When I first started reading about Lewy Body Dementia, I was bothered that many web sites treated it as a variant of Alzheimer's disease. My grandmother died of Alzheimer's, the long hard way, spending several years bedridden and not recognizing anyone. She was a person who did harm to those around her even before the Alzheimer's hit, and the Alzheimer's made it worse for a while. So I didn't want to think that what I am facing had anything to do with that.
But I did read Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste and it made sense to me. I'm now going to order The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life by Nancy L. Mace. And I will at least try the local Alzheimer's Association support group. The issues are similar enough.
Last Friday I asked John, as he was heading off for his neuropsychological testing, whether he wanted me to reschedule one of his doctor's appointments for him. He is still making many of his own doctor's appointments (one of those things where it is hard to tell when to take over). He said that would be a big help. When I called the doctor's office they told me he had already rescheduled the appointment. I told him about that the next day and at first he still didn't remember doing it. When I told him the new date he said it was vaguely coming back to him. That kind of thing startles me--as he says, he has always had a bad memory but this is different. He used to lose track of things he needed to do, but if he as reminded he would have the details. Now he is just losing things. I tend to describe Lewy Body Dementia as something like a cross between Parkinson's and Alzheimer's only with less memory loss and more hallucinations. But John doesn't have hallucinations yet, and the memory loss is significant. I'm eager to see what we learn from the neuropsych testing.
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4 comments:
"I tend to describe Lewy Body Dementia as something like a cross between Parkinson's and Alzheimer's only with less memory loss and more hallucinations."
Good description. I would agree with that entirely. I'm curious about being diagnosed without the hallucinations...What was it that separated him out from Alzheimer's without them to the doctor?
I feel so bad for John. (and you Pam) Loosing himself must be terribly frightening...way beyond the confusion part.
Marc
My grandfather is at the end stage of is life. He was diganosed with LBD about 5 years ago. We were told it was a cross between Parkinsons and Alzheimers. He only had Parkinsons syptoms (shaking and trembling) while on SEVERAL medications. He went into the hospital in May and was taken off all of the meds. His mind and movements became MUCH more calm and reasonable...He is in the stages of dying now. In the past week he has become very week and has been bed ridden for about 36 hours. His speech is ver quiet and weak when he does speak. He has stopped breathing several times for a minute at a time and then regained his breath. He actually talked to us today and even cracked a joked! There is much to be learned about LBD. It is real and serious. DO NOT over MEDICATE someone with this. I learned that! Hallicination are nothing compared to what those "anti-depressant" pills do!!!! LBD can be better than what we experienced..Keep the meds low and loved ones near...The best medicine ever~
Thanks for blogging about this. I never knew about LBD until now. Keep blogging.
www.alzheimersteam.com
Frederick H. Lewy first described Lewy bodies in the substantia innominata and the dorsal vagal nucleus in Parkinson’s disease. (year 1912)
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