Knocking on Heaven's Door: The Path to a Better Way of Death (22 page)

sites hawk acai berries and selenium, science has not so far found

a way around the eternal truth that propelled the Buddha into a

lifetime of meditation and that I blithely recited in monasteries in

my forties:
there is no way to escape growing old.

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*

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To slow, stop, or hopefully even reverse his descending blind-

ness, Toni drove my father once a month to an ophthalmologist

in Hartford who injected his right eyeball with an expensive

drug called Macugen (pegaptanib), made jointly by Pfizer and

a smaller company called Eyetech Pharmaceuticals. It wasn’t

terribly effective. Not long afterward, the ophthalmologist tried

out another drug, Avastin (bevacizumab), made by a Bay Area

biotech company, Genentech.

Licensed as a chemotherapy for several cancers, Avastin

retards the growth of blood vessels, such as those that feed

tumors. It was sold in bulk in big, sealed plastic bags. It cost

only fifty dollars per injection when divided up by specialized

“compounding pharmacies” into microdoses for the eye. At a

professional conference, doctors who’d tried it told my father’s

ophthalmologist that it was much more effective than Macugen,

and so he switched. Then Genentech released a much more

expensive drug, Lucentis (ranibizumab), specifically designed,

approved, and promoted for macular degeneration. Many doc-

tors continued to use the cheaper Avastin “off-label” (that is, for

a purpose not licensed by the Food and Drug Administration)

rather than switching to Lucentis (which later studies proved

no more effective than Avastin), especially for their poorer and

more poorly insured clients. But my father had Medicare and

good supplementary insurance, and Lucentis was the officially

approved treatment, so my father’s doctor went with Lucentis.

Each Lucentis dose cost Medicare about $1,560 and my

father’s supplemental insurance about $389—roughly the cost

of a year of my father’s speech therapy. The total charge per

forty-five-minute office visit averaged $2,127, of which about

$178 went directly to the ophthalmologist for giving the shot.

In 2005 and 2006 alone, fourteen months’ worth of Lucentis

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injections cost Medicare $18,723 and my father’s supplemen-

tal insurance $4,678, for a total of more than $25,000—money

that would probably not have been spent had my father died a

timely natural death. Medicare allows doctors to mark up the

cost of drugs they use by roughly 6 percent, so the ophthalmolo-

gist, who did not respond to my requests for billing information,

may have earned an additional three dollars each time he used

Avastin and up to $120 extra when he used Lucentis.

The treatments did not help. According to the doctor’s

records, my father’s sight got dramatically worse. Month after

month, Toni said, he couldn’t make out a single letter on the

eye chart. She thought the visits did more for the bottom lines

of the doctor and the drug companies than they did for my Dad.

By then, Toni and my mother were regularly ferrying my father

to a cavalcade of doctors. All ran tests, wrote reports, kept dutiful

records, billed Medicare, tracked my father’s decline, and did little

to coordinate with each other. A technician from Middlesex Car-

diology Services checked the pacemaker once every three months

by a remote phone hookup, and twice every year, my mother and

father went in for an office visit with Dr. Rogan to make sure his

heart and his pacemaker were still functioning properly.

My father wrote me fewer letters. When I asked to speak to

him on the phone, he shouted out testily, “What for?” and fumbled

with the receiver. He could no longer place a phone call on his

own. For a while I shouted back, “I love you,” and then I gave up.

The functioning of the brain is influenced by shifting tides

of neurochemicals, and my father’s mind grew temporarily

sharper—this is what’s so confusing about dementia—when he

was in a buoyant mood. In the spring of 2006, I published a

freelance article in the science section of the
New York Times
—

my first for the paper—and got a short, excited handwritten

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note from him. “I am writing to you in a great hurry to catch you

before you land here,” he wrote. “We are delighted with your

Times
article about sibling violence. Yesterday I spent the whole day thinking of it.

“The idea is first class—the taking of an ordinary idea and

seeing what can be done with it,” he went on. “I was intrigued

at your using the example of Cain killing Abel. It is a marvelous

example of brothers going at each other.”

He’d even ventured the sort of pedantic editing that had

demoralized me when I was younger. He asked for a defini-

tion of “siblicide,” pointed out what he called “mixed up lan-

guage” in a sentence he didn’t like, and said he was baffled by

my unexplained reference to Craigslist. “Is it some kind of list

defined and classified on some basis and mixed up with a Web

site? These are things to look out for.” My heart lifted. I had,

for a moment, a better version of my old father back. Not bad,

I thought, for a stroke-ridden man of eighty-three who’d rarely

used the Internet. I was as proud of him as he was of me.

When I had breakfast with him in Middletown two weeks

later, however, the neurological weather had changed. He

slumped more and spoke less. He no longer helped my mother

set the table. Every now and again, his left eye would go dull

and wander, as though a cloud was passing through his brain,

then he’d refocus and pick up his spoon again. He needed help

looping his blue checked napkin over his head on its stretchy

black ribbon, and he didn’t fold it and pat it and put it away

ritually after breakfast any more, leaving it crumpled instead for

my mother to put away. He followed her from room to room and

hovered about her in the kitchen, a phenomenon I later learned

was called “shadowing.”

The pacemaker kept on ticking.

*

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*

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Leaving my father behind with Toni, I took my reluctant mother

(who hated the word “dementia” almost as vehemently as she hated

thinking about the future) to see a counselor at the closest Alzheimer

Association’s office, near New Haven. The counselor showed us a

set of charts of declining mental function. They reminded me of

stock market trajectories in a series of bad years, squiggling ever

downward, with the stroke victims falling abruptly down staircases

after each “cardiovascular event” and the Alzheimer’s sufferers trun-

dling more gently down sloping foothills. My father seemed to be

failing in both ways at once: his plateaus were sometimes followed

by sudden drops and sometimes by gentle declines. I looked at the

charts and wondered: Should I keep nagging my mother to extend

Toni’s hours or even, God help us, to put him in an adult day care

program? Did he have Alzheimer’s disease as well?

Given how much is unknown about the more than fifty causes

and risk factors of mental decline and dementia—among them

obesity, depression, surgery, alcoholism, cardiac surgery, che-

motherapy, diabetes, cells going haywire, a high-fat diet, genet-

ics, a sedentary life, social isolation, depression, and just plain

old age—my last question was probably irrelevant. Like can-

cer, “dementia” remains a catchall label rather than a diagnosis,

sheltering a miscellany of poorly understood diseases, maladies,

and age-related deficits under one tattered umbrella. It is to the

twenty-first century what tuberculosis was to the nineteenth

century and AIDS to the twentieth: a widespread, dreaded,

fatal, and incurable pariah condition, filled with shame.

On the advice of the Alzheimer’s counselor, I went to Staples

and bought my parents two small whiteboards, one to tack on

the door of the upstairs study, and another for the kitchen. My

plan was to have my mother post their daily schedule there,

thus reducing the number of times my father asked her over

and over about their plans. She took the one downstairs for her

grocery lists, and put the other one in an upstairs closet.

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Half a billion federal dollars are spent each year on Alzheimer’s

research, but an estimated 20 percent to 20 percent of dementias

are not caused by classic Alzheimer’s and will not be fixed even if

the elusive cure (or cures) for that enigmatic malady (or maladies)

is ever found. (All dementias not otherwise classified are now

lumped into the Alzheimer’s diagnosis.) “Dementia” is a practi-

cal term: it means simply that brain deterioration has reached a

tipping point and the sufferer can no longer function safely with-

out help. Much about it is not well understood. And while hip

joints can be replaced, and the heart’s clogged tubes and failing

pumps can be reamed out and reinforced with artificial parts, the

aging brain is too complex, gelatinous, and delicate to fix like a

machine. Neurons die and don’t come back. Despite repeated

hopeful scientific announcements of breakthrough drugs, new

diagnostic tests, and genetic discoveries, there remains no pace-

maker for the brain, no penicillin, and no Botox.

Dementias can be avoided more easily than cured. A quick

Internet search suggested that if I wanted to escape my father’s

fate, I should become a happy, hardy vegan who weighs less

than average, has normal blood pressure, drinks coffee or tea, is

literate, well-off, and well-educated, keeps up with friends and

interesting hobbies, goes to church, gives to others but not too

much, takes ibuprofen and estrogen, drinks red wine but not

too much, exercises hard, avoids salt, sugar, saturated fat, and

white flour, has a lucky gene associated with longevity without

dementia, and was capable in my twenties of writing a complex

and coherent life narrative.

My father had exercised regularly and eaten healthily. He

had normal blood pressure and had been rangy, literate, well-

off, and well-educated. He kept up with his friends and inter-

esting hobbies, gave to others but not too much, drank tea and

coffee, and had certainly been capable, in his twenties, of writ-

ing a complex and coherent life narrative.

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Maybe it is better to die before dementia strikes.

The Alzheimer’s Association, in service of one of its primary

missions, which is to promote expanded funding for research, has

long promoted the notion that Alzheimer’s is “not normal aging.”

(Research dollars don’t go to conditions but to diseases, which

by definition have potential cures.) But although a few rare vari-

ants strike early, the fact remains that longevity is the biggest risk

factor for cognitive decline and for most dementias, including

Alzheimer’s. The damage hits home hard after eighty: only 9 per-

cent of those seventy and over have dementia, while among those

eighty and over, at least one third do. For those who reach ninety,

the chances of leaving this world lucid become little better than

a coin toss: more than 41 percent of those ninety and over have

dementia, at least another 10 percent to 15 percent have mild

cognitive impairment, and only one in two hundred has no trace

of cognitive decline. Each medical advance that fixes the body

without helping the mind increases widespread survival into

extreme old age and fuels the dementia epidemic.

From there the ripples spread. The democratization of longev-

ity, which amplified the dementia epidemic, is also responsible

for the caregiving crisis. Wealth, traditionally transferred from

one generation to the next, now flows instead into the treasur-

ies of assisted living chains, long-term insurance providers, home

care companies, and nursing homes. (Medicare, with rare time-

limited exceptions, does not cover long-term skilled nursing care.)

In the last five years of their lives, a quarter of the elderly now

spend all of their savings, including the value of their homes, on

caregiving and other out-of-pocket medical expenses. Forty-three

percent lose everything except their homes. Those with dementia,

of course, pay the most. This represents a stunning evaporation

of the capital transfers that traditionally helped families become

upwardly mobile or maintain their shaky perches in a belea-

guered middle class. Gone is the inherited family homestead, the