meds in late stage LBD

[Guest guest]

I know people have been asking about how long to keep someone on

meds with LBD

Here is our story:

My dad 81 yrs old has had LBD apx. 7yrs. (not sure when he really

started)However since last November, he has lost a great deal of

muscle control and now can no longer walk or get up on his own.. We

reduced Seroquel at that time(since he is sleeping or has his eyes

closed most of the time) starting in Nov by reducing one dose for a

week and seeing results and continuing on. When we reduced the

final dose Dad " sprung in to action " and amazingly got up and tried

to attack a patient but was weak enough for the staff to divert. So

he is on one dose of seroquel. They are now going to try

eliminating the REMERON (takes it at night to sleep ) We tried

Exelon about two years ago when he was semi coherent and could still

get out a sentence or two. We found it worked for a few months after

reaching maximum dose but soon had no effect so we eliminated it..

He had been on Reminyl earlier on but it seemed to have no impact

on him.. His biggest problems came with the hallucinations and the

panic and anxiety they created for him. He was quite strong and

quite physical when agitated so the seroquel (given 3x a day with

an " as needed dose " helped most of the time... But that stage

eventually passed and he became calmer but less in this world with

little conversation--mostly gesturing with his eyes..

we are not sure how long this final stage will last because he is so

healthy otherwise.. But our philosophy has been LESS is MORE and if

there is no longer a need for something we eliminate it.. We are not

doing anything if an infection sets in but rather let nature take

its course because he has no quality of life and we want him to find

peace.