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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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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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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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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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