I'll start with a laugh. I have been reading the forums and sending a few $ to LBDA for quite a while, and finally decided to join in the discussion.
Poor Jim, the forum administrator, asked me for a "few words" on why I wanted to join. Thinking he was a member of the club, I poured it all out for him.
He said I should copy and paste my book here, so that's what I'm doing.
Thanks for the caring ear, Jim! Poor guy!
And here's my story.
Where to begin... my father was a chronic alcoholic whose behavior got much
worse in his 70s. He wasn't diagnosed with Alzheimer's until things had
gotten completely out of hand and Mom and I could no longer care for him. He
was given Haldol. If I could revisit that experience, I now feel I could
have done much better by him. He died in a nursing home in 1998.
Mom and I talked about her future, setting up a living trust and all
appropriate papers "just in case", but she was adamant that she never wanted
to end up "in a home" like my father did.
In 2003, I discovered that things were going terribly wrong. It started with
Sears sending Mom a nasty letter about her credit account not being paid and
it snowballed from there. I took over financial matters at that point and we
started to work as a team to take care of everything. I started carrying a
copy of The 36 Hour Day.
By 2005/2006, the problems had gotten worse. I moved Mom's healthcare to
Blue Cross so I could take her to a geriatrician. Mom was always extremely
sensitive to ANY medications, but the behavioral or sleeping type meds put
her over the edge very quickly. We tried a number of them, but had to take
her off in each case. She was getting more Sun-Downy by the day. At least
she was wearing her safe-return bracelet for me - one of the few little
battles I won.
Mom wanted to sleep all day and be up all night. She ran out of the house
after unknown assailants who had stolen her baby (me). She was incontinent.
Her handwriting, when she wrote at all, betrayed a tremor that was not
obvious otherwise. I collected samples and showed them to the doctors, but
still got no help.
I tried home health aides, but my charming little Irish mother ran them all
off. I put in an accessible bathroom with walk-in shower - big mistake! She
wouldn't use it. The battles got worse.
The hallucinations, the talking (often yelling) in her sleep, and dashes out
the door - all got worse. I used to be able to leave her for a few hours in
the afternoon to run errands, but that stopped too. Her doctor wasn't
offering anything new, and we both agreed she couldn't tolerate behavioral
meds, so it seemed that we had hit a wall.
Meanwhile, I had joined the local Alzheimer's Association here in Cleveland,
and our social worker would check in regularly. I had been checking out and
visiting nursing homes "just in case", too. I checked out a daycare/respite
facility, and they felt Mom wouldn't be a good fit (mainly due to her lack
of controlling meds, I suspect).
It came to a head in early November, 2008. I had a ridiculously elaborate
scheme for changing Mom's bed (a funny story for another time), and my
teenagers would distract Mom so I could get away with it. Well, one day she caught me. I ended up in tears, with a black eye, and right then our social
worker called. She recommended an "inpatient behavioral assessment" and
assured me that it was the right thing for Mom at this time. I agreed.
I met the director of the program. Showed him my "36 Hour Day", now stuffed
with clippings, notes, and samples of Mom's writing. I showed him the notes
on Mom's inability to tolerate meds. He dismissed my concerns outright, and
I should have taken her home, but with no other avenues, I had to trust him.
She went in feisty, walking, and talking, even if confused. I had to lie to
her to get her there. (and I am still haunted by that)
1 1/2 days later, she was in a geri-chair, slack-faced and drooling. Against my wishes, he had medicated her to oblivion. Haldol and all. A real chemical lobotomy, I realized later. He backed her off the meds, but the damage was
already done. He conceded that, yes, she might be a Lewy Body afterall, but
he wasn't entirely sure.
I couldn't take Mom home. I placed her in the facility at the top of my
short list, and there she remains. I asked hospice to come in, and they
decided she was End-Stage Lewy Body Dementia. She sleeps most of the time,
but still gives em hell at night. I'm familiar to her - she knows I'm
someone special, but she isn't entirely sure if I'm one of her sisters or
I try not to cry as much now. I lost some weight, colored my hair, and have
pursued a new career in health care. We're learning to live in our new
worlds, Mom and I, but my loss and grief occasionally threaten to drown me.
I have continued to read and research, and I still print articles for the
staff. I want to be a strong advocate for the elderly in general, and the
Lewy Body/Alzheimers people in particular. I want to raise awareness of the
dangers and overuse of neuroleptic medications. I want more discussion of
CPAP therapy for the elderly (and I do understand the enormous difficulty of
keeping an oxygen mask on a confused and agitated person), and mostly, I
want to "be there" for all of these people and their families.
You asked for a little info, and I poured forth like a waterfall! Sorry! I
had read a few more posts to the forum, and thought maybe I could contribute
something from my experience. And I promise not to write a book every time.
Thank you for your consideration, for "listening" to my story, and THANK YOU