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This type of Forum is new to me, but I’m desperate for guidance and possible answers. My husband was diagnosed with dementia in June of 24. For the past few months, he awakens 3 to 4 times a night to ask, “What time is it? Do we have an appointment today? Are you there?” One morning at 3 am, he got up, dressed and was heading out the door with his car keys, All this time, I was saying, “ honey, it’s dark outside, please come to bed.” It wasn’t until I physically, took the keys and firmly told him to get in bed and try to sleep that I got a response. He slept for 4 hours while I could not go back to sleep. It’s exhausting and I am getting angry although that doesn’t solve the problem. He takes Melatonin at night but that doesn’t seem to help. Has anyone on this forum gone through that? Sometimes I feel very disheartened and need some guidance. Can anyone offer help or suggestions- I am exhausted .

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Georgia, my mom went through the same thing with my dad. He got up to all kinds of crazy and sometimes dangerous things in the middle of the night. Or he would wake her up to rant about something like politics or this one statue he didn’t like. The only thing that worked for my dad was Trazodone for sleep which you need a Dr prescription. He also took Seroquel during the day to combat obsessive behaviors. They also went to separate bedrooms. You can also put alarms on the doors in case he sneaks out, or a tracking device in his shoe or pocket.

I would definitely hide his car keys. He probably should not be driving at all. Ask his dr. Also, be on the alert for him doing bad financial things in the middle of the night or whenever you aren’t looking. Donating massive amounts to charities, moving money around like out of his IRA for no reason, falling for scams, day trading, even unsavory activities on the internet. Sad to say, my dad did it all once he developed frontotemporal dementia. He was the salt of the earth before that. Good luck!
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LoniG1 Aug 18, 2024
Great info thanks. Can sure tell as like myself you been in her shoes. Thanks again
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Hopefully your husband is not driving AT ALL, EVER. Elders with dementia have no business behind the wheel of a car under any circumstances, meaning you need to take over driving now, if you have a license. If not, use Uber or a taxi to get around.

Call the doctor about the sleeping issues your husband (DH) is having. It's very common for folks with dementia to get restless at night and stay awake, wandering and getting into mischief. Melatonin doesn't work for everyone, unfortunately.

For now, you can keep a dry erase board handy with dates and appointments written in black marker. Show it to DH when he gets confused. Confusion is terrible for these elders, and so is staying up all night for YOU. Dementia is a no win situation for everyone, sadly.

Pick up an Alzheimer's clock on Amazon too. It shows the day, date, time and AM or PM in large led lights so when he wakes up, he'll be oriented to time.

https://a.co/d/8q7jcn4

I suggest you pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and how to deal with DH.

https://a.co/d/1OolVAi

The 36 Hour Day is another great reference type book you'll be happy to have, since doctors are pretty useless when it comes to helping us with dementia.

https://a.co/d/0KDtQUT

Stay connected to this forum. So many of us have tons of experience with dementia and advice and tips to share.

Best of luck.
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Reply to lealonnie1
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Hide the car keys.

Get a door alarm to hang on the exterior door doorknobs. You can tell him it's to alert you in case someone comes into the house. But, the reality is it will alert you if he does wander off outside.

Target has digital alarm clocks with 3" numbers that's real easy to see.

Sam's has some gummies with melatonin and chamomile.

If he's having delusions after sundown, his Dr might prescribe Seroquel (Quetiapine) to take the edge off the visual and audible delusions which can let get better sleep.
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Reply to jwellsy
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It's called sundowners. They no longer have the ability to tell the difference between night and day nor do they require a lot of sleep. Some have no idea what food or fluids are for and could care less if they needed it. If he wonders and wants to leave put added locks on doors. There is a ton of safey protecting you should look into for both him and yourself. Depending on your income there is help especially if your low income. If not you may have to pay for someone to come in so at least you get a lil sleep. Do you have family that maybe able to help even if it's to give you a much needed break? Have you thought about placement assisted living? you will need big bucks for that. I would suggest you not argue with him because truly he won't understand. If he's up he's up if he wonders your only job is to make sure he's as safe as can be. Lock up all your cleaning supplies reason being he won't be able to tell the difference between a glass of water or a bottle of bleach. He won't be able to tell the difference between what's good to eat and what's dangerous. Never have knives or sharp objects a tool box is the worst remove it. The point is sometimes out of sight out of mind helps him be safe. Above all and I know easier said than done. Take care of yourself. There is help out there we just need to know are county you live in so we may be able to point you in the right direction. Take care and thank you for doing your best.
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Reply to LoniG1
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Trazadone and quetiapine works for my spouse. You need to adjust dosage.
Alexa in the room can answer time of day, weather and date. If the person is not strong you can bungee cord doors to prevent them from opening. The new zip tie which can be reused to secure doors or whatever is handy. a handheld recorder is useful for repetitive questions of the day. You can replay something like "it is dark outside go back to bed". It does not help the patient but it does help the caregiver from getting exhausted. We have Wyze cameras all over the house so do not need to be in same room all of the time.
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Reply to PeterFromSF
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You can take the battery out of the car's key fob, if it has one, and it won't work. That eliminates having to take the keys. If you drive the car too, leave your battery in. Then you hide your key. He will think there's something wrong with the car if his key doesn't work, but you can say you'll look into it or something. Or send the car off the the "repair shop," which is actually a friend's driveway far away.

I take the lowest dose of Ambien, which leaves me able to wake up when DH does, but then I can easily get back to sleep after the crisis. It doesn't make me drowsy in the daytime at all.

Doctor prescribed a low dose of Seroquel for DH but I haven't given it yet because we haven't needed it. It's a ten-day trial to find out if it works for him. If it doesn't, I'll get another prescription for something else.

I suggest you look into memory care facilities, because usually the day comes when we can no longer manage this at home. Be prepared.
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Reply to Fawnby
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Signs, lists on whiteboards, giant clocks, calendars, none of these work for us. My husband can follow only one, verbal direction at a time unless he decides to argue with me about it, in which case he will have forgotten what he’s supposed to be doing by the time his argument is done. Signs on the door worked early on but no longer.

He can see notes, numbers on the clock and light and dark but they have no meaning for him anymore. He does not know if 6:00 a.m. is earlier or later than 8:00 a.m. or the order of the days even though he has a large format clock with the time and day of the week featured, prominently.

I can never, ever tell him the night before what is on the agenda for the next day; if I do, his nighttime behavior is worse as he tries to anticipate.

We’re now in separate bedrooms. I tell him his room is his ‘haven’ where he can be surrounded by things from his youth. What I really mean is MY room is MY haven and when I’m in there I need to be left alone! That only works in small doses since I have to be with him to keep him awake as much as possible during the day.

I put a small fan in his room that I turn on at bedtime hoping that the sound will soothe and distract. I’m considering removing all the lightbulbs except for the nightlight.

I have removed all daytime clothes from his closet or he will invariably get dressed, make his bed and try to start his day at 3 a.m.

I haven’t tried drugs (for him OR me) but that may be the next step. I do know that everything bad is worse when I am sleep deprived so I’m willing to try just about anything to get a decent night’s sleep.

Oh, and I took his keys, canceled his insurance and donated his car after a small, non-injury (thank goodness!) accident. I also hide my purse and keys. He was mad as a hornet for a while and occasionally he gets mad all over again, but that happens less and less often as his dementia progresses.

I wish you good luck and I hope you will keep posting if you find some solutions that work - or even if you don’t!
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Reply to Peasuep
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Hi Georgia,
My dad is just shy of his 86th bday and was diagnosed as your husband at 81. This was also the time my mom passed away. I went thru the same situation as you. It is exhausting!!! I struggled with the behavior for 2 years and then we started to see his neurologist 2 times a year which has been a God send as she helps me understand the behaviors and what to do. At 83 he was put on Galantamne and this year since his condition has advanced he was also prescribed Menantine which has helped the best. My dad likes to walk 2-4 miles a day, 2 -3 times a day. After dinner we go for a walk which tires him out. I get him to bed between 8-9pm. Routine helps him. I do not go over events for the next day as he becomes a little restless. I worked with his Dr. early on about not driving. She explained to him that it is time for his family and friends to drive him around and she also told him due to his condition she would have to report it to DMV. He accepted this message because it came from her. We sold his car and now I hide my keys since I fear one day he may try to take my car. Another thing I did early on was order one of the Road ID’s, it is a bracelet which has emergency contact info for me and my sister in case he ever got confused when he was able to be by himself. I also air tagged his house keys, wallet and glasses case. At times my dad likes to hide his wallet and the air tags have saved me a lot of time finding these items.
Best of luck to you, Kim.
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Reply to Kimberly916
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Talk to his doctor. Your husband needs to be protected from waking up and possibly leaving the house. It is a safety issue as well as a necessity for your sleep.
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Reply to Katherine1953
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You could TRY giving him his magnesium before bed. I say ‘try’ because there are so many different factors that can contribute to sleeplessness. Here’s my experience. My mom always paced around at night - eating, turning on lights, making noise, doing stuff like cleaning the house. Magnesium before bed helped her a bit. She also has lifetime of anxiety so after many years, she got a very lose dose of seroquel at night which helped her even more. She still gets up, but less frequently. Recently my 77 yo friend started taking magnesium before bedtime and she was amazed that her sleep normalized immediately and she could sleep all night without waking except once per night to use the bathroom. She has suffered with sleeplessness for many years. Another sleep-struggling friend, though, tried magnesium before bed and it didn’t work for her.

For me, it definitely improves my sleep and, like my mom and my friends, we’ve all tried melatonin without seeing improvement. There are many forms of magnesium but I’ve always used a bio-available form - available OTC and not high price. If he’s taking a multi with magnesium ask his doctor about thedose and if it’s ok to add a nightime magnesium dose.

i hope you find something that helps your husband. I know how hard it is to be awakened at night and how tired you get during the day from all that.
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Reply to InlandMeg
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Are you working with a geriatric neurologist? My husband has a similar problem but not yet fits into alzhemimers or MCA. He is on his second trial of medications to help him with sleep. First one produced vivid dreams with him not knowing if he booked activities or not. Apparantly he was dreaming and thought he did. It is important to work with a specialist to rule out other disorders and to try different meds.
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Reply to MACinCT
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With my mom at 92 at the time, we disconnected her car battery instead of taking the keys away. Come to find out her key battery died anyway. She realized she may not remember how to find her way home from the store. I reminded her the the doctor did not want her to drive. In the process of selling her car now.
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We have a bedside clock that also projects the time onto the ceiling. If you wake in the night, it’s up there to see. It’s quite soothing to watch, as the seconds tick over. It was cheap, we thought it was just a gimick, but when we set up another bedroom it was one of the first things we bought for it. It’s an easy experiment, if only to help just a bit.
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Anxietynacy Aug 26, 2024
That's kind of funny, I can't sleep with a clock in the bedroom, I can't stop watching it
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I have problems sleeping too. I have seen all the doctors and done all the tests. The answer is simple exercise. As we age we do not get enough. I find lots of strenuous exercise and a light dinner makes sleeping easier.
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Reply to Sample
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For some people Melatonin has an opposite effect; maybe speak with your husband's doctor about this possibility. There are wonderful herbal things that can help sleep, plus simply taking Magnesium because it relaxes the entire body. The company that makes the CALM powdered Magnesium has one specifically for Sleep which can be very helpful. You both need good rest
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Reply to Santalynn
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I don’t let my husband go to bed until 9 o’clock. Even if he is tired I make him sit with me on the couch until then, Sometimes he dozes off. Also, we walk every night after dinner. During the day, he takes a nap, but I don’t let him sleep past 3:30. I think this routine helps him sleep through the night until about 7 am. We are in our 8th year of dealing with dementia.
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Reply to Atlasshrugged
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He has a sleep disturbance that keeps him from sleeping through the night. Ask his doctor for a referral to a sleep specialist. They will conduct a sleep study and prescribe medications for his unique sleep issues.
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I Think CBD Oil Or gummies can Help . I Have Used Happy Hemp Buddha ( Colorado ) Over the years . CBD Oil after Lunch for calmness or after dinner . They have Improved the gummies - You Can get samples - 1 or 2 after dinner should help . They have a CBD Expert to talk with . The Owners are TJ and Kate . Ask for some help and the CBD Helps with anxiety also and Manic episodes . Check out their website I order the CBD sports cream and CBD Lavender cream .
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Reply to KNance72
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Resperdal 1 mg + 6 mg of Melatonin has worked for my 88 yo mother with vascular dementia. We went through melattonin as high as 10mg,many antipsychotics trazadone, seraqual and others nothing worked for more than 2 days. Psych treating it as nighttime sundowning. Started resperdal at .25mg and increased it .25mg per night until effect, but after 3 days still waking at night until on the weekend when no psych was available out of desperation my sister and I decided to add melatonin. The synergistic effect of the 2 has been working now for 5 days. It trying and see what works best for your lo.
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Reply to Kaysmile10
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I actually don't have any advice for you, you already have great advice, I just want to say please follow though. You need to sleep and take care of yourself, you won't be any good to your husband with sleep and taking care of yourself.
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Reply to Anxietynacy
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Magnesium glycinate 400 mg, give it right after dinner, or 7 or 8 pm

Experiment with the timing

Make sure to use the glycinate version to prevent loose stool
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Reply to brandee
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My husband, 92, is in his 9th year of Alzheimer's. One of our sons put a chime on the front door which helps during the day. He has severe hearing loss and can't hear it. He has started getting up during the night. A son put special locks on the front and back doors that need special pressure to be released. They are high on the doors.
Last night he was up trying to open the front door. He said 1 of our other sons was trying to get in. I told him he would ring the doorbell if he were there and helped him back to sleep. At 5:15 I heard him up digging at the lower locks with a steak knife. I led him back to the living room so he couldn't see me unlock the door and open it. He was amazed to see it open. With the Alzheimer's, he didn't think to ask me how I did it. I told him our sons wanted us to be safe and they had the same locks at their homes (not). He calmed down.
Thanks for mentioning the knives. I will hide them today.
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Reply to knutebird
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Please take him to a Neurologist if you haven't already. Is he incontinent? He may need a sedative. I take one prescribed by Urologist. My dad was restless at night because he napped too long during the day.
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Reply to Onlychild2024
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My husband was diagnosed with LBD or Dementia with Lewy Bodies. Many medications can’t be used with LBD. He had very bad dreams that seemed real and he would act these out. These symptoms were difficult to manage. After trying several medications that didn’t work, we found this combination of bedtime meds that do work for him:
Rigvastigmine patch 13.3 mg
Melatonin 15 mg
Sublingual clonazepam 0.25
L- theanine 100 mg
Celexa antidepressant 10 mg

I wish you all the best in finding what works. When you do find what works in your situation please post.
Sending hugs and support to you!
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