Change is the One Constant

by Ginnie Horst Burkholder 

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 had heard a few years ago that this medication was not indicated for Lewy body, but each time we tried to eliminate it, the outbursts returned.

Recently we began giving more Sinemet and tried again to eliminate the Mirapex. This time it worked, and now I am seeing a different Nelson.

On a gray rainy January day, we are sitting at breakfast when my drowsy silence is broken by Nelson asking, “Are you satisfied with our relationship?” My mind scrambles. Where is this going? Off the Mirapex, he can be more alert for brief periods. He questions my decisions and choices. He projects solutions that are only partially informed because he can’t hold the fistful of facts in his head that are needed to see the whole picture.

While taking Mirapex, it often seemed that Nelson was here in body but not in soul. He was a confused, lost version of his former self. He seemed more often to function out of habit than from any inner resource. Now, off the Mirapex, there have sprouted more frequent glimpses of the old Nelson: the Nelson who would respond to touch, the Nelson who wanted to be an active participant in decisions and activities, and the Nelson who reached out for connection.

Am I satisfied with our relationship? I was suddenly awake. I didn’t know if I wanted to deal with where this might go — forced to think about the issues that have been an inevitable part of adjusting a relationship between me as spousal caregiver and my husband altered by Lewy body. Carefully I choose words. “I think we have challenges that are very difficult to deal with — your Lewy body, my chemical sensitivities and chronic neck pain. I think that we have carved out a life that works pretty well.”

He was silent. I waited. Then, when I felt my patience wearing thin, I asked, “What are you thinking?”

He made eye contact. He was focused. He had initiated this conversation. He spoke clearly, without a loss for words. And he said, “I want you to know how much I appreciate everything you do for us.” The words sifted down through many layers of grief and healing, resistance and acceptance, like a welcome blessing. They change everything and nothing. I am deeply moved and grateful, maybe even changed, but the disease marches on.

I have been hearing from a place deep inside, “This could be as good as my life will ever get. Make it happy.” I have tried. I am trying to accept what he can give; and off the Mirapex, he can give a little more than before. I am trying to receive a back rub that is not what he once gave – is not what it could be – for what it is instead of always feeling the loss of what it is not.

It is another morning, and we wait for the bus that will take him to adult day care. He rises purposefully from his chair and moves toward the kitchen, suddenly stopping to turn toward me and ask, “What did I come out here for?” I laugh, imagining myself inside his brain and knowing all his thoughts.

“Honey, I have no idea,” I tell him, and then instruct him in our morning ritual. “Put your coat on.” He does, unassisted — something he couldn’t have done when he was on Mirapex. “Go open the garage door,” I prompt.

“Where is the garage door?” This is a totally new confusion and startles me.

Thinking that if he hears what he said repeated, it may help jog some clarity, I say, “You want to know where the garage door is?”

He looks at me. “If I go out there, will I find it?”

“Yes,” I say. “If you go out there, you will find it.” But I am not sure. With Lewy body, you can never be sure. With Lewy body, the only constant is change. With Lewy body, you can only say, “This time he found it.”

© 2007 Ginnie Horst Burkholder

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