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Original Essays | October 17, 2009
By Jessica Maxwell
My Catholic friend tilted her teacup like a fortune-teller. "You know," she said, "I think people who don't have God in their lives are like people...
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That Went Well: Adventures in Caring for My Sister
by Terrell Harr Dougan
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Synopses & Reviews Review: "In this compassionate memoir, Dougan, humor columnist for 13 years penning 'Of All Things' for the Deseret News in Utah, writes for the first time about her mentally disabled sister, Irene. After Irene was born in 1946, their parents decided that she would not be institutionalized; with no Salt Lake City support group available, the girls' father, who ran an ad agency, teamed with other parents to launch a local day care center in 1952. Dougan made that a family tradition, opening a workshop for teens and adults with mental disabilities in 1968 and serving eight years as president of the Utah Association for Retarded Citizens. To tell Irene's story, she begins with a traumatizing childhood event; when she was 12 and Irene was six, they witnessed Irene's babysitter die from a massive brain hemorrhage. The lives of the sisters intertwined: Terrell became obsessed with swimming and ice skating; Irene learned to swim and ice skate, but not to read and write. Terrell studied at Stanford and later got married and had children; Irene was sent away at age 20 to a residential school in the hope she would learn 'some independence.' Influenced by Benchley and Thurber, Terrell is a skilled humorist with amusing anecdotes about Irene, such as her behavior during the family's Venice vacation. Writing with honesty, she is equally impressive in relating the haunting memories of sadness and despair surrounding Irene's darker days." Publishers Weekly (Copyright Reed Business Information, Inc.) Review: The first wave of baby boomers will turn 65 in two years, heralding the rapid increase of a population heading into its golden years. Within this group, Americans over 85 are the fastest-growing segment. There is some well-founded speculation, therefore, that boomers will spend more time caring for their parents than raising their own children. Memoirs by Terrell Harris Dougan and Meg Federico address ... Washington Post Book Review (read the entire Washington Post review) this subject and the challenge of caring for adult relatives with mental disabilities. Although specific to their individual families, both accounts reflect what will soon become a reality for a large group of adults who are themselves aging. Although both Dougan and Federico assumed the role of primary caregiver (Dougan for her younger sister and Federico for her mother), they arrived there by different routes. For Dougan, whose sister Irene has been mentally impaired since birth, the responsibility was not new, although their parents were Irene's primary support until the end of their own lives. For Federico, however, the transformation of her mother from a strong, imperious woman to a helpless dependent was sudden — and devastating. Perhaps understandably then, while both authors describe the unpredictability — and tyranny — of mental impairment with pathos and humor, Federico's account is both sharper and darker. In Dougan's book, which takes a nostalgic look back at her entire life with Irene, the edges are a little more blunted. Irene was born in 1946, a time when the mentally disabled were routinely institutionalized or, at the very least, hidden where nobody else could see them. This was never an option for Dougan's extraordinarily close, loving family, which kept Irene at home and worked tirelessly to teach her independence, ultimately becoming early advocates for the rights of the mentally disabled. Dougan recalls her Utah childhood with great fondness, describing Currier & Ives scenes of skating lessons and white Christmases. Irene, who never learned to read or write, stuck close to her sister, attempting to follow her in all things. Dougan attended Stanford, married and raised two daughters. At 20, Irene was sent to a residential school near Santa Barbara, Calif., to learn basic skills. However, Irene was prone to rages that occasionally became physical and proved too challenging for the staff, who soon sent her home. When both parents became ill and unable to care for Irene, the task of finding a living situation and suitable aides fell to Dougan. As Dougan relates in several funny anecdotes, Irene could be canny about getting her way, and it was a continual struggle to protect her while still affording her some measure of independence. In one heart-to-heart conversation, Dougan asked Irene what she really wanted. "She gazed out at the pond," Dougan writes, "and I imagined her forming the words that would tell me her soul's secrets. Then she looked at me thoughtfully, and said, 'I want — a hot dog.'" Unlike Dougan, Meg Federico was blindsided: Her octogenarian mother underwent a sudden mental decline after a stroke. Seemingly overnight, Addie, the woman Federico had always known as cool, proper and self-possessed, became erratic and infantile. Complicating matters was Addie's intractable second husband, Walter, who was himself suffering from Alzheimer's. Walter, who was verbally and, Federico suspected, physically abusive, refused to allow Addie to move to a nursing home. Unable to declare either her mother or Walter mentally incompetent, Federico arranged an often-disastrous round robin of live-in aides to care for her mother. Walter's daughter arranged the same for her father, and the two sets of aides clashed, fighting with each other, neglecting and even stealing from Addie and Walter. Meanwhile, Walter ordered cases of liquor, sex toys and numerous television sets to be delivered to the couple's home. Addie drank heavily, took a number of crippling falls and became incontinent. Although clearly alarmed and concerned for her mother, Federico describes Addie's deteriorating situation with a keen eye for the absurd. She also lards her account of the two years she spent traveling from her home to her mother's ("The Departure Lounge" of the title) with often-painful childhood memories of Addie, an alcoholic who was mostly distant and sometimes cruel. While tinged with sadness, the relationship Federico forged with her over this period was, ironically, a great deal more loving than the one they had before. Compassion, candor and the ability to laugh even in their bleaker moments are winning qualities that both authors share, making their memoirs lively and engaging. It is no coincidence that both use the word "adventures" in their subtitles. Both authors are frank about their frustrations, limitations and the strain that caregiving created in their families, yet they're devoid of whininess or self-absorption. The authors are also aware that their comfortable financial situations gave them advantages unavailable to many facing similar challenges. And while neither memoir is prescriptive, there is much to be learned about grace and emotional generosity from each. By not only accepting their roles as caregivers but also finding the sweetness and humanity within themselves, Dougan and Federico set an example we would all do well to follow. Reviewed by Debra Ginsberg, who is the author of five books, including 'The Grift', Washington Post Book World (Copyright 2006 Washington Post Book World Service/Washington Post Writers Group)
(hide most of this review) Synopsis: A compassionate, thought-provoking memoir about growing up with a mentally disabled sister, "That Went Well" reminds us to accept difference, to refuse to surrender, and to fight for the right of every human being to matter . . . and to be loved (Andrew Bridge, author of "Hope's Boy").
Product Details
- ISBN:
- 9781401323295
- Subtitle:
- Adventures in Caring for My Sister
- Author:
- Dougan, Terrell Harr
- Author:
- Dougan, Terrell Harris
- Publisher:
- Hyperion Books
- Subject:
- Siblings
- Subject:
- Specific Groups - Special Needs
- Subject:
- Caregiving
- Subject:
- Sisters
- Subject:
- United states
- Subject:
- Harris, Irene
- Subject:
- Dougan, Terrell
- Publication Date:
- January 2009
- Binding:
- Hardcover
- Grade Level:
- - Up
- Language:
- English
- Pages:
- 211
- Dimensions:
- 8.30x5.80x1.00 in. .75 lbs.
- Age Level:
- 12-UP
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