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 mine.

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.

Daphne Simpkins is the author of The Long Good Night, a memoir about caregiving published in 2003 by Eerdmans.

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