New LBD Caregivers Support Group in Austin Tx!

[Guest guest]

Hi,

I'm new to the group and joined a week after by father died from LBD

three weeks ago. I didn't realize this group existed and I'm finding out

that I was in the dark about a lot of things regarding LBD and the

terrible journey our family went through, even though I read everything

I could on the internet. My father was able to hide his dementia pretty

well until 2 years ago when we started noticing the " signs. " After being

in and out of numerous doctor's offices, he was diagnosed with

Parkinson's dementia which I understand is LBD.

One day, last July, he just had a meltdown and was severely

hallucinating, knocking over furniture and screaming about dogs having

their heads cut off. He went to the hospital and never came back home.

He was in and out of psychiatric wards and hospitals for a

month...strapped down with restraints. The meds they gave him made him

worse. Of course, we didn't know what was going on. He finally went to a

lock down facility while they tried to figure out what medication might

work. During that time it was horrific...my father naked on the ground

crawling on all fours. He wouldn't keep his clothes on, would NOT STOP

WALKING or crawling. He didn't not sleep for days...would just

walk...and fall...and walk...and fall. It just got worse and I'm not

going to get into it.

He had to be moved to 2 more facilities due to his behavior and one

nursing home made it mandatory that we hire a sitter for 24hours because

they couldn't keep an eye on him. We already had a sitter everyday for

12 hours due to his falling. He looked like he had been in a bad car

wreck, he was so bloody and bruised. A 24hr sitter would be an extra

$12,000 a month on top of the facility rate.

We couldn't afford that so we opted for heavy sedation after the doctors

highly suggested that it was the best way. It seemed at the time like

the most compassionate thing to do since he was so miserable. I couldn't

stand seeing him like that so I went looking for another dementia

facility further out from Austin. We got lucky and found a wonderful

home for my dad that just happened to have a bed open due to a death. In

retrospect, I think the intake nurse knew my father wasn't going to live

long and could see the pain we were in by having him wilt away under the

influence of heavy drugs. She accepted him and he moved once again. When

he came out of the drug coma, he was worse and never did walk again.

Thirty days last he died from pneumonia. All this happened in 6 months.

During that 6 months, hospice called twice preparing us for death and he

would pull out of it...once he came out eating like a horse and for 3

beautiful weeks I had my father back. He was lucid, so much so we had

decided to take him home and hospice was not going to reinstate him. He

danced, laughed, called me (sitter dialed) everyday. It was just

unbelievable. Then he went down...came back up worse...went down and

died.

I'm just now coming out of a 6 month blur trying to understand what the

hell happened and trying my best to connect the dots. I found this book

called The Caregivers Guide to Lewy Body Dementia which has helped

tremendously.

http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps & field-keyw\

ords=cargivers+guide+to+lewy+body & x=0 & y=0

I wish I would have had a LBD support group but there isn't one in

Austin. Well, I'm starting one. I'm waiting for the meeting space to

approve my proposal, I've taken the training through LBDA.org and I'm

hoping to have it up and running by the last week in March.

If you live in the area and want more info. Please call me at

or shoot me an email at K

Take care of each other and much peace to all.

Kelli