Emphysema

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, History, Tossed and Turned

Wednesday, April 15th, 2009

For three difficult years, I tossed and turned, agonizing over how to help my mother. There was no mistaking the crisis; she was entangled in a train wreck that wouldn’t quit. Between her emphysema and her osteoporosis and her dodgy mind, she was in rough shape and no longer had the capacity to look out for herself. Adding torment to crisis, my impaired father was making things exponentially harder for her—and impeding my every attempt to intervene with zealous fury. 

My mother’s lungs were failing and her bones crumbling—but there she was, stumbling up stairways in her large split-level house, her 50 feet of oxygen tubing tangling under her feet, her knuckles white as she clung, gasping, to railings and walls. There she was panting over saucepans and plates and burning potatoes while my father impatiently awaited dinner in his armchair. There she was shuffling along, all 80 bony breathless pounds of her, to the basement washing machine, down three flights of stairs with her arms full of clothes and her oxygen tubes trailing and her forehead bruised from hitting the laundry tub on an earlier trip.

And recently, in the soaring heat of mid-July, there she was, her shoulders heaving, perspiration dripping down her deeply wrinkled face, my father making a show of opening the kitchen window while affixing duct tape over the turned-off switch for the air conditioner (“because sometimes she thinks she needs things,” he said—nearly knocking over the hairdresser I brought with me one scorching afternoon in his haste to block my path to the a/c thermostat—“but I know better”).

Her trays of medicine went untouched; her nebulizer gathered dust. There was rotten food in the ‘frig. She couldn’t bathe because my father consistently yanked out the bath chair and handheld shower I had installed in what had amounted to something like a guerilla action. Affronted, enraged, determined to regain sovereignity over house and wife, adamant that my mother was “doing just fine,” and increasingly tangled up in dementia’s tangles, by my father was harassing the home health aides I’d managed to shoehorn into the house, tenuously, two days a week. The concerned and resourceful Retha or Ifè would try to sneak into the filthy bathroom with a can of Lysol and there he’d be, close on their heels (“Don’t touch that faucet,” he’d warn, hovering, hectoring; “I’ll get a lawyer”).

How to extricate my mother from all this wreckage? I dreamt of crushed and twisted metal; I felt as though I needed, in every possible way, the Jaws of Life. I knew, tossing and turning, that I was out of my depth. Standing up to my father had been worse than worthless; it had seemed only to stir his blood; he became more pugnacious, more irrational, more fiercely combative.

My mother clearly needed to be wrested out of the house and into a supervised living arrangement. But how? Her doctors had proved to be of little help. Her pulmonary specialist, Dr. N., a sympathetic young woman whose soft voice carried a clipped British-inflection as well as an East Indian accent, saw my mother rarely, only long enough to cluck over the results of breathing tests her nurses had just completed with my mother. “You are doing remarkably well to be here at all with so little left of your lungs,” she said kindly to my mother, who had just managed to walk six feet in a test of respiratory function. “Just keep doing your best,” she concluded, smiling warmly at the end of these five-minute consults.

My mother’s primary care physician, Dr. U., obviously was the person who ought to be coordinating all aspects of my mother’s care. Yet Dr. U., a highly recommended gerontologist I’d wheedled into taking on my mother, seemed simply aggrieved to have in her examining room a patient of troublesome complication and need—and especially by the daughter who insisted on calling her attention to an unending chaparral of issues, of pressing consequence to my mother’s health, that sprawled inconveniently beyond Dr. U.’s crisp examining room.

Continued …
History Tossed and Turned, II
History Tossed and Turned, III
[In Back Story: Big Mess With Mom]

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Recent History, II

Tuesday, April 14th, 2009

In what proved to be only a passing spasm of concern, Dr. U. herself had in early 2006 brought my mother’s vulnerability—or more specifically, her endangerment in the “care” of my incompetent and irrational father—to the attention of county’s adult protection division. My hopes had soared. But the situation, abundantly bad and deteriorating by the day, just wasn’t bad enough by the county’s lights. “The case of neglect against the husband is inconclusive,” said the letter from the county (which my mother repeatedly phoned me to read aloud with confusion and anxiety, my father’s angry voice in the background).

Dr. U. seemed to take that as permission for her to stop caring. My despair grew.

In the end it took a crisis: My mother found half-dead by one of the aides who had valiantly kept going to the house. The mercury soaring, the a/c off, my mom on the floor pale and dizzy in urine-soaked clothes, her respiratory distress acute and her heartbeat erratic. My father with his hands in his pockets. The 911 call, the ambulance.

The call from a social worker at the hospital: “Sometimes, when our parents get older we may need to pay a little more attention to how they’re doing,” a disapproving male voice said to me after sharing the news that my mother in bad shape in the emergency room. “Right,” I said.

The county stepped up then, finally: If the husband tries to take her home, we will intervene. Wonderful hospital social workers entered the scene: They got it and they knew how to help. Eventually I got my mother into Haven Ponds Care Center for rest and rehab—a transitional month during which I worked with social workers there to hatch the plan that would get her out of her house for good.

But I didn’t wrest her away from the grasping and incompetent control of my father. My failure. My guilt.

“If you could have, you would have,” my grief counselor, Melody, said to me gently. “You managed to do a lot for your mother,” she reminded me. The specialist, the gerontologist, the pulmonary rehab, the battery of meds, the nebulizer, the best oxygen, the coolest walker, the home health aides, and the right insurance to pay for it all. “And you did get her out of the house and into assisted living. That was huge.”

“But my father went with her,” I said. My mother had blossomed during her time at the care center. She had liked being there on her own, had been happy. “I don’t want to leave here,” she told me the night before her move to the assisted living apartment, where my father was already seething among boxes and furniture left by the moving company. “I’m used to it here,” my mother went on. “And I like it. I’m the pet.”

I am haunted by this conversation. By having failed to make it possible for my mother to remain at Haven Ponds, on her own and happy. I wish I’d fought for it. Things do, of course, come into focus differently in hindsight. At the time, everything was complicated and highly charged: A blur of doctors and social workers, lots of meetings and machinations, my father on the scene as both a troublesome presence and a potentially serious obstacle, the county standing by to swoop in if my father tried to take my mother home, the overwhelming sense of urgency about coming up with a plan that would meet my mother’s needs and somehow work with or for or around my father.

The doctors and social workers said assisted-living was the right scenario for her; that became the focus. The chief concern was about whether my father would resist—more important, whether he would write out the checks for my mother’s move or whether I would have to take legal action to make that happen. When he signaled that he would, grudgingly, move with my mother to an assisted-living apartment, we cheered; it got us over the hump, surmounted what we’d feared would be a disastrous hurdle.

“And so I moved her back in with my father,” I said to Melody. “The night before she moved in, he was bellowing at her on the phone about how he was going to have to live in this horrible place because ‘you got sick’ and because ‘your daughter made us move here.’ He was abusive and ugly, and I remember being in tears with a social worker and saying, ‘This is a terrible mistake, how could we be moving my mother back into captivity with this man?’ And she said, ‘Well this is what we were able to do for now, and it isn’t ideal, but it’s better, and we can do something else down the road if this really doesn’t work out; we can move her.’ But I knew this had been our best, our only shot.”

“I think it’s true that you did what it was possible for you to do at the time,” Melody said.

I think that might be true, but it feels only ambiguously comforting. Maybe I just hadn’t been up to the task. Maybe my decision-making had been flawed, my judgment faulty, Maybe I’d been deficient of imagination or ingenuity or courage. Maybe I just hadn’t seen things clearly.

It feels like a crucial failing. Among many failings.

“If you could have, you would have,” Melody says more than once as I confess my litany of sins.

The biggest failings:
I couldn’t save her from the marriage she rued. I couldn’t spare her the wifedom and mothering that cost her everything. I couldn’t give her back her career. I couldn’t spare her from the suburb she disliked or restore her to the city blocks she’d adored. I couldn’t save her from the mentally ill son or from the sick younger daughter. I couldn’t spare her the premature death of her brother or the mother who lived too long. I couldn’t spare her my own daughterly disdain for her shortcomings or my resentment at all the ways she failed me.

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Grief, Sprawling

Tuesday, April 7th, 2009

My grief for my mother sprawls in many directions. My smart, vibrant, warm, plucky mother spent three agonizing years stooped and gasping for breath over the handles of a walker, her body ravaged and withered by emphysema. It was terrible. I could try for 10 years and not come close to describing how heartbreaking it felt to watch her push through each day.

What was—and is—all the more unbearable is that her struggle was much, much worse than it had to be. Her marriage was always a bad bargain; it proved truly ruinous when she got sick. As the spouse of a woman suffering from both advanced emphysema and encroaching Alzheimer’s, my father was something like a perfect storm: selfish, inept, resentful, and increasingly impaired by depression and a paranoia-laced dementia. And thus the massive slow-motion train wreck I got in the habit of calling The Big Mess With Mom; see also Back Story. Train wreck and hostage drama: My mother enduring needless hardship and decline in thrall to a profoundly dysfunctional man determined only that she should continue getting dinner on the table at 5.

I failed to spare my mother this. I did try. And try, and try. It drained me; it cost me. It required skills I didn’t have. It revived old traumas and stirred old guilts. It plundered my time and ruined my sleep. It drew oceans of tears. It drove me to despair. But still I failed. I tried to save her and I couldn’t, and I am consumed with guilt: I should have tried harder. I should have done more.

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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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My Mother’s Last Saturday Night

Saturday, March 21st, 2009

I rue that my mother spent most of the last month of her life in in a woefully small and dispiriting room, a room so drafty–could this truly be the room allotted to a patient with respiratory disease?–that pillows were banked against frost on the inside of the window.

The room was, in truth, a dump: chaotic, slovenly, every surface choked with clutter. There was barely space to pull up a chair up alongside her oxygen tanks and special bed. The television was nearly buried under tubes and and pads; the closet blocked by a nebulizer stand. With her nightstand jammed in a corner away from the bed—at least until I commandeered one of the aides to help me shoehorn it back next to the bed–, even my mother’s blanketed form became a repository for miscellany: Extra sheets and clothing were heaped on her legs, a brush and magazine on her belly, a heavy blue telephone wedged against her side. The vases of flowers I brought disappeared under a heap of towels. The photos I gave her vanished into a drawer, or under the bed, along with the cheerful cards I left out so that my memory-impaired mother would know I had been there and would return.

We would have 9-12 months, the doctors had told us. We knew it was not a promise. Still, they were off by a good mile. When I came to know this for certain was on a bitterly cold evening in late January five days before my mother died. On what turned out to be my mother’s last Saturday night in the world, I spent six poignant hours with my mother in her appallingly disheveled room, her bed in blue-tinged and weary-looking fluorescent brightness, my chair in shadows, blankets tacked over drafty windows, CNN on the television, our voices rising and falling softly in intermittent conversation, aides coming and going, frost gathering on the pane and dripping onto the floor.

When I arrived in her doorway at about 4:30, my mother was sitting up in her bed. Cradled in her left hand was the little stuffed bear I’d brought to her in the hospital. Her head was tilted down slightly to look at it, and she was stroking its contemplative brown face with the fingers of her right hand.

She’d been glad to see me. “Well, if it isn’t my darling daughter!” she said, beaming an expansive smile toward me. She was in her usual white hospital gown with the small blue flowers; a blue knit warmup jacket I’d brought her was crumpled around her thin shoulders. She looked clean, and –did I imagine it?–there was a hint of color in her cheeks. Her white hair, in its pert new bob, looked soft and fetching. The TV was on, loud–CNN’s anchors segueing from a suicide bombing in Somalia to the remarkable tale of the American Airlines jet that had recently landed, improbably, on New York City’s Hudson River, its passengers clambering to safety in the most literal way on a wing and a prayer.

The indelibility of that night. The desultory but companionable quality of it. The heartening perk and wit of my mother, no matter the usual repetition of her loop-de-looping memory. Her entertaining stories, though none of them new, of her happy childhood years. My efforts to improve her disastrous room, sweeping towels and tubes into drawers, unearthing cards and photos, cramming pillows against the frosty windows. Aides bringing in dinner, meds, rags to mop the puddles of melting frost near the window; eventually, taking note of my mother’s worsening cough (“It really is cold in here,” a handsome young aide named Lucas comments) they wheel in a space heater. My fury about the egregious unsuitability of the room, though I hide it from my mother.

My mother’s mildly monotonous chime of reiterated questions about what I’d been up to making a surprising turn: She wanted to talk about my work, did I still like being self-employed, what had I been working on lately, was I still making a go of it ten years in. She expressed pride that I had struck out on my own (“You’re your own boss … you’re self-sufficient; that’s wonderful,” she’d remarked, as I basked in her interest and the sudden clarity of her mind). Then, more remarkably, her trenchant interest in the nuts and bolts of self-employment: did I have a sufficiently sturdy retirement plan? “I worry about you,” she said.

“Don’t worry, Mom,” I replied.

“I worry about you,” she repeated. “I wish I could help you. I would if I could.”

The surprise of that exchange … and then the heartrending crisis, the moment when she discovered she had no vision in her right eye—her one good eye! she said in a plantive and panic-edged voice. The summoning of aides, the late-night visit of a hospice nurse, the doses of ativan and dollop of morphine. The sitting by my mother’s bed as she grew drowsy, as I flipped channels, as she suggested maybe I could stay all night, as she told me in a playful but poignantly small voice that she didn’t want to leave.

And then the end of it: The sitting in the darkened lobby with Laura, the hospice nurse with the mien of someone who lived alone and cared too much, the empathic on-call angel who’d ventured out late on a bone-chilling January night to answer my tormented call about mother’s eye. Laura had waited for me in the lobby as I said goodnight to my mother. We sat in facing wingback chairs in murmured conversation before heading to our cars.

I was bone-tired and heart-heavy and deeply unsettled. My mother’s heartrending anxiety about the loss of her “one good eye” (which the hospice nurse ascertained had happened some time ago, probably a result of the bleeding disorder; it seemed my mother kept forgetting and rediscovering it). Her touching plaintiveness, tugging me to stay. And what of her unexpectedly lucid preoccupation with the state of my 401K? It seemed to have come out of nowhere.

“Well,” Laura answered in her hesitant, gentle way, “I think that maybe what your mother was really doing was expressing her need to know about whether you’ll be alright when she’s gone.”

I choked up, tears streaming, the truth of it unfurling within me. “It’s very common toward the very end in hospice patients,” Laura was adding. My heart lurched; everything in me went heavy and soft. Yet this was something I’d already known, I realized. “We’re not talking about 6-9 months, are we?” I finally croaked out.

“Oh, heavens no,” Laura said, her voice soft. She saw that I was shivering, and covered my cold hand with her warm one. My mother was profoundly, even impossibly frail, she said; frightfully tiny, almost nothing left of her, breaths so hard and wispy, so little fuel for a famished heart. “I was shocked by the feebleness of the woman I saw when I walked into your mother’s room.” Six to nine months–“I’m so sorry, Mia, but no.”

The truth of it. But … “But she was so cheerful,” I said to Laura. “She was so amazingly lucid.” Not just that. ” She was so upset about losing her eye–her one good eye, she kept saying: ‘What am I going to do without my eye?’ That’s what she said.” Her anxious, woeful laments about her eye had cut me to the quick; the loss of her vision, and her rue about it, somehow seemed the cruelest of all the hard, sad things that had unfolded in the past few years.

Her strangled breaths, her shredded lungs, her vanishing bones, the oxygen tether, the wayward shamblings of her bladder and bowels, the shrinking of her life to a circumference barely bigger than her bed–none of the trials and indignities that had befallen my mother seemed as painful, as cruel, as significant, as the failing of my mother’s vision.

My mother the voracious reader, the inveterate camera-clicker, the eager observer of the world beyond her door; my mother the lover of extravagant blooms and vivid hues and the endless variety of the human face—“no two alike!” she would marvel. My mother with her treasured morning newspaper, her CNN, her calming bedtime tea of Everybody Loves Raymond or reruns of Frasier; her heaps of photo albums and scrapbooks: the lovely silver-toned pictures from her vibrant early years, the fuzzy Kodacolor snaps that she culled into a bright and glossy record of all that came later.

“She still wants to see things,” I said again to Laura. “She wanted me to leave the door open. She’s so much better than she was in the hospital.”

Laura was quiet, her gaze level and kind and, I noticed, glistening in the corners.

“”She was so wistful and hopeful about her eye,” I reiterated. “She kept asking if it could be fixed.” Even as I rattled on, though, I knew. And it came to me then that some part of my mother, witting or not, quite possibly also knew. “What am I going to do without my good eye?” she had asked with such plaintiveness. “Will I get it back?” “We don’t know,” Laura had answered simply, with touching tenderness. “I hope so.”

My mother had been quiet for a moment. When she spoke, she sounded small and possibly scared. But what she uttered next was not another distressed lament about her eye. “Will you pray for me?” she’d asked.

A short time later, as I kissed her goodbye, as we exchanged “I love yous,” she’d asked again if I might stay. “I’ll be back tomorrow,” I reassured her. “Will you?” she’d asked, the question–edged with urgency, the hint of a plea—startling me. “I’m counting on you,” she said. The unfamiliar and disconcerting unease in her, something small, woebegone, little-girlish newly floating in this wrenlike white-haired wraith who was so heartbreakingly my mother. As I turned toward the door she called to me once more. “Can you leave the light on?” she had asked.

I knew. The heaviness of it. The deep ocean of it. The dead certainty of it. “I’m so very sorry, Mia,” Laura was saying again as we sat in a shadowed lobby on what proved to be the coldest night of the year. In the window over her shoulder I saw the glow of a large winter moon, nearly full, on the snowy parking lot. “I know this is very hard to hear,” Laura continued gently. “But I can’t imagine your mother lasting more than a month. Probably less.”

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My Mother’s Last Trip, IV

Friday, March 20th, 2009

We didn’t, of course, know how short her remaining time was to be. But it is hard to make peace with the fact that she was able to experience hospice’s happy float for a mere week before she died. Instead, she spent the first 21 of her last 29 and 1/3 days enrolled in a mildly taxing regimen of post-hospital rehab.

The very idea of rehab for my mother was preposterous. But she’d had the right sort and length of hospital stay to garner a primo Medicare bennie: If she went on to a rehab round, Medicare would cover every aspect of her care for 21 days, including the $250/night room charge she would otherwise pay out of pocket. We may as well use the all-expense-paid days, everyone counseled; such a deal! We’d also gain time to plan mom’s hospice care–the months of hospice we thought she’d have–along with a strategy for dealing with our impaired and obstructionist father.

As a result, my mother, who entered the care center on death’s door, spent the first three of her last four weeks exerting herself each day with Janet, a plus-sized physical therapist of kindly disposition whose daughter and my sister’s daughter had once appeared together in a community theatre production of The Wizard of Oz. With kindly Janet’s coaxing, my mother weakly flexed her emaciated legs each morning; she fluttered her arms up and down; she gamely buttoned up a sweater. By the end of the second week, she pulled herself–her grip tightening on Janet’s doughy arm, her legs buckling–to a standing position next to her bed.

Her wheezy exertions proved of no real therapeutic value. But in those weeks in the care center, my mother did rally to an extent that seemed startling. The improvement was not so much physical, although she did manage to pull off the ambulatory triumph her therapists needed to satisfy the suits at Medicare; my mother had walked five feet, Janet exultantly reported at the 21-day care conference. No matter that it was at a painfully shaky and shuffling gait, and was accomplished with the aid of a walker; no matter that it required her oxygen tank to be pushed to the highest possible liter flow, or necessitated several rest periods to quell her panting enough that she could continue.

What really changed, for a time, was her spirit. She perked up so much that the hospice team was called upon to reassure me that, yes, she was as gravely ill as before, the prognosis was the same, a late-inning rally wasn’t uncommon, the game plan and the dismal life expectancy had not changed. The perking up was almost jarring. She had a bit of appetite again. She took an interest in surveying her dinner tray; her interest in its contents was fleeting—“I know, ish kibbibble!” the young aides would tease her—but she could be persuaded to eat a few bites of sweet potato and yogurt, and she tucked into each evening’s ice cream treat with genuine glee.

Her customary “hello, lovey!” greetings were back, along with her gift for gab; no matter that she repeatedly uttered the same sentences and posed the same questions; an endless loop. She again took an interest in things, even if she remembered nothing. The inauguration of Obama was interesting, and always news to her constantly rebooting mind; ditto the stories her daughter shared, or the small dramas she observed in the care center hallway. “Leave the door open,” she insisted to aides with a coquettish air, “so I can see what’s going on.”

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