Fred Grimm

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A fight for life in the bleak hills of West Virginia

fgrimm@MiamiHerald.com

I crammed a ski jacket, sweaters, heavy socks and a right-handed glove (the dog chewed the fingers off the left) into a suitcase for a cold journey north. Then I just stood, stunned, motionless as a statue, overwhelmed by the implications, as I considered whether to retrieve a certain garment from the back of the closet.

I hadn't worn the suit since my father's death in 1997. Packing it would be a tacit admission that a trip to see my ailing mother was laden with funereal possibilities, though the truth was that I had outgrown that particular bit of symbolism. After 10 years, I'd have needed a bungee cord to fasten the pants.

I had no funeral suit. And no notion how to deal with the life-and- death issues facing another dreadfully ill parent.

My aunt had found my mother prostrate and gasping for air on the floor of her assisted-living cottage. And barely alive. She was coherent enough on the night the ambulance brought her to the Beckley, W.Va., hospital to affix her signature on the form that has become a necessary document in an age when doctors can keep you from dying but not quite save your life. Do Not Resuscitate seemed like a simple declaration, but it came with numbing complications.

Mother was diagnosed last year with acute pulmonary fibrosis, a progressive, incurable, fatal lung disease, complicated by diabetes, a dodgy ticker, a history of smoking, and 79 years of West Virginia living. With her ever-decreasing lung capacity, a simple cold could have grave consequences. When I arrived, she was deathly white and struggling for each precious breath. If I hadn't been told that the diminished woman in the critical-care ward was my mother, I wouldn't have recognized her.

STRUGGLING TO BREATHE

She was clearly dying for want of oxygen. Or maybe from an inability to purge the oxygen-depleted air from her disease-scarred lungs. Her doctors told us that without the installation of a ventilator to clear her lungs, she'd die. But her Do Not Resuscitate declaration precluded the procedure.

My brother and I were flummoxed. This was not the scenario we'd associated with Do Not Resuscitate. We were thinking of something else. Of someone lapsed into an unknowing state. Not someone like our mother, alive and conscious and slowly suffocating to death. A ventilator, her doctor assured us, was a temporary treatment that would be removed once he had beaten back a respiratory infection.

We dispatched him back to her bedside. She was drifting in and out of consciousness and was hazy with medication, but he wrangled her permission. For the next few days, she remained in peril and in terrible discomfort. We began to wonder if this was what she really wanted. Maybe, by clinging to some desperate hope to make us feel better, we had only condemned her to a miserable end.

A PAINFUL END

And I was still haunted by the notion that maybe we had wrung a few more painful, incoherent, undignified days out of my leukemia-racked father's life a decade ago for reasons that had to do more with us than him.

But it's one thing to withhold certain medical technologies from a dying relative. An overt act of unhooking someone from a life-sustaining respirator -- and then waiting for her to suffocate -- seemed a far more troubling moral leap.

Unable to talk, laboring in a kind of drug haze, hardly able to focus, she tried to write a note. We puzzled over the indecipherable paper like it was the Da Vinci code. It looked, we decided, as if she had scrawled "stop" and "don't do anything." We were sure, reading that note, the suffering woman only wanted to be disconnected from the torturous machine. It was the clincher.

But it wasn't. Her nurse later explained that my mother had written the note when she had feared she was about to vomit and was worried that her throat would be clogged. The conversation had nothing to do with the profound question of life or death.

It reminded me of a scene in an old Woody Allen movie. A would-be bank robber hands the teller a note, "Give me all your money, " but none of the bank employees can puzzle through his writing. Our version of this farce could have had dreadful consequences.

Over the next few days, she revived, sank back near death, revived again and faded. And then, last week, the ventilator was removed. She breathed on her own, albeit with the oxygen tubes attached to her nostrils. She regained a little strength. By the time I headed back to Florida, she was downright chipper, happy to be alive. "I'm a tough old broad, " she joked.

Yet she told my aunt that next time -- and with this disease there will surely be a next time -- she'd do without a ventilator, thank you.

The retired Broward public defender Bill Laswell has the letters DNR tattooed across his chest. They aren't his girlfriend's initials.

But Do Not Resuscitate only begins to address the harrowing vagaries of modern medicine. All along the critical-care ward, other families were dealing with variations of this same life- and-death drama.

After two week on this roller coaster, I was a mental wreck. But, thankfully, I didn't need that funeral suit.

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