by Ginnie Horst Burkholder
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 see myself wanting him at SARAH CARE out of my way. This is when the apparition, the Judge, appears to suggest that I do not deserve this award. The Judge is here, waiting to pounce on my every caregiver thought and decision.
I spent a whole day looking for just the right clothes to wear to the Awards Ceremony where I will be honored along with eleven others from around the state. I felt guilty for not spending time finding him a new outfit. Shopping with him takes a kind of courage I couldn’t muster then. Besides, Nelson often says he has too many clothes. The Judge does not care what Nelson says.
Yesterday at an Alzheimer’s support group picnic, we sat — a smaller group now than last year — munching potato chips and words. Caregivers sponged courage from each other. Two had recently surrendered their spouses to full-time care facilities. Like me, they attend alone now. I counted eight other spouses who have succumbed to the disease since Nelson and I joined the group. We have lost their faces and their caregivers at our picnics as well.
“How long,” I asked Lois, “did you take care of him? How long has it been since diagnosis?”
“Three years, since diagnosis,” she said. Then she offered, “I had to take care of him before diagnosis.” We caregivers do not want people to forget that diagnosis is not the beginning. Months, if not years, of caregiving often precede diagnosis.
Three years seems like a short time. I wished for three years, as we stood there talking on the blacktop of the parking lot. “Twelve,” I said. “I have been doing this for twelve years. I don’t know how long I can keep on.”
“You can’t,” she said.
But I don’t give myself permission to believe that. Instead I give myself permission to feel guilty for wishing it had only been three years and, in effect it seems, wishing him gone.
“Why do I feel guilty?” I asked myself this morning.
“Because it is the only decent thing to do,” the Judge says.
Last night Nelson collected rocks to paint. I told him I would rather he paint them at SARAH CARE — where he got the idea from crafts time.
I feel guilty that I do not choose to work with him on such projects at home. Then I remember what twelve years has taught me. “I have limits,” I tell the Judge. “That is how I have survived twelve years, by accepting my limits.”
The Judge must go. If the Judge has not been happy in twelve years, the Judge will never be happy. I will not give her an audience. I banish her with the Truth. I am not God. I cannot get it right every time. I cannot be perfect, as much as I, or others might want me to be. I need to be human. I am doing the best I can. I have been here for him. I have given twelve years to caregiving. I will not degrade those years by giving them to the Judge.
I will bury the Judge in a ceremony I will hold after the Caregiver Awards.
© 2007 Ginnie Horst Burkholder
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