Fourteen years ago, my family shared a near-death experience.
It actually started 16 years earlier when my father, then an active and vigorous 72, had a stroke. All of us were stunned. How could this healthy, happy, engaging, and busy man have been felled? Fortunately, he still had his speech, his intellect, and his hair-trigger sense of humor. The laughter that poured out of his hospital room when family members visited drew wondering peeks in the door from the nurses and other neurology staff. “We don’t hear much of that around here,” one said as she stood in the open doorway, frankly staring in.
My dad lost a lot to the stroke. He had a left hemiparesis and a left hemianopsia, a bizarre disruption of vision that we all tried to grasp by blocking with our upright hands the left half of what each eye sees. He lost the sense of left-ness altogether, along with the meaning of the word “left.” Walking down the hall with someone’s assistance, he could make the left turn into the kitchen only by step-turning to his right 3-quarters of the way around. At meals, he would eat everything on the right side of his plate, leaving the left side untouched. When we turned his plate around 180 degrees, he would say politely, “Oh no, I couldn’t possibly,” as if someone had set a full second course in front of him.
Daddy tackled his rehab with goodwill and seriousness of purpose. He learned that when he put his shoes on, “I have to do it twice,” for although he had not lost feeling in his left leg or foot, they no longer had any notable existence for him. He would put on his right shoe and then say to whoever was helping him, “OK, let’s go.” Painstakingly, by a system of his own devising, he taught himself to read again – the physical and visual work of reading, that is, for he still possessed the comprehension and the perceptual apparatus that turns printed words into units of meaning. He enjoyed the Wall Street Journal and New York Review of Books, their large pages carefully cut apart by my mother, folded lengthwise to fit his visual field, and numbered in bright inks at the bottom so he could keep them in sequence as he read. He liked the funnies that came in the local paper. Although the job was slower and hampered by his new one-handedness, he still read The Economist, a reminder of the long academic career from which he had retired only a couple of years before.
The “new normal” didn’t last. Steadily, over a few years, in increments not attached to noticeable incidents, he began to lose cognition. After a while, he could no longer follow plot lines, punch lines, or complicated activities. Never interested before, he began to watch golf instead of football on TV, its hush and pace and one-thing-at-a-time-ness more suited to ease of understanding.
For my sister and me, our father’s continual diminishment became the deepest heartache. A witty, smart, and energetic man; the life of many a party; a storyteller and good-natured bullshit artist in the grand Texas tradition – we’d always thought that Daddy would simply live himself to death, then roll into his grave one day at the end. It never occurred to any of us – least of all himself – that he could be disabled, or that his very essence could drain away dram by dram, his person fade inch by inch.
It came time to make his Advance Directive, to get his wishes down on paper while he could still make reasoned choices and tell us what they were. No heroics, he insisted. Keep me comfortable; let nature take its course. With his physicians’ concurrence, he signed an out-of-hospital DNR. No more emergencies; no more 911. Love me enough to let me get away.
We understood, and all of us supported, his desire for an unmolested death.
About that same time, he began to have little “sinking spells,” losing consciousness for some moments: no discernable pulse, no breath. Some lasted seconds, some a minute or two. Then a sudden deep breath, and he would come around again, without the slightest inkling that anything unusual had happened. Though few and far between and always gentle, these episodes frightened us. The first few times we raced to call for help: the efficient handsome firemen, the wailing ambulance, the tedious hours in the ER, the inconclusive results, the tired trip home after all was said and not much could be done.
One day it dawned on us that this could be Daddy’s way out. We came to a consensus: if it happened again, we’d muster our courage. We would not call Emergency – we’d call my sister. A physician herself, she was versed in these matters, and she held his Power of Attorney for medical decision-making.
It did happen again – at a family gathering to celebrate the birthdays of our two husbands, my sister’s and mine. The setting was a venerable Mexican restaurant, noted as much for the beauty of its décor and art collection as for the sumptuousness and authenticity of its cuisine. Eight of us were there: my parents, the two couples, our nephew, and my father’s home health aide. Our dad had a margarita for the occasion, and his favorite meal, carne asada a la Tampiqueña. As we all rose from the table, stuffed and happy, he suddenly, silently, slumped in his wheelchair and a tiny, shiny line of saliva drooled down onto his shirt.
Quickly and quietly, we all moved outside and pulled the van up next to the wheelchair, opening the door to shield him. “Daddy?” My sister pinched firmly into his nail beds, but raised no pain reaction. Someone stroked his hair, and someone rubbed his back, gently, steadily, as minutes passed. My mom got into the car. “You OK, Daddy-Boy?” My sister tried another test, a rough sternal rub, but still got no response. This was the longest spell ever. Maybe it was the last, we thought, and even murmured it aloud. Wow, we said (but quietly), what a way to go – just slip away in a happy time, surrounded by your family, after a good margarita and your all-time favorite dinner.
Then he yawned, the first of 4 great gulps of air, and looked up at us, blue eyes confused. The sons-in-law helped him into the car.
To our own great amazement, all of us had been calm, including my mom, his wife of 66 years. We went home a little shaken, and a little bit elated, knowing now that we could actually do it, could carry out his wishes.
It was a great dress rehearsal.
Acknowledgments
My thanks to the friends, colleagues, and family members who have read previous drafts of this essay over the years and made very helpful suggestions.
Competing interests
None.