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An American Story

Posted 9/15/2013

Posted in

  Some months ago, I decided to allow myself some leeway with this blog on Sundays. Most weeks, I go along as usual and post something that is directly related to breast cancer. Sometimes, however, I have instead shared a book review or even a poem. Today's entry is a long article from the New York Times Magazine about what can happen to a loving, well educated, well informed, well resourced American family at the end of life. This is not about cancer, but is most surely is about our health and what we all need to become even more informed about.

  There are always stories about the deaths of those whom we have loved. My father died at 64, only two months after being diagnosed with lung cancer. He was not a smoker, but he had been in charge of building the Army's first nuclear reactor, and, two years after his death, the same thing happened to this successor in that job. My mother died at 86, six years after a surgical catastrophe. She was undergoing a hip replacement, and, as they were sewing her up, she threw a clot and was "dead" for several minutes. Very unfortunately,  in spite of all of her Living Wills, Advanced Directives, and pronouncements of choice, she was revived, woke up a few days later, and never again recognized anyone. She lived the last years of her life in an Alzheimers Unit of a fine nursing home--the exact scenerio that she had most wanted to avoid and had made her children promise would never happen. It did.

  Not that we ever get a choice, but I look at the paragraph above and wonder who had it worse. My father's health was fine until his diagnosis, and there was every reason to believe that he would have gone on for a number of years more to work, to travel, to enjoy himself and those whom he loved. He was most certainly cheated of time. My mother had more than twenty years longer than he did, but I suspect (without ever really knowing) that she would have traded some of those years to avoid the nursing home and the dementia.

  This long article is well worth your time. I warn you that it is painful reading, but it is very important reading, and I hope you read every word.

  Here is the start and a link:

What Broke My Father’s Heart
By KATY BUTLER
One October afternoon three years ago while I was visiting my parents, my mother made a request I dreaded and longed to fulfill. She had just poured me a cup of Earl Grey from her Japanese iron teapot, shaped like a little pumpkin; outside, two cardinals splashed in the birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. “Please help me get Jeff’s pacemaker turned off,” she said, using my father’s first name. I nodded, and my heart knocked.
Upstairs, my 85-year-old father, Jeffrey, a retired Wesleyan University professor who suffered from dementia,
lay napping in what was once their shared bedroom. Sewn into a hump of skin and muscle below his right
clavicle was the pacemaker that helped his heart outlive his brain. The size of a pocket watch, it had kept his
heart beating rhythmically for nearly five years. Its battery was expected to last five more.
After tea, I knew, my mother would help him from his narrow bed with its mattress encased in waterproof
plastic. She would take him to the toilet, change his diaper and lead him tottering to the couch, where he would
sit mutely for hours, pretending to read Joyce Carol Oates, the book falling in his lap as he stared out the
window.
I don’t like describing what dementia did to my father — and indirectly to my mother — without telling you first
that my parents loved each other, and I loved them. That my mother, Valerie, could stain a deck and sew an
evening dress from a photo in Vogue and thought of my father as her best friend. That my father had never given
up easily on anything.

http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?pagewanted=print&_r=0

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