by Ginnie Horst Burkholder

“Talk to me,” I heard her plead as I walked into the lobby. “Don’t just walk away. You can at least talk to me.” She sat in a wheelchair in Nursing Home USA – rated five stars by Medicare – and was speaking to the backside of an aide that was by now far down the hall. The resident’s back was to the door I had just used to enter the building.

I walked past her, never acknowledging her presence.

What have I become? Am I one of them — the nurses and aides — spread too thin, immersed in helplessness and need, or callous or numb?

It’s been ten months now since I started making daily nursing home visits to my husband of 44 years. Lewy body dementia began showing up twenty years ago in some other life that I now can only faintly remember. We were partners once. Equals.

Now my hair is white, my body more stiff, and my step more cautious. An article from JAMA says because of the stress of caregiving, the odds of surviving my husband are not good. I’m intent on proving them wrong.*

I’m focused but drained from this life of in-between – caring for him and taking care of me, losing him and holding on to me, full nursing home and empty house, married but alone.

Between visits I want to forget what happens behind those doors: the drink a thirsty resident can’t reach, the fear dementia can’t express, the hand that reaches out and no one holds, the tears when a resident tries unsuccessfully to open dinnertime packaging. I don’t want to think about the shutdown, bored eyes; or those with no visitors; or the hunger for eye contact, touch, stimulation, and response.

I want to forget the voice of my husband, “I don’t know where I am,” or, “I don’t know who I am.” I want to walk out and not think about all the losses I see for those who have grown old in a culture where youth is god and the aged are sidelined.

I want to walk in and out, focusing on taking care of us – him and me – and on beating the odds.

But I’m tossed between my need and the needs of all those nursing home residents. They are powerless to make themselves heard. Who will be their voice?

I’m watching myself grow old from some detached place during this twenty-year goodbye. Now he’s here, now he’s not. Now he’s responsive, now he’s not. Over and over again. I see myself wearing down, losing resilience. I’m dry-eyed when another wife in tears says she can’t go on. Numb and empty. I come empty. I leave empty.

Tonight I’ve said goodbye to my husband. But a loud, guttural, demanding call of another resident follows me as I start out the door toward home. I turn back to see him, wheelchair bound, imploring me with his eyes. He wants to say goodbye. Words ring in my ears. “At least talk to me.”

I go back, squeeze his hand, messy from dinner and who knows what else. “Goodbye, George, I’ll see you tomorrow.” His eyes shine brighter, his smile grows big. I turn and go home to sit with my sadness.

Who will listen? Who will be their voice?

Is this is the best we can do?

©Ginnie Horst Burkholder

* Journal of the American Medical Association “…if you are a spousal caregiver between the ages of 66 and 96 and are experiencing ongoing mental or emotional strain as a result of your caregiving duties, there’s a 63% increased risk of dying over those people in the same age group who are not caring for a spouse.”

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