April 1st, 2009

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Coming to Grips

Wednesday, April 1st, 2009

It is difficult to come to grips with everything that has happened in the past three years. How it all started: On Christmas Eve 2005, A. and I watched as my mother nearly fell down the stairs of our 1916 four-square house. I still remember it vividly. My mother looked ghostly, stricken. She’d been upstairs in the bathroom for a time, she said, struggling to get her breath. Now she clutched my arm: “I can’t breathe.”

A flurry of activity: Shepherding her to an antique Windsor chair in the kitchen, away from the hubbub of the living room where Paul Desmond’s jazzy sax played on the stereo and birch logs snapped in the fireplace and family and friends chattered over the detritus of recently opened presents.

I rushed upstairs to ferret out an inhaler a doctor had given me for the odd wintertime wheeze. On the way back I detoured to the living-room chair where my red-vested father sat, joylessly, detached from the conviviality around him; I whispered that mom couldn’t get her breath. He followed me, in his lanky lumbering way, to the kitchen.

My petite mother sat bent over, head down, her shoulders heaving. She wore a blue double-breasted jacket with a white turtleneck, a jaunty scarf at the neck and a festive Christmas tree broach on her lapel. She’d been so lively earlier. Now she was distressed. She couldn’t get the hang of the inhaler. “Breathe out, Mom,” I said. Then, as I lifted the inhaler to her mouth: “Now breathe in as deeply as you can.” She took a shallow sniff and then exhaled, coughing. It was hopeless. “Maybe I’ll be OK if I just sit here,” she said between pants. “You go and be with your guests.” I held her wrist, trying in vain to take her pulse. Her skin felt clammy. I asked her if she felt dizzy and she nodded weakly.

Just an hour before, my mother had repaired to our unheated porch to smoke a cigarette. I’d followed her out into the cold to wrap a quilted jacket around her shoulders and to switch on a small space heater. As she’d opened the oaken front door, wielding her pack of cigarettes and a glass of wine, she’d smiled in an impish but also sheepish way at the friendly tsking from A’s sister; I’d said, “I agree completely, I wish she’d quit, but what the hell, she’s 81 and still kicking, so at this point …”

Still, even then I recalled my shock the previous summer when my mother had to stumble to a bench, nearly breathless, as I walked with her from a restaurant to the car in a brisk wind. She’d walked at a snail’s pace from the start; my father and A. had soldiered ahead and were already opening the car doors as I huddled next to my panting mother on a wooden bench 40 yards away.

My mother saw the worry register on my face as I took in her ragged huffing. “I know you’re alarmed because you haven’t seen me like this,” my mother managed to pant out. Just minutes before, she’d been dragging on a cigarette, having lit up, as always, the moment she stepped free of the restaurant’s smoking ban. “Do you have pneumonia again?” I asked her.

The truth was that I didn’t see much of my mother. We’d long settled into a groove of casual intermittence: Brief phone conversations every couple of weeks, a handful of visits (Thanksgiving and Christmas, a few group birthdays, plus a dinner when my parents returned from their winter elderhostel soujourns … and the occasional night out, like this one at a restaurant in the city). I knew, though, that my mother had become easy prey for respiratory woes: bronchitis twice a year on average, sometimes morphing into pneumonia. The past winter, she’d landed in a hospital in Arizona; the previous year, it had happened in Florida—episodes my sister and I had learned of only after the fact.

Her doctor, my mother told me that night, had diagnosed in her “a touch of emphysema.” My mother now had some white powdery medicine she took; she pawed through her her purse to show me the Advair tablets. “Emphysema!” I exclaimed, peering at the little foil packets of powder. But she waved her hand dismissively: “It’s not anything dire,” she said, still breathing heavily. “I just have to take this stuff every day.”

“But what exactly did the doctor say?” I asked. My mother was dabbing at her nose with a kleenex. Her breathing had begun to steady. “She said the same thing she always does: Get. Rid. Of the cigarettes!” she said, with exaggerated dramatic emphasis and a flourish of her left arm.

“I’ve tried,” she added in a vaguely bemused tone. I knew that was true. It just never took; within days she was cheating, half a cigarette in the morning, half at noon, a whole one after dinner, then back to a pack-and-a-half a day. She was hooked but good, she said. She should have quit when she was 19 and her father offered her $100 to ditch her Lucky Strikes.

I’d always thought smoking took the edge off her life, the everyday letdown and slog of it; but sheer drug addiction also had to be ferocious in someone who’d been smoking for 60-odd years. Nicotine, rolled into tobacco with a hundred other carcinogens; all that we know now. My mother had started in college, during the World War II years when when cigarettes were sexy, when everyone lit up in supper clubs and movie houses, when Camel was advertised as “the choice of more doctors.” I thanked my stars I’d been able to stop two decades before; I still worried about the damage my 12 years of Vantage 100s might have wrought.

“You’re lucky you were able to quit,” my mother said then, as though reading my mind. “I wish I’d never started the stupid things.” She was getting to her feet. “I’m OK, really, Mia. Your old mother isn’t going completely to pot yet.” She gestured toward the parking lot. We could see a plume of exhaust; my father had started the car.

“We’d better catch up,” my mother said. “He’s antsy. I’m sure he’s getting annoyed.”

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Coming to Grips II

Wednesday, April 1st, 2009

Her head still bent, her skinny and hunched blue-jacketed shoulders heaving, my mother on the Windsor chair that Christmas Eve did not seem to be getting any better. “I think you should go to the emergency room,” I said. “It’s just 10 minutes from here, a zip down the freeway.” 

My mother looked up at me. “Maybe I should go,” she said. My sense of alarm quickened; stricken though she was, I had expected my mother to shrug off the need for medical care with her customary “oh, pfft, I’ll be OK.” But now she looked up at my father, who was standing silently a few feet away, his hands in his pockets. He looked bored; his head was turned slightly toward the counter, and I realized with incredudlity that he was scanning an environmental magazine A.’s nephew had left out on the counter.

“What do you think?” my mother asked him. “Dad?” I said. He swiveled his head toward where I stood, my hand on my mother’s heaving shoulders. “Should I go to the emergency room?” my mother asked him again. Her breaths were coming in tortured half-pants; she was deathly pale and had begun to perspire heavily. She seemed scared. I thought of a heart attack, glanced toward the phone: 911?

“What do you think?” my mother asked my father again. “I think you need to go,” I interjected. “I’ll drive if you want.”

“Maybe I should,” my mother agreed—gratefully, I thought. Then, again addressing my father: “I don’t know, should I?” He shrugged. “If that’s what you want,” he said finally; his tone was mostly indifferent, but a current of impatience ran through it. Then to me, while gesturing toward the magazine: “Say, could I get a copy of this?”

Nonplussed doesn’t begin to describe what I felt. I looked at A., whose jaw had dropped, and then at my mother, whose eyes evoked those of a frightened deer. “You’re going, Mom,” I said. “Let’s call an ambulance,” A. suggested, with a meaningful eye roll toward my father. “No,” my mother said. She struggled to her feet. “I think I can make it to the car.”

That was the start. Everything that came afterward was augured in the kitchen that night: Not only my mother’s incommutable turn toward terminal illness, but also just how arduous and bizarre and heartbreaking her final three years would be. The twisted dynamics between my mother and father and how they would increasingly imperil my mother’s well-being. Her dependence and fear and need; his clueless inadequacy and his resentment; my alarmed and stumbling attempts to intervene.

My mother panting in a corner while my father scanned a magazine; he was, and would remain, the relentlessly stolid axis around which everything revolved, the stumbling stone on which everything foundered; his disconcerting “if that’s what you want,” with its edgy indifference, would prove to be as good as it got with him.

All the makings were there in that moment for what would play out, as her needs steadily grew and his limitations and resentments bloomed apace, as something akin to a hostage drama.

That night, my mother and father did proceed to the hospital, where—as I later learned—my father deposited my mother at the first hospital door he saw, miles from the ER, while he drove off to a parking ramp. In the unattended lobby, my dizzy, gasping mother was so confused and panicked that tears blurred her eyes and she lost control of her bladder. Thankfully, a passing doctor soon found the distressed heap crumpled in a puddle—my mother—and in short order she was flying to the ER on a gurney.

I waited by the phone; I had asked my father to call as soon as he knew anything. “Am I going to lose my mother?” I asked A, noticing the quake in my voice. “I’m not ready,” I said. When the phone hadn’t rung by a little after midnight, I tried my father at home. He answered after seven rings. “Hello?” he said sleepily. “I’ve been waiting for you to call,” I said. “You have? About what?” he answered.

My mother had been admitted to the hospital; my father said he hadn’t a clue why. “I think they just want to watch her,” he offered. The next morning, A. and I sped to the hospital early, hoping to catch a doctor on morning rounds. We were in luck: We stepped off the elevator on my mother’s floor to bump almost literally into Dr. J., an attending physician who’d just come from my mother’s bedside. “How is she?” I asked him, urgently.

“Well, as you know, her COPD is very advanced,” he told me with a look of grave concern. He was tall, long-faced, soft-spoken; he spoke with what I thought was a West Indian accent.

“Her COPD,” I repeated dumbly.

“Chronic obstructive pulmonary disease,” he said. He looked at me in puzzlement. “Your mother’s emphysema. It’s very bad.”

I felt shocked. My mother’s emphysema—! In the same heartbeat, everything focused sharply and then fell apart. My God, I thought. My mother’s breathlessless last summer. Her dismissive shrug, minutes after stubbing out a cigarette, in mentioning “a touch of emphysema”; not a big deal, she’d said, pointing out the magic powder in her purse. Her repeats of bronchitis and pneumonia, the hospitalizations.

I knew little of respiratory disease. But how naive I’d been, I thought; stupid, even. But then, I didn’t see my mother that much, I reminded myself. A fact that of course offered no consolation, only a slamming sense of guilt.

Another pang: The Christmas Eve at our house the night before–! It’s no wonder her failing lungs had gone to pieces. That crackling fire in our fireplace, the candles burning in the kitchen, all those curls of wafting smoke. The cold porch, her shivering out there with her cigarette and glass of pinot grigio. The steep stairway schlep to and from the bathroom.

But I hadn’t known. She’d seemed tired, true; everytime I saw her she looked smaller and more stooped. Her voice was hoarse; yet another “little bronchitis,” she said; her doctor had given her Zithromax. But she was bright and sociable, as always, hauling in a sack of presents and a foil-packed rectangle of store-bought brownies, interested in everyone, mingling, intrepidly sampling unfamiliar tapenades and exotic cheeses; such a vibrant contrast to the glum husband frowning uncomprehendingly at bruschetta and sittingly in lumpen silence in an armchair near the fire.

And there, too, was my mother heading to the porch, her cigarettes and her Bic lighter, her glass of wine, and her tiny traveling ashtray with the silver lid that snapped closed over her lipsticked butts …

What, then of her own apparent innocence? Was it denial, her old friend? Or genuine ignorance? Her mind already had begun to slip; she forgot things, seemed to lose her way easily, had become so addled and agitated while playing Spit in the Ocean the previous spring, during a rare evening at our house, that A. and I proposed we throw in the cards and bring on dessert. Maybe she hadn’t actually been able to retain her doctor’s diagnosis, or to make sense of it.

Another possibility presented itself: That it simply hadn’t been possible for my mother to go there. Her husband, axis and stumbling block. Rationalist to an irrational extreme. He had no use for illness; it’s in your head; just don’t think about it. What’s in your head is real. Illness is not. He’d embarrassed and infuriated my mother by suggesting to her terminally ill brother, struck down at 60 by a brain tumor, that he might get right to the business of snapping out of it. Just read Norman Cousins, he said, in his earnest and superior way, though presumably he thought himself helpful.

I flashed on the previous summer, my mother gasping beside me on a bench: “We’d better catch up; he’s getting annoyed,” my mother had said with a nod toward the car where my father sat with the motor running. Yikes, I thought suddenly: My father was probably at home at this very moment loading up the RV. He and my mother were supposed to head off to the Southwest tomorrow—though my mother made it abundantly clear she’d had enough of snowbirding in a Winnebago. And of course was going nowhere now, no matter how much he willed it.

But the wreck of my mother’s lungs. Whatever my mother had made or failed to make of her pulmonary prognosis, how had her primary care doctor failed to intervene in this catastrophe? Here was Dr. J., this hospital staff doctor who’d just met my mother, declaring a full orange alert: I listened as he explained that my mother’s severely impaired lungs had all but caused her heart to fail last night, that he’d immediately hooked her to supplemental oxygen, ordered drugs, affixed a nicotine patch; that another cigarette could be the death of her; that she would have to change her life whole cloth, be on oxygen 24 hours a day, follow a regimen of medications and nebulizer treatments.

They’d soon know more from a CT scan, Dr. J. said. I was scribbling notes furiously in the margins of my checkbook, my fumbling fingers having failed to find a notebook in my purse. My mother certainly didn’t have bronchitis, he added; he couldn’t fathom why her regular doctor had given her Zithromax. My mother was profoundly weak, he emphasized; this episode—a COPD exacerbation, he called it—was extremely serious. She needed to remain in the hospital for several days. And in any event, Dr. J. absolutely would not discharge my mother without oxygen tanks and a rock-solid care plan. He had summoned social services to arrange a family consult. “This is an intervention,” he said. “It’s her only chance.”

He wrapped up by stressing that “there is so very, very little left to your mother’s lungs. It’s amazing she is still walking around.” How is it, I thought again, that her regular doctor, Dr. L.—an internist my mother always referred to as “breezy Carol”—would not have acted with a similar sense of emergency? Breezy or not, she was a doctor, for chrissake, and here was her very own patient with “very, very little left of her lungs.” How had she let my mother go home without an oxygen tank—with only those packets of powdery Advair to tuck away next to her cigarettes?

Were we in malpractice territory? Dr. J.’s wonderment that breezy Carol had diagnosed bronchitis, “when what she needs is oxygen, her lungs are starved for it.”

But now. Focus. What now? I called my younger sister, who had been waiting for news; she promised to get to the hospital as soon as she and her 9-year-old daughter had finished rolling out gingerbread. I looked at A., who shook her head. We went in then to my mother, the bright candle of her now a spent wick in a hospital gown. Her nostrils sported slender oxygen tubes. Her face lit up the moment she saw me, but she was weak and confused. “How did I end up here?” she asked me. My heart swelled with love, fearsome and fearful.

In the hallway, I phoned my father—better put him in the picture right away, I thought. Dr. J.’s sobering prognosis would, after all, be nearly as life-altering for him as it was for my mother.

“I see,” he replied noncommitally after I’d filled him in. “That’s very interesting. Thank you for letting me know.” His exact words; I remember them with searing clarity. I was speechless for a few moments. Across the hallway, I could see Dr. J. standing outside my mother’s room with a woman whose kindly countenance and manila folder suggested a social worker. Dr. J.’s slender fingers motioned to me. “Are you coming to see her?” I said finally into the phone.

“I hadn’t planned to,” my father said. “I’ve got a lot of packing to do.”

This is a true story. It was Christmas Day, 2005. That was the start. Even considering the many mountains that lay ahead, it was all downhill from there.

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