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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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Big Mess With Mom: The Story

Tuesday, March 24th, 2009

The day my mother was packed off from hospital to care center found me repeating The Story again and again. This had come to be the drill, whenever new health care providers or social workers appeared in the picture.

My mother’s health care history was not only a groaning database of doctor consults and hospitalizations, lung function tests and labwork, EKGs and CT scans, dexas and mini-mentals, pulmonary therapies tried and medications taking up two square feet on a countertop. It was also a train wreck, an obstacle course, a Rubik’s cube. It was a ruinous game of chutes and ladders tied to deep furrows of personality and habit and most of all to the tangled skein of her marriage. It was no exaggeration to say that her well-being had become hostage to her husband’s ineptitude, selfishness, and slipping mental gears–and his fury at both his burdensome wife and her meddlesome daughter.

Over and over, I tried to make sure people entrusted with any part of my mother’s care grasped the intricate and messy complexities of her life: her limitations, his hinderings; her profound vulnerability, his minefields and roadblocks. It exhausted me to keep doing it. But without either a power of attorney or guardianship for my mother, I was consistently at a disadvantage. My attempts to intervene on my mother’s behalf often came a cropper because I couldn’t whip out a duly executed power of attorney document. The ace in the hole I did have–my mother’s health care directive, naming me and my sister as prevailing decision makers in the event of my mother’s impairment–seemed to be given short shrift.

That my mother’s memory and judgment were impaired there was little doubt; every doctor who had met my mother said they would testify to that effect if I went for guardianship. Yet my mother, unaware of her misfiring synapses, continued to be treated as though she was capable of making her own decisions, with my impaired father—who worked hard, and often successfully, to fool people into seeing him as wholly functional—riding shotgun.

I wanted–needed–the doctors to get it; if I was to gain any traction in my efforts to ensure my mother’s well-being, it meant bucking not only my mother’s confusion but my father’s overt resistance. And so I kept telling The Story, the action-packed tale I referred to privately as Big Mess With Mom (the title I’d scrawled on a file cabinet bulging with mom-related folders). The Story: Of her losing battle with emphysema (with a dementia subplot) and my flailing (and often failing) attempts to slay all the dragons of hardship and misery (mostly my father’s doing) that were in the path of this increasingly frail and vulnerable woman.

With the hospital social workers, I took a deep breath. Here goes, I thought. Another attempt to shorten into a pithy and useful tale the excruciatingly steep and rocky journey of the past three years.

The Cliff Notes version would look something like this:

My father’s bad behavior, my mother’s dodgy mind, pointless pulmonary rehab, the downward spiral through missed medications and rotted food and stairway falls, the pitched battles with my father over the air conditioning he wouldn’t turn on and the accessible shower gizmo he kept taking off.

 

The Husband Run Amok: The Leaving His Wife in a Hot Car debacles, the Mismanaging The Oxygen catastrophes, the Harassing of the Home Health Aides saga, the Trying to Keep the Daughters Away chapters, the Writing Bizarre Notes to the Daughter kerfuffles, the Cancelling His Wife’s Doctor’s Appointment episodes.

 
The doctors who didn’t get it or didn’t want to get involved, the lawyers who pressed us to get guardianship but warned of balky judges, the county social workers that needed things to get worse, the urine-soaked clothing, the eventual horrifying crisis, finally the intervention from the county, the transition into rehab, the triumph of getting my mother into assisted living … and the despair that my father went with her there.

 
And up to the present: Her decline, his hostility, her cheerful quasi-lucidity, his brooding mental tangles, the reality that health care decisions would now have to happen without them, the good news that mom has a living will … and that I am prepared to do everything I possibly can to help my mother in this hardest hour of her life.

That day, circumstances required me to tell The Story (or chunks of it) to a social worker, chaplain, and hospice planning team at the hospital; and to an admissions director, social worker, nurse manager, and night nurse at the care center. My parents’ impairments had become more profound, and more obvious; still, many of those on the scene in the last few months of my mother’s life continued to put them in the driver’s seat. As evidence, I need only note that when my critically ill mother was first admitted to the hospital on the day after Christmas, the staff had initially heeded my father’s instructions that I not be notified at all.

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What She Was, II

Monday, March 9th, 2009

  She died in a flimsy blue hospital gown, her shoulders bare, the gown’s laces having been left loose so as not to strangle her. She had no use for fashion in the end, was in fact entirely devoid of vanity. Not that she was ever a fashionista, she of the knit JCPenney pants and poly blouses and faded cardigans. She threw on any old thing around the house with a comic carelessness, mismatching red plaid slacks of a 1950s vintage with untucked Target blouses, fraying headscarves unfashionable since Grace Kelly decamped to Monaco in the late 1950s, ragamuffin vests her daughter had worn in the disco years. But out in the world, my mother had had definite outfits. There was in fact a certain kitschy nattiness to her; the pert slack-and-blazer ensembles topped off with a geometric Monet scarf or a string of large beads, with a windmill-shaped pin or a seasonally apt cornucopia or pine tree.

She started out stylish. You can see it in photos. The university coed and budding businesswoman in chic shirtwaists and heels, in flattering pedal-pushers and strappy sandals, in well-cut suits and lovely dinner dresses. All of the chicness dwindling out of her later; no need for stylishness in the bad marriage, in the suburban split level, in the numbing routines of stove and washing machine, in the strife and chaos of the husband’s tyrannical fathering and the seriously ill children and her own valiant attempts at coping with it all. Her fashion know-how atrophying along with so much else. In my early girlhood, before the rare evenings out vanished entirely, she could still summon the knack for dolling herself up. She hummed going about the elaborate rituals, the hairdos and girdles, stockings and makeup. She had new skirts sometimes, a new pair of heels. She could still be elegant in a picture, and sometimes was.

But in the bigger picture of her life there was the futility of troubling to be chic. It shriveled her sense of style. But it did not take her yen for it, or all vestiges of her vanity. I have said she was careless, but in truth she was not, or at least not always. For Leaving the House—for the movies or the mall, and for holidays at her daughter’s house or the welcome theater outings of the later years—she mixed and matched her pant ensembles with consideration. She had her hair done. All her life, in fact, she managed to have more or less regular perms and tasteful dye jobs and to pick up the occasional Dayton’s sale-rack blazer, using socked-away scraps of grocery money and later her pittances as a part-time teacher’s aide and insurance secretary–those desultory jobs that were such a comedown for a once trailblazing businesswoman. Even well into her seventies, she kept a surprising number of shoes lined up in her closet, a row of fetching size-7 heels lingering, long after they’d last foxtrotted, next to her sturdy everyday Rockports. She also kept a drawer stuffed with rouges and powders and the expensive creams she tried out—confessing it to her daughter, with uncharacteristic abashedness; the wistful hope and splurge of it—when the wrinkles came.

  She dressed only to please herself, to be sure, having taken in few fashion cues, or clues, in several decades. Her ideas of style seemed to harken back to 1960, to a time when sleek plaid slacks were just the thing for getting together for bridge, mixing a cocktail, trying the twist. But you could see the effort she made, mixing and matching those slack-and-jacket ensembles into her eighties. The gulf between her and Naomi Campbell was clearly vast; she seemed from a different millenium and galaxy than the women of, say, Project Runway. But she was always tasteful and on her own terms, coordinated; black or navy slacks on the bottom, white blouse or turtleneck on top, rarely chancing a pattern bolder than a calico, sticking mostly to safe tweeds and burgundies (and the odd red, in which she looked radiant). She always took the trouble to accessorize. If the overall effect–especially on her tiny and increasingly stooped body–tended to kitsch, it was also true that she was occasionally darling.

The outfits were just part of it. She never left the house without color on her lips and a splash of perfume. She’d pluck one of a bevy of bottles from her dresser, spritzing her neck and wrists what she cheerfully called “a good stink,” no matter that it was from the drugstore or bore the name of a passe celebrity or had been faithfully dusted for far too long. Surprisingly, she always smelled good. The perfumes always light and vaguely garden-y, mingling pleasantly with the faint scents of lipstick and Prell shampoo. You did catch the whiff of cigarettes; there was no disguising it. But on the whole it seemed a minor distraction, just part of the aroma of her, a lingering of the lacy smoke–swirls that were as much a part of her as the glasses she wore and her sensible shoes. The toxicity of those swirls was of course odorless, or the odiousness hidden. It was inside, of course, inside her–blackening the pink of her lungs, hollowing out the tendriled air sacs, shredding the delicate tissues, slowly taking away my mother’s every last breath.

Mom in her flimsy blue gown, the whoosh of her oxygen tanks now silent. Her head has lolled to one side. Her eyes closed. Her glasses left on the nightstand. Her mouth is open, the O of her last ravenous inhalation. Pink fuzzy socks on her feet. The whiteness of her hair. Where the gown has slipped off her bony shoulders, a glimpse of the small pale rise of her right breast, plain and weary looking. Her bureau drawers here all but empty. A few socks, a comb, some denture cream, a chapstick. Her closet here just a sea of empty hangers. A handful of cardigans and hoodies; a single pair of grey sweatpants, provenance unknown, with a “Minnesota Wild” logo on the waist. A pair of never-worn pink terrycloth slippers.

No natty outfits here these past few weeks, no lipstick, no eau de anything. Just the scent of the fading bouquet next to the TV and of her body soldiering weakly on. Even so, even with all ornament stripped away, even in the flimsy gown, there was the remarkable mom-ness of her, so clear and definite and striking. Who and what she was, needed no plaid pants and cardigans for, and is no more.

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My Mother

Tuesday, March 3rd, 2009

My mother. She was not part of the daily weave of my life. She was in many ways deeply significant to me. Yet she was also both real and unreal to me, in some respects a sort of phantom presence in my life. Everything about my relationship with my mother is complicated—a vast unsettled sea of emotions and memories inseparable from the wreckage and ruin of my colossally troubled family. And so the grief is also unfathomably complicated. And vast. Sometimes in roiling waves that find me sobbing in the middle of an art show, as I did last weekend … one minute turning in an ordinary interested way, wine glass in hand, toward a bird print in a crowded gallery, and the next moment overcome with grief for my mother …

My father. He is confused and irrational. He is surely lost and hurting. The lightness and warmth in my mother’s marrow made her late-life confusion of the cheerfully addled variety. But my father, his childhood abuse and abandonment early gone to gangrene, has become in dementia only a more distorted version of the self-pitying intellectual bully boy has always been. Most of him these days is delusional, spiteful, and even mean. His head is filled with bizarre imaginings about plots I am cooking up against him. The truth is that notwithstanding all that was admirable and interesting about his philosophy-reading, foreign-film loving, war-protesting self, he’s always been fundamentally a jerk. The most important truths are that he visited massive damage on his children, and that he all but ruined my mother’s life. I may as well toss in the postscript that he has spent much of the last year laying plans for a shirttail cousin, crazy and recently living in a car in Texas, to come and cook for him as soon as my mother died.

Most of all, my father and all of the problems he brings–the calls from alarmed doctors and social workers and, on the very morning of my mother’s funeral, the crazy shirttail cousin; this man’s ongoing attempts to pull me into the swirl of nastiness he feeds on; all the ways in which his needs are deposited, unwanted on my doorstep–this tragically wrecked and destructive man who happens to be my father continues to intrude far too much into my grieving for my mother. Which has made things infinitely messier this past month, and more difficult. The fact of of having so much anger tangled up in so much grief. The fact of losing the parent who loved me, and whom I loved, and being stuck with the one who got, and still gets, in the way.

My mother. She was, I think, not amazing, although she could have been, especially had she not been taken hostage by my father. But I do think she was remarkable. She was smart and had the best heart of anyone I’ve known. She was resilient and, despite every reason not to be, hopeful. She devoured good books, gladdened at red zinnias and pink cosmos, deplored injustice of every kind, and sighed and ached for the world’s sad and unlucky people, its hungry children, the shivering souls in ragged coats sleeping under bridges. She played the piano with spirit and would break into a lively foxtrot or rhumba when snappy music came on the radio. She unfailingly turned toward life and people with interest and warmth. Even in the worst throes of family shipwreck, her impulses were generous ones. She lit up a room. That’s a lot for a life. It’s also what she had to give me, and did. Her legacy. I was able to tell her that, for which I’m grateful.

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