Knocking on Heaven's Door: The Path to a Better Way of Death (15 page)

that you hurt me.”

In 1977, the year Bolly Hassan died, a young doctor named

Diane Meier—who would later become a MacArthur fellow

and a leader of the medical countermovement known as pallia-

tive care—was studying medicine at an Oregon Health & Sci-

ence University hospital in Portland, Oregon. On her first day

as an intern, Meier was part of a medical team that subjected

an eighty-nine-year-old man dying of heart failure to a series of

violent and ultimately unsuccessful resuscitations.

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“The fundamental principles that had guided the practice

of medicine—relieve suffering, do no harm—were upended,”

Meier wrote years later:

Almost without discussion, the primary moral principle under-

lying medical practice became the obligation to prolong life

regardless of the toll in suffering, poor quality of life, or cost.

Other messages, equally powerful and similarly unstated,

were conveyed when no one on the team stopped to speak

with the patient’s eighty-seven-year-old wife after he died; no

one asked me how I was handling this violent death of one of

my patients on my first day as a real doctor.

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Open Heart

The unintended consequences of my father’s pacemaker did

not show themselves at once. He came back to Pine Street

from Middlesex hospital in January of 2003 with his hernias

fixed, his pacemaker ticking, his death forestalled, and his brain

just a little bit worse. A man in his forties or fifties might have

bounced back from the two minor surgeries with ease, but not

my eighty-year-old father: general anesthesia can be stressful on

the aged brain, and studies suggest that somewhere between 6

percent and 30 percent of the elderly suffer at least a temporary

decline in cognitive functioning afterward. My mother noticed

that my father had more trouble finding words, couldn’t follow

movie plots, went repeatedly to the wall calendar in the kitchen

to check the day’s appointments, and obsessed about the invest-

ments he no longer controlled. Once he worriedly told me to “call

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the police” when my mother was fifteen minutes late in returning

from a lunch date. On a walk we took to one of our favorite spots,

Indian Hill Cemetery, he seemed strangely drawn to an arrange-

ment of nails on the crossbar of a gate, pointing them out to me

as if they had a significance that I could not fathom.

Alarmed, my mother took him to his neurologist, who called

it a temporary “slippage” and a “mild decompensation,” probably

attributable to the surgeries. Medicare authorized more speech

therapy, and the dedicated and perceptive Angela returned to

the house three times a week.

My parents soldiered on across a rough plateau with no out-

side caregiving help beyond Annie, who still gave my father his

showers. When Annie left town due to a family emergency, my

mother again collapsed into tears and exhaustion. She and I

were falling into what would become a pattern: my father would

get worse, I’d nag her to get more help, and she’d resist until she

hit the wall. Then I’d fly in, and she’d become, as my brother

Michael put it, “sweetly reasonable” and agree to a change. But

this time I had a work deadline and didn’t want to go.

It had taken me more than a year to realize that my brothers

weren’t carrying much of the load. Charming, creative, and

often financially struggling middle-aged men whom my mother

and I still called “the boys,” they had not visited Middletown

once in the year since the stroke, although they had taken to

calling more frequently, and my brother Jonathan often lent me

a listening ear during his long hours on the road.

In part, my mother and I could only blame ourselves: neither

of us had asked for nor expected much from them. This had a

perverse payoff for me. After decades of secretly fearing that my

mother’s accusations of selfishness were true, I was, at last, her

Good Daughter. During one of my visits, as I was explaining her

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investments to her for the
nth
time, she sighed and said, “Thank God I have a daughter. Sons are useless.” That felt, in a strange

way, bad, and in a strange way, good.

I pressured Jonathan to fly to Connecticut, and he did. A

practical fixer, he negotiated a good deal for our mother on a

new Camry and took her to buy a cell phone in hopes that it

would release her to hire someone to look after our father and

yet be reachable if something went wrong. In honor of their

shared love of sailing, he took our Dad to Mystic Seaport for

a day, to walk around the old schooners and whaling ships.

My father tired quickly, could not carry on a conversation, and

asked to go home early. Jonathan gave up on him for good.

“In retrospect, it was selfish on my part,” Jonathan would tell

me later, looking back. “He wasn’t the guy I was used to, and I

didn’t feel like being a babysitter. Now I tell my friends, spend

all the time you can with them. It’ll make you feel better later.”

My mother returned the cell phone the day Jonathan flew out,

after first angering her by failing to strip the linens from his bed. My heart sank. Neither he nor I was sure the trip had been worth it.

One night, when I was out of ideas, Jonathan called me from the

road—his new job involved driving big rigs around L.A., work-

ing punishing hours for not much more than minimum wage—

to say, “I think I’ve pulled a rabbit out of a hat.” He’d given our

exhausted mother the phone number of a friend named Toni

Perez-Palma who needed part-time work and was living in Mer-

iden, a deindustrialized city near Middletown that had once

been famous for manufacturing tools and silver cutlery. Jona-

than had first met Toni years earlier, when she was traveling the

country with one of his truck driver friends. She and Jonathan

had bonded over their mutual commitment to recovery from

addiction, and they stayed in touch.

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On the day Toni first drove her battered SUV up my parents’

long drive, guided in from the street by my anxious, mute father,

my mother knew little about her, and what little she knew did

not reassure her. The nervousness ran both ways. “Your mother

was sitting at the dining room table with a big legal pad in front

of her,” Toni later told me. “I was intimidated by her proper

British air. When she opened her mouth with that accent, I was

afraid I was going to blurt out some slur.”

My mother asked Toni if she’d ever done this kind of work

before. My father hovered in the background, pacing. Toni

thought he had a sweet presence and liked his smile. The good-

looking daughter of Puerto Rican immigrants, Toni had grown up

mainly in foster care and dropped out of school in tenth grade.

After some lost years knocking around Miami, she’d changed

her life, gone to work as a waitress and a bartender, managed a

restaurant, and earned her GED. She was five years clean and

sober by the time she met my mother, and she =hoped some

day to get a degree in geriatric social work. She was caring for

her own aged biological mother, worrying about her two grown

kids, and taking medication for a chronic health condition that

restricted her from working more than a few hours a week.

She did not tell my mother all this, not right away. Instead

she described the work she’d done earlier helping her mother

take care of elderly people in Miami. Toni was strong, patient,

honest, and energetic. She loved old people and she had a big

heart. My mother was desperate. And Toni was a gift from

unseen powers.

Soon she was my mother’s right hand, driving her SUV up

the driveway three times a week, giving my father his morning

shower, blow-drying his hair, cleaning up breakfast, vacuuming,

and doing the emotional and physical work that I, had I been

a different daughter, might have taken up. My mother often

worked alongside her, and together they weeded the garden,

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stained the deck, and squirted a perimeter of poison around the

house each spring to keep out the ants.

The healing went both ways. “I was pleased to have a job,”

Toni told me later. “I felt useful. It was good for my self-esteem.

And the more duties I started to do, the more duties she gave

me, and I got a relationship with both of them where I was not

just an employee but also a friend.”

And so she became one of two and a half million street saints

across the country who, despite poor pay and the harshness of

their own lives, draw on unseen wells of compassion and emo-

tional skill for families like mine. My mother paid into Social

Security for her and, in time, came to pay her nearly twice the

immorally low going rate. But Toni was not legally entitled to the

minimum wage or overtime pay or any other basic protection of

the federal Fair Labor Standards Act, on the theory that work-

ers like her—most of them women—are near-family members

who mainly provide companionship and therefore, in a logic

that escapes me, don’t deserve decent pay. In a further reflec-

tion of our culture’s willingness to pay millions for high-tech

“cures” (usually provided by men) but very little for ongoing

care (usually provided by women), repeated attempts to cover

homeworkers under federal labor laws have run into resistance

since the 1930s and into the first decade of the twenty-first

century; the home health agencies that employ many of them

have recently been prime lobbyists against change.

It was Toni who rinsed and dried the lettuce and wrapped

it in dish towels for the refrigerator crisper, the way my mother

liked it. It was she who called my father “Mr. Butler,” even as

she quietly set aside his shit-stained bathrobe for the wash. She

was not a servant, not exactly a hired hand, and not quite a sur-

rogate daughter, and yet she was a bit of all those things. She

kept my mother out of the grave and my father out of a nursing

home. She probably did more good for my father and mother

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than all of their children combined and more than most of their

doctors. She sometimes felt more like a sister to me than my

brothers felt like brothers.

She was patient and kind to my father in a way my frayed

mother could not be and tolerant of my mother in ways that I

was not. “Your mother had very little patience because she had

waited so long to accept help,” Toni explained to me some time

later. “She was sleep deprived, and she was there all the time, so

no wonder she got impatient. And your father, he had a demeanor

of sweetness. He was easy, he was like—he was not my child—he

was something more than a job—he was something more special.”

I kept doing what I thought I did best and what I thought I

would be loved for: I played social worker, found experts, nagged,

bossed, strategized, and planned for the worst. But maybe the

best thing I did was write my father love letters.

They were simple letters, as if written by a five-year-old girl.

Knowing that his visual brain was less damaged than his verbal

centers, I put drawings in the margins and within the text. My

drawings were little cartoons, imperfect, sloppy; my handwrit-

ing as hard to read as ever. I no longer had to worry about how

he’d edit my work or what he’d say about my risky career. And

like me, he wrote back more tenderly than he could speak. It

was the laboring-over that counted for me, the fact that he’d

spent an afternoon making something, a gift, for me.

For decades we’d had such high standards for each other,

and never hesitated to make it clear when the other one hadn’t

met them. In my teenage years I’d wanted him to drink less

and flirt less at parties, to pay more attention to my brothers,

to stand up to my mother and to protect me from her, and to

be more encouraging and attentive of me. He’d wanted me

to do my homework, stop losing things, stop fighting with my

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mother, stop contradicting him at the dinner table, and get A’s

in everything. Now he looked at me with fresh eyes, impressed

when, after a walk with him through the Wadsworth Woods, I

did something perfectly ordinary like scrape mud off my shoes