At Home

[Guest guest]

Robin,

I noted that you are planning to bring your mother to your home and since I've

had my (LBD) mom with me for almost four years now, I figured we have

information to share. 

The number one issue that has made it possible to care for my mom at home is her

ability to sleep all night.  We went for one year without a diagnosis and with

very little sleep as Mom screamed out with hallucinations, wandered the house,

or got up to go to the bathroom.  More about how we handled that later.

Upon giving us the diagnosis, the LBD savvy neurologist insisted that Mom be

able to sleep at night and he gave us the dosing instructions for Seroquel and

how to increase the dose gradually so that Mom was able to get rest at night. 

In the interim, for that one year, a bed alarm on Mom's bed signaled her getting

up and I'm sure, prevented many falls.  We used the pressure type of alarm that

is a 3 " wide strip that goes across the width of the bed, under the mattress. 

An alarm sounded as soon as Mom's shoulders left the bed, and normally we were

able to respond before her feet hit the floor.

Baby monitors were a huge help too.  We kept one transmitter in her bedroom and

one transmitter in the living room, so we could always hear her.  Even though

Mom is now bedbound and does not move, we still sleep with a receiver beside our

bed in case she wakes in the night (very rare) or has breakthrough

hallucinations (only about once very two months).

Sorry you need to be on this list, but glad that you found us.  This group has

been such a comfort and a tremendous source for information for me, and

hopefully, it will be the same for you.

Peace & Wisdom,

Sheila in IN

Daughter of Louise, age 87, dx LBD 7/2007

Seroquel  9AM- 25 mg,  3PM- 62.5 mg,  9PM -100 mg.