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 .
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.
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!
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.
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!
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.
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.
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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