We won't be offically diagnoised with Lewy Body until we see the Neurologist on the 10th, but she has all the symptopms of it. One thing I've noticed since the end of the last year is that my mother now keeps a very odd sleep schedule. I usually have her get ready for bed around 10pm. Some nights she goes to bed not long after. Other nights she won't go to sleep until 4 or 5am. As long as she stays safe in her room until then (not that she could get to anything at could cause a fire or something) I don't really mind. As long as she's up on the days I need her for appointments. Lately, it doesn't matter what time she goes to bed 830pm or 5am, she'll sleep until 1 or 2 the next day if I don't force her to get up. I'll admit, some days I let her sleep. It allows me to do errands with peace of mind. I can't take her most places because she either wanders off at break neck speed or interacts inappropriately with people. Her social behavior is atrocious. Sometimes she'll even take three hour naps on the days she sleeps until 2pm. (fingers crossed) she can still change her depends, shower, and change without my help. Though I've had to reteach her how to take off long-sleeves shirts several times. But everything I've read in forms says excessive sleep can mean the end stages for dementias of all kinds. She started showing symptoms at 46/47 she's 53. I thought maybe the sleeping was due to her being bored or depressed, but she keeps reassuring me that neither of those are the issue. I'm working hard on trying to get her into AL memory care, while she's still enough here to understand what's happening, and she can adjust. Plus, I think it would allow her to have friends. She's become outgoing since the dementia set in. She used to be heavily agoraphobic.

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Sleep disturbance is extremely common in LBD. There is even a particular sleep disorder associated with it.

The first thing that we needed help with when my husband was diagnosed with LBD was something to help him sleep through the night. And later we needed something for excessive daytime sleepiness.

Yes. He took something to sleep and something to stay awake. Not all doctors would do this, but he was being treated by a Lewy Body expert. Both of these drugs were considered quality-of-life measures. If he couldn't sleep through the night, I couldn't, and eventually that would mean a care center for him. And how much quality is there in sleeping all day?

Eventually the daytime sleepiness was related to his declining health, and not just something that needed adjustment. When he was regularly sleeping 20 hours a day, I called in hospice. We made no attempt to keep him up, but tried for pleasant experiences when he was awake. He lived 8 years or so on the daytime sleepiness meds. But once the sleeping was from declining health, he lived 5 weeks on hospice.

I strongly agree with you about the benefits of assisted living or whatever level of care is appropriate. Being able to socialize is a great benefit. Don't automatically assume she needs memory care, though. Most regular ALs have 50 to 60% of their residents with dementia. They can manage that unless the behavior is disruptive or the person wanders. (Wandering is seldom an issue in LBD. Disruptive behavior can be.) There are more opportunities to socialize in regular AL or NH. Many people in Memory Care have little to no communication skills. The facility can help you access the appropriate care level.

Do let us know how the neurologist visit goes.
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