Jun 24, 2010

What is it like being an Alzheimer's caregiver? Unconditional Love

I accepted Jim “as is” and lived life in the present without looking back to what Jim had been because it made me sad.

By Linda Fisher

Jim and I were married in Honolulu, Hawaii while he was on R&R from Vietnam.

I was on Christmas break after two semesters of college.

We struggled financially for many years.

Entertainment was an occasional drive-in movie, jam sessions, fishing, camping, or traveling in an old van and sleeping at rest areas.

We were short on money, but took pride in paying our bills and putting a little aside.

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Jim was always there for me. He was my strength, my companion, and my best friend. 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 49. He became eccentric in the way he dressed, and compulsive about taping every program on TV.

By the time he was diagnosed, I realized Jim was turning into a different person. The day the doctor told us that tests results showed Jim had dementia, I asked, “What could cause that?” The answer was shocking: most likely Alzheimer’s.

We cried for hours as we faced our new reality. Surely there was a simple explanation—a stroke, a vitamin deficiency, depression. We were not satisfied until tests exhausted all other plausible possibilities. Whatever happened, we were in this together.

I wanted to learn everything possible about Alzheimer’s and caregiving. I took caregiving classes, read numerous books, and scoured the Internet for information 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 so much at the same time the demands of caregiving began to escalate. Jim only slept about four hours a night, and I spent a lot of sleepless nights working on Memory Walk, writing letters to my legislators or to the editor of the local paper. Dementia made me feel out of control, and being a volunteer gave me purpose and direction at a time when I desperately needed it.

Five years into the disease, Jim wandered off constantly. 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, taking him for drives to the park for evening walks.
Aphasia made Jim silent, but that also meant he was a good listener. Sometimes a sparkle in his eyes let me know he understood at least part of what I told him.

Jim had more company than anyone else in the facility. Our sons and our extended family checked in on him and spent 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 was our unconditional love for Jim.

I accepted Jim “as is” and lived life in the present without looking back to what Jim had been because it made me sad. I tried not to think too much about the future 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 five years ago, and I miss him still. I miss the youthful Jim, and even more, I miss the Jim he would have been in old age.

Linda Fisher published two books from her early onset blog -- Essays from an Online Journal and The Friendship Connection. She was the project leader for Alzheimer’s Anthology of Unconditional Love. Linda is working on a nonfiction therapeutic writing book and a fiction anthology. Linda blogs at Early Onset Alzheimer's.

Original content +Bob DeMarco , the Alzheimer's Reading Room
+Alzheimer's Reading Room