by Ginnie Horst Burkholder
We had a “plan of care” meeting today at The Pines care facility, which is Nelson’s home all of the time and mine from 4:30-6:30 p.m. each evening. We shared the story of Nelson walking out of the facility with a visitor. The visitor was not his. A nurse dashed out the door and followed him. He wasn’t interested in going back inside. She walked with him until, as she said, “We went by the same window so many times someone came out to help me.”
I told them how he had recently remembered with no hesitation the name of a former student — someone he hadn’t seen for at least fifteen years — when he saw her. And I told them how on Tuesday evening I felt unsure he knew I was there. His eyes were open but he didn’t show any signs of recognition. They had seen this phenomenon too. He had been sleeping more, eating less, and presenting with glazed and unresponsive eyes. He had been unable to feed himself.
I told them that the next evening had started out the same. I sat there wondering if this was going to be the new normal and thinking how glad I was that our son and daughter had both been to see him recently when he was still responsive. Then about fifteen minutes before I left, it was as if a switch had been turned on. He opened his eyes, there was recognition, and he spoke to me.
As we sat around the table at the meeting, we shared our wonder at this strange disease and the manifestations we see. When all seemed to have been said, and our concerns had been addressed, there was silence. The social worker looked at me and asked how I was doing. I drew a blank. I couldn’t shift my thinking. I didn’t know what to say.
How do you begin to talk about the experience of letting go of a spouse one day at a time for years on end? Where are the words to describe the sense of having a husband, but of not having a marriage? What do you say about the depression that inevitably colors days or weeks at a time? What do you leave out because you want to protect them from your pain? What do you leave out because you don’t want to feel the pain? When, if not now, do you expose the fear of what is going to happen to you? How much do they really want to know? Do they just want reassurance that you are going to keep the faith? Do they see in your face the tiredness you feel from living with loss, the drain you feel from being bounced between hope and despair, the numbness you choose when you can’t feel anymore?
So I said something inane. “I vacillate.” Then looking for substance, I added, “The house feels so empty,”
The social worker asked if I see myself moving. “It’s inevitable,” I responded.
Most revealing to me was how blindsided I was by the question. More often I am asked about Nelson. Nelson and the disease become the focus, and if I am not careful, even I forget that I need to ask myself how I am doing. I build a repertoire of answers to deal with the questions about him. I say things like, “The disease is slowly progressing. He’s doing as well as can be expected. He does better some days than others. He’s slowly going downhill, but he surprised us when...”
So, how am I doing? Once again I’m recognizing that I have the capacity to do things that I never would have chosen or of which I believed myself incapable. I go to bed and get up in a house that screams empty. I do what has to be done: chores and house maintenance, bill paying and shopping; and then at 4:30, I walk into The Pines wondering what I will find today. I deal with calm or calamity depending on the day. Last night he greeted me with, “I want to be out of here by tonight.” It was not a request, a suggestion, or an afterthought. It was the equivalent of an order articulated with none of his usual groping for words. I have learned to set my emotions on a shelf. I listen, reorient him to his reality, wade with him through his loss, and then come home to an empty house to wade through my own.
How am I doing? Maybe the same responses will have to do. I am better on some days than others. I’m doing as well as can be expected. I’m learning to live in a divided place where faith and doubt constantly collide, where hope and despair live side by side, where joy and sadness are expressed back-to-back, where love and fear walk hand-in-hand. That’s how I’m doing. And thank you for asking.
© 2010 Ginnie Horst Burkholder
To e-mail Ginnie about this story, click here.