Knocking on Heaven's Door: The Path to a Better Way of Death (23 page)

KnockingHeaven_ARC.indd 140

1/31/13 12:27 PM

knocking on heaven’s door

141

five-thousand-dollar bequest for a grandchild’s car or first year

at a community college, the twenty-five-thousand-dollar loan or

gift toward a house down payment, or, in wealthier families, a

hundred thousand dollars toward starting a business, paying off a

mortgage, or covering tuition for college or graduate school.

“We are now in a post-stroke mode and have to look after our-

selves,” my father wrote to me elegiacally in the late spring of 2006:

Before we depended on old Jeff but now Val is strictly in com-

mand. If you look at this house and garden it really is beauti-

ful. Val has gone to enormous trouble and I am afraid she has

done it all. But a few things I have done. In particular, I have

taken on the sorting of sand and gravel. It really was a terrible

mess and I set myself the task of sorting it out. If you walked

along the deck you would see what it is that I am talking

about. So my dear, you are the recipient of a tortured piece,

by a man who tries to sort things out on the ground.

What did it feel like, I wonder, to peer out at the world through

the shifting keyholes of that generous soul and educated mind

with a black spot in his field of vision and his ears stopped with

hearing aids that he could no longer put in without help? What

was it like to have holes appear and disappear in memory like film

jammed in a projector and melting? What was it like, after a life-

time of overcoming hardship and adapting to limitation without

complaint, not to recognize a road he’d walked for forty years or to

watch his hand write the word “rhetoric” over and over?

And yet, my father in ruin was in some ways more beautiful to

me than my father intact. I could see more clearly the outlines of

his soul. He let go, by necessity, of what Shakespeare called “the

bubble reputation,” and Ecclesiastes called vanity and vexation

KnockingHeaven_ARC.indd 141

1/31/13 12:27 PM

142

katy butler

of soul. He would never finish his book or his memoir, redeem

his delinquent boyhood, make his dead father proud, or eclipse

his better-known, long-resented, and now thoroughly dead older

brother Guy, the poet. My father could no longer strive and do.

He could only love and be loved. The race was run.

“When a fine old carpet is eaten by mice, the colors and

patterns of what’s left behind do not change,” wrote my neigh-

bor and friend, the poet Jane Hirshfield, after she visited an

old friend suffering from Alzheimer’s disease in a nursing home.

And so it was with my father. His mind did not melt evenly into

undistinguishable lumps, like a dissolving sandcastle. It was

ravaged selectively, like Tintern Abbey, the Cistercian monas-

tery in northern Wales suppressed in 1531 by King Henry VIII

in his split with the Church of Rome. Tintern was turned over

to a nobleman, its stained glass windows smashed, its roof tiles

scavenged for their lead, its church bells melted, its floor tiles

taken up and relaid in village houses. Holy artifacts were sold to

passing tourists. Religious statues turned up in nearby gardens.

At least one interior wall was dismantled to build a pigsty.

I’ve seen photographs of the remains that inspired Wordsworth:

a gothic skeleton, soaring and roofless, in a green hilly landscape.

Grass grows in the transept. The vanished roof lets in light. The

delicate stone tracery of its slim, arched, quatrefoil windows opens

onto green pastures where black-and-white cows graze. Its shape

is beautiful, formal, and mysterious. After he developed dementia,

my father was no longer useful to anybody. But in the shelter of his

broken walls, my mother learned to balance her checkbook, and

my heart melted and opened. Never would I wish upon my father

the misery of his final years. But he was sacred in his ruin, and I

took from it the shards that still sustain me.

KnockingHeaven_ARC.indd 142

1/31/13 12:27 PM

On June 4, 2006, my mother opened her journal after a

three-year hiatus. “Today, Sunday, a very disturbing devel-

opment in Jeff’s behavior,” she wrote:

He is repeating and repeating cleaning his teeth. It all

started on Friday when we bought a new water pick. Any

new procedure throws him, but today he was close to crazy

in the afternoon—kept going upstairs to the bathroom and

cleaning his teeth. I got him to do some cutting of vinca

minor in the front as he has done in the past. He took a

long time but managed to do a little. But as soon as he

got inside he started for the bathroom and began the tooth

cleaning. After supper he could not wait to go upstairs

again to clean his teeth.

KnockingHeaven_ARC.indd 143

1/31/13 12:27 PM

144

katy butler

My father’s neurologist had earlier told us that this kind of

repetitive behavior—previously confined to getting stuck like a

broken record on a repeated phrase, or checking and rechecking

the calendar—is called
perseveration.
It is commonplace among

the autistic and the otherwise brain-damaged. On nuclear imag-

ing tests, it correlates with decreased blood flow to the outer layer

of two folded outer bulges of brain behind the forehead called

the frontal lobes, especially an area called the dorsal prefrontal

cortex, where neurons act as traffic cops, switching attention

from one word or action to something new. Damage to the fron-

tal lobes may be the most tragic of all mental losses, because the

lobes carry out many functions vital to the empowered adult self:

the ability to act morally, to make decisions, to think through the

consequences of actions, to problem-solve, and to make a plan

and carry it through.

“Perseverence, perseverence, perseverence!!!!” my mother

continued in her journal, misspelling the word in her agony:

Oh God now it’s like he is totally insane, and I am not sure

of what to do next. I will wait for the morning and hope that

he has slept it off. I am anxious and upset and do not want

to have a sleepless night because of it. I will do my stress

reduction tape and hope it helps me, but I feel my blood pres-

sure must be sky high as a result of frustration with Jeff. He

just won’t listen but goes on with his OBSESSION. Is this

Alzheimer’s? It certainly is dementia.

I feel my life is in ruins. This is horrible and I have lasted

for five years. Sometimes I wish he would die and set me free.

She played the relaxation tape I’d sent her that night, returned

to her morning meditation the next day, and wrote in the journal

again in a calmer mood. She was attempting to control her impa-

tience and anger, and my father, she wrote, was much better for

KnockingHeaven_ARC.indd 144

1/31/13 12:27 PM

knocking on heaven’s door

145

it. She decided to accept what her life, and her husband, had

become. “I now acknowledge fully that the Jeff I married and

lived with for sixty years is no longer the same person,” she wrote.

“Jeff is querulous, anxious, and resentful and expects me to know

everything and attend, attend, to his needs. I try to respond in a

neutral way and simply get on with what I want to do.”

Other wives let go by taking off their wedding rings. One

found relief by thinking of her demented husband as a new

member of the family, an entirely different person from the man

she’d married. A woman of the Anishinabe tribe in northern

Minnesota held a funeral for her demented mother while she

was still living. “We lost the mother that we once knew . . . she

is the child now and I am the mother,” she told the social psy-

chologist Pauline Boss, who coined the term “ambiguous loss”

to describe what women like my mother were experiencing.

My mother did not tell me about that weekend. Only after

her death, when I read her whole journal, would I understand

how much she’d tried to shield her children from the misery

engulfing her and my father. She conducted her sacrament of

relinquishment alone.

She told me only that she was reading
Elegy for Iris,
John

Bayley’s obituary for his then-still-living wife, the brilliant Eng-

lish novelist Iris Murdoch, tracking her descent into dementia.

On the phone with me, my mother repeated the book’s most

famous phrase, from an unnamed woman who told Bayley that

life with her demented husband was “like being chained to a

corpse.” She reread Edith Hamilton’s books about the Greeks,

and sent me a quote from Aeschylus: “And even in our sleep,

pain that cannot forget falls drop by drop upon the heart, and

in our own despite, against our will, comes wisdom to us by the

awful grace of God.”

*

*

*

KnockingHeaven_ARC.indd 145

1/31/13 12:27 PM

146

katy butler

On June 9, 2006, my mother found my father crumpled in the

driveway, moaning, unable to get himself up, one eye covered in

blood. She called 911. She’d gone down to the street with him to

bring in the garbage cans, and afterward she’d told him to walk to

the house alone while she visited a next-door neighbor. It was far

from the first time he’d fallen, but it was the worst. A CAT scan at

Middlesex Hospital showed cracked bones in his right eye socket,

plus evidence of a previously undetected stroke on the left side

of his brain near the back of the head that had probably occurred

in 2003. There were signs of a separate brain bleed behind the

cracked bones near his right temple. It wasn’t clear whether he’d

had a brain hemorrhage and fallen, or fallen and had a brain hem-

orrhage. Doctors sent him by ambulance to Yale-New Haven Hos-

pital, an hour away, to be evaluated for brain surgery.

The hospital, in the poor city of New Haven, was a train-

ing ground for Yale Medical School’s interns and residents.

Its emergency room, like those of most urban hospitals, was a

clinic of last resort for the uninsured poor. My mother stayed up

much of the night in a hallway outside the crowded ER, while

my father lay next to her on a gurney, tossing and muttering. He

waited nearly two days for a bed.

Yale—New Haven was ranked among the top 3 percent of U.S.

hospitals in ten advanced specialties that year, including neuro-

surgery, according to
U.S. News and World Report.
Sending him

there might have been a mistake. There is no necessary relation-

ship between the size and sophistication of a hospital and the

quality of its nursing care, and when you are frail, the simplest

touch from a good nurse can matter more than a high-tech spe-

cialty. I later discovered, in ratings assembled by a respected con-

sumer magazine from government data, that Middletown’s little

Middlesex Memorial hospital was rated the safest of the twenty

hospitals in Connecticut. Yale-New Haven ran fourth-to-last, with

high rates of hospital-acquired infections and readmissions not

KnockingHeaven_ARC.indd 146

1/31/13 12:27 PM

knocking on heaven’s door

147

long after discharge and low scores on doctors’ and nurses’ com-

munications with patients about important things like how to take

care of sutures and what pills to take once they were released.

After my mother left to get some sleep, orderlies failed to

notice that my father had only one arm and did not help him to

eat or drink. Neither she nor I knew then that many hospitals

have become, in the words of one bereaved-son-turned-investi-

gative-journalist, places that provide “bodily repair services under

the direction of independent physician-scientists,” where over-

stretched nurses provide monitoring but very little old-fashioned

nursing care. My father grew hungry, thirsty, and disoriented,

lashing out at things that weren’t there. He was suffering from

what doctors call “hospital delirium,” a state of temporary halluci-

nation, confusion, and disorientation that affects about one third

of hospital patients over seventy. It can be triggered by not having

one’s hearing aids or eyeglasses, by medication errors or anesthe-

sia, and by a toxic hospital environment that somehow passes for

normal: noise as loud and constant as a highly trafficked street;

being wakened in the middle of the night for blood pressure read-

ings that could be done in daylight; harried aides; lack of needed

help to drink water or eat the terrible food; an absence of reassur-

ing human touch; not being spoken to by name; and windowless,

eternally lighted rooms that, like casinos, eliminate all sense of

day and night.

On top of this, hospitals today usually lack the three heal-