Re: New member my mother has LBD and Im struggling with decisions,

[Guest guest]

I would not let any med MD do ECT on anyone I know.  The brain is already in

stress and this doesn't seem like a good idea.   It is a difficult disease but

often can be made better with a UTI meds   Infections are commonplace with this

disease also. But any meds are as hard for our loved ones to handle.  I ended

up asking for mom to have a very low anti anxiety pill and it helped.  Mostly I

learned how to live in her world as she couldn't live in mine.  I took her off

most of the meds and just let her be.  What ever that was for her. 

Good luck

Donna R

[ LBDcaregivers ] New member my mother has LBD and Im struggling with

decisions

 

Hello,

My name is Sherry and I am 32. I have never joined a support group or

any online chat rooms so I hope that I am doing this correctly. I hope

that someone can help me with the situation my mother is in and find

some support as well.

This is a little long but here is some of my story.

I am the guardian of my mother who just turned 66. She was diagnosed

with Frontotemporal dementia ( FTD ) in 2008 but the symptoms were

pretty bad then since she had not taken any meds for it so she had it

well before 2008. Her husband decided to divorce her when we found out

her diagnosis so that is why I became her guardian and soon after her

care giver as well. Its been a loooonnnng road and I finally had to

put her in a nursing facility in the memory care unit. She has been

there since March of 2011 and at first she loved it. She has struggled

with paranoia (people stealing her things) since living with me and

had been taking seroquel . The paranoia seemed to go away when she got

to nursing home but it came back when she got used to being there.

Soon the seroquel stopped working and seemed to give her a side affect

the psychiatrist called EPS (it made her become rigid and lean) They

decided to try a different antipsychotic med only this gave her EPS

again. They tried another and in the mean time she stopped thinking

people were stealing her things and moved on to seeing people that

were not really there. They have now diagnosed her with LBD . She has

gotten really bad with the physcosis and they have tried all of the

anitipsychotic meds about 5 or 6 of them and they all cause the same

side affect. Apparently people with LBD are very sensitive to

anitipsychotic meds . They tried another cocktail of meds that did not

include antipsychotics but that worked only for a short time before

the psychosis became bad. She is now in a behavorial center so she she

can be monitored every day by a psychiatrist but he said the only

thing left is ECT electro shock therepy but she has to be approved by

another doctor to see if she is even a canidate for it. I keep

thinking this is so hard to figure out and deal with but whats even

worse is my poor mom having to deal with the pshycosis and side

affects from the meds , its horrible!!!

I have read about ECT and it doesnt seem so bad if that is all that is

left but I could not find anything about using it on LBD . Has anyone

had to resort to this option on a LO if so what was the outcome?

Any info and or support would be greatly appreciated. Also I did not

mention I am a single mom of two boys 12 yrs old and 1 1/2 years old

as well so I have alot on my plate and becoming very stressed.

Thank you in advance for any replys !