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?
Lewy Body and Parkinsons are demyelinating diseases, the nerves break down, and in the final stages, the patient can be comatose.
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!
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.
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.