Categories: Struggling To Help Mom, Aging Parents, Illness, Mothers and Daughters
History, Tossed and Turned I
History, Tossed and Turned II
History, Tossed and Turned III
History, Tossed and Turned I
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 Lillian, 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. Rotten food gathered in the ‘frig. My mother 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 a unending chaparral of issues, of pressing consequence to my mother’s health, that sprawled inconveniently beyond Dr. U.’s crisp examining room.
History, Tossed and Turned II
My mother was going downhill on a fast sled, but her buttoned-down Scandinavian doctor stuck to the minutiae of her charts. Pointlessly, Dr. U. would quiz my clueless mother about whether she was taking her medication, the documented dementia diagnosis apparently of no consequence.
“Oh, that stuff, sure,” my tiny mother replied on a recent visit. She waved her hand airily from the side chair alongside Dr. U. Sick, stooped, tethered to oxygen, she’d still taken the trouble to twist at the neck of her white turtleneck a jaunty red-and-blue scarf with a nautical motif. Her navy slacks sagged on her wasting frame; I knew she had secured them with a homemade rope belt.
“Mom, I know you think you’re taking your medication, but the pills aren’t being used,” I said gently, as my hitherto silent father, slouched in a corner chair, sighed with a heavy snorting sound that suggested disdain. “That’s not for you to know,” he barked in a loud and antagonistic tone. Then, more confusedly: “You heard her–she does all that she needs to do.” He’d seen her take her pills? the doctor asked him. “She takes them every day,” he said. “I stand right there and watch her.” The doctor nodded; made a note on the chart.
I’d counted the pills, I reminded Dr. U.; she herself had suggested I do so. Day after day, there were the heaps of Spirea and Advair in their sealed foil, the never-opened Fosamax, the unused Albuterol nebulizer packs. Inexplicably—and paradoxically—-the only pill my mother somehow remembered to take from time to time was Aricept, the drug that was supposed to boost her memory.
Dr. U. let me say little before holding up her hand like a referee. She ignored my father; her steely hazel eyes seemed actually to be glaring at me. “Why aren’t you doing more?” she asked me in a challenging tone. I was incredulous. I looked from her to my emphysemic mother, with her confused but cheerful face, and then to my lanky, hulking father, whose face was a black cloud but for vacant eyes. I looked back at Dr. U. I had been trying for months to get her to understand what it was like.
Why wasn’t I doing more? “I don’t know what more I can do,” I said to her, tamping down my frustration. All my trips to the house, my fancy pill boxes and schedules and giant reminder notes, bags of groceries. My elaborate meal interventions: Having seen my groceries quickly forgotten, left to molder in the refrigerator, and having witnessed my mother so confused about meal preparation that she could only dump a can of spaghettios into a salad bowl, I had taken to affixing post-its to china to map out meals down to the nuts-and-bolts (“chicken goes here; breasts are on top shelf of the ‘frig; take out of plastic; heat in 350 oven for five minutes”).
Why wasn’t I doing more? Dr. U. had asked. Why wasn’t she doing more to advise and support my exhausting efforts to help my flailing mother? My mother was, after all, her patient. Didn’t this highly recommended doctor have a responsibility, particularly with a dementia-addled patient in the grasp of advanced lung disease, to address all that impeded her health? What accounted for Dr. U.’s grudging and peremptory manner, her obstinate refusal to look beyond med lists to the full welter of issues that were making my mother sicker by the day?
I thought there must be some tormenting intricacies of her own history that explained Dr. U.’s disproportionate focus on how I might have failed my mother. Did my dogged efforts to help my mother, or the family fractiousness it occasioned, stir traumas in Dr. U.’s own past?
In fairness, it could be that Dr. U. found herself called upon to cope with a complex situation that was beyond her ken. Perhaps she found the tangle of dysfunction and impairment between patient and husband too thorny and intractable for her particular set of skills. Perhaps she grew prickly because my mother’s teeming needs highlighted the limitations of her training or temperament. Or—maybe this doctor had taken an intense disliking to me. Maybe she had her own problems—a shitty spouse? A reproachful daughter?
Maybe she was simply overwhelmed.
Whatever was going on, it was hard to fathom how this doctor, clearly not an idiot, could have failed to grasp all that was really going on. In truth, no matter what was going on in her own life or psyche, I could not forgive what I saw as her consistent abdication of her doctorly responsibility to my mother.
All her many visits with my smiling, instantly forgetting, obviously impaired mother. The many scans and tests showing the worsening ravage in her lungs, the mini-mentals documenting the march of dementia. All of my well-documented reports from the front. The scowling husband formulating half-baked sentences obviously aimed at telling the doctor whatever she seemed to want to hear.
Dr. U. had admitted to being fooled by my father for months, or so her social worker had told me. He worked at it, to be sure. “That’s no problem at all,” he said in an agreeable tone when Dr. U. stressed the need for an electric stove to replace the gas model dangerously incompatible with my mother’s oxygen. But even before reaching the elevator outside Dr. U.’s office, my father had snarled at me when I offered him the name of an appliance firm. “I have no intention of changing the stove,” he said, giving such an emphatic jerk to my mother’s oxygen cord that it twisted the wheels of her walker. “I don’t take orders from that doctor,” he went on, as I steadied my mother. “And this is none of your business.”
The stove episode, it must be said, did prompt an extraordinary burst of interventionism from Dr. U. after I alerted her social worker to my father’s recalcitrancy. I was often compelled to phone the social worker to highlight discrepancies between what went on in her office and the troubling realities of my mother’s life.
“Changing the stove is not optional,” Dr. U. lectured my father on the next visit. The only other time I could remember her being similarly confrontational was on our first visit to her office, when my father had nonchalantly allowed that yes, sure, he still smoked cigarettes. “You’re still smoking,” she repeated, staring at him. “Smoking. Inside the house with your wife.” Yes, he repeated. “You have to stop. Now,” she said. “Your wife has serious lung disease. Do you understand? Smoke will destroy what little is left of her lungs. And she is on oxygen, which is flammable. You absolutely cannot smoke around her. Ever.”
“I see,” said my father. “That’s no problem.”
Perhaps her threshold for action required imminently combustible emergency; in any case, in the matter of the stove, Dr. U. rose to the challenge with almost comical bluntness. “Here’s what will happen,” she said. “Your wife will turn on the gas stove. Her oxygen will catch fire and her face will blow off. That is a fact. You have to replace the gas stove. Immediately.”
Dr. U. had, in truth, stepped up in one other significant instance, when my mother herself hesitantly inquired of the doctor if she might “talk to my husband and tell him that I’m too sick to travel.” This was during my mother’s very first visit with the doctor. My father had ostentatiously left the room during an ob-gyn exam. I had stayed with my mom. Near the end of this exam, the doctor had asked my mother “if there is anything else on your mind today.”
“He wants us to go to Arizona in the RV,” my mother had blurted out in a moment of crystalline lucidity. “He doesn’t want to hear that I just can’t do it.” There was silence for a moment; Dr. U., who had been pulling off exam gloves, was absolutely still. “But I just don’t think I can,” my mother added. She seemed embarrassed. Sitting next to my tiny mother in her white turtleneck and nubby blue blazer—aware of the tulip brooch she’d pinned onto her lapel, the oxygen tubes trailing from her lipsticked face—my heart wrenched.
I also felt thrilled that she had mustered up the clarity and candor to broach the RV issue with the doctor. “When can she travel?” had been my father’s first question to the physicians at my mother’s hospital bedside weeks before. Their startled and disapproving responses had not dissuaded him from needling my mother, frail though she was, to help him pack up the Winnebago.
My mother looked up at the doctor. “I just don’t think I can,” she repeated. “Maybe if you tell him … ?”
And so Dr. U. had, after a pause and then a brisk nod. She’d strided up to my father in the lobby to say, with her officious bluntness, “Your wife is very ill. You do need to accept that your traveling days are over.”
My father stared at the floor as the doctor spoke. His response was predictable, the two-word reply, subdued and terse, that had come to be his stock rejoinder in exchanges he found confusing or complex.
“I see,” he said. My mother stood a few feet away, hunched over her walker. I was at her side, her portable Helios oxygen canister—the state-of-the-art model I’d wrangled to get for her—clutched in my hands.
History, Tossed and Turned I
History, Tossed and Turned II
History, Tossed and Turned III
History, Tossed and Turned III
Dr. U. had confronted my father over his smoking and the gas stove, and she had delivered the message that he had to give up the notion that my seriously ill mother could take off with him in the Winnebago. But those had been Dr. U.’s only truly helpful moments. She’d otherwise turned a deaf eye to all the circumstances that weighed so heavily on the well-being of her patient—and to all the experiences and realities that kept me awake at night, tossing and turning and sometimes weeping with frustration.
Many of my most vexing wrestles were in trying to maintain even minimal home-health services—at least some check, I thought, against misery or catastrophe. Night after night, I fielded anxious and confused phone calls about the aides from my mom, with my father yelling in the background about “all these home health bills; make those daughters of yours pay them.”
Day after day, I answered frustrated calls from the home health agency whose aides I’d installed in my parents’ house through bits of hounding and chicanery. I pleaded with the aides to hang in there even amid the threatening notes my father had begun sending them. Recently he had sent one of his bizarre missives directly to me: A sort of hostile manifesto about “liberty and self-destiny,” referencing both Ralph Waldo Emerson and Mickey Mouse, scrawled on a small yellow memo sheet with the name of an Arizona RV park on the top.
“I don’t have any idea what you’re talking about,” he would say in his most well-modulated voice when I tried to fill the doctor in on the latest of his egregious behaviors and their implications for my mother’s well-being. Dr. U. nodded and made a note without comment; again, I struggled to contain my frustration. My father’s dementia was hard to get a handle on; it was quite possible, I realized, that he did not in fact remember the altercations with the home health aides.
But what of this doctor’s lack of interest in details with profound implications for my mother’s well-being? Should I get to work on changing doctors?
It had taken all my conniving to get my mother away from her original physician, the internist mom had nicknamed Breezy Carol who had misdiagnosed her emphysema. Dr. U. had seemed ideal: a specialist in integrated care of elderly patients, routinely listed among the city’s best doctors, her patient rosters bulging. She’d been highly recommended by a friend whose elderly mom had benefited from her care. Possibly, as I now suspected, Dr. U. was indeed a superb physician for patients of relatively orderly progression through the creaks and perils and diseases of old age.
Once again, I aimed for a thoughtful, eminently reasonable demeanor whose sheer credibility would carry the day. Which stories to tell? There was the recent Altercation Over the Microwave Dish, which underscored how difficult my father had made it even to visit my mother. A few days ago, I explained as calmly as possible to Dr. U., my father had met me at the front door when I arrived at the house. He stood in the doorway, blocking my way. I had been carrying a microwave-safe plastic dish to replace the metal one I had been alarmed to see her reach for the the previous day. “We don’t need your dishes,” he had announced, pushing the dish into my stomach so hard that I nearly fell off the front steps.
There was also the telling incident in the parking lot of the medical building where my mother was to have a doctor-ordered CT scan. Arriving early to meet my mother in the parking lot, I was astonished when my father zoomed into the lot at a fast clip, whizzed past the disability-parking area for which my mother had a permit, and finally pulled into a spot in the farthest row of the lot, a good 50 feet from the door.
“Walking’s good for her,” he responded gruffly as I raced to the car.
“Walking is not good for mom; it’s incredibly hard for her,” I said, my fury growing.
“I think she’s right; I don’t think I can make it,” my mother said; she clutched in her hands the disability hang-tag I’d secured for her.
My father emitted one of his pointedly exasperated sighs before restarting the car; he nearly ran over my foot as he zoomed agressively past me to one of the spots near the door.
And what, I wondered, transpired when I wasn’t around? A horrifying glimpse had come from an aunt who’d lunched with my parents on a hot summer day. My mother’s oxygen canister had failed after an hour, she had reported. My father had volunteered —with a laugh, no less—that he guessed he had forgotten to fill it before leaving the house. Instead of bringing the car around, my father set out across a broad expanse of sun-scorched parking lot with my frail mother in tow. Gasping and oxygen-less, my mother had finally stumbled to a faint. My aunt had summoned the paramedics.
I saved for last a story that I thought—mistakenly, as it turned out—was guaranteed to get a rise out of the officious doctor if all else failed. I had bought for my mother what was supposed to be a foolproof system to improve her medication compliance, the sole issue that seemed to galvanize Dr. U.’s attention. The special gizmo I had purchased, recommended by Dr. U. herself, would play chimes when it was time for my mom to take her pills.
By the next day, when I came to the house, I found the device in the trash, I told the doctor.
“‘We don’t want that,'” my father had said as my mother hung panting over the counter near her trays of unused medication.
“‘We don’t need it and we don’t want it. All we need is for all this meddling to stop. And then we’ll be just fine.”
When I had concluded the story, Dr. U. simply gathered her folders and arose from her chair. “Well,” she said. “I think that’s it for today.” She shook her head slightly. She widened her lips in what I took for an approximation of a smile.
“Let me know if you need any prescription refills,” she said. “Nice to see you.” And left the room.