Re: Carbi-levedopa - Jan

[Guest guest]

Hi, Jan. When my mother had surgery for her brain tumor, she was given large

doses of cortisone to minimize brain swelling. If my memory is correct, she was

in the ICU for about three days before moving to a regular room in the wee hours

of the morning.

Mom called me about 5:00 a.m., whispering that the people there were being mean

to her...and that the nurses didn't pay any attention to her. I called the

nursing station and learned that Mom had just been moved there; no one had yet

reviewed her chart. The nurse was very reassuring and invited me to come to the

hospital at any time. Once my kids were safely off to school, I did go.

The room was dark, mostly because there was dark panelling in a divider down the

middle of the room. A sliding panel was in the middle of the divider but it was

closed. Mom whispered to me that people on the other side of the panel were

talking about her. She was alone in the room; I opened the panel so she could

see there was no one else present.

As we sat and talked, she looked over to the closet in the corner, near the

door. She described a beautiful tree that was growing out of the closet with

its shiny silver branches reaching across the ceiling. The branches had

beautiful red and silver leaves. She told me that she wished I could see it,

too. She realized it was not real. After the cortisone was slowly withdrawn,

she had no more visions.

When Mom's LBD hallucinations began, they were mildly frightening to her.

Aricept was begun and the hallucinations became terrifying. After a few days, I

firmly asked the doctor to discontinue the Aricept. While I was encouraged to

give it longer to fully get into her system, I feared she would die of fright

before that could possibly happen. The Aricept was stopped and, later, Seroquel

was started. With the first dose of Seroquel, the hallucinations turned from

frightening to mostly comforting. Visions of children, animals or loved ones

who had passed were what Mom saw then most of the time.

When Mom would tell me that people were talking to her, I would bring up the

silvery tree that grew out of her closet. She always remembered that tree so it

was easy to explain that the people talking to her were much like the tree. I

suggested she could consider it part of a movie playing in her mind and that she

could ignore whatever they were saying. As time passed, Mom would bring up a

vision. I'd ask her if it was real or if it might be part of that movie. She

would pause to think about it and then answer that it was part of the movie.

Reassured, she'd move ahead to the next topic.

Now in the late stage, she still has hallucinations. She talks with my father

(he died as a relatively young man in 1974) or her mother...or her best friend

from childhood. Several years ago, I had a " talk " with my dad, asking him to

help Mom through this journey. I'd like to think that he heard me and is

helping her. :-)

The coincidence of the voices on the other side of the screen talking about

Mom...the beautiful tree that she knew was not real...the hallucinations of LBD

(visual, auditory and sensory, as in feeling rain falling on her inside a

building) all must mesh together somewhere in this puzzle. We can only hope

that someday soon, this puzzle will be solved and there can be real help for our

loved ones...or those who come after.

Best wishes,

Lynn in Florida

Maybe the drug Percocet had something to do with it too, since our LOs are so

sensitive to medications. But who knew then??!!

Jim kept swatting at flies not there. That was the whole beginning I believe of

things to come.