggested this. It's controversial but has been widely tested and WORKS. I have a friend who had this same problem with her 93 year old grandmother and 95 year old grandfather. She went through ALL the drugs mentioned here, nothing worked. (Amazing how frail, old people can be SO indestructible!) Then, someone recommended "green pills" for their constant hyper state. (OK, now don't shoot the messenger,(me). Green pills are THC (tetrahydrocanabisinol, the active ingredient in marijuana) in a pill form. When the hallucinations and anxiety kept the whole house awake all night, she took the steps to find out what was needed to get them. You apply for a Medical Marijuana card for them (we live in California where it's legal), have a consultation with a medical doctor and receive the card. That allows you to buy prescription medication for their disorder. The store where you buy it can assist you with the different varieties/strains/types. I'm told there are different types that can help with certain conditions. It works well by calming down the anxiety/hallucinations and often will promote sleep. It is all natural, being derived directly from the plant. It was the saving grace for my friend for both of her grandparents. I'm a nurse and I don't see a problem with this approach. You can't overdose on it and it's not toxic. The oral form lasts longer than the smoked/vaporized version (not that the elderly would be smoking it), so you don't have to worry what will happen after 3 hours. Neither one suffered any side effects and it's known as an appetite stimulant also, which could perk up their eating. (The young people used to refer to it as "the munchies".) It's not cheap, I think about $2.-$3.00/pill, but more than worth it to prevent an out of control night. It doesn't cause the CNS impairment you see with alcohol or narcotics. In case you're wondering, No, I do not use it in any way, shape or form, but I think it's useful in the predicament of what to give the demented who suffer from not being able to calm themselves down. Just my 2 cents.

EllerySir May 2016
We never smoked or drank. MJ was the last thing we would consider. Pharma drugs did not work and/or had negative side effects. We had tried a glass of wine and that demonstrated the possibility. She had been non-communicating for a couple years and angry all the time. She would sleep a couple hours then up a couple hours. The wine made her communicate, remember us, and laugh at stories. It was difficult enough to get her to drink anything and we did not want the alcohol side affects so wine was not a permanent solution.
She only has one kidney. A friend recommended MJ and I learned to make cannabutter. A postage stamp sized piece 1/8" thick on cracker became the normal dose and like the wine, brought her back into our world. And even better the MJ comfort lasts for several hours at a time. We have noted a healing at times when we knew it was out of her system. Our state allows medical use and we got her a card. We have experimented with different delivery methods and found that candy bars with equal amounts of THC for the brain and CBD for the body is perfect. The dispensary advised that when CBD and THC are use together, the CBD nullifies the psychotropic affect of the THC and causes a better over all calming. That has proven to be true. It is a new science.
The candy bar begins working within a half hour and last for about 4 hours. We discovered a concentrate that doesn't kick in until about 5 hours but lasts about 6 hours.
We put a dot of the concentrate on the piece of candy bar and she is good all day. Learning the dose amount has been an adventure. With either one, after the obvious calming has subsided there is a long time of 'coming down' which is also a calming time. We are seeing a healing with this, also. The calming time possibly allows the brain to rest from the chaos and promote healing.
When she is constipated, the edibles do not work at all so we just tried a different delivery method. She was never a smoker, so that would not be an option. We bought a pipe and some regular smoking MJ. We used one of her old full full face Cpap masks and cut a hose to about a foot. We would take a couple hits from the pipe and blow into the hose. We were concerned that never being a smoker, it might choke her, but she actually accepted it. That delivery is almost instant but only lasts a couple hours.
I still feel a little guilty giving her a feeling she never would have sought in her other life, but she is so much happier, we laugh much, she sleeps through the night.
And we are not dumping chemicals into her system.
It has been 5 years now, and we still can not comprehend the internal chaos that she is dealing with.
We are thankful for the natural relief.

Scotty Nov 2010
My husband has Frontal lobe dementia. I discovered by giving him a Tylenol pm before bed usually keeps him asleep till morning.I would check with you Dr. first because you don't want to mix drugs.Wish you well
Scottie

Starfaced Sep 2017
Read nearly all of your posts, have more to go. The thing that jumps out at you while reading is that we NEED some help. We're doing all this work, not taxing the system, keeping our Beloved at home, but this is HARD. Have Hospice now ten days for my 96 year old dad who has been sleepless and moaning all night long. Nurse suggested he may be constipated and with a gloved, manual check, she confirmed and used a suppository. Never thought if it because he was producing, but not commensurate with what he was eating throughout the day. He has his legs drawn up, not sitting up, and yells in pain if I try to unravel him. So late night yesterday, I thought....heating pad...ohmigosh what was I thinking.
I had it lightest setting and had my hand resting there to make sure that it was not too hot. Well, with the gurgles produced, I could tell it was like a garden hose with a kink in it, and it just got relieved. This morning was better, slept for three hours, and Nurse came with her insights, her work uhhhh, paid off. Without physically moving around or sitting home, the fecal material is just
not being pushed along. We judged that was his moaning, he felt pain and couldn't suppress the sound of distress. The sleep aid recommended with a call to the doctor was sent, I just looked up on Wiki. It is not recommended for dementia patients. Oh, and that was two hours ago,and it's not working either. Will try the suggestion given on this board for children's cherry benedryl. Will also alternate with magnesium caps which work for me. I must say though, my experience with any and everything, nothing works after Day Three. Nothing. Have had luck with Tart Cherry juice for myself and the dad, earlier in this process when he was up and about. Regular cherry juice doesn't work, and hold on to your hat ...this stuff is tart, and expensive, but a little goes long way, I use it in ginger ale, not too much, counter productive, caffeine and all. Never gave him melatonin. I don't use it anymore, but it never put me to sleep, but I slept more soundly with pleasant dreams. Where is medical marijuana? The substance works on inflammation, it is inexpensive by comparison to prescription drugs. It is nature's way....where is it? Living in Maryland, I can tell you where ours is....it's stuck in committee. The law was passed four years ago. What was to have been summer has turned into 2018. They say they don't have enough in production as yet. Yeahright. What it is really is that not enough thumbs are on the scale, they need more time. So, short of moving to CO or CA, we don't know if these harmless tinctures and oils work for dementia patients when nothing else seems to. The hemp oil can be sold legally in this state and would probably work. What's happening here is....we 'age out' of this problem. Eventually the patient meets The Happy Reaper and former caregivers are out of work and too tired to look back. We have to do better. The paucity of medical assistive devices is shocking. No tools. No patient lifts...there should be a simple side-bed pullout. Roll the patient on the inflatable, roll him or her back when the bed is changed. Rooms should have a garden hammock for those nights when you need to be close by. All hospital beds should have overhead triangles so the patient exercises to keep upper body strength. Where are these things? A hospital bed with something like an overturned playpen, soft protective edges and netting and a bell so he or she can alert you, but the wandering patient stays put for a few hours. Anyone wishing a self inflating mattress to put near the bed to make for a happy landing....look to Houzz App on their Shop link. I got a good single bed reversible mattress there, excellent price, made in the USA. Oh, and here's a suggestion....there are, for your iPad, wwwwwonderful long running sleep videos. One is a train ride, it runs for ten hours....you could embellish the experience by packing a lunch and saying 'don't forget your sweater'. Train rides might cure dementia all by themselves. Readers....This board is great, but we have to demand some changes. We don't have the tools needed...the items might be in a sports and camping store and a toy store or a tool store, but what we need is not in a medical supply store. Oh, here's some innovation....sheets with Velcro tabs. A 'draw sheet' with soft handles to go beneath the patient. Rocket science?

NancyH Oct 2010
If hospice is taking care of her, can't they give her something to help her sleep?

MiaMadre Oct 2010
The Mayo Clinic has a health section on Alzheimer's and there was a comprehensive article on SLEEP DISORDERs (AZ00030). Please do a google search for the complete article. We also talked to Mom's doctor about using MELATONIN to promote healthy sleep.

I am going to include some of this article, in hopes of helping you. I would ALSO talk to hospice care and get their input, as they should be experienced with this situation.

How to promote a good night's sleep
Sleep disturbances can take a toll on both you and your loved one. To promote better sleep:

■Think light. Exposing your loved one to a few hours of bright sunlight in the morning may improve his or her sleep at night. Light therapy with a specialized light box may be helpful, too.
■Avoid caffeine and alcohol. Caffeine in soda, tea, coffee or other products may contribute to sleeplessness, and alcohol can contribute to confusion and anxiety. If your loved one insists on having a drink, offer a soft drink in a familiar cocktail glass or serve nonalcoholic beer or wine.
■Manage medications. Find out what time of day your loved one should take his or her medications — morning for drugs that have a stimulating effect, and evening for drugs that make your loved one sleepy. Note that sleeping pills are generally discouraged for people who have Alzheimer's. These drugs can increase confusion and the risk of falls.
■Encourage physical activity. Plan your loved one's days to include walks and other physical activities, which can help promote better sleep at night. Taper your loved one's activities as the day winds down, however. Physical activity close to bedtime may leave your loved one too energized to fall asleep.
■Limit daytime sleep. If your loved one needs a nap, make sure it's short and not too late in the day. Have your loved one nap on the couch or in a recliner rather than in bed. If you think staying in bed too long in the morning contributes to nighttime wakefulness, wake your loved one earlier.
■Establish a bedtime routine. Do the same things in the same way every night, such as brushing teeth, using the toilet, listening to soft music and rubbing your loved one's back. If bathing or dressing for bed is difficult, do it earlier in the day. It's also important to create a comfortable place for sleeping. Make sure the temperature in your loved one's bedroom is comfortable. Turn on a night light. Place security objects, such as a favorite blanket, within easy reach.
■Treat underlying conditions. If you suspect that an underlying condition — such as sleep apnea, depression or pain — is interfering with your loved one's sleep, consult his or her doctor. Treatment may lead to more restful sleep for everyone.

chl64 Nov 2010
Lorazepam constipates????? You can probably guess that's our current problem :( I'm afraid you're right about the melatonin mix. Nothing seems to last for very long. I love your half door idea. She doesn't seem to need the sleep. I don't care if she's awake as long as she's safe. I sure would love to sleep in a bed again!!!!!!!!!!

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