The New York Times, June 14th, 2010

Editor’s Note:  No links this time, for this is really not a story about specific programs or products to help people, this is a personal story about what one family went through.  It profoundly shook this editor’s perceptions, and it is our hope that it may provoke a thought or two in you. 

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.

Born in South Africa, he lost his left arm in World War II, but built
floor-to-ceiling bookcases for our living room; earned a Ph.D. from
Oxford; coached rugby; and with my two brothers as crew, sailed his
beloved Rhodes 19 on Long Island Sound. When I was a child, he woke me,
chortling, with his gloss on a verse from “The Rubaiyat of Omar
Khayyam”: “Awake, my little one! Before life’s liquor in its cup be
dry!” At bedtime he tucked me in, quoting
“Hamlet”
: “May flights of angels sing thee to thy rest!”

Now I would look at him and think of Anton Chekhov, who died of
tuberculosis in 1904. “Whenever there is someone in a family who has
long been ill, and hopelessly ill,” he wrote, “there come painful
moments when all timidly, secretly, at the bottom of their hearts long
for his death.” A century later, my mother and I had come to long for
the machine in my father’s chest to fail.

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