Essays on LBD Caregiving

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Living constantly with loss, coupled with the ever-increasing responsibility of caregiving, pulls me off balance and gives me the feeling of being in limbo.

This morning Nelson is at home so that he can go with me to Columbus for the Area Agency on Aging Caregiver Awards Ceremony. I will be given an award, but now I am stressed by the extra attentiveness needed while he is at loose ends until we leave at 1:00

I used to collect moments like precious gems to horde in my memory for revisiting when I needed a break from the demands of caregiving.

“Word salad” is what a Reader’s Digest article calls the scramble that happens when persons with dementia use substitute words and phrases for what they are trying to say. Word salads have been the source of both laughter and tears for us.

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.