Early Onset Alzheimer’s – Encourage, Inspire, and Inform: Care for the Caregiver

I have a story in the latest Chicken Soup for the
Soul book Care for the Caregiver. My story is about my mom at a time she
traveled from her home on the Lake of the Ozarks to help me take care of Jim.
The story “Under Control” is a snapshot of the way my mom filled in for the
professional caregivers on the days they weren’t scheduled, or the days they
didn’t show up.

The care of a person with dementia falls heavily
on the primary caregiver. It takes a village to care for a person with
dementia, and I was fortunate enough to have a village. I was also only in my
mid-forties, and still was overwhelmed at times. Nights and weekends were
mostly alone time with Jim.

As his disease progressed, I found that caregiving
was on the job training for a job I never envisioned. Jim was an intelligent,
practical person. He was mechanical and could fix anything. Vietnam had left
him in pain from a neck injury and in torment with flashbacks and PTSD.

As if life hadn’t dealt him enough blows, at
forty-nine, he began his ten-year journey into a strange new world where his
brain didn’t function normally. His behavior went from unusual to bizarre.

My mom called it “unlearning” and that was a good
description. Jim’s aphasia meant he lost his ability to communicate. He would
often say, “Right here, but I can’t find it.” Little things became big issues,
and when he couldn’t say the letters on the eye chart, they would not issue a
new drivers license.

 Watching
someone you love lose his ability to think, speak, and a lifetime of learned
skills causes a thousand shades of grief. The long-term care decision is a
final blow when you realize that the last shred of independence is gone. As an
exhausted stressed-out caregiver, the time had come to make the best decision
for both of us.

I never relinquished my role as a caregiver and
advocate for the best care for Jim. Some people thought I had lost my mind when
I bathed, fed, and provided personal care for him in the nursing home.  I did it for him, but also for me. I had to
know that he was as comfortable as possible.

It takes a village. The nurses, nurse’s aides,
Jim’s family, our family, and other health professionals all did our parts.
Family fed him, often bringing home-cooked food, or his favorites from fast
food places. I took him through Dairy Queen so often that they knew what I was
going to order. I took him for drives, walks in the park on nice days, and down
the hallways during bad weather.

We did as much as we could for as long as we
could. Although Jim didn’t have his normal sense of humor, he still had a way
of smirking when he saw I was doing something wrong. The glimpses of Jim being
his old onery self from time to time became cause for celebration.

I tried not to think about what might have been or
what would never be. Life became moment to moment. I was not alone. I had my
village to care for Jim and me, the caregiver.

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