I became a volunteer for the
Alzheimer’s Association because of the support they gave to me when I needed
it. I have been known to refer to myself as the Alzheimer’s poster child.
My first contact with the local Alzheimer’s
Association Chapter was in the form of a desperate call to their “Help” line before
we even had a diagnosis. “I don’t know if you can help me because we don’t know
what’s causing my husband’s problems,” I said.
Penney Braun, the executive
director, was the person who answered the phone that day. She assured me that I
had called the right place. My relationship with the Greater Missouri Chapter
began with a friendly, concerned voice on the phone and it continues to this
day.
Thinking back, I know there’s no way
to remember everything the Chapter did for me, but I’d like to mention a few of
them.
During
the Early Stages: They provided caregiving training. I was starting with
zero knowledge about dementia. I attended several training programs including
one for nursing home staff. I learned important tips about managing behavior,
providing personal care, how to reduce stress (both mine and his), and how to
provide the correct amount of assistance. We learned how important it was to
get our legal affairs in order.
During
the Middle Stages: The Alzheimer’s Association helped me by providing
respite care. I was in my forties and quitting my job was not an option.
Because we were young, we did not qualify for senior services that would have
helped us. Through support group, I learned what to look for in a nursing home
and that it was a good idea to get Jim’s name on a waiting list. When I
realized a home cost more than I earned, I learned about division of assets.
During
the Late Stages: My friends at the Chapter office were there to support me
when I had to put Jim in a home. They gave me advice when he went through a
failure to thrive and had trouble swallowing. Throughout the years of dementia, my
concern was that the disease could be hereditary. We had gone through such a
long process to get any kind of diagnosis and still were not certain what he
had. Once again, the Alzheimer’s Association Chapter staff came through for me.
They made all the arrangements for a brain autopsy after his death. They went
above and beyond by applying for a scholarship on our behalf to pay for it.
Through it all, the Chapter was by
my side. Several members of the staff came from Columbia for Jim’s services.
They were there for me from the beginning to the end…and beyond.
Coping with the aftermath of a
decade of being a primary caregiver for a loved one with a degenerative brain
disease leaves a special kind of emptiness. My entire routine was different, my
purpose was gone.
I’ve found new purpose, and you
might even call me a woman on a mission. I want to do everything in my power to
end this disease. As an advocate, I make my trips to Washington, D.C., and to
Jefferson City to help make this a better world for those with Alzheimer’s
until it becomes a world without
Alzheimer’s.
Copyright
© January 2016 by L.S. Fisher
No comments:
Post a Comment