Book Review: The Worst Day of My Life, So Far by M A. Harper
January 2003, Vol. 8, No. 1
ISSN 1540 5273
Reviewed by Edna L. Ballard
Caring for someone with Alzheimer's disease is a daunting task. Each stage of the disease presents unique demands and challenges, creating problems in thinking, remembering, and the ability to perform what once were ordinary tasks, such as taking a bath, driving a car, or holding an intimate conversation with family or friends. In its more severe stage, the person may not recognize old friends, close family members, or even himself in a photograph taken just moments before.
M.A. Harper has written a novel about a middle-aged daughter, Jeanne, who gives up her job, home, and friends in the city to move to her hometown of Auletta, Louisiana to take care of her mother, Velma, who has Alzheimer's. It's an emotional roller coaster ride that has as much to do with Jeanne's lifelong relationship with her mother as it does with the progressive deterioration and increasing difficulties brought on by the disease.
Families struggle with the behavioral symptoms of the disease, such as aggressive behaviors. But, helping the person with personal care tasks, such as bathing, toileting, dressing, and dental hygiene is also challenging. Caregiving problems that are not necessarily difficult, but clearly suggest lost capabilities, are especially hard emotionally. Velma no longer used toilet paper and sometimes forgot to pull her pants all the way up. Other behaviors, such as asking the same question repeatedly, though benign and requiring little in the way of caregiving efforts or attention, are nonetheless maddeningly stressful.
Harper has immense talent as a writer and keeps the reader entertained. Caregivers will choose this book, not for entertainment, but for information about the disease, what to expect, and how to cope as the caregiver. Jeanne, even in the most stressful situations, relates her story with humor. Humor is an excellent coping tool and is often recommended to caregivers as a way of coping with situations and events over which they have little or no control. Jeanne has an acidic, abrasive quality to her humor that is not inappropriate given the situation.
The book begins with the early relationship of Jeanne and her mother, Velma, a beautiful, vibrant woman. Much of the narratives of life unrelated to her mother's Alzheimer's are enjoyable but get in the way of the "real message" of the book. This is not to say that what the individual was like before becoming demented is not important (indeed, families lament the loss of the person as they once knew him or her as being one the most painful aspects of the disease), or that successfully meshing other parts of the caregiver's life with the role of caregiving, a task not easily learned, is not also important. In The Worst Day of My Life So Far, this extraneous material is given an importance that dwarfs the expectation of the reader to find Alzheimer's to be an early prominent theme. The attempted rape scene, for example, was interesting but added little to the book.
Alzheimer's caregivers want information and help in coping with their current crisis. They learn from others and find strength from those who have had similar experiences. MA Harper's caregiver, Jeanne, recounts all the typical problems, issues, and patient behaviors, but there is little in the way of teaching others "how to do it." Teaching through examples of what worked for a particular caregiver at a specific time helps build caregiver confidence and promotes creative solutions. The caregiver who lets her mother get in the tub with her clothes on when she refuses to undress for reasons of propriety provides an example of an acceptable, albeit, unconventional solution to a problem. For isolated caregivers, written materials about Alzheimer's may be their only source of information.
The cost of caregiving is often high -- chronic fatigue, depression, family conflict, loss of friends, decreased personal time, anger, fear, frustration, and loss of hobbies and outside interests. Many caregivers feel trapped into the role of caregiving. Jeanne experienced much of this. Like many caregivers, even when gently encouraged to find outside help in the care of her mother, she elected to do it herself, resentful all the while.
Many caregivers, reading The Worst Day of My Life So Far, would be overwhelmed and disheartened by the number and kinds of problems Jeanne faces in her care of Velma. The author is frank in her descriptions of the problems.
My mother became extremely upset at the mention of daycare. She made terrible toileting errors whenever she became upset. . . . Have you ever had a parent bring you a human turd in the palm of her hand at two o'clock in the morning to ask you what it is?
Though the reader may be surprised by some of the graphic language, the situations, problems, and issues are all representative of what Alzheimer's caregivers face. A very common situation, for example, is what is sometimes referred to as the "She Looks Good to Me Syndrome":
Barbara's damn right about Mama looking good. Mama looks good because I make her look good. I do her hair, while she fusses and squirms. I dress her. She no longer knows how to button clothing. Brassieres are deep mysteries. She'll put her two feet through the sleeves of blouses, if not coached and helped. . . .She balls up her fists and threatens to put my lights out, to knock my teeth down my throat. I have no idea why she is so threatened by the act of getting dressed, but she is. . . .But expecting Velma to dress herself is kind of like expecting her to diagram the molecular structure of polyurethane.
This is an excellent book to educate the public about the impact of Alzheimer's on the caregiver. Caregivers have complained for years that one of the greatest burdens is how ignorant and insensitive others, including other family members, are to their plight. However, it is not a book I would recommend to the caregiver. Most caregivers would find the images overwhelming. The literature suggests that many caregivers do not want to know the depressing details of the inevitable deterioration of the person, particularly in the early stage when one is trying to come to grips with the consequences of the diagnosis. Hope, however tenuous, is as concrete a help as information about resources and techniques in coping and caregiving.
Despite days "when there is just too much laundry, too many incoherent conversations," Jeanne, like legions of Alzheimer's caregivers, freely elects to continue the job of caregiving. The story ends with Velma and Jeanne in a near tragic event, and Jeanne faces the ultimate moral dilemma. While Jeanne's resolution of the dilemma is clear cut, Harper leaves the ending open to interpretation, inviting speculation and discussion. At the end of the book, Harper has provided questions for discussion, making the book a valuable tool for educating the public and non-caregiver family members about the struggles facing our nation's caregivers.
The opinions stated in this article are the opinions of the author and do not necessarily reflect the opinions of the people and organizations who support and publish The Forum for Family and Consumer Issues.
Harper, MA 2001. The Worst Day of My Life, So Far. A Harvest Book, Harcourt, Inc. San Diego, New York, London
Author of book review
Edna L. Ballard, MSW, ACSW, Clinical associate in Social Work, Duke University Medical Center.
Cite this article:
Ballard, Edna L. 2003. A book review: The worst day of my life so far by MA Harper. The Forum for Family and Consumer Issues 8(1).