Knocking on Heaven's Door: The Path to a Better Way of Death (17 page)

month, she stopped seeing the social worker and returned to her

default setting: stoic, frugal self-reliance. Moment-to-moment

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caregiving had damaged her ability to think strategically and flex-

ibly—never her strong suit in any case. “I feel so much better,

more myself with the old energy,” she wrote in her journal after

she let the social worker go. “There are places in my life that still

feel shut off and cramped by my circumstances,” she went on. “I

need to face plans for when things get worse—what if Jeff needs

to go someplace to be looked after?
Where?
I also need more space for myself—away, alone, not caring for J. all the time. I miss that.”

I drove her to western Massachusetts to check out one last

old-age place: the cream of the crop, I’d been told, a retirement

community with three levels of care, founded by retired profes-

sors from Amherst. A friend of mine had successfully placed her

disabled sister there. The buildings were set among empty green

hills and were overheated, spotless, and upholstered, like a nice

Radisson. The vegetables at lunch were, as usual, overcooked; a

van was available for trips to a small town somewhere out of sight;

the apartments had wheelchair-accessible showers and no decks

or doors opening to the natural world. I could not imagine my

mother there. With my support, she decided to continue tough-

ing things out at home. She would meet her future there when

it came.

“I still feel like part of me is back in Connecticut with you,”

I wrote her after I got back to California.

This was a terribly important visit. I stopped being ambiva-

lent, or resisting, or fearing the change in our relationship. I

do not see helping you as a burden. I see it as a responsibility

that is based in deep love, and therefore it brings joy and sat-

isfaction. It is part of my own passage to adult life.

One morning you were in a panic and flying off the handle

and for the first time, perhaps, I saw you with the eyes of com-

passion—I could see that you were afraid and overwhelmed—

and my reactive fear and anger disappeared. Where do these

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gifts come from, these final growings-up? I am honored to

help you the best I can, the way you have helped me, darned

my socks, put up my hems, and listened to me.

In November 2003, my father’s speech therapy was stopped,

and with it, his work on “Recall.” Even though most of the sky-

rocketing increase in Medicare costs is due to advanced and

expensive medical technologies (like pacemakers, defibrillators,

heart-valve surgeries, chemotherapy, dialysis, and the like), Con-

gress, in an attempt to cut costs, limited payments for hands-on

speech and physical therapy that year to about $1,600 each. After

an uproar from constituents, it suspended the limit—but reiter-

ated Medicare’s long-standing practice of providing coverage only

while patients showed improvement, and not to keep them from

slipping back. (To settle a class-action lawsuit, Medicare agreed

to liberalize this practice in late 2012.) My father had stopped

improving. Medicare had spent roughly $30,000 on getting him

through his stroke, installing his pacemaker, and fixing his hernia.

It paid about $7,300, all told, for his speech therapy, perhaps the

greatest contributor to the quality of his extended life.

Angela, the speech therapist, generously continued to come

without pay on Saturday mornings, inspired by my father’s desire,

she told me later, “to continue to work and improve himself against

all odds.” But she was pregnant with her first child, and in the

spring of 2004, close to the end of her pregnancy, she had to stop

coming. My father’s computer coach begged off, too, after telling

my mother that my father was forgetting everything he learned

from week to week. My mother took over the computer, set up her

own e-mail account (her passcode was Harpy1) and relegated my

father to eking out his letters by hand. She put “Recall”—the last,

unfinished, flowering of his literary life—into a filing drawer. Toni

watched with deep dismay and said nothing.

“He looked forward to the rapport with the young man, even if

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he didn’t need to know anything more about the computer,” Toni

told me later. “If it was me, I’d have said, ‘Do you mind coming

for the hour anyway?’ It was good for Jeff’s emotional wellbeing.

Your mother and I, we were caretakers, women, and this gave him

a chance to be with another man. Your father stopped using the

computer completely then—it was something that stimulated his

mind, and your mother snatched it away from him. And then the

autobiography stopped, and he left me in Siena, with blood run-

ning down him, and he didn’t know his arm was blown off.”

Neither my mother nor I had the wit to take “Recall” to a copy

shop, make a little spiral-bound book of it, and arrange a read-

ing for their friends. My mother was too busy taking care of

my father, and perhaps too protective of his dignity to put him

on display. I was too busy living my split life and trying to peer

beyond the headlights into the dark landscape before us.

My father accepted what he could not change. But he paid

a price. When my mother asked him one day whether he was

depressed, he told her yes.

He was “living too long,” he said.

She never told me this. But she did tell his neurologist, a

Dr. Margaret O’Donohue, and my father acknowledged to the

doctor that he’d said it. Dr. O’Donohue wasn’t sure if he still

thought that way and tentatively suggested an antidepressant,

but my parents seemed reluctant to explore it. Depressed, iso-

lated people are more likely to fall prey to dementia, but I did

not know that, and I wasn’t in on the conversation in any case.

One morning in the kitchen, my father watched me unstack-

ing the dishwasher. He said, “This house is full of things I used

to do.” There was a silence. He looked straight at me with a

great vehemence and said, “I am
not
going to get better.”

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My father didn’t just fail to get better. He got worse. The let-

ters he wrote me grew shorter, the handwriting wobbly, the

little faces in the text harder to make out, the lines increasingly

speckled with crossing-outs, strange repetitions, meaningless sen-

tences, and odd word choices. One read, almost in its entirety:

I wish I knew the precise shape this letter was going to take.

I want to write as clearly as I can without messing around. . . .

I have put pen to paper with dubious results. I am particularly

upset that I am nowhere near the shape I want to be. I am having

lots of trouble writing and your mother is understandably upset.

I felt my heart sink, but I did not linger on what this might

imply. Another letter read, “You will notice that I am full of rhet-

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oric most of the time, full of rhetoric in the most rhetorical way.

It is very repetitive. But you do try.”

On the last day of 2003, about a year after installation of the

pacemaker, my father briefly lost most of his already limited

capacity to speak, and my mother took him to the hospital for

a new round of tests. The tests turned up nothing new except

another urinary tract infection—a common cause of confusion in

the elderly—and after some days his speech returned. They kept

on keeping on: she took care of him and gardened and checked

out videos from the public library. Together they watched
The

Misfits, On the Waterfront,
and
Bridge over the River Kwai
. My father wrote me a few letters, more coherent ones, catching me

up on news: he’d gotten $12,000 worth of dental implants. He’d

watched the neighbors’ grandchildren, visiting from England, try

to retrieve a toy plane stuck in a tree. Ben Carton, a former stu-

dent who was almost a surrogate son, had made his yearly visit

with his young family. There’d been a visit from M’ellen Kennedy,

one of Jonathan’s former girlfriends, whom my mother had taken

under her wing as a teenager and nicknamed Peaches. Another of

my father’s beloved former Wesleyan students, a financial wizard

who’d retired early and earned her pilot’s license, visited during

commencement and brought my parents a bottle of wine.

There was more that my father did not, perhaps could not, tell

me. One day, my mother said, he forgot his way home from the pool

and wandered down to Pelton’s Drugs on Main Street. Not long

afterward, he disrobed at the Wesleyan poolside rather than in the

locker room, and someone who’d previously helped him on with his

shirt called and asked my mother to come and pick him up.

When my worried mother took him back to the neurologist

in January 2004, he couldn’t recite the months backwards from

May to January, even with prompting. When asked to hold up

the number of fingers corresponding to the number of letters in

the word “dizzy,” he knew he needed to signify “five,” but was

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katy butler

totally flummoxed by how to do so with his hand. A later brain

scan would discover evidence that he’d had a second, unde-

tected stroke around this time, one that damaged the left pari-

etal lobe of his brain, which is just beneath the crown of the

head, at about the place where a yarmulke goes. The parietal

lobe is a switching station, and it synthesizes images, sounds,

and bodily sensations so that other parts of the brain can plan

bodily movements and determine, for instance, how the hand

and fingers should be configured when grasping an object.

The neurologist noted a “gradual decline” layered on top of

his stroke damage, and wrote in her clinical notes that it was

“conceivable that he has a mild dementia.” She pondered put-

ting him on Aricept, long the best-selling drug for dementia,

which at the time cost between a hundred and fifty and two

hundred dollars a month. Aricept generated two billion dollars

in annual sales for its makers, Pfizer and Eisai Pharmaceuti-

cals, before it lost its patent protection in 2010. Although it can

be dramatically effective for a handful of patients, caregivers

on the whole find it minimally effective in improving practical

functioning, and some doctors prescribe it mainly to reassure

relatives that “something is being done.”

In retrospect, I think my father was showing signs of what

I would later learn to call vascular dementia. Clots as narrow

as a single human hair were lodging in tiny blood vessels in his

brain, killing clusters of neurons by depriving them of oxygen.

The damage affected his frontal lobes, the seat of planning and

foresight directly behind the forehead, and his midbrain, which

helps perform physical actions in sequence, like knowing how

to push buttons in the right order on a microwave or how to

put on one’s socks and shoes. The damage layered itself upon

the blunderbuss destruction of at least two strokes, the mild,

global brain atrophy that had occurred beforehand, and decades

of normal, but cumulative, age-related cognitive decline.

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*

*

*

In September 2004, three years after the stroke and two years

after the insertion of the pacemaker, my mother celebrated her

eightieth birthday in a rented cottage in Deer Isle, Maine. Rent-

ing the place—in fact, fussing over her birthday at all—had

been my idea. But at the last minute I called with a familiar

excuse: I was behind on a deadline. I sent her, instead, an eight-

page homemade card, featuring Buddhist quotations, a photo-

copy of the treasured family photo of my mother tucked into my

father’s coat in South Africa, and these lines from a painting by

Paul Gauguin: “Where do we come from? Where are we going?”

The great tide that had lifted us out of our small selves had

washed back. I’d become myself again—impulsive, fickle, and

skittish about intimacy, especially with my mother. She went to

Maine anyway, with my father and one of her closest friends. If

she was angry or disappointed in me, she did not say.

After many tries, my father succeeded in writing her a short

birthday letter by hand, decorated with a wavering line drawing.

“You will notice I have given you the most elegant legs,” he wrote