Living and Managing Life with Lewy Body

by Ginnie Horst Burkholder

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.

I finally get it. Lewy body isn’t reasonable. So this time I lean against the sink and watch and laugh. “What?” he wants to know.

“You’re combing your hair again right before you go to bed. I don’t get it.”

“That way I have a head start in the morning.” He smiles at himself in the mirror.

Not reasonable, I think. But I laugh and say, “It makes no sense.” He laughs too. We climb the stairs for bed, and as I lean down to tuck him in and kiss him goodnight, he grins. “Watch my hair.” It is a challenge and a command. I kiss him and then put my hand on his head and give it a thorough tousle, hard and deliberate. His laugh bubbles out long and delighted. It is the kind I heard years ago when he would challenge someone to mischief and then participate wholeheartedly in it.

Another morning, and the February sun shines brightly in the windows. I am ensconced
on the sofa in blankets and pillows. “Turn the lamp off, will you?” I ask. He is standing in the middle of the living room chewing peanuts, his breakfast of choice this morning, and he has a fistful in his hand. He hears my voice and shifts his focus to my face, but makes no move to the lamp. So I try again, this time pointing. He looks instead at the ceiling light and continues to chew. The pillows tell me this is still doable. “The lamp,” I say, and jab my finger hard toward the corner. He looks at the ceiling again, then laughs. I know that laugh. It is a laugh that says, “I know I’m not doing something right, but I have no clue what it is.” I spare us both, dig myself out of my nest, and turn off the lamp. I give him three pats on the shoulder, trying to reassure us both that it is okay.

It is closing in on time for his ride to adult daycare. He disappears into the closet, looking for a hat. He comes out wearing a visor. With the wind chill it is 4 degrees outside, so I eject myself again from the pillows and find his stocking cap and pull it onto his head while he says, “Watch my hair.”

He stands by the window, watching for the bus. “I’m going to go pull down the garage door,” he says.

“It’s already down. You need to go pull it up.” I knew what he meant. What demon possesses me to correct him? He sits down, confused.

“You need to go pull the garage door up.” I say emphasizing the word “up,” but the meaning eludes him. He looks at me as if I have lost my mind. I realize that to his ears I have just told him to do the very thing I have said is already done. I don’t know how to dig myself out of this communication conundrum without confusing him further. So I say, “Just do what I say, and everything will be okay.” He laughs. Multiple things go through my mind. He is a man. He needs to feel adequate. He needs his dignity. He wants to believe he can take care of others — not that someone must take care of him. While I am considering all this, he goes to the garage and opens the door.

Back inside he sits down to wait, then says something about one of the workers at daycare throwing away his plants. “They were just getting ready to bloom,” he says wistfully when I question him. I listen to his disappointment, unable to sort out the reality, and say, “You should have thrown a tantrum.” He looks at me with question marks in his eyes. I repeat myself and then say, “Have they ever seen a Nelson tantrum?” It’s funny, and we both laugh. I can only think of one time in our forty years together that he has had what I would call a tantrum. He is more apt to shut down.

The bus is here. We hug goodbye, and another day is started. He goes off to live life, I to hold it together. Later that night I put him to bed again. “You’re getting pretty close to holy ground,” he says as I lean down to kiss him. I look at him, puzzled. “You’re getting pretty close to my hair.”

© 2007 Ginnie Horst Burkholder

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