May 2020, ScientificAmerican.com 29
MAN TOLL
neighbors would bring her home. One time she got
out of the house (which had not been locked prop-
erly) and started shrieking in the street. At a family
Thanksgiving gathering she left our bedroom and
walked about the house naked. When things got
worse, she would sit for hours in a living room chair,
staring at nothing, the light in her glorious eyes
dead. I would talk to her, tell her about my day, with-
out the slightest reason to think she heard me or
would respond. There were two of us in the house,
but I was alone.
In January last year I fell, broke my knee and sev-
eral ribs, and had to be taken to a hospital. Our
daughter, Hannah, knowing neither she nor I would
be able to take care of her mother, found a good nurs-
ing home for Carol that took Medicaid. I recovered
and regularly visited her twice a week, monitoring
her decline. She once thought I was her father. On
two occasions I saw her physically resist help, show-
ing a fierce aggression I never thought possible in her.
The end is an image that will not go away. At noon
on October 25, 2019, with Hannah and a friend hold-
ing her hands, Carol raised her body slightly, made a
gurgling sound and fell back, dead. I closed her eyes.
It was a month before her 70th birthday and a month
before our 28th anniversary.
One result was financial disaster—the only pos-
sible end for many Americans in our dysfunctional
health care system. We had to hire lawyers to han-
dle the legal issues ($12,000). I was told that to pay
for Carol’s nursing home, which cost about $80,000
a year, I had to impoverish myself to qualify for
Maryland Medicaid: our attorneys said that I could
have no more than $2,500 in the bank. We had to
spend Carol’s retirement funds, and I had to give
up our house and move into an apartment. My life
now is upside-down.
So how do I remember her? Her decline and death
are more recent, so they are naturally stronger mem-
ories. But how do I deal with the horror and indigni-
ty of Alz heim er’s? The eyes whose light had dimmed?
The soiled diapers? The unfinished sentences? The
empty bank account? The anger?
I should remember this: Three and a half years ago,
before Carol’s decline became precipitous, I found
out that the Royal Concertgebouw Orchestra, one of
the world’s best, was playing my favorite piece of
music—Gustav Mahler’s Resurrection Symphony —in
Amsterdam. Carol agreed that we had to go.
The concert was stunning. Afterward we walked,
holding hands, across a grassy park in a light mist
that muted the great city. Carol said not a word. I
could tell from her face that she was present and
aware and, better yet, that whatever Mahler was say-
ing in his passionate music, she had understood. He
had gotten through to her. Scientists say music
ap preciation is one of the last things to go with Alz-
hei m er’s because of where it is processed in the brain.
It was the last time we made love and the last time
I had Carol back for any length of time—the living,
wise, beautiful Carol. The Carol of the summer-blue
eyes. I keep reminding myself.
Joel Shurkin has written nine books on science and the history
of science. He has taught science writing at Stanford University,
the University of Alaska and the University of California, Santa Cruz.
