Knocking on Heaven's Door: The Path to a Better Way of Death (32 page)

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every knot hung a jewel, and each jewel reflected the images

of all the other jewels hanging from Indra’s net. My father’s

life was one jewel hanging from a knot in that infinite web,

and in that jewel was reflected my life, and my brothers’ lives,

and my mother’s life. Reflected there, too, were the lives of Dr.

Fales and Dr. Rogan, all of us infinitely reflecting and affecting

each other in a universe without beginning or end, where divine

energy flowed from form to form, permeated with light.

My father’s pacemaker and our broken human lives ticked

on, not in a universe governed by a god whose rules were written

on tablets and interpreted by male priests who’d never spent a

day changing adult diapers or listening to the moans of a Nancy

Cruzan. They ticked on in a world that could not be reduced to

bioethical legalisms, sophistry, evasion, and double-talk.

In the world we lived in, every act and failure to act trailed in

their wake widening ripples of suffering. Nowhere I looked did I

find Avalokitesvara, the Indian bodhisattva with a hundred eyes

and hands who hears the cries of the world and reaches out to

help using whatever tool might do the trick. Rarely did I even

find the word “suffering” written, much less a map for what to

do when the ones you love are drowning in it.

Two women rang my parents’ doorbell and introduced them-

selves. One was an occupational therapist and the other a visit-

ing nurse. Unbeknownst to us, Dr. Fales, alarmed by my father’s

frequent falls, had referred us to a program I’d never heard of,

called palliative care. I would later learn that it is a relatively

new medical specialty with a philosophy akin to hospice but

better integrated into medical and hospital practice. Palliative

care, the nurse explained, offered home visits, a coordinated

medical team, and a social worker. Unlike hospice, it did not

require a medical finding that my father would die within six

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months. The emphasis would be on caring—for all of us—

rather than trying to cure my incurable father. The nurse gave

my mother the phone number of a “lift and assist” service at

the fire department, an alternative to 911, to help her get my

father up without facing a push to take him to the emergency

room. The occupational therapist walked through the house

and pointed out small rugs that could be taken up to lessen the

chance of my father falling. She suggested my mother buy a

commode and a baby monitor for my father’s bedroom.

Finally we were not alone.

At dinner I saw my father examine the plastic DNR bracelet

on his wrist, trying to read its blurred words with slow, parrot-

like curiosity. Nobody, I sensed, had talked to him about it.

What would we say?

As my parents and I finished watching the news together, the

doorbell rang, Alice Teng walked in, and my father brightened.

He rose unsteadily to roll the television back to its accustomed

nook, but my mother sharply said no: he’d recently tipped it

over. “You show me how, Jeff,” Alice said gracefully, and he obe-

diently hovered behind her as she rolled it away. He followed

her to the stair glide, where she helped him sit down, showed

him again where to put his feet, buckled him in, and pressed

the button gliding him upward. I did not believe in angels, but

I thanked whatever powers there might be for Alice. Jesus said

that the stone the builders rejected would become the corner-

stone. Alice treated my father with dignity and saved my mother

from herself and her exhaustion, leaving the house each night,

after cleaning his teeth and putting him to bed, with a cheery,

“Good Night, Jeff!” Toni was happy to let my father go for a walk

even if it meant cleaning his bottom when he got home. They

were our cornerstones. It didn’t matter that they were paid for

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the mercy they showed us. I felt an almost religious gratitude to

Toni and Alice who gave their hearts, wisdom, and gentleness

to us, near-strangers.

The situation was better, but my mother was worse. She

could not sleep. In the mornings, when I tried to talk about

hiring someone to move in, she felt faint. She put her head

between her legs at the kitchen table. She went to the living

room and lay down on the sofa.

I joined my mother in her yoga routine as my father slept. As we

stretched our backs up and down in cat-and-cow, she told me,

for the third time since my plane landed, that I looked anorexic.

Again I felt my heart sink and again I asked her to drop it. Would

I never be okay in her eyes—not too thin or too fat, too close

or too distant, too bossy or too meek, too needy or too indepen-

dent, too sloppily dressed or wearing too many colors? “Katy,”

she said, “You have no sense of humor!”

When we were done, I went upstairs, changed out of my yoga

clothes, and quietly called Southwest to move my reservation a

day closer. I was not going to criticize, condemn, or complain.

I knew that the only way to win an argument with my mother

was to avoid one. When she started needling me like this, I told

myself, it was her way of saying it was time I went home.

I took my father for a last walk later that morning, the two

of us heading down the margin of the busy road to the old

Cenacle convent. We planned to walk to a stop sign a long

block from the house. His wheezing was so loud that it fright-

ened me. When I suggested turning back, he spat out, between

labored breaths, with the old contempt I remembered well

from our warring years, ‘You’re . . . the One . . . that’s
Scared,
”

and marched doggedly on. The stroke-damaged man who had

walked by himself to the Wesleyan pool three times a week was

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katy butler

a superhero in comparison with the angry shut-in old body now

shuffling beside me.

At lunch, my mother took my hand. “I don’t want you to

leave,” she said, and she began to weep. “I want you to stay

longer.” I looked into her blue eyes, swimming with tears, and

held her hand: she was raw, open, loving, honest, and beautiful.

I didn’t say, I
can’t bear you calling me anorexic
. I didn’t say,
Stop
and I’ll stay
. I stroked her hand and made comforting noises, but I made no move to change my flight.

The morning I was set to go home to San Francisco, I hesi-

tated at my father’s door, and then went in and woke him. It was

6:30, and the sky was dark outside the window. He opened his

eyes and smiled at me. “Toni’s taking me to the airport,” I said,

not sure if he would understand.

“Should I get up? Am I coming?” he said.

“No,” I said, and kissed him on the cheek. “Good-bye,” I

said. “Go back to sleep. I love you.”

Three weeks later, my mother called me in California and

said, “Come.”

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V

Acceptance

Winter at Pine Street, Middletown, Connecticut.

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My father’s bronchitis had worsened. My mother had not

called a doctor. In the daytime, he slept. At night he

thrashed around in their old master bedroom, sometimes get-

ting up and falling, as my mother, drained of sleep, listened via

the baby monitor from the guest bedroom and came in to get

him back into bed. His breathing grew worse, his mind more agi-

tated. The palliative care nurse came one morning and put her

ear on his gurgling chest. He had pneumonia, she said. He was

finally dying decisively enough to qualify for hospice. Thanks to

our involvement with her program, he would not meet his death

in intensive care after a panicked stop in an emergency room.

The nurse called the hospital and made the arrangements, and

my mother called an ambulance. He was taken to Middlesex

Hospital’s inpatient hospice unit, fighting as if for his life, kick-

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katy butler

ing and biting and telling the orderlies to “bugger off.” Toni vis-

ited. She asked him if he knew who she was, and he opened one

eye and fixed her with a baleful and knowing look. He ate a full

dinner, and then was shot full of morphine.

By the time I got there, he was lying silently in bed, his lungs

slowly filling with fluid, unreachable, his eyes shut, breathing as

hard and regularly as a machine.

The hospice unit was homey and peaceful. Pamphlets told

us that my father’s hearing would be the last sense to go. They

suggested we read aloud to him, play his favorite music, and

say whatever in our hearts was left unsaid. At the end of the

hall was a carpeted living room with a phone and a comfort-

able couch and videotapes for the families. There was a nonde-

nominational chapel about twice the size of a walk-in closet, a

kitchen, a coffee machine, and a refrigerator full of sheet cake.

My mother knelt by his bed, holding his hand and stroking

his hair, weeping and begging for forgiveness for her impatience.

The beginnings of a tear oozed out from under my father’s eye-

lid, and a nurse said to my mother,
Stop. You’re making him cry
.

I was again ambushed by their love and my continuing failure

to understand it.

My mother sat by him in agony. She beseeched the doctors

and nurses to increase his morphine dose and end his suffering.

She kept asking about turning off the pacemaker. By the time

the hospice unit called Dr. Rogan’s cardiology practice it was a

Saturday, and the doctor on call refused to authorize its deac-

tivation. No message was apparently given to Dr. Rogan, who

later told me that he’d have turned it off if he’d known. A month

after my father’s death, a joint committee of the American

Heart Association, the Heart Rhythm Society, and the Ameri-

can College of Cardiology would issue a “consensus statement”

declaring that it was morally and legally acceptable to deacti-

vate a pacemaker if the patient wished, and that it was neither

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assisted suicide nor euthanasia. That would come, of course,

too late for us.

And so followed five days of hard labor.

Love can look heartless. We did not give my father oxy-

gen or food or an IV of saline or a cup of water. If we had, we

would only have slowed the shutting-down of his organs and the

drawn-out process of his death. A nurse told us that dying from

not eating or drinking is not painful, and I myself had fasted

for days without distress, but I could not forget the gospel of

Matthew, in which Jesus says, “For I was hungry, and you gave

me meat; I was thirsty, and you gave me drink.” Never before in

history have so many sons, daughters, and spouses been forced

to treat someone they love like this at the end.

We would not treat a dog this way.

When death takes just a few days, it is easy, or at least pos-

sible, to hold the dying person in the center of one’s attention.

When one has already attended a slowly dying person for years,

it’s harder. I could barely bear to be there and listen to his labored

breathing and my mother’s weeping. I left my mother with him

and went to Pelton’s drugstore on Main Street and bought a copy

of
Elle
magazine. I came back to the hospital and waited for my

brothers to come and for my father to die. I went shopping for

shoes at Marshall’s, once with my mother and once alone. I came

back in my new shoes and sat by his bed and read
Elle
and held