Caregivers Extraordinaire

susan a toth book

Along with the dilemma of what to do with all the stuff that we accumulate in life comes the dilemma of what to do with a life itself, with a person who has aged and lost the ability to take care of him or her self. Although this is not a topic we usually write about, I would like to share the stories of three of the best writers writing today who have tackled the subject, each in a personal and poignant way.

Susan Allen Toth describes what it’s like to be in the trenches every hour of every day caring for her husband. With grace and humor, Scott Simon shows us how to just be there for a dear loved one, for him his beloved mother, in the last days of her life. Roz Chast uses her laugh-out-loud funny and, at the same time, devastatingly real cartoons to depict the old-age roller coaster ride of her parents.

No Saints Around Here: A Caregiver’s Days by Susan Allen Toth

As her husband’s Parkinson’s disease and eventual dementia take control over his body and mind, Susan Allen Toth is determined to care for him at home. This book, based on the journal she kept during the last 18 months of his life, is often painful in its details, frightening in her feelings of loneliness and isolation (although she did hire many aides), and compelling and poignant and sometimes funny in its story. It is written with unstinting love and brutal honesty. Toth made me laugh with her wit, disturbed me her details, and frightened me with her forthrightness – sometimes all on the same page.

Toth captures the uncertainty of the job of a caregiver: “I feel as though I am about to fall off my balance beam. I picture every caregiver on one, usually performing with an outward calm, like a confident acrobat, but concealing an inner terror: “What in the world will I do now?” For many of us, this must require both courage and faith, because I am often dizzy and close to gasping as I edge my way forward. The balance beam hangs in an enveloping haze.”

The author may have meant to be ironic with her title, but many readers feel that, to the contrary, Toth is as close to a saint as there is today.

“We all need someone to hear us,” Toth says of the millions who devote their days to the care of a loved one. With her calm, gentle voice, Susan Allen Toth has become a loud and forceful advocate for caregivers everywhere.

scott simon book

Unforgettable: A Son, a Mother, and the Lessons of a Lifetime by Scott Simon

Using the tweets that he sent out to his Twitter followers during the last days of his mother’s illness as a framework, Scott Simon, the NPR correspondent, has written a memoir of Patricia Lyons Simon Newman Gelbin, a gorgeous, glamorous, funny, mischievous, three-times married woman who raised Simon as a single mother for much of his life.

She knew a lot of people, some very famous ones, and mother and son reminisce about their life as they wait, his mother with great patience, to hear back from various doctors. As Simon tweets, “I’m getting a life’s lesson in grace from my mother in the ICU.”

There are many memorable passages. Simon’s realization about death: “Death makes life worthwhile. It gives each moment meaning…Death drives life. It frightens and inspires us. Do away with death, and we have no reason to get out of bed (or into it), grow, work, or love…” His mother’s lament about aging: “You know what is so hard? There’s a tone in their voice when you get old and people call you ‘lovely.’ Like you’ve become some kind of beautiful, crumbling statue. They never see you as the person you were before you got trapped in this old body.” Simon’s description of his mother’s later years: “After [her second husband] died, my mother became part of a merry and remarkable group of women, all widowed, who lived in her building and kept moving. They explored the city each day, went to plays, movies, museums, galleries, and new restaurants…My mother loved the women; so did I. They had fun…” How lovely for her.

To the very end, Simon’s mother had her wits about her and, always, her grace. Here he captures the small details of life in the hospital and, at the same time, the big picture of a life well lived.

roz chast book

Can’t We Talk About Something More Pleasant?: A Memoir by Roz Chast

With equal parts laughter and tears, New Yorker cartoonist Roz Chast tells the story of taking on the parenting duties for her elderly and somewhat recalcitrant parents.

As Alex Witchel says in her review in the New York Times: “This is a beautiful book, deeply felt, both scorchingly honest about what it feels like to love and care for a mother who has never loved you back, at least never the way you had wanted, and achingly wistful about a gentle father who could never break free of his domineering wife and ride to his daughter’s rescue.

With her quirky cartoons, sometimes in step-by-step panels and sometimes in full-page illustrations, Chast tells the story of her parents’ decline, their falls, their many visits to doctors. They refuse to let aides (strangers!) help care for them; they abhor the idea of assisted living; they refuse to part with any of stuff they have accumulated, even the junk (as Chast says, “I was aggravated that they hadn’t dealt with their accumulations back when they had the ability to do so.”) They are in denial about everything: their limitations, their aging, their dependence. They can’t abide the mention of death and won’t talk about what may happen.

Chast’s book is at times hilarious, at times difficult to read, at times so surprisingly familiar. Her parents aged together, into their late 90s, which gave them comfort but also perpetuated the quirky dependence on each other that often excluded help from others, including their only daughter.

Chast tells a very personal story but one that is universal. The cartoons, which are charming, honest, and humorous, serve to lighten the mood, yet highlight the seriousness of a story of aging and death.

How do we deal with an aging parent or relative? How will we deal with our aging and eventual death? We could do well to take lessons from these three talented and perceptive authors, from books that should be on all of our to-read lists.

Linda Hetzer is an editor and author of books on home designcrafts, and food, and coauthor of Moving On: A Practical Guide to Downsizing the Family Home

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2 Responses

  1. Nice post, Linda! I’ve heard wonderful things also about Bettyville by George Hodgman. Thanks for pointing out these books.

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