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The Challenges of Caregiving

A daughter writes candidly about the stress and isolation she felt while taking care of her aging mom

En español | In the space of three years, between 2000 and 2003, my mother's ferocious independence gave way to utter reliance on her two adult children.Garden-variety aches and pains became major health problems; halfhearted attention no longer sufficed, and managing her needs from afar became impossible.

See also: The AARP Caregiving Resource Center.

Senior woman and daughter holding hands

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Caring for an aging parent can stir a mixed bag of emotions.

The time had come for my mother's reverse migration, from a retirement community in Florida to another in New York, and in short order to a nursing home. By the end of her life, at 88, she was paralyzed, incontinent, could not speak, was losing the ability to swallow, and wanted nothing so much as a dignified way to die.

Those are the bare-bones facts. Missing is the panic of being in charge; and the shock to my brother, Michael, and me when our competence and resources proved all but useless in the face of America's incoherent and inadequate safety net for the frail elderly.

We were flattened by the enormous demands on our time, energy and bank accounts; the disruption to our professional and personal lives; the fear that our time in this parallel universe would never end and the guilt for wishing that it would. I can tell you now that it was worth every dreadful minute, a transformative experience. But at the time, living in the eternal present tense, all we could manage was muddling from one day to the next.

My brother and I were late children, so we reached this juncture before our friends and colleagues, who, innocent of experience, telegraphed the belief, painful to us, that we were exaggerating how awful it was. Only occasionally did they say it out loud, but in the silence between sentences I could hear judgment: This can't be as hard as you're making it sound. Old people get sick and die all the time. This isn't your child, or your spouse, or yourself. It's inevitable.

It was a lonely time. I was too tired and too sad for socially appropriate chitchat; I emptied the room at cocktail parties with gloom-and-doom stories nobody wanted to hear and quickly found it easier to just stay home. My brother, luckily, seemed to cross more easily between these disparate worlds in which we found ourselves.

At work, I tried to keep pace with my job while fielding my mother's incessant phone calls, chasing down doctors, phoning in prescriptions, hiring geriatric care managers and aides, arguing with my brother, fighting back tears, and dashing out of the newsroom for emergencies. Had I been a parent, I might have been just as stressed, but part of my energies would have been invested in a child's bright future. Old people may have good days, and it was my job to maximize those for my mother, but they don't have bright futures.

I fantasized, usually in the hypnagogic space between sleep and waking, facing another day of ignorance and exhuastion, about pointing the car west and driving, driving, driving.  I'm glad I didn't because, instead I learned what I was made of; I found my better self.  I found my mother. I found my brother.  But all of that came later.

Excerpted from A Bittersweet Season by Jane Gross. Copyright © 2011 by Jane Gross. Excerpted by permission of Knopf, a division of Random House, Inc. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher. Read an interview with Jane Gross.

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