Tug of War | Lewy Body Dementia Association LBDA

Tug of War

by Ginnie Horst Burkholder

Nelson is gone, visiting his family in Michigan. Do I miss him? Yes. Do I enjoy the freedom and change? Yes. Lewy body tugs me in two directions at once.

Several years ago I went to an auto supply store and asked if I could buy the kind of paper mats that mechanics leave in your car. They sold me a pack of two hundred, and I began using them in place of rugs on the bathroom floors. They make accidents easy to spot, working as blotters that make cleanup easier. Since they are disposable I am not constantly washing rugs.

The mats are also ugly and cold, and so soon after Nelson left for Michigan I threw out the ones that had been down and put rugs in their place. For four mornings I walked into the bathroom to the wonderful sensation of warmth and comfort on my feet. For as many days and evenings, I felt I was walking into luxury each time I went into a bathroom.

For an hour and a half, a married couple and I went hiking through hickory and beech trees that were beginning to drop their fall foliage. It was exhilarating to walk without having to deal with energy limitations imposed by Lewy body. It was liberating to converse without repetition, careful enunciation, and explanations addressing Lewy body confusion. Still, I was one, alone with a busy married couple. “You sure you don’t need this time just for you?” I had asked. They assured me it was okay. I chose to believe them.

On the hike we came upon “chicken of the woods” — a fungal growth on trees. It was a real find to these naturalist friends, she an enthusiastic high school biology teacher. Nelson would have loved the brightly colored orange tops and yellow undersides of the petal-shaped brackets that run like shelves up opposite sides of the tree. He would have tasted this novelty with us later, and if he liked it would have probably eaten more than his share. If he didn’t like it, when offered more he would have said, “Maybe tomorrow.”

I sat at the counter in their kitchen and watched as our friends blended their movements and enthusiasm at the stove. “Try this… let’s get… okay, I have… where is the…” Their synchronized movements were a testimony to their years of marriage and, I couldn’t help thinking, their healthy minds. The contrast to my own life floated across my awareness. Their shared excitement was the picture of companionship. I tasted the “chicken” and it was deliciously moist and flavorful and yes, tasted like chicken. Nelson, the science teacher who once ate chocolate-covered ants with his students, would have loved the whole experience. But Nelson of Lewy body would have been tired by this time and ready for home.

Later that day I stood in line at calling hours for a friend’s father. I was sandwiched in line with strangers in front and behind. Now I wanted Nelson at my side. I wanted the comfort of the familiar. I wanted someone to hold on to. Mutual friends, two couples, had already been through the line and spoke together in a small companionable group that accentuated my aloneness. This is what it is like to be single, I thought. I did not like it.

Now he is at home. The paper mats are back on the floor. His muted voice and lack of words crush my interest in communication. Still we went for a walk, and I had his company. He tumbled to the ground and rolled like a teddy bear, then jumped up laughing.

I am in the middle of an emotional tug of war, alone and single-like one minute, together, married with difficult and broken connections the next. It is the life of spousal caregiving and Lewy body. There is nothing to be done but to review my commitment, acknowledge whichever end of the emotional tug of war I need to process now, and pray that I can get on with caregiving.

© Ginnie Horst Burkholder

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