November is Caregivers Month, and I thought it was a good time to share my caregiver story.
We struggled financially for many years. Entertainment was hamburgers
at Griffs, an occasional drive-in movie, jam sessions, fishing, camping, or
traveling in one of our old vans and sleeping at rest areas. We were short on
money, but took pride in paying our bills and putting a little aside.
Jim was always there for me. He was my strength, my
companion, and my best friend. Jim had bouts of depression, and I worried about
him. Our marriage never wavered; our love for each other was never in doubt.
We finally gained financial security and built our home.
Just as we thought life was going to be easier for us, Jim began to have
cognitive glitches shortly after he turned forty-nine. His forgetfulness didn’t
seem as strange as his loss of mechanical skills. The man who once fixed our
van with a piece of baling wire, couldn’t change the oil.
For years, we had gone to bed an hour early and read. It was
our quiet time, our time together. Jim lost his ability to read. He became
eccentric in the way he dressed, and compulsive about taping every program on
TV.
By the time he was diagnosed, I realized the Jim I had loved
for twenty-five years was turning into a different person. The man who had
always been protective of me and so aware of my needs, began to turn inward.
Surely there was a simple explanation—a stroke, a vitamin deficiency,
depression. The day the doctor told us that tests results showed Jim had
dementia, I asked, “What could cause that?” The answer was shocking: dementia
of the Alzheimer’s type.
We knew that whatever happened, we were in this together. We
cried for hours as we faced the new reality. We were not satisfied until tests
exhausted all other plausible possibilities. Somewhere along the line, I
realized that I was going to have to get a grip on the grief and make some
sense out of this tragedy.
My first step in the right direction was to learn as much as
I could about Alzheimer’s and caregiving. Knowledge became power and helped
bolster my confidence. I took caregiving classes, read numerous books, watched
documentaries about Alzheimer’s.
I became an Alzheimer’s Association volunteer and
advocate—first locally and then nationally. Most people thought I was crazy to
take on volunteer work when caregiving took so much of my time. Jim only slept
about four hours a night and I spent a lot of my sleepless nights working on
Memory Walk, or writing letters to my legislators or to the editor of the local
paper. Alzheimer’s made me feel out of control, and being a volunteer gave me a
purpose and direction at a time when I desperately needed it.
Jim wandered off constantly and to keep him safe, I put him
in a long-term care facility. My caregiving did not end when he went into the
facility. I was comfortable bathing Jim, providing his personal care, feeding
him, and watching TV with him. We would stop at Dairy Queen, go to the park or
just drive around.
Aphasia made Jim silent, but that also meant he was a good
listener. Sometimes a sparkle in his eyes let me know that he understood at
least part of what I told him.
Jim had more company than anyone else in the facility. Our
sons and extended family made sure he had a steady stream of loved ones to
check in on him and spend time with him. Throughout the ten years of Jim’s
dementia, we learned to cope and adapt to the myriad of changes Jim went
through. The one constant that never changed was our unconditional love for
Jim.
I lived life in the present without looking back to what he
had been because it made me sad. I learned to not think too much about the road
ahead or I would worry about what was coming. I could hug him close and kiss
him. I could place my head on his chest and hear the irregular beat that was
so distinctly Jim’s heart.
Jim left this world in 2005, and I miss him still. I miss
the youthful Jim, and even more, I miss the Jim he would have been in old age.
copyright © November 2014 by L.S. Fisher
earlyonset.blogspot.com
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