Knocking on Heaven's Door: The Path to a Better Way of Death (2 page)

horrified that my first emotion was relief. Relief for everyone involved.

If you have not been there, you just don’t get it.”

—H. M.

*Reprinted with the writers’ permission.

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“Please know that what you shared made such a huge difference in

my family’s ongoing health care crises. I learned I could say no to a

doctor. I learned I could say no to my mother. I learned from you what

the picture might likely look like at the end, and because of that, my

family was spared the ongoing onslaught of pain that you and your

father endured. I learned from you, and I pass that on to others now.”

—R. H.

“Your writing and observations are a gift. During a recent period

involving hospice and eventual death of a family member, your

vision and heart were inspiring guides. Keep opening eyes and

encouraging questions and curiosity and guided puzzlement. Peace

be with you.”

—T. A. F.

“My mother, a Phi Beta Kappa, lost her mind to Alzheimer’s. Her

greatest fear was that she would be put in a nursing home to rot

away and die. She begged my sister and me to never allow any type

of life support. She was eventually moved to a lock down dementia

unit after trying to escape the assisted living area, stark naked and

walking down the street with her walker at 2:00 a.m.

“We were told a pacemaker was needed. I am her health care

proxy and said no. The surgeon said he was putting the case to the

hospital ethics committee and I would have to deal with them. He

was quite rude, indignant, guilt provoking and you know the rest. I

reluctantly folded and let the doctor proceed.

“Yesterday was my mother’s 89th birthday. She does not know

me. She does not dress herself. She wears diapers. Her hair is fall-

ing out, her face is mottled with horrible looking spots, her ankles

are swollen and she weighs 109 pounds at 5 feet 7 inches. Your

article has given me strength, hope and options. I am sending your

article to my sister and perhaps we will do the humane thing once

and for all; disengage the pacemaker. Thank you for such an infor-

mative, moving article.”

—J. Z.

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Knocking

on

Heaven’s Door

Our Parents,Their Doctors,

and a Better Way of Death

Katy Butler

SCRIBNER

New

York London Toronto Sydney New

Delhi

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Do not quote for publication until verified with finished book. This

advance uncorrected reader’s proof is the property of Simon & Schuster. It is being loaned for promotional purposes and review by the recipient and may not be used for any other purpose or transferred to any third party.

Simon & Schuster reserves the right to cancel the loan and recall posses-sion of the proof at any time. Any duplication, sale or distribution to the public is a violation of law.

Scribner

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Copyright © 2013 by Katherine Anne Butler

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First Scribner hardcover edition September 2013

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used under license by Simon & Schuster, Inc., the publisher of this work.

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Designed by Jill Putorti

Manufactured in the United States of America

10 9 8 7 6 5 4 3 2 1

Library of Congress Cataloging-in-Publication Data is available.

ISBN 978–1–4516–4197–4

ISBN 978–1–4516–4199–8 (ebook)

Permissions and photo credits appear on page xx.

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In memory of my parents,

Valerie Joy de la Harpe and Jeffrey Ernest Butler,

In gratitude to Toni Perez-Palma and Alice Teng,

and to all caregivers,

paid and unpaid.

May You Be Peaceful and at Ease

May You Be Filled with Lovingkindness

May You Be Free from Fear and Danger

May You Be Happy

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I fell

because of wisdom,

but was not destroyed:

through her I dived

into the great sea,

and in those depths

I seized

a wealth bestowing pearl.

I descended like the great iron anchor

men use to steady their ships

in the night on rough seas,

and holding up the bright lamp

that I there received,

I climbed the rope to the boat of understanding.

While in the dark sea,

I slept, and not overwhelmed there,

dreamt: a star blazed in my womb.

I marveled at that light and grasped it,

and brought it up to the sun.

I laid hold on it, and will not let it go.

—Makeda, Queen of Sheba, translated by Jane Hirshfield

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Contents

Prologue 000

Chapter 1
Along Came a Blackbird

000

Chapter 2
The Tyranny of Hope

000

Chapter 3
Rites of Passage

000

000

Chapter 4
Fast Medicine

000

Chapter 5
Inventing Lifesaving and Transforming Death 000

Chapter 6
My Father’s Open Heart

000

Chapter 7
Not Getting Better

000

Chapter 8
Dharma Sisters

000

Chapter 9
Broke-Down Palace

000

Chapter 10
White Water

000

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Chapter 11
The Sorcerer’s Apprentice

000

Chapter 12
The Business of Lifesaving

000

Chapter 13
Deactivation 000

Chapter 14
The Art of Dying

000

Chapter 15
Afterward 000

Chapter 16
Valerie Makes Up Her Mind

000

Chapter 17
Old Plum Tree Bent and Gnarled

000

Afterword: The Path to a Better Way of Death

000

A Map through the Labyrinth

000

Notes for a New Art of Dying

000

Notes 000

Author’s Note

000

Acknowledgments 000

Permissions and Credits

000

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Knocking on

Heaven’s Door

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Valerie Joy de la Harpe and Jeffrey Ernest Butler,

Rhodes University, Grahamstown, South Africa, 1946.

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fornia, my mother made a request I dreaded and longed to

fulfill. She’d just poured me a cup of tea from her Japanese tea-

pot shaped like a little pumpkin; beyond the kitchen window,

two cardinals splashed in her birdbath in the weak Connecticut

sunlight. Her white hair was gathered at the nape of her neck,

and her voice was low. She put a hand on my arm. “Please help

me get your father’s pacemaker turned off,” she said. I met her

eyes, and my heart knocked.

Directly above us, in what was once my parents’ shared bed-

room, my eighty-five-year-old father Jeffrey—a retired Wesleyan

University professor, stroke-shattered, going blind, and suffer-

ing from dementia—lay sleeping. Sewn into a hump of skin and

muscle below his right collarbone was the pacemaker that had

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2

katy butler

helped his heart outlive his brain. As small and shiny as a pocket

watch, it had kept his heart beating rhythmically for five years.

It blocked one path to a natural death.

After tea, I knew, my mother would help my father up from

his narrow bed with its mattress encased in waterproof plastic.

After taking him to the toilet, she’d change his diaper and lead

him tottering to the living room, where he’d pretend to read a

book of short stories by Joyce Carol Oates until the book fell

into his lap and he stared out the sliding glass window.

I don’t like describing what the thousand shocks of late old age

were doing to my father—and indirectly to my mother—without

telling you first that my parents loved each other and I loved them.

That my mother could stain a deck, sew a silk blouse from a photo

in Vogue, and make coq au vin with her own chicken stock. That

her photographs of Wesleyan authors had been published on book

jackets, and her paintings of South African fish in an ichthyolo-

gists’ handbook. That she thought of my father as her best friend.

And that my father never gave up easily on anything.

Born in South Africa’s Great Karoo Desert, he was a twenty-

one-year-old soldier in the South African Army when he lost his

left arm to a German shell in the hills outside Siena in Italy. He

went on to marry my mother, earn a PhD from Oxford, coach

rugby, build floor-to-ceiling bookcases for our living room, and

with my two younger brothers as crew, sail his beloved Rhodes

19 on Long Island Sound. When I was a teenager and often at

odds with him, he would sometimes wake me chortling lines

from
The Rubaiyat of Omar Khayyam
in a high falsetto:
“Awake, my little one! Before life’s liquor in its cup be dry!” On weekend afternoons, he would put a record on the stereo and strut

around the living room conducting invisible orchestras. At night

he would stand in our bedroom doorways and say goodnight to

my two brothers and me quoting Horatio’s farewell to the dying

Hamlet: “May flights of angels sing thee to thy rest!”

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knocking on heaven’s door

3

Four decades later, in the house where he once chortled and

strutted and sometimes thundered, I had to coach him to take

off his slippers before he tried to put on his shoes.

My mother put down her teacup. She was eighty-three, as

lucid and bright as a sword point, and more elegant in her black

jeans and thin cashmere sweater than I could ever hope to be.

She put her hand, hard, on my arm. “He is killing me,” she

said. “He. Is. Ruining. My. Life.” Then she crossed her ankles

and put her head between her knees, a remedy for near-fainting

that she’d clipped from a newspaper column and pinned to the

bulletin board behind her. She was taking care of my father for

about a hundred hours a week.

I looked at her and thought of Anton Chekhov, the writer

and physician who died of tuberculosis in 1904 when he was

only forty-four. “Whenever there is someone in a family who has

long been ill, and hopelessly ill,” he wrote, “There come pain-

ful moments when all, timidly, secretly, at the bottom of their

hearts long for his death.” A century afterward, my mother and