Knocking on Heaven's Door: The Path to a Better Way of Death (29 page)

Now ally and foe exchanged masks. Medicine looked more like

the enemy, and death the friend. The next time she took my

father to the internist, Dr. Fales told her quietly, “You don’t have

to do everything they say.”

She cancelled an appointment with my father’s neurolo-

gist, refused another scan of my father’s brain to see if he’d

had more strokes, and declined to put him on Aricept for his

dementia or on Coumadin, an anti-stroke drug that carries a

risk of uncontrolled bleeding and requires close monitoring and

limiting one’s intake of dark green vegetables. When Dr. Rogan

asked her to bring my father in for two separate heart tests, each

requiring hours of fasting, she agreed to only one. She cancelled

all further appointments with Dr. Rogan and agreed to only two

telephone pacemaker checks a year. “I take responsibility for

whatever,” she wrote. “Enough of all this overkill! It’s killing me!

Talk about quality of life—what about mine?”

Meanwhile, I was spending my Wednesday evenings in a con-

ference room at the Mercantile Building in downtown San

Francisco, listening to people who worked mostly in high-tech

give short, extemporaneous speeches, and clapping enthusiasti-

cally for them at all the right moments, as they did for me. At

the suggestion of my youngest brother Jonathan, who’d once

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been a car salesman, I’d enrolled in a Dale Carnegie course

in effective human relations and communication. I was now

managing my parents’ investments and trying to plan for their

uncertain future, and after six years of long-distance caregiving,

I felt isolated and stale. I hoped that the training would teach

me to get along better with Brian’s sons and to make a good

impression on the editors I was courting in a shrinking maga-

zine market. I did not tell my mother:
Dale Carnegie
had long

been my father’s contemptuous shorthand for glad-handing,

commercially driven, overly positive American insincerity.

Many of my fellow students at Dale Carnegie were younger

than I: engineers born in India, Vietnam, or Europe and work-

ing here on H-1B visas for software and cell phone companies.

Each week we practiced remembering and using people’s first

names (“the sweetest sound in the English language!”); being

generous with praise; and asking others about their hobbies,

pets, and children but not their politics, sexuality, or religion.

We were told to “cooperate with the inevitable.” We learned

that the only way to win an argument was to avoid one. We

learned to say, “If I were in your shoes, I’d feel exactly the same

way.” We learned not to criticize, condemn, or complain. After

the course was over, I got a quick haircut at a San Francisco

Supercuts and flew east.

The weather in Connecticut was sharp and clear. Toni picked

me up at the airport in my mother’s white Camry and drove us

to my parents’ home on Pine Street as the sun set. My mother

opened the door; my father, sitting blankly in the living room,

did not get up, and for the first time ever, did not smile when

I kissed him. I told my mother how nice the house looked and

remarked on a whorl of dried twigs she’d twisted into a wreath

and hung on the fireplace wall above a narrow, bleached horse’s

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skull she’d found long ago in the Maine woods and a copy of an

Albrecht Dürer engraving of a horse’s head. She was wearing,

as always, the silver hoop earrings she’d bought long before in

Vermont. Her white hair was neatly gathered at the nape of her

neck, camouflaging the bald spot on her crown, and she looked

tired, but not too tired to cast an assessing eye over my hair and

clothes. I was in baggy blue jeans, white athletic socks, running

shoes, a no-iron white shirt, and a dark-blue fleece jacket. My

dyed brown hair, newly cut, ballooned over my forehead in a

bulbous helmet. As she and I twittered through our first hellos,

my father said little, beyond an occasional, “I don’t know what

you’re talking about!” or “What are we doing now?” Within min-

utes, my mother and I were acting as if he weren’t there.

My father’s main expression now was one of perpetual confu-

sion. When dinnertime came, he looked anxiously at my mother

and would not move toward the kitchen until she gave him her

nod. She was his true north now: he did not like to have her out

of his sight.

I enjoyed watching him eat. There I saw a competence that

had disappeared elsewhere. He reminded me of an ancient par-

rot, slow, silent, and deliberate, using his thumb and forefinger

like a beak to methodically chase the last leaf of lettuce around

his plate. My mother cleared away the remainder of the chicken

breasts she’d sautéed in butter and finished with shallots and

a dash of Vermouth. I handed him a glass of water and put in

front of him the square blue china dish holding his pills and

vitamins. He picked up the glass and poured the water into the

pill dish and watched gravely as water overflowed onto table

and floor. He stopped only when I took the glass from his hand.

From then on I would hide the water glass behind my back,

hand him the pills, tell him to put them in his mouth, and then

hand him the water glass and tell him, like a dog, to drink.

As I sponged up the water, I noted my father could no longer

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rise easily from his chair—a warning sign, I would later learn,

of looming total debility. He grabbed the edge of the table with

his thumb and forefinger and rocked his body forward and back,

oscillating perilously until he had enough momentum to thrust

himself upright. I wondered how long it would be before he

became bedridden, and how we would handle him then. He

wobbled and tottered. His grip, when I anxiously took his hand

to shepherd him up the stairs, was still strong and warm. I could

feel his life force, still coursing. Wounded as he was, he was still

emotional ballast for my mother and for me.

Once our procession arrived at the upstairs bathroom door,

I turned away, leaving him and my mother to their highly tax-

ing and to my mind, unnecessarily complex, bedtime ritual. My

mother seemed fixated on the notion that thoroughly brush-

ing, flossing, and water-picking my father’s expensive dental

implants, according to a strict protocol, still mattered.

The bathroom door closed behind them. I turned away and

before heading down to the kitchen to wash the dishes, paused

at a bend in the stairs. Through the bathroom door and the thin

Sheetrock walls, I could hear her shouting at him. There was a

short silence and then a cry. My father was whimpering like an

exhausted, demoralized, and beaten child. I will never forget

that cry. Later my mother would admit, in passing, that there

had been times when she’d “clouted” him. (She was not alone:

5 percent to 10 percent of long-term caregivers for people with

severe dementia admit to similar physical abuse, often out of

depression, exhaustion and frustration.)

In her fifties, after she survived surgery, radiation, and breast

cancer, my mother liked to say that sometimes the worst things

that happen to you turn out to be the best things. She believed,

like Ernest Hemingway, that the world breaks all of us and

afterward some are strong in the broken places, and that she

was among the strong. She did not say that now. “Some griefs

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augment the heart, enlarge. Some stunt,” wrote the poet Jane

Hirshfield. My father’s decline had at first forced my mother

to become more accepting and me more openly loving. Now I

stood paralyzed and watched as caregiving destroyed my moth-

er’s moral fiber and corroded her soul.

When bioethicists debate life-prolonging technologies, their

moral and physical effects on people like my mother rarely

enter the calculus. But during the last year of my father’s life,

Ohio State University released a study of the DNA of family

members who were looking after relatives with dementia. It

showed that the ends of their chromosomes, called telomeres,

had degraded enough to reflect a four- to eight-year shortening

of life span. By that reckoning, every year that the pacemaker

gave my irreparably damaged father took from my then-vital

mother an equal year.

After breakfast the next morning, while I was dialing a home

health care agency in West Hartford from the kitchen phone,

my father appeared at the doorway, pointing downward with a

troubled look. I herded him toward the downstairs bathroom,

ignoring my mother as she insisted he didn’t need to go, and

continuing to ignore her as she shouted, “Go upstairs!” to the

toilet with the special Toto rinsing attachment that automati-

cally cleaned off his bottom. My father barely got onto the

downstairs toilet in time to sit down. My mother entered the

small space and pulled him up to clean off his bottom. He peed

on the floor and sat down again to shit. I turned away, nearly

retching, and ran upstairs, where I got my mother a clean,

warm, wet washcloth. She was still shouting at my father as she

took it. I put my hands gently on her shoulders, full of love and

force, and called her by her first name, saying, “Val. Stop.”

It was the first time I’d physically confronted her since I was

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a teenager and refused to let her slap me any more. She turned

to me in a fury, a poor, shrunken, horrible, exhausted, demor-

alized old lady. If she’d been forty years younger, she’d have

“clouted” me. She dropped the washcloth and walked out of the

bathroom in tears. And then the enigma that was their marriage

once again blindsided me. My father—who by then had sixty

years of practice in selectively tuning my mother out—caught

my eye, shrugged, and gave me an amused, almost conspirato-

rial naughty-boy smile.
Oh Well!
he seemed to be saying.
What
can you do? That’s your mother for you!

Once the drama was over and my mother had cleaned up

the mess and gotten my father dressed, he took his custom-

ary seat in the living room in a heavy, untippable, wrought iron

chair my mother had brought in from the garden since my last

visit. There he sat for hours on his waterproof cushion, hold-

ing a book in his lap, not turning the pages, sometimes doz-

ing, sometimes looking up to watch the leaves fall. He was not

hooked up to tubes and not in the sort of florid agony that some

people seem to require before they think it’s morally okay to let

someone to die naturally. He was just miserable. For his eighty-

fifth birthday, I’d sent him DVDs of a multipart PBS documen-

tary about the Second World War. He’d apparently loved them,

but after playing them once, my mother had passed them on to

another retired Wesleyan professor, who was caring for his wife

who had Alzheimer’s.

I made a great show of insisting my father come out on the

deck with me, and as if it mattered, help me sweep away the dry

leaves, eternally falling.

I had only one item on my agenda for my visit: getting my

mother to hire more help. I had done the calculations: even with

the most profligate hiring of aides, their money would last them

three to five years. It was, as far as I could see, the only option.

My mother would never put my father in a nursing home. I would

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never call an elder abuse hotline. She’d tried an adult day care

program recommended by her support group, but my father had

become disoriented and disruptive and refused to go back. She

reluctantly agreed to let me try to find someone to supplement

Toni. “I know I need it,” she wrote in her journal. “But I jib at my

loss of privacy, and also a thought that I do it best.”

When the young West African woman from the Nightingale’s

home health agency arrived for her first four-hour shift—their min-

imum—the silence was thick. My mother could not abide having a

stranger in the house, even one who quietly read in the living room

over the dinner hour. She had grown up witnessing the suffering

of black servants at her own mother’s hands in the formal, intimate

cruelty of the old South Africa, and she bridled at any reminder of

the place she’d fled. We were entering white water. The old rules

no longer applied. If she didn’t let go, we would drown.

At lunch, my mother had me turn my head from side to side.

She said I needed to get that haircut fixed. And then, while my