Knocking on Heaven's Door: The Path to a Better Way of Death (31 page)

father’s executioner. Only later did I learn that for someone as

fragile as my father, a do-not-resuscitate order was an almost

unequivocal act of mercy. Only 8 percent of people resuscitated

outside a hospital leave it alive, and most of them go into nursing

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homes with too much brain damage to take care of themselves

ever again. Only 3 percent of those my father’s age recover well

enough ever to return to independent living.

I placed an ad on the local Craigslist offering twenty-five dol-

lars to anyone who would drive to Middletown every weekday

evening and spend an hour or so putting my father to bed. My

brother Jonathan told me that only an idiot would want such a

job. Within days I found a married nursing student who lived in

the next town. Relieved, I took a day off, caught the Metro-North

commuter train from New Haven to New York, and proposed

some story ideas to editors. Then I flew back to California.

At home, I found an e-mail waiting from the nursing stu-

dent: her class schedule had changed and she was turning down

the job. I posted another ad on the Hartford Craigslist and from

my study in California started calling the motley characters who

responded, including several who sounded as if I’d roused them

from drug-addled stupors. Finally I found a Chinese-American

woman who supported her young daughter by working, days in

an insurance company office and nights at a Chinese buffet

in a distant suburb. I liked her voice. I gave her number to my

mother, who liked her too, and three days later, to my relief,

Alice Teng quit the buffet and started to work for us.

Thanksgiving and Christmas came and went. I wrote my

mother a hectoring letter, telling her it was time to get someone

to move in full time. I did not offer to be that person. I searched

for a cardiologist willing to turn off the device, and had no luck.

In Mill Valley, Brian and I lit fires and held holiday potlucks for

his sons and our single friends. I lost five pounds. I dropped out

of my book group. I wondered why I wasn’t achieving more as

a writer.

My mother made another entry in her journal. “This morn-

ing he had to be changed from top to bottom including bed-

clothes—second time. He slept all morning and even after

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lunch ’till three. I then thought we’d go to Wadsworth Park to

walk. On the way back he said he’d done a poop—big mess,

but managed to clean the car, etc. How I HATE this part.” She

copied out a haiku on a three-by-five card by the poet Issa and

taped it to the bookshelf above her desk: “In this world we walk

on the roof of hell, gazing at flowers.” On the refrigerator, next to

an old pamphlet listing the warning signs of stroke, she stuck a

new magnet with a quote paraphrased from Winston Churchill:

“When you’re going through hell, keep going.”

A deepening silence enclosed us.

The only people I felt understood the interior of our lives were

Dr. Fales; Teddy, who ran the bustling Middlesex Fruitery on

Main Street where my mother and other professors’ wives bought

their produce; Toni, who still drove up in her battered SUV three

days a week; and the bread man at the local Stop & Shop, who

each week met my mute father’s eyes with a moment of respect

and tenderness while taking the loaf of bread my father solemnly

handed him to run through the automatic slicer. I would fly home

after each visit to Middletown feeling proud of some small task

accomplished and with a knot in my stomach about what was

left undone and what might soon need doing. With the excep-

tion of Brian, my brothers, and the circle of anonymous women

my mother’s age whom I met at sporadic Alzheimer’s Association

support groups, I confided in almost nobody. I would return to my

California life expecting no bleed-through. I expected what hap-

pened in Connecticut to stay in Connecticut. It was as if it was

happening to somebody else’s daughter.

I spoke to my friends in shorthand phrases:
Stroke. Pace-

maker. Deactivation. Dementia. Mother. Father. Connecticut.

They recoiled. It was easier to say I was furious with Dr. Rogan

than to say my heart was breaking. It was easier to talk about

medical proxies and a patient’s right to medical autonomy and

the Nancy Cruzan Supreme Court ruling than about my father’s

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shit-stained dressing gown and my mother’s end-of-her-rope vio-

lence. Witnessing my parents’ suffering was in itself suffering,

but by and large I kept the news from myself. I looked around

my county for a therapy group for long-distance caregivers like

me, and found none. Only with my friend Noelle, whose mother

had Alzheimer’s, did I say,
For what?
Only to Brian did I say,

My father is dying
. I wrote in my journal that I was “exhausted, resentful, despairing, with nothing left to give.”

My mother took my father to Dr. Fales and watched in silence

as he attached the state-issued orange plastic DNR bracelet to

my father’s wrist. Dr. Fales had filled out the forms in triplicate,

as you do for a dangerous drug, and ordered the bracelet from

a state warehouse. Later that month, my father slipped on the

stairs with my mother holding him, tumbling all the way down

to the vestibule on top of her, breaking his wrist and turning

her black and blue from hip to ankle. She debated whether to

buy or rent a stair glide, and when Alice said she thought my

father had somewhere between six months and year left of life,

decided to rent. A couple of men from a pharmacy supply house

in Wethersfield came in a van and installed it. It was another

marker of my father’s approaching death.

At my prompting, my mother took my father to see Richard

Ketai, a geriatric psychiatrist in Middletown. It was another step

in my long-term plan, cooked up with the nurse from Compas-

sion and Choices, to validate my mother’s legal right to make his

medical decisions and get the pacemaker turned off. “Mr. Butler

cannot name the year or the month or the season, even though

I tell him several times,” Dr. Ketai wrote, in a letter declaring

my father incapable of understanding, making, or expressing his

medical choices. “He can name a watch and a comb but he is

utterly unable to name a pen. He denied he had a pacemaker

and did not know what one was. It was with some difficulty that

he was able to name only two out of his three children.”

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*

*

*

When I returned to Middletown, it was early spring. A bloom

of pale green hovered like mist on the trees outside Dr. Fales’s

office window. Once again, he sat behind his desk and my

mother and I faced him, just as we had not long after my father’s

first stroke. Again my mother brought up the pacemaker: she’d

gotten nowhere. Dr. Rogan said he’d asked around at the Catho-

lic hospital where he had privileges, and said that no other doc-

tor he knew was any more willing than he was. My mother told

Dr. Fales that she’d talked to her former internist, the head of

Middlesex Memorial Hospital’s standing bioethics committee.

But because my father was an outpatient, the doctor said, the

committee couldn’t get involved.

Dr. Fales had warned us earlier that without a pacemaker, my

father might get dizzy, fall, and break a hip. But now my father

was falling anyway, and Dr. Fales’s views had changed. Twice my

mother had called 911 when she was too weak to get my father

up from the floor alone, and twice she’d had to vehemently resist

paramedics who wanted to take him to the emergency room.

“You are the one who knows Jeff best, and knows what is best

for him,” said Dr. Fales. There were tears in his eyes. His own

father’s Alzheimer’s was progressing and he had been hospital-

ized in Maine. His mother was as exhausted as mine. He was

planning to driving north as soon as possible to make sure that

the staff at the Maine hospital “kept their hands off” his father

and did not resuscitate him. Dr. Fales was a Catholic, he said,

but that didn’t mean he favored extending life beyond its time.

“Jeff can’t communicate,” Dr. Fales said to me. “He used to

be able to tell me where it hurt. Now he just smiles and agrees

with whatever Val or I are saying.” He said he’d write us the let-

ter we needed. But as for turning off the pacemaker, he said he

didn’t know how.

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A friend called me from San Francisco. “That’s euthanasia,”

she said flatly and confidently, when I told her what we were

trying to do. Brian, who was raised as a Catholic and opposed

abortion, said he understood why no cardiologist would help

us. “It’s the liability,” he said. An editor of mine at a mental

health magazine in Washington, DC, gave me the number of

a social worker he knew in Baltimore who specialized in aging

families. I should take charge, the social worker said over the

phone. My father should be moved, against my mother’s will if

necessary, to a skilled nursing home. I should get my brothers

to fly out and help me. That, she seemed to think, was morally

preferable to trying to get the pacemaker turned off. “I know

what you and your mother want,” she said. “But what does your

father want?”

The thought made me sick. To which of my fathers did I owe

my allegiance? To the semi-intact man who’d come with me on

a shuffling walk through Wadsworth Park near the old convent

soon after his first stroke, the man who’d said to me, “But
This!

This?
” To the somber man who, a year later, told my mother

he was “living too long?” To the beloved and nearly mute man

whom I’d promised, “If Val dies, I will take care of you?” To the

decrepit eighty-four-year-old who’d told my mother, “Unfortu-

nately, I come from long-lived people?” To the silent, ancient

parrot my father had become? To his brain stem, which would

fight to live until the last light in the last cell went out?

Unfortunately, I come from long-lived people.

I could barely articulate our situation to myself; how could I

speak in terms my poor father could understand?

It was with some difficulty that he was able to name only two

out of his three children.

Would it be anything but cruelty to ask my beloved ruin of a

father what he thought about his “quality of life”? To ask him,

as Judith Schwarz had suggested, about the kind of funeral he

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wanted? To ask how he felt about the benefits and burdens of

continued treatment?

He denied he had a pacemaker and did not know what one was.

I called a bioethicist at Harvard.

He suggested I imagine that as if by magic, my once-lucid

and commanding father could appear at the kitchen table, talk

with me for fifteen minutes, and then contemplate returning to

his current state. I saw my dear father shaking his head in horror

over what was no longer a “life” but a slow-motion dying. It didn’t

help. I sensed that once he died, I would dream of my father and

miss his mute, loving smiles. I wanted to melt into the arms of the

father I once had and ask him to handle this. I couldn’t.

In the course of his eighty-five years, my father had died as

a South African schoolboy and been reborn as a war hero; he’d

died as an able-bodied man and been reborn an amputee, a

husband, and a father. He’d died as an Oxford DPhil candidate

scraping by on a disabled veteran’s pension and been reborn as

an émigré, an American citizen, and a comfortably retired Wes-

leyan University professor. I saw no need to sentence him to yet

another life, this one stripped of almost every husk of self but

a Medicare number and a couple of photographs on a bedside

table in the locked “memory care” unit of a nursing home.

I felt in the deepest wells of my being that doing whatever

I could to hasten his death (short of manslaughter, for which I

had not the courage) was a moral act and a sorrowful necessity.

My mother said later, “I can only think of that old-fashioned

word, character.”

As I groped for a language I could call my own, I thought of

Indra’s Net, an ancient Buddhist metaphor for the interrelated-

ness of all life that I’d read about in
The Flower Garland Sutra

one cold, muddy winter in the Plum Village meditation commu-

nity in southern France. The Net of Indra was a vast, bejeweled

matrix spanning and encompassing the whole universe. From