Any experience with sundowners and medications to help sleep?

SONNYmarcus: What a negative post - 'we all start dying after birth.' Goodness, that did not need posting.

My mom is 80, been living with me since last November. Up at all hours, shuffling thru drawers, closet, gets fully dressed, knocks on doors that are closed, tries to go outside etc. We now have inside locks and set our house alarm at night because we have a pool. I rarely get much sleep, Dr will only allow melatonin.. which does nothing.

OOPPPs!

My husband is on Haldol and it helps with psychotic behavior caused by sundowning.

The doctor tried a few sleep agents for my grandma but none worked. I instead instilled a bed time routine, calming music (without words works the best) and a bread product for a bedtime snack. I sit in the room with her until she falls asleep then I turn off the lights minus the small night light across the room from her. I do not leave lights on for her as she gets up and will fall during the night forgetting she needs a walker to get around and can't get up herself to go to the bathroom. When she awakes to go to the bathroom she calls out. Sometimes she calls out in her sleep waking me up but other times it's legit to go to the bathroom. Either way I lose sleep. But she will go back to sleep with me sitting there reading my nook. She usually falls asleep within 30 minutes of the bedtime routine finishing. She knows she gets dressed for bed. Gets rice heating packs placed on her legs to help with swelling, then gets covered with a nice warm blanket. Then rice heating packs removed after 20 minutes (we started this after she had a toilet paper put in her broken leg cast at rehab and had an ulcer so was unable to wear compression socks. Hopefully that changes tomorrow), then she is retucked back in after eating a snack of peanut butter bread. It's calming, filling and keeps her sugar fairly stable. Then I turn off the lights and TV and turn on her peaceful repeating music as well as the humidifier since she's dealing with cold induced asthma. She knows at this point it's bed time. Sometimes she'll ask me if the doors are all locked and I'll make show to double checking them knowing I locked them earlier in the night. Then she'll ask what day and time is it. I always exaggerate as she thinks her bedtime is 10 so telling her it's 8 or 9 is a bad idea. Then I turn on my nook and read or use my phone for facebook. Within 30 minutes she's out. Now if I leave her alone she won't sleep and will instead scream and hollar and try to get out of bed not wanting to be left alone. If the lights and TV is on she will try to stay awake insisting it's too early. If the music isn't on she will toss and turn restlessly.

Perhaps medicine will work in your case but in my case retraining her worked better for me. It wasn't overnight I got her trained this way. It took a month I think but now she expects it even with her severe dementia'd brain.

I got a monitoring system for my SIL's living room and kitchen. It makes "push notifications" to my phone at night. It allows me to hear her putts around or if she is heading for the door (which we also put an alarm on and set at midnight and turn off at 5am). I get a notification noise, it wakes me and I run down to help her back to bed.

Her neurologist said that with Sundowners there is no good sleep aid. He suggested Melatonin 3-6mgs, but I have since learned that Melatonin can you her to sleep but not keep her to sleep. She doesn't need help falling asleep. She needs help staying asleep.

My mom seems to have the signs of moderate dementia. She refuses to be tested. She has been troubled by increasing insomnia for many years even before the dementia was observable. She has been tried on just about every sleep med except Depakote. They will be effective for a short time then not work. At around 10 pm she says she feels tired and ready to sleep but then has difficulty falling asleep and /or staying asleep. She's resistant to any sleep promoting bedtime routines. She stays in bed until 10 or noon. Then she's up for 1 to 2 hours and naps for 30 minutes to an hour for 2 naps during the day. She doesn't get agitated or confused during the night and is too weak to wander but she has had several TIA's and fallen. I am fortunate that I can stay up with her but haven't tried that yet. Any suggestions are welcome.

just practical lived experience and NOT medical advice....as a person with long term insomnia not related to AD, however after the insomnia started, I might have a mild TBI due to a concussion and some other memory stuff going on due to low blood sugar sugar, so take that for what it's worth...I have had a long term working relationship with an excellent doc and what has worked in my case is alternating benedryl, (maybe once a week or so), trazodone (depending on the way I feel and how I am eating the following week the dose goes up or down since it affects the gut and can cause weight gain in some people) and/or a very low dose of a dissolvable cousin to seroquil, only prn. On a given month the meds may change depending how I actually sleep but the general "cocktail" remains the same. There isn't a "regular dose" every night. I have been doing this for years and average about 5 to six hours at night. it was sort of trial and error and a lot of record keeping on my part to figure out if I took which drug, how I slept, and what I ate. A trick is to avoid sweets two hours before taking anything, as it affects the way the medications work. Also, all of the sleep hygiene stuff like the cold room, calm routine, a NEW PILLOW (it's amazing how many dust mites get in pillows and keep us awake...nothing is absolutely foolproof, obviously, and it does get harder as I get older ( I am 50 ish, and taking care of someone older than myself who is sundowning and refusing all night time meds....sigh....) sometimes taking a probiotic will help whatever sleep medication be absorbed better since there is all kinds of research on gut health and the brain being so intricately connected as well. I wish everyone at least a little rest! I am still a fan of chamomile tea and then separately a glass of warm milk and a cookie!

Pharmaceuticals can be unpleasant, so I'd go with the melatonin myself (and I do take it myself, every night, and have it given to my parents as well). FYI "Nighttime Sleep-Aid" is exactly the same thing as Benadryl, which has been shown recently to exacerbate memory loss in the elderly. (or in case that link is removed from my post by the mods, look up "university of washington anticholinergic memory loss" and you'll find references to the study, which was written about just in June of this year).

Melatonin (10 mgs.) works wonders for my husband. He sleeps soundly and is fast asleep the minute his head hits the pillow. I don't understand the use of prescribed drugs when natural Melatonin can be had over the counter and used very effectively.

If for some unknown reason, Melatonin doesn't work, then my daughter's best friend, who is an RN, advised me not to hesitate giving him regular over-the-counter sleeping pills. They, too, knock him out for the entire night. The brand she suggested is the CVS brand "Nighttime Sleep-Aid Mini-Caplets." Please remember that the doctors are in bed with the pharmaceutical fat cats when they prescribe medication for sleep. And so much of the time, these prescriptions prove to be useless for what they're supposed to do and have harmful side effect.

Oh! I know I've already said a mouthful, but I forgot to mention melatonin. You said it's not an option, and I don't know why that is, but if it's because of concern that a high dose of melatonin would just knock him out, you might look into a time release melatonin. I take 10mg time release melatonin every night and it keeps me sleeping through the night without making me feel knocked out or giving me a headache the next day. Good luck!

Hello! First I want to wish you well with your father. This is a tough and harrowing journey for you, and a confusing time for him. It's good in these situations to think about the well being of your loved one, not just long-term survival. (Certainly long-term survival is what we all want, for sure, but it can't be the only consideration.)

Xanax is indeed habit-forming, if it is taken free-will by the patient. If it is given occasionally for specific situations and purposes, it may be fine. Of course that will all depend on the patient, especially in an AL where the patient can call and ask for whatever drug they want at any time. The good thing is, they should have a care plan in place for him and be able to give him something different if his orders are written up in such a way that they are not allowed to give him Xanax more than once a day or week, or whatever his doctor and the head of nursing thinks is appropriate for his situation. For my dad, they give him Xanax on his shower days so that he remains calm - it's still frustrating for him to know that he needs help with bathing and changing, because he was always very proud and private, as most men of his generation are.

As for Seroquel, for us it has been a lifesaver. Particularly when my folks were at home, my father would have a violent kind of sundowners where it wasn't simple restlessness but extreme agitation, about whatever might be upsetting him at the time. The knocking over furniture, breaking walkers, breaking closet doors kind of agitation. Thank g-d he never hurt my mother, but he very easily could have, as there were firearms in the home. (We ended up disabling them, but it was still scary because being independent, he could have gone out and bought new ones at any time.) After they moved into the AL (no firearms allowed!) his seroquel was increased slightly on the advice of the head of nursing, with the approval of his geriatric psychiatrist, whom he still sees every few months. He has had no more episodes of extreme agitation, and no side effects other than sleepiness. While it's true that the FDA put a black-box warning on Seroquel and Risperdol, this does not mean it will absolutely cause this type of event, just that it increases the odds. Only you can decide what you think about those odds - yes, it is troubling, but in our situation we felt we had very little choice but to do whatever we could to keep him calm.

However, the real miracle drug in his life right now is not a pharmaceutical, but plain old magnesium. I read somewhere that it can prevent anxiety attacks, so I've got both of my parents on it because of course mom's whole world was turned upside-down with this craziness going on - she also suffers from migraines, and it was on her neurologist's advice that she started taking magnesium. I noticed that it seemed to help her with her periodic upsets about not being in her home, which I spite of the dangers, she still misses. Then I read about different kinds of magnesium trying to figure out what type the neurologist might recommend, and that's when I found out that magnesium deficiency is thought to be a factor in both anxiety and depression. In the end the neurologist settled on magnesium orotate, which is supposed to be easier to absorb and tolerate. That may be hard to find in local drug stores, but can be purchased online on shopping sites. Now both of them are on magnesium orotate, and my dad has become a completely calm person 90% of the time, even when truly upsetting things happen like getting a nasty collection phone call or letter - yes, there have financial troubles as well, due to years of dementia before he would accept help with his finances - so I am very happy with how well magnesium has helped to stabilize his moods.

I wish you the best of outcomes for your father and your family.

Nights are the worst! My husband had several months of screaming out, thrashing, sleepwalking, and hallucinations. After trying many other combinations of drugs, our doc prescribed 50 mg of Elavil plus the Aricept, and it has helped immensely! Everyone is different, though. Hugs to you!

My husband (86) just started having problems about 2 months ago. He was given Zolpidem & he became worse at night. Just last week his dr. suggested that he has Sundowers & he is now on Risperidone .25. He is sleeping better but still has periods of aggressive behavior in trying to hit me (he is in a wheelchair), wants to get dress & go somewhere etc. I have found his sugar has increased & now trying to reduce that to a more normal range. My 89 year old mother lives with us & she is legally blind plus some dementia but all she does is forget where she puts things. I find my mother easier to handle than my husband as I haven't been able to figure out how to work with his disability yet.
Any ideas will be helpful.

Very little of what you posted can possibly apply to our situation here. My husband has dementia, and, although your advice is a pie-in-the-sky sort of care, it cannot possibly apply to every patient and to every caregiver.

I've cared for the elderly for over 6 years at a small ALF home in FL. It's so important to remember, medications affect them in serious ways. We minimize the chemicals we give people.
A good Daily Routine is essential - that's the biggest lack when people live alone, or with family. The family has a lot of things going on, and the elderly person alone is often an accident waiting to happen.
Just like children, they need a routine. When we work or go to school, or while raising our kids, we have one. They don't, but they badly need it.
Several things mentioned, closing shades before dark, and a Routine are helpful. Also, the drugs given many elderly do them harm. They're largely and even overwhelmingly, dehydrated. So they lack energy during the day. You see them napping all the time. They sundown, and so they get days & nights confused. That's part of the disease but it can be managed.
I do these things for my own self as well, and I can tell you They Work.
1) Hydration - No soda, if anything they're not a water drinker, get the ICE (flavored water) or a vitamin water, etc. Something without sugar or caffeine, and get them used to it. Don't ASK are you thirsty. Simply give them the glass, and You drink yours. "Here, dad/mom, let's drink - doctor said we should stay well hydrated and flush the system to make better use of our food, vitamins and medication." Tailor it to your own parent's ability to understand and do this. Liquids should be Warm or Room temperature when possible. Why? Digestion takes place at Body temperature. That's considerably higher than any room temperature I know of. They're already sitting around shivering with a sweater on.... Now we give them icy drinks - do we really Expect them to drink much? It's a process of gently changing habits by Example. Big ALFs don't have staff to do this and small ones are often not thinking about any of this, just giving drugs as prescribed or Asking the home doc &/or family to get them drugs, so they're easier to care for.
When will they drink most readily? In the morning. Aren't we all thirsty when we wake up? They sleep differently - often remaining on their back the whole night. Which makes for a very dry and even sore throat on waking. At Angel House, we gently waken them at the Same time each morning (can't do that if they have a drug hangover) When they Stop Sleeping the day away being dehydrated and lacking energy (I see articles all the time, such as "6 surprising reasons you lack energy" and they say you're Dehydrated - and that's US, let alone elderly who quit asking for water and don't feel the thirst anymore - or who are incontinent, and don't drink so they won't have to go to the bathroom or be wet) It's like Magic - they have more energy during the Day, so they don't nap and they sleep sounder at night, and we back the medication off.
I put a big glass (mine's 28 oz!) on my nightstand, and on theirs, I begin with 4 ounces in a juice cup, at bed time. Working up to 6, 8 ounces. Not for them to wake and get in the night, but to drink when they sit up, before they even stand to be helped to the shower. "Good morning! Let's sit up (I've opened the shades and am smiling) There we go. Boy, you look thirsty, here...." They drink it all - then I get them to the shower (maybe first sitting to toilet, while I go refill the cup) After a week of that, we see far less constipation, more energy, they are more interactive, less anxious, and we use Melatonin & Tryptophan, Kava Kava, etc. instead of habit forming drugs that make them serious fall risk in the night if they still get up to toilet. My mom was on drugs when she came from TX but we weaned her off that way, and her days were more cheerful. Seroquel and other things often blunt the emotions, and we're about quality of life, not maintaining the physical shell in an easy format for us to deal with.

2. Nutrition
We use no White bread, no white sugar or white rice, white pasta at our ALF. This makes a huge difference too. Sugar and especially High Fructose Corn syrup is in so many things today - read the labels, opt for healthier choices. This is not about weight control, but well being and mental acuity. Lots of coconut water, coconut oil & coconut milk - we make a great cereal with steel cut oats, quinoa & black or brown rice - sometimes Farro (Italian high-protein grain) Adding raisins, dried cranberries, prunes, any other dried fruit sweetens it naturally and adds antioxidants & fiber. We also add apples, cored & chopped, not peeled, cinnamon, vanilla and cook it all in coconut water, milk & oil. This is delicious and gives a warm hearty breakfast to daily reheat quickly, doing the work once weekly when you have time. Again the Routine is almost as vital as the ingredients. Cold (anything) is not good, and at home with your busy life, a short order cook is not available.
3. Music - Yes, but better yet, Hemi-Sync or another Alpha/Beta/Delta wave music created for brain health, healing, concentration, to work with your body and heal, rest and energize/focus your brain. Go to Youtube, get wireless speakers, play at night while you sleep for at least 1 week. See if you don't feel a huge difference, by doing just these few simple things.
It simply Works.
There's a lot more but those are the basics and I hope they help all of you.
Angel House is in Pembroke Pines, FL at AngelHouseSeniors
God bless you all and thanks for being concerned about your folks.
Doreen

Consider playing some personalized music about 1/2 -1 hour prior to anticipated onset of behavior. If music is not something he responds to, try an activity something he did or used such as different wood types 3x4 blocks if he was a carpenter or woodworker. Polish the wood or arrange the pieces .....again time about 1 hour prior to anticipated behavior. Consider these interventions before meds.

kbird - thank you so much for sharing your experiences with your dad and sharing what you decided to do with us.

KBIRDS..

PLEASE ACCEPT MY SINCEREST APOLOGY..
I SOMETIMES "GO OVERBOARD" WITH MY REMARKS.

SONNY

I thank you for all your sharing. Your experiences and encouragement go a long way in helping. Just as an FYI the dr agreed we will hold off on meds and try other things first. As some have pointed out, I know Dad is deterating , and I realize what the eventual outcome will be. I am very well informed on Dementia. I have taken him off Zyrtec which seems to be helping considerably, and we are keeping him up until 8pm which is also helping. He was going to bed at 6 right after dinner, so in effect he was indeed ready to get up in middle of the night. He is not dangerous, he is stong on his feet, no walker or walking aids. He is kind, always smiling and joking with everyone, he is loving and appreciative. I will do anything to keep him that way as long as I can. Meds are likely in his future, but we are trying to hold off if we can. He is extremely sensitive to any sedatives which make him belligerent and more confused. This is why our choises are not easy. His BP is low and with meds it goes lower, making him a fall risk. For now, we have improved the situation and for that I am grateful, one day at a time. To all of you caretakers, this is tough but also rewarding at the end of the day. Thank you so very much for your kindness and sharing.

Sonny, I am not feeling sorry for myself!! I count my blessing everyday ! You have no right to say I am not reciprocating ! You have no idea, Please do not post anything to me again

We adjusted the hours of my husband's .5 Ativan due to sundowning that only happens each winter. When spring comes back we switch it back. Problem solved, dr. ok with it and has agreed to help us avoid seroquel and other antipscyhotics to due rapid decline in cognitive skills as a side effect. Nice to have the support of all his doctors.

PS Thank you PamStegman! It needs to be said. I always feel bad saying it. This country needs to address it's problem with death, especially with our elders who are over 85. The largest demographic now is those over 90!

I'm not suggesting we hasten their deaths, but when a person reaches this age, to be thinking about the side effects of a drug that may benefit them, is quite ridiculous.

My mother takes at least ten different drugs that keep her alive. If any one of those drugs was taken away, she'd die a 'natural' death. She now has a serious case of dementia along with paranoia. The brain is going. Nothing is going to help that. Nothing. Once those tangles are there, they are there.

At the age of 90, the benefits will always outweigh the side effects. The aim is to allow him a restful period of sleep.

I do not like Seroquel because I've seen someone who takes it fall asleep only to awaken me with horrendous, nightmarish yelling. That being said, it doesn't mean YOUR DAD will have this side effect. They will start him off small and hopefully monitor him.

My mother does well on Mirtazapine. She's also on 37.5 Effexor (also a sleeping aid, but in this case, used for depression, Olanzapine (a black box 'evil' drug) for paranoia ...

When a psychiatrist down here tried to lower that dose of Olanzapine, that 'evil' drug, she walking around, waking at night, knocking at my door telling me I was sleeping too late and I should get up. It was 3 a.m. She was fully dressed, had been out to get the paper 'but it wasn't there', etc., etc.

I guess what I'm trying to convey is these warnings aren't as helpful as they should be. If a drug is going to help a person, they should be allowed to have it. All drugs, even NSAIDS, now have these warnings re how 'evil' they are, they can cause 'death' etc.

But they can also be beneficial. Your dad is 90. We all hate to see our loved ones in this state of mind, but at some point, we have to acknowledge they need comfort, not unnecessarily worrying about side effects. Most elderly people have decline in kidney function. Most drugs cause kidney function problems, liver problems, etc. The body is breaking down. It's deteriorating from day one of our lives.

We need to accept this and just be thankful these drugs are available to help either us and/or the people we love.

Please write to tell us what you decided and what the outcome was.

Pamstegman..
Give 2 hugs

YOUR MY KIND OF GIRL! 85++ IS A RISK OF DEATH, BUT REMEMBER THIS.. WE ALL START DYING RIGHT AFTER BIRTH!!

SONNY

It really upsets me when the MD's say a psychotropic poses a risk of death. I have to remind them that just being 85++ is a risk of death. Wandering away is a risk of death. They need to get the bigger picture.

DEAR KBIRDS.

I AM 87 GOING ON 88 SOON. I AM FORTUNATE TO BE OF SOUND MIND "AT THE MOMENT".. I ADVISE YOU TO STOP FEELING SORRY FOR YOURSELF! YOU ARE FORTUNATE TO STILL HAVE YOUR FATHER WHO MAY BE EXPERIENCING SOME HARD TIMES BUT AT LEAST HE HAS THE SENSIBILITY TO BE ABLE TO COM[LAIN ABOUT SOMETHING. WHAT IF HE WERE TOTALLY "OUT OF IT " AND COULDN'T COMMUNICATE AT ALL.

COUNT YOUR BLESSINGS, GIVE HIM WHATEVER MAKES HIM FEEL BETTER. EVEN IF STARTED SMOKING MARIJUANA, IT COULDN'T HURT HIM. TAKE LIFE EASY FOR YOU AND FOR HIM. HUMOR HIM AND GIVE HIM YOUR BEST WISHES.

IF YOU DON'T DO IT SOON, YOU WILL FOREVER REGRET IT AFTER HE PASSES.

I TOOK CARE OF MY WIFE FOR MANY YEARS AND NEVER DENIED HER ANYTHING. IT,S TIME FOR YOU RECIPROCATE FOR WHAT HE PROBABLY SACRIFICED AT TIMES FOR YOUR BENEFIT.

GOOD LUCK..SONNY

Liquid melatonin...5mg...

My mother's doctor recommended seroquel and I was also concerned about the fda warning. But I decided to go with the doctor..and it really does help her. But keep in mind that it requires consistency and regularity. At his age..just try it.

Sometimes the benefits of a medicine might out weigh the risks. Good luck