Remembering Our Fathers

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Jonathan Kozol wrote a reflection about his father in Saturday’s Boston Globe that is well worth the read. He describes the steady losses that Alzheimer’s disease took on his father, a renowned neuropsychiatrist. Any of us who have watched a parent decline with a dementing disease will identify with his account.

Kozol, however, talks about more than the loss. He tells how he was able to communicate with his father long after his words failed him, and how the essence of his father remained intact. Kozol remains buoyed by how his father still seemed to enjoy his life even as his abilities faded. There are, I believe, many of us who share Kozol’s experience.

When my father received a diagnosis of Alzheimer’s, I studied websites and books, trying to learn more and prepare for what was ahead. I learned about the 5, 6 or 7 stages of Alzheimer’s disease, depending on the expert. I braced myself for changes in personality, violent outbursts, and the day my father would not know me. Those changes never happened.

My father gradually lost his ability to function, but he never had violent outbursts, and he knew who my mother and all my siblings were until the day he died. As for his personality, like Mr. Kozol’s father, the essence of my father’s gentle and perceptive personality remained. He was solicitous of others, appreciative of help, and always ready for a good joke. One of my favorite memories is watching my father with several other patients at a dinner at the nursing home. None of them spoke in complete sentences, and I could not follow their conversation. My father said something with the timing and inflection of a joke, and all of them laughed and laughed. I left the dinner thinking that my father was still able to enjoy life.

Having observed people living with this disease for many years, I have concluded that this disease is different for each person. When you have seen one case of Alzheimer’s, you have seen one case of Alzheimer’s.  In the effort to raise awareness and funding for research, the most extreme behaviors are emphasized, remaining abilities are understated, and as a result, families lower their expectations for on-going relationships with their loved ones.

So for those of you whose fathers are in the grip of this disease, be encouraged by knowing that the trajectory is not uniform, communication can continue long after words fail, and the qualities that make a person beloved will not necessarily disappear. Happy Father’s Day.


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