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Essays on LBD Caregiving

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It seems like a lifetime ago that we were first confronted with the words “Lewy body.” At that moment, we began the long road to acceptance. At times the journey has been daunting. Chronicled here are some of the thoughts along the way.

Many times I have watched Nelson stand for long minutes in front of the mirror combing his thinning hair just before he goes to bed. I have done the reasonable and asked why. He has always ignored me. “It is just going to get messed up,” I would tell him. He would still ignore me.

We went for a hayride in an autumn wood where yellow-gold leaves shimmered on beech trees in early evening sunlight. When it was over and time for Nelson to stand on unsteady legs in the middle of the hay wagon, the people around him gave patient hands and long minutes to the process.

When Nelson was first diagnosed, he was put on Mirapex along with other medications. It eliminated the middle-of-the-night vocal and physical outbursts that could cause him injury and send me into an adrenaline rush.

I remember a Christmas when a dear friend sat beside me in an empty sanctuary. In a room below us, we could hear the annual Christmas party coming to an end with exuberant carols. “I do not feel like singing happy baby Jesus songs,” she said. Joyful celebrations are difficult when life is hurting.

This summer I read “The Year of Magical Thinking” by Joan Didion. Didion writes about the subtle changes in the body that accompany grieving. A lower body temperature is one. No wonder I am always cold. Disturbed cognition is another.

We were in Twin Falls for two weeks. Bill was willing to go anywhere, anytime. He seems to be getting slightly weaker. He can’t walk as far as he used to without tiring. We rented a wheelchair when we went to the parade in Sun Valley, just in case he got too tired or we had to walk a long way.

Nelson and I went to a wedding eight years into the Lewy body diagnosis. By this time the support systems were in place, and we had dealt with many of the logistics of living with this disease.

When I was growing up we spent many wonderful weekends at Grapeview. My grandparents bought an old Victorian house on the island in 1948. The old house was built in the late 1800’s.

We had a great time at the Lake Ki RV Resort. We were parked with the front window of the motor home facing the lake. It was a beautiful lake with lily pads on the surface and Russian iris along the banks.