Lewy Body Dementia and inability to wake fully. Anyone else experience this? - AgingCare.com

Lewy Body Dementia and inability to wake fully. Anyone else experience this?

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My husband with Lewy Body Dementia & Parkinson's Disease often has trouble waking fully in the morning. I have to remind him to open his eyes and he'll blink repeatedly but not waken completely. I find on these days he's more apt to sleep the day away and not interact very much.
Has anyone else had this experience and if so, how have you handled it?

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My husband is 86 and he had a bad night and morning today. I let him sleep and he hallucinated all night and I think it's the celexa and gabapentin combo so we need to stop one. My husband sleeps 20 out of 24 hrs. I don't think the doctors know what to really do or treat him..............
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Hi Jeanne, Thanks for the update...it's good to know I'm not alone. I'm absolutely not insulted! You never know how people are handling their situation. Any and all help is greatly appreciated. I spend a lot of time searching the web because I feel education is power...the more I know the better I'll be able to help my husband.
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irishles, I know what you mean about showtime! Our 5 kids never had any illusions about their father's disease. Shortly after his symptoms starting showing, they took over his care for a week when I was unexpectedly hospitalized. They never doubted anything I told them after that! My sisters and the rest of the family couldn't ever really figure out that he could be difficult to care for. He was excellent at showtiming, especially if he was having a good day.

I hope you are not insulted, irishles, that Pam and I both told you to discuss this with his doctor. That is pretty obvious, I guess. But on this board we often have no idea of the poster's level of experience or attitudes toward doctors. Better safe than sorry. I'm so glad you are seeing the neurologist next month. I hope you will let us know the outcome. We learn from each other.
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Yep...I've discussed this with his primary who really doesn't know much about this disease. We have an appointment with his neurologist next month & I'll be sure to bring this up.
My husband still has good days and can actually pull himself together quite well when we visit the grandchildren. His daughters have a hard time wrapping their minds around the information I give them because he doesn't seem so bad when with them. I know this is called "showtime" and did explain it to his daughters but I think it's difficult to understand unless you live it every day.
I couldn't find anything on the web concerning demyelinating disease and lewy body dementia or parkinson's disease. But will definitely speak to the doctor...thanks!
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That's very disconcerting, isn't it? My husband (LBD for 10 years) needed two medications to allow him to sleep at night, and another to counteract excessively daytime sleepiness. This went on for years. He was fairly functional and mostly happy.

I hope your husband is being seen by a doctor who genuinely understands LBD. It is considerably different in some respects from other kinds of dementia.

As you know full well, LBD is highly variable. It consists of "good" periods and "bad" periods. When my hubby was having a "bad" morning or even a bad period later in the day, it seemed to me best to let him sleep if he wanted to. Staying in bed or just dozing in his recliner wasn't such a bad alternative to suffering through unpleasant symptoms.

On days when he can get his eyes open without coaching, does your husband interact appropriately most of the day? In other words, does he have a lot of good days, with these bad days happening only occasionally?

In any case, I agree with Pam that letting the doctor know about any new behaviors is a good idea, with any kind of dementia.

In all the years Hubby has LBD I never was told that it was a demyelinating disease -- in fact I never heard that word. Curious, I just looked it up. Neither Parkinson's disease nor LBD are included on the list on the Mayo Clinic web site. MS is the most common demyelinating disease. In my caregiver support group over the years members have lost loved ones. I don't recall any one saying that their loved one was comatose at the end. Doesn't mean it couldn't happen, of course.
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Oh, please discuss this with his MD. It may be time for Hospice. So sorry.
Lewy Body and Parkinsons are demyelinating diseases, the nerves break down, and in the final stages, the patient can be comatose.
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