Essay: My mother told me to let her die rather than let her live in a wheelchair



The night before my mother had her knees replaced almost 15 years ago, she took me aside. “If I end up in a wheelchair,” she said, “I want you to promise you will have them pull the plug.”

My mother was 75. She had five children, nine grandchildren and a husband of 55 years who still wrote love poems for her. She was frightened, vulnerable, unable to imagine a life worth living if she couldn’t walk. Fiercely independent her whole life, she’d agreed to surgery in the first place only because my sister, a physician, warned her that without it she was headed to a wheelchair.

“Promise me,” she said through tears. “I can’t live in a wheelchair.”

I was taken aback, surprised that she’d rather die than adapt, and hurt that her personal calculus devalued maximizing time with those who love her.

Neither of us were our best selves.

“No,” I said, “I won’t promise. Besides, there’d be no plug to pull.”

The surgery was excruciatingly painful but a success, leaving my mother ornery for a time but on the mend. Only afterward did the surgeon tell her that knee replacement is one of the most painful operations.

For two months, my parents lived in our downstairs den as my mother slowly recovered. She was diligent about her physical therapy. With my mother using crutches, we ventured first to the corner, then, with a cane, to the coffee shop, and finally, just before my parents returned home, we walked to the synagogue three blocks away for my daughter’s bat mitzvah. Before the surgery, my mother could not climb the curb from street to sidewalk without wincing in pain. Now she walked up a full flight of concrete stairs to the sanctuary inside.

Today my mother is 89. Her knees don’t hurt, but other parts do, and her heart, grown softer and sweeter over the years, has weakened. After months of resistance, she uses a walker to traverse even the short distance from her bedroom to her living room in the independent living facility in California where she now lives. She has recalibrated her understanding of dependence and independence, and, given the choice between staying home or using a wheelchair in the airport, she chooses the wheelchair and the chance to travel.

This travel — to a grandson’s college graduation in Chicago, a granddaughter’s graduation in Maine, another granddaughter’s graduation in Atlanta — is not the travel she did with my father, the returning GI she met in 1946 at age 19 in engineering school. They traveled together to Europe, China, various states. Neither is it the business travel to Japan and Russia she undertook while managing international fusion research projects for the U.S. Energy Department. But it is travel nonetheless.

A few years after my mother had her knees replaced, my father started to suffer from dementia and Parkinson’s disease, and my mother (eventually with round-the-clock help) kept him at home longer than seemed possible to my siblings and me. When we finally moved my father to a nursing home in 2013, my sister and I, wanting to introduce and honor the man beneath the disease, made a sign for his door that read: “Husband. Father of five. Grandfather of 12. Retired nuclear engineer. Fluent in five languages. Philosopher. Poet.”

My father died in his sleep a few months later. By then, my mother had weathered his frustration and anger at knowing, helplessly, that his mind was slipping away. When that awareness vanished, leaving him gentle and serene, my mother preserved his dignity with attentive home caretakers who treated him with respect, even affection.

The man my father had been would have been appalled at the man he had become, incapable of navigating his way from the start of a simple sentence to the end, too unsteady to have much use for his walker, unable to groom himself. He would not have wanted to live in such a state. But the man he had become suffered no pain. Loved and loving his entire life, his face exploded with a smile at the sight of my mother or one of his children. Sometimes my mother’s daily visit to the nursing home consisted of little more than holding the hand of the husband who, in a poem, once described happiness as the moment she came home. His life still had value, for him and us.

Every year for the past several years, I have taken my mother to New York, where she grew up. Together, we visit the Museum of Modern Art, the Museum of the City of New York and the Jewish Museum. In every museum, I check my mother’s walker and borrow a wheelchair. We go to a Broadway show and eat at a restaurant next to the theater because, despite the walker, my mother no longer has the strength to walk more than half a block without resting. We don’t venture more than a few doors from the hotel when we go out for breakfast.

“Next time,” I said to my mother as our last visit drew to a close, “let’s rent a wheelchair so I can take you to Central Park.”

More grateful now for what she can do than mournful over what she can’t, my mother said, “OK.”

Irene Sege is a Boston-based writer.





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