Hello, my name is June & here is our story.
My Father has been diagnosed with LBD and it has been almost 2 years since we have moved into my childhood home to assist my Mother with taking care of my declining Father. Between myself & my fiance we try to adjust schedules to make sure that someone is here assisting my Mom, not an easy task sometimes however so far we have been able to make this work.
He was recently released from the hospital due to pneumonia, we now have hospice involved in his care.
I worry so much about my Mother and what this is doing to her than I do about my Dad. What a horrible disease this is and how it effects everyone not just the victim suffering from this.
What I have seen it seems like the disese goes in and out, but each day it seems there is more presence of the symptoms; hallucinations, choking on food, bathroom duties etc.
This is a horrible disease and my heart goes out to anyone who is effected by its wrath. I hope that soon there will be successes with meds, awareness and of course a cure...

Good morning. Sorry about your Father's decline and your family's struggles with Lewy Body. My family battles the disease daily with my Mom. This website is a tremendous help and may be the best website I've ever seen. Especially the "Search" function when you want to find out something specific. There are very knowledgeable people here who take a personal interest, as well as those of us who share our frustrations and
successes.

Another day is here and I visualize that we're going to get through Christmas Eve and Christmas and the weekend without a trip to the emergency room. One day at a time. Regards, Annie

Hi June,

I'm sorry to hear about your father's decline.

You didn't say anything about medication. Locally, we have a neurologist who believes that dementia medication and hallucination medication should be continued until death. Typical hospice medications should be closely evaluated before they are used.

Do you know your father's wishes or your mother's wishes in terms of brain donation? It's the only way to get a confirmed diagnosis. Fewer than one-third of those diagnosed with LBD are given an accurate diagnosis when alive.

Best wishes,
Robin

Welcome and I am sorry for your need to be here but am glad you found us.Declines are always difficult and making constant adjustments are ever harder.

Sorry, I was not aware that there were specifics I needed to list in my intro, am I missing anything besides meds Robin

Currently we are using Chlorpromazine in a gel form that is rubbed into his skin, also using xanax to assist with sleeping, however the xanax does not do anything really, the Chlorpromazine does help when he gets anxious during the day and prior to bedtime but he still hjas nights where he is up and down all night.

As far as brain donation, I don't think this is a topic I can place in front of my Mother right now or ever, so I would have to say that this will probably not be the case in our situation.

Huh? You can include whatever info you'd like, and you can answer whatever questions you choose with whatever info you care to share or not. My suspicion was that your father is not properly medicated, even in late stages, which is why I asked about meds.

Good luck,
Robin