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Real members of myALZteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is anyone’s loved one on an extreme sleep cycle?

A myALZteam Member asked a question 💭
Northeast Florida

My husband seems to be on 48 rather 24 hour time clock. He stays up 24 hours then sleeps 24 hours. I read about a woman with Lewy Body dementia who stayed up for 3 days and then slep for 3 days, for a quite some time, before dying in her 90’s.

February 13, 2023
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Answer Summary

Members shared their varied experiences with sleep patterns in loved ones with dementia, with some describing consistent routines like waking... Read more

Members shared their varied experiences with sleep patterns in loved ones with dementia, with some describing consistent routines like waking every hour or sleeping 18-20 hours daily, while others noted dramatic shifts near the end of life, such as sleeping for days before passing. Several members recommended valuable resources, including Barbara Karnes' booklet series on end-of-life care and a YouTube video explaining how sleep and breathing changes signal the transition process, with many finding these materials comforting rather than distressing. A recurring theme was that each person's journey is unique, sleep changes don't always mean death is imminent, and practical solutions like melatonin can sometimes help, though what works varies greatly from person to person.

A myALZteam Member

I give my wife a chewable Melatonin 10 mg every night about 7 pm tell her it’s cherry candy. She sleeps 12 hours every night

February 13, 2023
A myALZteam Member

Ernie slept 18-20 hours a day in his second year after being diagnosed with Alzheimer’s. The third year he slept less and always slept good at night. At the end of his 3rd year, just before he passed away, he went to sleep on Tuesday morning and passed away on Saturday morning. So no, it isn’t the same for everyone. Each person with Alzheimer’s is unique in how they deal with the disease.
The disease can be mentally exhausting for some so they sleep a lot. Some sleep a lot due to depression. But sleeping a lot does not necessarily mean the end is near for all Alzheimer’s patients.

February 13, 2023
A myALZteam Member

As a hospice nurse, Usually sleep starts happening at all times when death is close, not always, but the average person as they get close to death will start sleeping more and more but they do not usually stay awake alot, My wife began sleeping more and i would say she slept at least 18-20 hours a day. maybe even a bit more, that is the usual way it happens, they are just resting their body for the transition that is going to happen. If you like send me your email and I will send you a pamphlet on death and dying called Gone From My Sight, it is a wonderful note on what to expect when someone is close to death. Thanks Sid

February 13, 2023
A myALZteam Member

@A myALZteam Member, thank you! I went out on you tube and watched. I was afraid it would upset me, but actually made me feel better. @A myALZteam Member, I hadn’t scrolled down far enough to see you had posted the link. Thank you

February 13, 2023
A myALZteam Member

@A myALZteam Member
I just watched this video… extremely helpful. I’m going to share it with my hospice folks and also Vilma’s family. I copied the link, hope it works.
Thanks, by the way.
https://youtu.be/CZDDByT0Vr0

February 13, 2023

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