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My husband, who is under hospice, has recently become non stop restless and not able to sleep at all. Just previous to this, he was in a cycle of being up 24 hours and then sleeping 24 hours. But now, he’s not sleeping at all.

February 19, 2023
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Answer Summary

Members shared their experiences with terminal restlessness in loved ones with dementia, describing a difficult period where their family... Read more

Members shared their experiences with terminal restlessness in loved ones with dementia, describing a difficult period where their family members became extremely agitated, restless, and unable to sleep near the end of life. Several members offered practical medication strategies that helped their loved ones, including combinations of gabapentin for nerve pain and drowsiness, lorazepam for anxiety and agitation, Haldol for restlessness, morphine for pain management, and Risperdal, with many noting that finding the right combination required trial and error with hospice doctors. A recurring theme was the emotional and physical exhaustion caregivers experience during this stage, balanced by the importance of accepting support from friends, taking breaks when possible, and finding comfort in knowing that many loved ones eventually entered a peaceful deep sleep after a week or so of restlessness.

A myALZteam Member

Yes, he’s still taking food and water. His appetite is still very good, His body is actually still quite strong, despite the severe derivation in his brain. Was in contact with his hospice nurse today and she’s going to be in contact with his hospice doctor In order to do what’s best next.

In the the meantime, his bff and wife were in town for a visit, along with their dog, and visited him today, Very nice visit, all the residents and the staff loved the dog visit, too!

Afterwards, bffs took me out for a fantastic dinner at one of the very best restaurants where we live. I am SO blessed!

February 20, 2023
A myALZteam Member

Dear Catmama ,,Years ago when Jim did not sleep the Dr. started him on Gabapetin it is actually made for seizures but a side effect is drowsiness. It did work for Jim I was able to keep him resting at night even to this day I use it. But until his body gets use to it it can cause difficulty with walking and falling so it comes to a trial and error with each person and how they tolerate medication. Talk with your hospice nurses hopefully they will have ideas. I’m sure this is extremely exhausting for both of you. Prayers to you both 💜🙏

February 19, 2023
A myALZteam Member

We had the same restlessness with Lisa, she was all over the place and her body was going every which way. This lasted for approximately a week until she passed. I have no idea what actually happened and was told it was just part of the process. Thankfully, she entered a deep sleep after a week or so and never woke up.

February 21, 2023
A myALZteam Member

My wife was sedated with morphine, lorazepam and haldol for 24 hours a day near the end of her life. Without those drugs, she would have been awake and hollering.

February 19, 2023
A myALZteam Member

That’s good to hear. Now maybe you can get a little rest. The last few weeks before Ernie passed were physically and mentally exhausting. He started refusing food the second day he was in hospice. He would either clamp his mouth shut or look away from me when I would try to get him to eat. He too fell into a deep sleep and never woke up.
How nice that your friends came to visit and brought their dog. A therapy dog came into the hospice when Ernie was there and it turned out to be one that I trained. 😊
Wow! Your friends took you out to one of the very best restaurants? Well you certainly deserved it. I’m sure the break and distraction did you a world of good.
I hope your husband is continuing to sleep better and that you are doing ok and remembering to take care of yourself. Sending gentle hugs your way. Eva

March 1, 2023

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