April, 2009

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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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Spring Without Her

Friday, April 3rd, 2009

The burgeoning of spring opens new wounds of grief.

My mother’s heart shuddered to stillness in the dead of winter, the trees stark and leafless. It was one of the coldest nights in years. Yet there was also a mist in the air, heavy and warm and strange, as my mother’s body was wheeled out of the care center into a brightly lit driveway.

It was around 3 in the morning. The gurney bearing the still soft body of my mother was being pushed toward a waiting hearse by two young men from the mortuary, one of them with an enormous belly; their bleary looks and the rumpled khaki pants below their blue blazers suggested they had been yanked from sleep to answer yet another call on the death beat.

After we had left my mother’s room ahead of the mortuary men, my sister had gone to her car and A. had continued on toward ours, but I felt compelled to stop in my tracks as the two young men wheeled my mother’s body slowly by. To bear witness. The almost imperceptible roundedness in the black body bag that was both my mother and not my mother. The mortal remains of her. The spent shell of her; its heat and light gone. The vessel in which she had lived for nearly 85 years, its wrecked lungs finally done.


The dead of winter. The dead of night. The frozen stillness of a January grief. My tears thickening in the peculiarly warm mist on that cold and starless night when my mother’s spirit departed the world and left this ruined shell to be buried in her memory. The world seemed too iced in to care.

The dirty snow in the parking lot. Not a leaf to flutter at my mother’s passing, not a flower to droop in sadness, not a bird to trill a mourning note.

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Spring Without Her II

Friday, April 3rd, 2009

The room my mother died in seemed to be waiting for spring. It was a large, westerly-facing room with a windowed balcony onto a rolling wetland. We’d seen elegant Great Blue Herons wading in the pond during my mother’s previous care center visit, at summer’s peak. The pond was frozen now, drifted over with snow, ringed by skeletal maples and willows and the brown husks of dormant wildflowers.

From my mother’s bed, you could gaze directly out over the wetland. The vista had the spare, weary, beauty of winter; grey and white; architectural. Spring would be glorious. But even now, in winter’s diffused light, the room was still something to behold: spacious and sun-dappled, its freshly carpeted tidiness thrilling after the slovenliness of my mother’s first room. The large closet! The sparkling bathroom! The slender table holding a large vase of silken poppies I’d brought it, so real-looking their leaves were fraying from the inquisitive pinches of aides. A cd player on the nightstand, left by hospice’s music therapy team, cued to a new age piano cd called “Healing.” The pleasing hush of the choice end-of-hallway location; the soft whoosh of my mother’s oxygen concentrator, the gentle bubbling of the humidifier.

Procuring this serene and lovely room for my mother was a triumph. After hounding the staff for three weeks, it took a burst of full-throttle fury for me to at last spring her from the appalling shambles of a room on the ground floor. The snapping point had been that long Saturday evening when the world seemed to pitch sideways: That companionable and fervid night in the cramped room where clutter reigned and blankets were banked against the frost on the window; the night my mother grieved her vanishing vision and fretted about my 401K; the night I wept in a wing chair in a dimly lit lobby as the hospice nurse told me my mother was not going to take anywhere near 9 months to die.

By Monday—having used the word disgraceful, having emphasized tomorrow, having been ready to snap photos for a complaint to the state—I got confirmation from the social worker: “Your mother is being moved this afternoon.” A primo room, the care center’s jewel, I learned. Later, another social worker told me there’d been an internecine dispute about it from the moment the previous resident had died: “I’d promised the room to someone else, someone ahead of your mother on the waiting list,” she said. “Your mother’s needs were more urgent, but … Well, your mother had come off Medicare first, so that did give her an edge.” She paused. “And of course there were clearly some issues with your mother’s previous room.”

Blissfully unaware of these negotiations, or of how I had all but rioted on her behalf, on Monday evening my frail and bewildered mother was finally rolled to her new room in a wheelchair. She took the brief journey—a short hallway, an elevator, a long hallway—with her customary interest, smiling at aides, perking up at sight of the piano in the second-floor commons. The exertions of moving and resettling exhausted her, though, draining what minute dribs of stamina she had.

But there she was, at last, my mother, tucked like a pea-sized queen into fresh linens in a room so agreeable it bordered on the fabulous. She lay propped on her mountain of pillows just two feet from the large window with its wetland vista that all but promised a magnificent spring. How beautiful it will be! I began to say to my mother, but stopped; mentioning spring wasn’t smart; it would only have triggered one of my mother’s frequent bouts of anxiety about where she was, and why, and when she might go home.

And of course, I knew that my mother was not going to make it to spring. I also knew, as I looked at my tiny broken wren of a mother, her shoulders heaving, her breaths growing both more jagged and shallow, that I couldn’t possibly wish that for her, and didn’t.

She went faster than I had imagined or was ready for. She had just three days in that halcyon room, not even enough time to sample all the soothing hospice ministrations queued up to ease her dying: the massages, the music therapy, the pastoral visits, the little juice glasses of wine that would be catnip for her and might even, the doctors said, be good for her laboring lungs.

She didn’t see spring stir in the wetland, didn’t make it to February, didn’t even last a week. But I do know that she found in those serene surroundings whatever it was she needed for letting go, for the release of her spirit. Initially, she found the large, quiet room perplexing—not a hospital room, not an apartment; what then?

But the day she died, as I knelt by her bedside massaging her forehead, one of the few sentences she uttered from her dozy drifting consciousness was about the pleasure of being in that room. “How do you like all this?” she said with a half wave of her hand. Her eyes were closed and there was a calm smile on her face. She nodded slightly. Then she patted my hand. “So quiet,” she murmured. “Peaceful.”

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Spring Without Her III

Friday, April 3rd, 2009

Now spring unfurls, and my awareness of my mother’s absence from the living blooming world is acute. The tulips pushing valiantly through the mulch, the budding out of ash trees and lilacs and weigela, the boy robins strutting their orange blaze, the young cardinals flashing crimson in the arborvitae. That the world is coming alive without my mother anywhere in it feels deeply disorienting and impossibly sad.

I think of the rambunctious, kidney-shaped patch of garden my mother tended; her pride and joy over decades of springs and summers. The few brown petals and yellowed bits of stem that now remain of her zigzagged rows of zinnias and black-eyed susans; the weeds and rabbits that have taken over where her feathery cosmos and festive nasturtiums grew.

My petite mother in her ancient floral pedal pushers and a sleeveless rose-colored blouse, kneeling in the dirt of her garden on a sunny spring afternoon, cursing the rabbits that had nibbled her sweet william to nubs. Her hands pressing marigolds into the soil, clasped around the tiny green seedlings as though in prayer.

My mother perched on the backstep before dinner with her juice glass of chablis and a book on her lap, her cigarette smoke drifting toward the three o’clocks and bleeding hearts.

Here in the city where I live, the lilacs along my fence are budding. Another pang, a toll of the bell, a thought of my mother, a picture. The purple lilac bushes she loved; she’d reach on tiptoes to snip off giant bunches of blooms to place in a gilded floral porcelain vase that had been her grandmother’s. The large red rosebushes she loved, the spreading crabapple trees she loved, the trumpets of nicotinia flowers she loved. Her affection for fluffy bachelor buttons and oddball snapdragons. The petunia and geranium plants her fingers pushed every year into large clay planters, plunking in cheerful windspinners and even a gnome on a stick for good measure. The delight she took from garden-fresh tomatoes. The vases of daisies always on her table.

My mother is dead. I realize it over and over again. When will I become inured to the shock of it? When will I just know it? When will it feel normal that I am here but that my mother is nowhere in the world, that the trees have come from dormancy to bud again but that my mother has simply ceased to exist?

Yet I know that’s not the end of it. Faith, broadly speaking; transcendent knowledge. The life of the spirit, chi, the new physics, old poetry, Melody’s universal sea of energy. My mother has departed her body, her hands won’t press cosmos into the earth. But perhaps in some manner or form she is still beholding robins and taking pleasure in lilacs. Is that possible? I don’t know where she is. The indestructible energy of her, the electromagnetic essence of her, the enduring spirit of her. Yes. But all of a piece? Free floating? Reincarnated?

Since her death, she has come to me clearly just once, the night after she died. It was near midnight; I was returning from a dinner out with friends, where I’d recounted the stories of my mother’s dying within the warm cocoon of attentive friendship and mellow wine and ravioli tossed with butternut squash. I hadn’t slept in 24 hours, although my midnight trip to claim my mother’s dead body seemed to have happened a very long time ago.

In the yellow streetlight glow along our alley, A. was nosing the car toward the door of our small garage. That’s when it happened. It was sudden and startling. I felt and sensed my mother’s presence just behind my left shoulder, almost as though she were leaning forward from the middle of the backseat. It was an intense physical presence that vibrated with warmth; it felt so substantial and real and profound that every nerve in me quivered.

How to really capture what I felt without sliding into hackneyed phrases or pure pablum, without evoking the slushy bathos of a movie on the Hallmark channel? I’m not sure it’s possible. The uncanny feeling of a radiating warmth, the sense of space highly charged and fully occupied, though nothing material could be seen there. The overpowering sense of my mother, of her essence; of a wavelength and an embrace. The love I felt. The absolutely certain understanding that she had arrived in some new form or place, been transmuted, was healed and in an essential way whole. The sense that she saw things whole as well, knew the truth of things. A sense of peace, but the vibe was not static; it felt somehow generative, creative.

It wasn’t Jesus I saw that night, of that I’m certain. I wasn’t filled with the holy spirit, wasn’t born again, won’t be speaking in tongues or working my grandmother’s rosary beads. Maybe, as my endlessly astonishing Lutheran seminarian grief counselor later suggested, my emotional and physical exhaustion had left my conscious mind uncharacteristically unguarded, open to the blurry, the extrasensory, even the mystical. The place at sleep’s edge can be like that, she said; can be a gateway to realms that lie beyond the ken of the everyday rational mind.

What I know for sure is that I did have the extraordinary feeling of being in the presence of my mother, or her essence, some 12 hours after she was released from her suffering body. Figment of my imagination? I can’t be entirely certain, of course—the freshness of my mother’s death, after all; my extreme fatigue, the warmth of the dinner with friends, the buzz of the wine. But the warmth and weight of my mother’s presence seemed palpable. “My mother’s here,” I said to A. in a strangled whisper. “Oh, do you feel her with you?” A. said. “No,” I whispered, “I mean she’s really here. Right here.”

She departed more gradually than she had come, staying with me into the house, finally ebbing away as I hung up my coat and walked toward the kitchen. But the warmth of her visit is with me still. It imparted a sense of peace that, again, is difficult to describe short of hackneyed sputterings. I will only say that my sense of connection with my mother was deepened by the experience, adding only that it led to me believe that my mother will continue to be present in my life, perhaps in powerful—and empowering—ways. I hope this is true. I don’t pretend to understand all of it yet. If this sounds hackneyed, so be it. It’s what happened. Maybe in time I can find a richer way of writing about it.

There’s a coda to this story of spring and my mother. Yesterday, as A. and I headed out for a walk, a bit of white caught my eye amid the Rosy Glow barberries and Wilton junipers and Stella D’Oro lillies I’d planted on a slope alongside the front steps. Litter, I thought; I reached to pluck it from beneath the greening plants. But it wasn’t litter. It was, in slightly weathered form, the small folded program from my mother’s funeral, with its poems of hope and renewal. I staggered, flabbergasted. Neither A. nor I could imagine how it had come to be there. Presumably a copy had flown out of a pocket or purse as we returned from my mother’s burial on February 2, and had since lain there under the snow. That’s the only plausible theory.

But of course plausibility is far from the point. This sign. My mother had come to me again, left a sign for me amid the budding and greening of spring in this frontyard garden of my own making. She’d chosen an apt calling card, the program with the poem I’d chosen for its lyrical promise that my mother would be more easily found after death in blooming flowers than in a grave.

Again I fear descending into Hallmark schmaltz; so decidedly not my style. This is not a story of grief wrapped up with a bow or an Oprah-ready parable of grief and redemption. It is not a tale of how I saw the Virgin Mary on the head of a tulip or my mother winking Kumbaya in morse code from the eyes of a chickadee.

But the inexplicability of it. Not just any errant scrap of paper, but the card from my mother’s funeral. Landing where it did. What are the odds? The thrilling mystery of it, the heartening joy of it. I do savor it. I carry the knowledge of it—the day my mother blew in to the yard—like an amulet, something to wield against the acuteness of my grief as the world bursts into spring for the first time in my lifetime without my mother in the world . . . or not as the person she was, the bright slangy brimming mother I loved and felt loved by, the avid gardener with a juice glass of wine and a good book and dirt under her fingernails.

My mother died barely 8 weeks ago. Tonight found me at a gathering where no one thought once to mention my mother or even to ask me how I was doing. How is that possible, I thought? The sadness I felt. My mother so alive to me still but so quickly vanished from the everyday world.

My first spring without her. She left me signs. I look for more. I move on as best I can.

———-
The lovely poem, by Mary Elizabeth Frye (1932), that I printed on my mother’s funeral card.

Do Not Stand at My Grave and Weep
Do not stand at my grave and weep,
I am not there, I do not sleep.
I am in a thousand winds that blow,
I am the softly falling snow.
I am the gentle showers of rain,
I am the fields of ripening grain.
I am in the morning hush,
I am in the graceful rush
Of beautiful birds in circling flight,
I am the starshine of the night.
I am in the flowers that bloom,
I am in a quiet room.
I am in the birds that sing,
I am in each lovely thing.
Do not stand at my grave and cry,
I am not there. I do not die.

Hear it: A beautiful musical version of this poem is available
as a free download from Irish folksinger Shaz Oye.

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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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