Father’s Day found me with a man who often doesn’t remember who I am, although we have spent much of his 93 years together. My father has dementia.
Five years ago, I persuaded my parents to move from Spearfish, S.D., into a second house that my wife and I own that doubles as my office. Leaving a community where they were well-established was difficult. But they enjoyed seeing grandchildren, spent Saturdays at garage sales and played Upwords with me at lunch time. It was good.
I first noticed little things. Forgetfulness, confusing names. It’s part of aging, I thought.
A year ago, my parents’ world narrowed. A retired minister, my father began hurrying from church, afraid he might say something foolish. No more garage sales, no more word games. In October, my mom felt severe back pain. Cancer. My father slept next to the hospital bed that hospice delivered. They celebrated their 70th wedding anniversary in November. Three weeks later, she died. I learned then that she had been covering for him. At her funeral, he asked if I was enjoying “the party” and said he was sorry that my mother had missed it.
I’d promised I’d take care of my parents at home. They were terrified of nursing homes. Round-the-clock caregivers were hired. When my father began wandering, childproof locks and alarms were installed. One night I found him sitting on his bed, sobbing. “What’s wrong, Dad?” I asked. “I want my mommy and daddy.” In his mind, he was 5.
The third time he fell, I broke my promise. We moved him into a “memory unit” in Fairfax. Outside each bedroom are photographs. They help residents identify their rooms. A bank executive at his desk, a diplomat enjoying a retirement party, a grandmother embraced by children. I have learned each of his neighbor’s names and studied their photos. Memories sealed behind Plexiglas.
Some traits have deep roots. Ask and my father can still offer a beautiful, extemporaneous prayer. He refused to eat at first, not because he wasn’t hungry but because he didn’t have any money and always had paid his own way. The home’s director printed meal tickets for him marked “paid.” Problem solved. Some traits have vanished, such as his quick temper and his insistence on always being in charge.
We’ve always been close. I’m named after him. About every minute, someone develops Alzheimer’s or some form of dementia. I’m 62. Am I walking down his path?
He used to wait eagerly for me. Now I visit for me, knowing that, an hour after I leave, he will have forgotten I was there. I have watched the thoughtful man who offered me advice become confused, frightened and unable to express the simplest thought. Before he became ill, he wrote a short autobiography for his grandchildren. I read him passages, but most days he thinks I’m describing my life.
Two-thirds of dementia patients die from pneumonia. My father has had it twice since January. Because he is tired, he refuses to do much. Inactivity brings on pneumonia. We are in a vicious circle that I’ve been warned will eventually kill him. Last week, we replaced his walker with a wheelchair. If left alone, he would use neither and stay in bed.
Everyone tells me I’m lucky and should feel grateful I still have him. Should I? I feel ashamed even thinking such a question, and yet I know he would understand exactly why I think them.
I was angry at first. I couldn’t save him. Diapers. Confusion. Indignity. He was a proud man. Respected. I didn’t like deciding whether he needed medication that I knew would knock him out. The resentment is gone now, replaced by abiding sadness.
In a cruel twist, the hardest visits are when he is the most lucid. “How did I end up like this?” he asks. “Let me die.”
Yet during those moments, at least I have him back — if only for a moment. He tells me I am a good son. Minutes later, I am a stranger. He needs a ride to a baseball field where he is meeting his younger brother, Harry. I’ve not been born yet and Harry, who died decades ago, is waiting.
On Father’s Day, I took him hot chocolate and we sat outside. Even though he was wearing three shirts, he complained about being cold. He didn’t want me to read his autobiography. He wanted to sit and hold hands. The two of us. Father and son saying a long goodbye.
The writer is the author of “Crazy: A Father’s Search Through America’s Mental Health Madness.”