My father is mostly dead. I saw him last weekend. According to Miracle Max in “The Princess Bride,” mostly dead means that he is slightly alive. And that is just what he is.
Diagnosed with Alzheimer’s and mixed dementia seven years ago, he is marooned in a shell of his former self and on hospice. The end is not far away. My wife, Patricia, and I visited him at the skilled nursing facility where he resides. I had just read an article headlined “Alzheimer’s drug shows promise in early results study.” With this in mind, I couldn’t help feeling a mix of profound sadness and frustration when we saw him, while holding out the prospect of hope that a cure for the presently incurable may be that much closer.
Seeing my dad is always hard – the facial features are familiar, but there he lies in a hospital bed amidst tangled linens starched to mask stains of others, swathed in a man diaper and sporting a pink T-shirt from some long-ago family vacation destination, no pants and white athletic socks festooned with ironed-on name tags, his face and body paused as if in a wax museum display. Such a sight makes me not want to visit. But then he begins to speak. A barely audible stream follows in staccato fashion with an occasional recognizable word, punctuated by a string of gurgled “hey-hey-heys.” We have to lean over to hear him. “It’s tough, it’s tough,” he mumbles. At least that’s what we think he said.
Alzheimer’s and end-of-life issues surely are tough. My wife’s father also suffers from dementia. Her mother and siblings, my sisters and all of our children and grandchildren, and my father’s wife – we have all wrestled with the complexities of the disease and its impacts across generations. Like other fatal diseases, Alzheimer’s infiltrates our daily lives. How we respond is everything. As the article noted, “Some 6 million people in the U.S. and many more worldwide have Alzheimer’s, which gradually attacks areas of the brain needed for memory, reasoning, communication and basic daily tasks.” The progression of Alzheimer’s can upend our plans to “age in place” and tests the mettle of our family relationships.
On the day of our visit, I gave my father a spa treatment. I cut his hair and fingernails (I decided the podiatrist could deal with his toenails). It took a while. My electric clippers were small. My wife would turn him on his side so I could get the hair on the sides and back of his head. Piles of soft white hair sat in clumps on the extra sheet the nursing staff helped me procure and on the cape I brought along. If he moved suddenly, the mass of hair would be all over the floor. But he didn’t. He lay there content and muttered on occasion. I heard him exclaim, “Ouch!” when I cut his nail too short, and I recoiled that I had caused him pain. But he did not lurch or pull away.
Within our family we have an ongoing discussion. What kind of life is it to be lying in a bed, dying in a skilled nursing ward, drifting farther away each day, with family able to visit only on occasion because of great distances? His hospice social worker added her voice to the discussion. She astutely observed recently that while none of us would think this was a great way to finish off a life well lived, he exhibits no verbal or non-verbal clues of unhappiness or discomfort, he eats and is not combative with staff about personal care. In this, he is comfortable, supported and safe. Most of all, he is loved.
I know my father is not dead yet; he is only mostly dead. But that means he is still slightly alive. And maybe a cure is in the pipeline so other families will not have to endure the long goodbye as we and many millions of others do each day.
It is certainly tough. But for this visit and experience with my dad, I can celebrate and rejoice.
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