An Uncertain Inheritance: Writers on Caring for Ill Family Members

An Uncertain Inheritance: Writers on Caring for Ill Family Members

by Nell Casey

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In this eloquent collection of essays—from the editor of the national bestseller Unholy Ghost: Writers on Depression—contributors reveal their experiences in caring for family through illness and death

Today, thirty million people look after frail family members in their own homes. This number will increase

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In this eloquent collection of essays—from the editor of the national bestseller Unholy Ghost: Writers on Depression—contributors reveal their experiences in caring for family through illness and death

Today, thirty million people look after frail family members in their own homes. This number will increase drastically over the next decade—as baby boomers tiptoe toward old age; as soldiers return home from war wounded, mentally and physically; as a growing number of Americans find themselves caught between the needs of elderly parents and young children; as medical advances extend lives and health insurance fails to cover them. This compelling book offers both literary solace and guidance to the people who find themselves witness to—and participants in—the fading lives of their intimates.

Some of the country's most accomplished writers offer frank insights and revelations about this complex relationship. Julia Glass describes the tension between giving care—to her two young sons—and needing care after being diagnosed with breast cancer; Ann Harleman explores her decision to place her husband in an institution; Sam Lipsyte alternates between dark humor and profound understanding in telling the story of his mother's battle with cancer; Ann Hood wishes she'd had more time as a caregiver, to prepare herself for the loss of her daughter; Andrew Solomon examines the humbling experience of returning as an adult to be cared for by his father; cartoonist Stan Mack offers an illustrated piece about the humor and hell of making his way through the medical bureaucracy alongside his partner, Janet; Julia Alvarez writes about the competition between her and her three sisters to be the best daughter as they tend to their ailing parents. An Uncertain Inheritance examines the caregiving relationship from every angle—children caring for parents; parents caring for children; sib-lings, spouses, and close friends, all looking after one another—to reveal the pain, intimacy, and grace that take place in this meaningful connection.

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Editorial Reviews

Publishers Weekly

Casey, a mental health journalist and editor (Unholy Ghost: Writers on Depression) has collected a remarkable array of mostly original essays by talented writers on being cared for themselves and caring for parents, children and spouses with illnesses as varied as depression and brain injuries. The writers have faced age-old dilemmas: for instance, novelist Julia Glass grapples with her own mortality and tries to raise two young children while undergoing chemotherapy for breast cancer. Other essays venture into more modern problems: Julia Alvarez and Anne Landsman both struggle to help parents who live in other countries. Many of the essays are beautiful and all are moving, but they are also relentless. The tales of cancer, multiple sclerosis and Alzheimer's start to blur together, no matter how artfully told. Sam Lipsyte's irreverent portrayal of caring for his mother as she died of breast cancer shortly after he kicked drug addiction provides welcome relief. He describes injecting his mother's medication: "I tended to make a grand, nearly cinematic deal of flicking the bubbles away, as though to say, 'Now Mom, aren't you glad I was a junkie?' " Other essays are less developed, and Andrew Solomon rehashes territory he covered in The Noonday Demon. Overall, the essays are well worth reading-just not all at once. (Nov. 13)

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Uncertain Inheritance, An
Writers on Caring for Family

Chapter One

My father the garbage head

Helen Schulman

My father started dying twenty years before he actually died. He had a heart attack and bypass surgery while I was still in college. From that point on, although my mother had three different cancers in the intervening years and a host of other medical problems, it was the specter of my father's death that floated above us at all times, perhaps because he himself feared it so. He was an atheist; he was terrified of his own nothingness, the inevitable empty void that he could not rationalize away. And for years, as his child, my father's death was the thing I too was most afraid of—until it wasn't anymore, until the quality of his life, his unfathomable suffering became the most frighteningly real of nightmares and then I had more pressing things to be afraid of, like that he might, against all odds, continue to live.

The last ten years of my father's life were hard. The last five were horrific. It was during this long final phase, when his many illnesses became acute—swirling around in his body like some toxic murky stew, leaving him virtually paralyzed and as mindless as any late-stage Alzheimer patient—that I vowed to stay by his side, to help take care of him as long as he needed. I was married by then. I had first one, then two small children, a household to run, a career to manage, but my father had always stood by me, he'd loved me and cared for me my whole life, and in turn, I loved him without reservation. So I made a pledge.

"I will help him as long as he needs it."

Iremember the moment I said this to myself outside his hospital-room door. It was a promise I lived to regret.

In the sexy, wild seventies, when I was a teenager, if anyone were to hold out a handful of assorted pills in the schoolyard of my high school and some kid was eager to randomly pop them, that kid was called a "garbage head." No drug of choice, just a messy indiscriminate addiction to all of it. During the last years of his life, my father—physician, professor, chief of two medical departments—was what I always thought of as a neurological garbage head, not just because he downed a hodgepodge of pills daily, but because he was afflicted with so many diseases that I pictured his brain itself as a myriad array of garbage. People would ask me what was wrong with him and I didn't know exactly how to answer them. What was right with him? He had coronary artery disease, had had numerous ministrokes (TIAs) and several larger ones. Until his autopsy, which concluded that he died of advanced arteriosclerosis, we thought he had Parkinson's; when he still could walk, he took those little mincing steps that Tim Conway made famous on the old Carol Burnett Show.

Five years before his death and about a week before the birth of my second child, my little boy, my father had one of those many strokes followed by an angioplasty and ended up in the same hospital where I was scheduled to give birth, the same hospital where he had practiced medicine for forty years.

"Hey, Dad, maybe I could take that bed over there and we could share a room," I teased, "and then you could stop stealing all of the attention."

Truth be told, I wouldn't have minded sharing a room with my father. I'd never had enough time with him—he worked endlessly when I was a kid, he was preoccupied with his own inner life, and while we were very close, he had a more natural affinity for my brother. Still, I always liked to be with him. Even after he was hopelessly brain-damaged I would often lie down on the bed next to him, in the hospital or at home in front of the television, and hold his hand. So back then, when he'd only had his second real stroke—the "salad days," I call them now—I suggested sharing a room with my dad, but he didn't respond to me. He kept saying, "It's like I'm two, it's like I'm two," because, in the salad days, he still had the cognitive powers to know exactly what bad shape he was in: that he had the reasoning capabilities of a toddler.

On the phone a few weeks prior, when my father was bemoaning the collapsing state of his memory, I'd said, "I know that this is very hard for you, Dad, but we all love you, we still can have fun together, we still can enjoy one another, does any of that help at all?"

He said, "No, you and your love don't help me."

How his words stung me. At first they felt almost coldhearted, cruel. I was offering him the best of myself, but that seemed to mean nothing to him. My father was in many ways an insightful and responsive man, a generous man, but he also had this extraordinary allegiance to honesty; he could be candid to the point of insensitivity and at times, even selfishness. At the moment that he gave me his response, he was not thinking about my feelings, but rather solely about what he knew to be the truth about himself. My love wasn't going to ease his pain, and it certainly wasn't going to save him. How could this be? I wondered. How could this endless reservoir of affection and attachment and respect that I felt for this man prove so powerless, so worthless?

I did not believe him then, but I believe him now.

Ten days after that second stroke I was home with a newborn baby and a two-year-old daughter. A friend taught several of my classes for me, and then I went back to work, resuming my usual schedule of teaching and writing. Night after night . . .

Uncertain Inheritance, An
Writers on Caring for Family
. Copyright © by Nell Casey. Reprinted by permission of HarperCollins Publishers, Inc. All rights reserved. Available now wherever books are sold.

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