He stood behind his new bride at the dinner party,
wearing the poker-faced expression of a caregiver who feigns
invisibility until the patient in his care requires
assistance. His too-thin wife sat in the only
wingback. Her legs splayed comfortably in an
uninhibited posture that contrasted with the modest
Southern-girl bonnet she wore to hide her bald head.
His wife has breast cancer and this man has become the
vigilant caregiver—better, bodyguard—a job that seasoned
lovers and good daughters usually adopt.
A former caregiver who spent three years locked
inside a house with a father who suffered with and then died
of Alzheimer’s disease, I watched the bridegroom bodyguard,
wondering in what ways his experience was different from
My patient—my father—lost his mind slowly. He
forgot how to behave in public. He drooled and leaked.
He got mad at hallucinations that stalked him. Sometimes
strangers and his own kin feared him. In his
dilapidated state, my father was not attractive to others.
The isolation was acute for him and for me.
During that time, I learned how to be alone in ways
I did not know were possible. I learned how to wait, too.
And I learned how to do different jobs that are part of
caregiving for an Alzheimer’s patient: cut a man’s hair,
shave him, pare his nails. I even made friends with his
delusions, which appeared as the sun set.
Sundowner’s syndrome, they called it.
I wondered about the new words in this bodyguard’s
life since the diagnosis of his wife’s illness, and if he
said the new words over to himself outside at
night—practicing how to say them calmly when he had
too—fearlessly, when it mattered most.
A steady stream of well-wishers greeted the couple,
attempting the awkward task of offering congratulations on
the recent wedding while simultaneously offering words of
sincere concern. I watched our mutual friends move through
the room, making their way to pay their gentle respects to
this sick bride, to embrace her, respectful of that side of
her weakened now by muscle loss and radiation burns.
Her bodyguard remained poised behind her, silent,
eyes disciplined and deliberately opaque so that no one
could read his mind and see....what?
My eyes used to hide the secret life a caregiver
lives. It is one of disciplined optimism. Of
ready service. Of fear and hope living side by side. Of
being terribly alone while always in the company of someone
who was going to die no matter what I did as his caregiver.
This caregiver had a more promising future, I thought.
His wife’s prognosis was good. Whenever possible, one or
the other of them said to anyone listening, “Get that
mammogram. It’s life or death. We caught it early.”
Her treatments were working. And they had a network
of friends who supported them. Those were the facts.
But was he still afraid? Did he have job
pressures as he juggled caregiving with making a living that
supported him and his wife? Did he feel all alone,
though as a caregiver, he was rarely alone?
The buffet dinner was finally ready and we all rose.
His patient moved serenely through the crowd, a bride
welcoming the guests at the reception. He followed
her, nodding as others assured her that she looked great.
She fixed her own plate, adding spoonfuls of this and that,
and I saw him watch and take deep breaths as she took more
food. ‘Good, good. Eat more,’ he thought. ‘Eat
as much as you can.’
He forgot to make his own plate as he followed her.
He smiled appropriately at friends who patted her or nodded
some silent intention of good will toward him, but the smile
never made it to his eyes. Compliments brought the bride
closer to him, however. She leaned gratefully toward
her husband, patted his chest and called him her hero.
The look in his eyes remained the same.
Suddenly, we were together in a corner, and I told
her what everyone else had been saying—that she looked
lovely. And then I turned to him, the male counterpart
to a life’s mission I have survived and still think about as
a mysterious part of my past that doesn’t need to be
solved—just understood more and more as time passes in this
new state where my father’s obituary changed my label from
caregiver to survivor.
“How are you?” I asked him. It sounded
like a casual question, the kind of question that everyone
asks everyone. It is a question that always surprises
caregivers because it is such a radical shift in focus.
This man, whose eyes have been opaque all evening,
answered the question I had been wanting to ask about
whether the caregiver experience is different for men than
it is for women. When addressed as a human being
rather than as the silent stoic hero, this bodyguard
answered the question with the same old word women
caregivers use in order to save their strength for later.
“Fine,” he said. But his eyes filled with tears.
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