Passages In Caregiving: Turning Chaos into Confidence [Hardcover]

Review of Passages in Caregiving: Turning Chaos into Confidence by Gail Sheehy

Gail Sheehy is a writer who became well-known with her books Passages and Hillary's Choice, a biography of Hillary Clinton. Sheehy built her career as a literary journalist.

In Passages in Caregiving, Sheehy uses her journalistic style to report on eight stages of caregiving, which she calls "Turnings." The stages range from "shock and mobilization" to "the long goodbye." Sheehy offers strategies for solving the problems associated with each turning.

Throughout the book, Sheehy offers a memoir about caring for her ailing husband for seventeen years. He'd been a foremost pioneer in the editing and magazine industry, as well as a professor. She takes the reader on their journey in personal narrative. There is no guidebook for such an individual path, so Sheehy shows the reader how she literally took one day at a time. She says she attended Alcoholics Anonymous meetings for support and stability.

Sheehy also includes the narratives of others who are caregiving. These stories were obtained when Sheehy had the opportunity to interview them at crucial turning points. Additionally, there is an extensive index for ease of reference to any topic, ranging from objective needs (finding a hospice) to subjective feelings (such as guilt). Resources are included in the book, but some of them are not available to the typical American caregiver. For example, Sheehy suggests hiring a research guide to navigate the internet for you, summarize the findings, and report the results to you.

In his late seventies, my stepfather is the primary caregiver for my mother, who has terminal cancer and Alzheimer's. Their story is one millions making due within the confines of Social Security and Medicare.

Herein lies my inability to relate to Gail Sheehy's journey. Yes, she writes about universal emotions like anger, anxiety, and enduring love. However, I was rankled by her assumption that there is financial equality when coping with challenges. For example, she flew her husband to France to luxuriate in Monet's gardens (Dad will be fortunate to purchase a calendar of Monet's images for Mom). Sheehy went on a daylong retreat for caregivers to walk a labyrinth. (Thanks to state-aid respite, Dad gets Monday mornings off to get groceries). When Sheehy's husband Clay decides he wants to work, they buy another house in Berkley. (Dad will be lucky not to lose his one house due to medical bills). I felt as though Sheehy's inclusion of the minimal resources for low-income citizens was perfunctory and patronizing.

Sheehy says, "To avoid high cost, low competence, and maddening bureaucracy, many care seekers find home aides through word of mouth, commonly referred to the `gray market.' . . . "The going rate for gray-market health aides is $20/hour plus overtime." Who can afford that?

Another area of disconnect was in Gail Sheehy's presumption that families can overcome their conflicts to come together for caregiving. That leaves out families with felons who cannot face each other, or where it would be deleterious to do so. Her position is overly optimistic (or mine is too pessimistic).

As always, Gail Sheehy's writing is topnotch. How can a reader find fault with this award winning author who adeptly wove the narrative style with journalism? I appreciate the choices she made to be a responsible caregiver, and the generosity of her sharing. Passages in Caregiving will be on my shelf for reference on some challenges that apply to both the haves and the have-nots.

Gail Sheehy's "Passages" is really three different books. One part of the book is a memoir of her experience caring for her husband Clay Felker during his long physical decline. As another reviewer Sheila wrote, "Passages is written by someone with the money and resources to do whatever needs to be done." Sheehy's personal narrative is set in delicate italic type and is the story of how she used the privilege and celebrity of both her and her husband to get him decent care. They had access to famous doctors eager to be associated with them, along with hypnotists, nutritionists, acupuncturists, personal yoga instructors, psychotherapists and a full time housekeeper. When things got too stressful for her, Sheehy would go to a spa for rejuvenation. Sheehy is telling the truth about her own life, but she treats her privilege as a norm.

Interspersed with Sheehy's memoir, is a section set apart (at least in my review copy) called "Strategies." This part of the book uses a drab san serif font and is set into an even drabber gray box on the page. It consists of plainly written suggestions (which are easily available elsewhere) for us non-famous, non-rich, non-celebrity folks, like taking up gardening or an old hobby to reduce stress (no spa time for us!). The third part of the book consists of case histories, where Sheehy dutifully went around the country and interviewed couples and families who care for for ill and aging relatives. Again, it's the kind of information that's available elsewhere and the writing feels like Sheehy wasn't particularly engaged with her subjects. I haven't read any of Sheehy's other books which may have the same format, but I found this book oddly organized. The abrupt change of tone between Sheehy's description of her own experience and rest of the book makes it editorially jarring.

everyone's experience will be different in so many respects.

I've been a caregiver for my wife for over 30 years, and many of Sheehy's suggestions and resources were helpful (or would have been helpful) to both of us over the years. And, it's always interesting to learn about other people's experiences -- sometimes they are extraordinarily helpful.

One example: about 27 years ago I saw a public television documentary about a young couple with a small child, the husband with an incurable form of cancer and with a life expectancy in months. The young wife was poorly educated but very articulate: she worried about how well she was able to care for her husband, whether she was caring for her child properly, what she would do once her husband was gone to care for herself and her child.

On the purely human level, she confessed that she wished her husband were dead -- her life and her child's life would be much better, and neither of them were able to do anyting really important for their husband and father. A few moments later she was very angry at herself for her betrayal of her husband, and guilty, wondering if she was an evil person in the sight of God. The human agony she expressed was heart breaking -- and instructive for me.

Many times over the past several years I've worried whether I've done all I could, or as well as I could, to help my wife. Every time, though, that I started to feel guilty about those failures, I remembered that young woman and the extra self induced agony she was adding to her own life. She's inspired me many times to simply acknowledge that I could have done something better ... inspired me to resolve to do better in the future ... and simply prevent myself from feeling the guilt attendant to my failings.

Sheehy's honesty portrayal of her own experiences, and her excellent researches on how and why people react in different ways in a caregiving experience can provide the same help to others in her (and my) situation.

At the same time, it is worth mentioning that Sheehy approaches caregiving from the perspective of a wife caring for a husband. Experience shows that husbands are generally less able to handle the responsibilities. A recent study (citation in the first Comment) showed that women with serious diseases were seven times as likely to be divorced as men with the same condition. The study was the subject of an intense discussion on the Well column on "The New York Times" website, with a great deal of male bashing in evidence -- "how pathetic is that?", "men are evil", "Let's face it: women are superior creatures - caring, sympathetic, giving, self-sacrificing. Men are selfish pigs." etc. etc.

It's unclear to me whether men are less able to cope with the challenges or whether the challenges are actually harder for men than for women (in my case, for example, I clearly lack a nurturing personality).

It may be instructive that Sheehy does not address the changes in sexual roles as the result of a major illness, not only loss of the great intimacies, but small intimacies -- the touch of a hand once meant "I love you" may now mean "I'm falling!" -- or nothing at all. A friend once described his sense of great loss: "I reached over to her one night, and there was no one there." I'm a little surprised that an author comfortable writing Sex and the Seasoned Woman: Pursuing the Passionate Life didn't at least allude to this loss and suggest resources for dealing with the issue.

Perhaps mine is a masculine perspective, after all, and at the end of the day men as well as women need help in this challenging role, and perhaps men more than women. Sheehy's book is a great resource for anyone facing the challenges.

Robert C. Ross 2010

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