Knocking on Heaven's Door: The Path to a Better Way of Death (7 page)

to handle Mr. Butler’s physical condition and all of the financial

affairs which have now fallen in her lap. She does have a reliable

daughter to help her through this difficult time.”

Dr. Fales spent thirty minutes with her—twice the allotted

time. “I bonded with your parents, and you don’t bond with every-

body,” he would later tell me. “It’s easier to understand someone

if they just tell it like it is from their heart and their soul.”

He gave her a prescription for Ambien, a sleeping pill. But

she needed more than a pill and a so-called reliable daughter

three thousand miles away. She needed a support team—a social

worker, a visiting nurse, and hired caregivers to give her respite.

Our whole family, in fact, could have used help: with the con-

fused, muffled grief we felt about having a paterfamilias who

was no longer in charge; with the disappointment I felt about

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my brothers’ being AWOL; with future medical decisions we did

not even know we needed to prepare ourselves for; and with our

disowned, premonitory sadness about the unnamable losses yet

to come. Had my father been diagnosed with a reliably fatal dis-

ease such as pancreatic cancer, we would have gotten such help

from a Medicare-funded hospice team. But the Medicare hos-

pice benefit is reserved for unambiguous dying. It covers only

those who give up all hope of cure and are certified by a doctor to

have less than six months to live. The requirements are so draco-

nian—and doctors and some families so overoptimistic about the

patient’s survival chances—that half of those who enter hospice

get care for no more than their last eighteen days of life, .

If my father had died of his stroke, we would have had a

big funeral. Covered dishes would have appeared on the door-

step and condolence letters in the mail. Kind friends would

have taken my mother to dinner, and single women would have

befriended her acknowledging her new social identity, her wid-

owhood. Former colleagues would have known more or less

what to do and say. But there is no public ceremony to com-

memorate a stroke that blasts your brain utterly and no common

word to describe the ambiguous state of a wife who has lost her

husband and become his nurse.

I would later read, in a remarkable caregiver’s manual by Dr.

Dennis McCullough called
My Mother, Your Mother,
that this

was the moment for me to fly in, capitalize on the outpouring

of phone calls that followed the stroke, and marshal concerned

friends and neighbors to help in specific ways. But I was busy

earning a living, and my proud, self-reliant parents had not

invited me to manage their lives. My mother, a solitary being

and a perfectionist, was in some ways her own worst enemy.

She doubled down and did more of what she already did well:

working tirelessly, frugally, and efficiently, and asking for noth-

ing. When a younger female history professor she barely knew

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katy butler

offered to come sit with my father and give her respite, she

didn’t follow up. When visiting home health aides, funded for

a few hours a week by Medicare, showed up inconveniently at

three in the afternoon to give my father a shower, she dismissed

them for good. Only one of my father’s old colleagues managed

to penetrate her thicket of self-reliance: he called my father

directly and arranged to take him out to lunch every other week.

My mother’s blood pressure rose. She was dizzy and nauseous

during the day and couldn’t eat. At night she couldn’t sleep.

On the phone in California, I listened to her weeping—my

formidable, dominant mother, whom in fifty years I’d rarely seen

cry, and who had so often heard me weep—as the long winter

rains fell outside my window. I felt tied to her misery like a dog

tied to a rattling can by a three-thousand-mile string. I, too, could

not sleep. In a
Physicians Desk Reference
I bought at a garage sale, I discovered that the entry for Ambien (the drug she was taking

for sleeplessness) listed dizziness, anxiety, and anorexia among its

side effects and “adverse events.” I read the list aloud to her over

the phone, and to my relief she agreed to quit, and did.

I sent her a soothing book called “Sabbath,” which I hoped

would encourage her to rest, and a guided-imagery relaxation

tape. I fruitlessly nagged her to sign up for a yoga class and to

hire a caregiver. And every three or four months, whenever she

grew too thin, sleepless, or tearful, I flew east.

Thus I became part of the roll-aboard generation—the legions

of long-distance daughters and the smaller contingent of sons

who hoard their frequent-flier miles and often, but never often

enough, roll their suitcases onto and off planes. The rest of the

time, we hire caregivers long-distance, do Internet research on

treatments and nursing homes, and try to make phone calls,

e-mail, and even Webcams substitute for being there. We make

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up a substantial part of the nearly twenty-four million sons and

daughters—about 8 percent of the U.S. population—who help

care for aging parents.

I was grateful I could help my parents. I was amazed I wanted

to. And I was scared.

One woman I knew spent twenty thousand dollars on air-

fare to Florida in a single year of dual parental medical crises.

A man I knew had insisted, after too many emergency flights

east, his father move into an excellent retirement home in our

neighborhood called The Redwoods. The old man missed his

friends and hated the food, and the fog. Another woman had

quit her job to move in with her demented father and found

herself impoverished and nearly homeless when the house was

sold to pay his debts after his death. Some European countries

pay family caregivers modestly and contribute to their pension

funds to make up for what they lose by reducing their hours in

the workforce. This doesn’t happen much in the United States.

A generation or two earlier, my path would have been clearly

marked. I’d have moved into my parents’ house, eaten the food

at their table, and taken up the ancient burden of unpaid female

altruism. It was a role women were once born for: the devoted

wife, the selfless daughter-in-law, the uncomplaining, impov-

erished maiden aunt, and the “eldest unmarried daughter” like

Emily Dickinson, who stayed in her parents’ home throughout

their dying years, and wrote her poems shuttered in an upstairs

bedroom.

But even though our parents are more likely than ever to live

long in fragile health, we baby-boom sons and daughters are

often badly equipped to help. Many of us no longer live close

by or in extended families like my South African sheep-farm-

ing relatives, whose old folks would move to a smaller cottage

when the son took over the farm and would help with grand-

children until they needed help themselves. Thanks partly to

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katy butler

increased divorce, 37 percent of baby-boom women are single;

most rely on their own paychecks and many are poorly pre-

pared for their own retirements. Married women aren’t neces-

sarily better off: few husbands still earn the breadwinner wages

that in the 1950s and 1960s allowed many working-class and

middle-class wives to stay home or work part-time while tak-

ing care of children, grandparents, parents, and parents-in-law.

Men do more than they once did, but women still do most of

the hands-on caregiving.

I was among the comparatively lucky ones. I had no children

who needed me. I wasn’t in debt. I owned a home and was cov-

ering its mortgage by renting it out while living with Brian. He

was healthy, and his two sons were away at college and poised

at the brink of adulthood. My work as a freelancer was flexible

enough to let me drop everything for a week or two—without

pay, that is. But I was time-stretched and money-stretched in

ways that my mother and my grandmothers had not been.

I’d spent half my life in California, the land of backbreaking

mortgages, benefit-free independent contractor gigs, expres-

sive individualism, and personal reinvention, where the word

“should” was a no-no and family obligations supposedly optional,

like contracts written in water. No image of filial devotion from

my storehouse of cultural clichés could guide me. Night after

night, I was torn between the overpowering call of my blood

and my life as a writer. When in California, I would worry about

my parents and yearn to be with them; when in Middletown, I

would worry about money and work, miss Brian, and want to

go home. I didn’t know which felt worse: abandoning my life or

abandoning my parents. And so, for what turned out to be eight

years, I would alternate between the two.

Before my father’s stroke, I would answer the phone only

when I felt like it. Afterward, I picked up no matter when it

rang. When I woke before dawn with Brian snoring softly at

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my side and my brain wildly spinning solutions to my parents’

problems, I would try to lull myself back to sleep repeating the

closest thing Buddhism has to a prayer, the Metta Sutta:

May I be peaceful and at ease

May I be filled with loving kindness

May I be free from fear and danger

May I be happy.

When that didn’t work, I would sometimes try to remember

the Twenty-Third Psalm or the Russian Orthodox “Jesus prayer”

that I read long ago in
Franny and Zoey,
even though its theological underpinnings were alien to me:

Lord Jesus Christ,

Son of God

Have mercy on me,

A sinner.

I flew to Connecticut three times that first year—in early

spring, midsummer, and fall—each time trying to make things a

little better. On my first visit in March, I sat with my parents as I

always had, at their breakfast table. My father fed himself slowly

with a special spoon. A suction device anchored his plate to a

rubbery blue placemat. My mother had pinned a stretchy black

ribbon to a checked dinner napkin, which he looped with dif-

ficulty over his head, protecting his shirt from his dribbles while

saving them both from the humiliating sight of a plastic disabil-

ity bib. When the meal was over, he carefully folded his napkin

up with grave attention, patting it back into shape with the back

of his only hand. His continence had returned—he no longer

needed to wear Depends at night or a thick pad during the day.

He had trouble finding words and finishing sentences. The father

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katy butler

I’d known had improvised, adapted, and overcome. Now the only

phrase he said easily was, “I can’t,” and he said it often.

My parents seemed stuck together with glue. My mother

had long called impatience one of her “besetting sins,” and she

leaped to finish his sentences for him and did things for him

before he could try them himself. When I watched her brush-

ing his teeth after breakfast, even though he’d seemed handy

enough with his spoon, I squirmed and said nothing. I dared

not cross her.

I was a believer in experts and mutual-help groups. I found

a free caregivers support group at Middlesex Hospital and took

my mother there. Because Medicare funds mainly one-to-one

interactions between patients and medical staff, the hospital

was not reimbursed. Some of the most important and least glam-

orous help our family got took place like this, in odd-shaped,

underpaid, and unpaid interstices in the health care system.

My mother sat uneasily with me in the crowded, window-

less room in a circle of Middletown women caring for hus-

bands debilitated by cancer, stroke, and other incurable but not

promptly fatal illnesses. A nurse led the group. One wife, with

short red hair and a measure of ease, said she got regular mas-

sages, paid a home health aide to give her a weekly afternoon

off, and had a cell phone so that she could leave the house

without worrying too much. When it was my mother’s turn,

she said she was overwhelmed. I slid in an oblique reference to

her brushing my father’s teeth. The woman with the cell phone

raised her eyebrows and wondered if my mother wasn’t over-

doing it. “Simply listening to other women tell how they were

coping with ailing husbands—some angry, some frustrated, and

really venting—was an eye opener,” my mother would write to

my father’s three elderly sisters in South Africa. “I came away