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A myALZteam Member asked a question 💭
Rugby, UK
November 21, 2016
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Answer Summary

Members caring for loved ones with Lewy Body Dementia connected over the shared challenges of hallucinations, REM sleep behavior disorder,... Read more

Members caring for loved ones with Lewy Body Dementia connected over the shared challenges of hallucinations, REM sleep behavior disorder, movement difficulties, and the emotional toll of watching a partner's decline. Several members described practical coping strategies, including treating hallucinations as real to the person experiencing them, using body pillows or separate beds to manage nighttime thrashing, cutting up food to ease mealtimes, employing respite care or daycare services, and medications like clonazepam or lorazepam to manage sleep disturbances and anxiety. A recurring theme was the profound isolation of this caregiving journey, the importance of carving out time for self-care to sustain patience and energy, and the deep love and commitment that drives caregivers to navigate these challenges with grace and compassion.

A myALZteam Member

My husband had hallucinations three years ago and blamed it on the memory meds so quit taking them.... Of course as much as you want to say "if you had taken your pills "Maybe" you wouldn't be as bad today but you can only think it. FYI.. he still has them but not as frequent. I put a body pillow between us so it takes most of the thrashing and punching.

November 27, 2016
A myALZteam Member

Pete has hallucinations mainly at night last night he lost an earring I gently told him to go back to sleep and I would look for it when I made the bed in the morning. He has hit me at night and often asks in the morning if he did I always so no as he would be horrified to know he did

November 22, 2016
A myALZteam Member

I also am experiencing the same things with my mom. My husband and I are retired and mom lives with us. We cut her food up for her which makes her happy and mealtime a lot less traumatic! Hallucinations are only occasional...I usually just let her tell me what she sees....like the other night she told me not to step on the cat....I just said "oh ok....but I don't have a cat ""....them she laughed. I try to just roll with it! I never argue or tell her she's wrong. We also do light stretching exercises that physical therapy taught us that help with movement. I hope this is a little helpful......I am still learning myself!

November 22, 2016
A myALZteam Member

It can be very similar to other forms of Dementia, although I think the response time is different. Hopefully the support of friends and family and even this on line group and the Alzheimer's Association can help/sam

February 2, 2017
A myALZteam Member

Paul also has R.E.M. Sleep disorder but clonazepam has it reasonably under control . For a long time went from double bed to king size and body pillow but found best solution was 2 singles pushed together with a small Pillow at top end for flailing arms. Being in same room easier to monitor when he gets up. I also have sensor light in bedroom and lighting way to bathroom and in the bathroom which saves putting big light on. He was also getting upset in daycare but now had 1 mg of lorazepam on the days he goes and it has settled him a lot more. Yesterday for first time he had wet himself but refused to change his trousers- felt sad as I know he would have been embarrassed Wonder if this will start to happen now. I couldn't manage without my 2 day break a week so I do have to be firm with him going unless he is unwell

December 7, 2016

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