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Passages in Caregiving: Turning Chaos into Confidence

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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

I read the entire book in one sitting before interviewing Gail for a Today's Caregiver magazine cover interview this year. I spent much of the time nodding in agreement. It is a joy to see how Gail turns the chaos of caregiving into organization and confidence. My advice to family caregivers and those who will become family caregivers (which is, of course, most of us) is to read this book as soon as possible. There is no single path for any caregiver to follow. As the saying goes, "Once you've seen one caregiving situation, you've seen one caregiving situation." But there are signs and "turnings" along the way of which we need to be cognizant. As Gail shows in Passages in Caregiving, the more we understand, the more we realize that we are not alone as we care for our loved ones; and the more we care for ourselves, the better care we can deliver to our loved ones.

When Gail Sheehy got "The Call" she never dreamed she's spend the next seventeen years as a caregiver, fighting for the life of her husband who refused to give up. Inspired by her own journey as a caregiver her book "Passages in Caregiving: Turning Chaos into Confidence" identifies eight crucial stages of caregiving: shock and mobilization, the new normal, boomerang, playing God, I can't do it anymore, coming back, the in-between stage and the long good-bye.
Sheehy helps us navigate our way through the patchwork of care alternatives, insurance regulations, medicare rules and conflicting advice. Providing advice and guidance she answers the most important questions to consider: Does your insurance and/or medicaid cover home care? Do you use palliative care or hospice? What is Palliative Care? Do you need an Advocate, Geriatric Care Manager, Home Health Aide, Nurse, Elder-Care Attorney, Research Guide or Medical Quarterback?
For example to be eligible for a Medicaid-approved home care agency or Home Care in most states a patient can have only $2,000 per month of "countable assets." This does not include the family home while it is occupied by the patient, spouse or a minor. Most states will deny Medicaid if the patient transferred their assets to a relative in the last five years.
She expressed concern about our current medical system where the hospital makes more money releasing and readmitting patients. The federal government and private insurance companies pay a lump sum for each hospital admission based on the patient's diagnosis. Insurance companies pay the hospital a predetermined set rate for a fixed number of days instead of paying to keep the patient until they get better. When patients are released earlier the hospital makes half again as much money. If the patient is held over the hospital will loose money as it will only be paid the predetermined set rate. Patients are given more and more high-tech tests, regardless of the benefit and being discharged quicker and often sicker. This explains why patients with frequent hospital readmissions in the last two years of life swallow up over 70 percent of the Medicaid budget. Also why when you call a doctor about a chronically ill person's medical problem the doctor is primed to tell you to take the patient to the emergency room for "reevaluation." Financial incentives drive hospital behavior. Doctors are often caught in the middle between the protesting family and the hospital's business office.
Sheehy gives strategies for reliving caregiver stress, setting boundaries, avoiding codependency, protecting yourself from patient backlash, holding on to your job, pulling close to friends and seeking out other caregivers and support groups. She says the average family caregiver in the United States is a forty-eight year old career woman. The caregiver's role lasts an average of five years.
I highly recommend Sheehy's moving account of her own journey and her well written and researched easy to read manual for caregivers.

Gail Sheehy brings to light an issue that many face, not only caregiving for an ill loved one but she also addresses challenges that are common to many baby boomers who after taking care of their kids and have emptied the nest, need to care for aging parents.
That stresses the importance of talking about it and finding new ways to face these challenges.

There are not real choices when it comes to care for seniors. The current options are either fragmented and basic home care or institutionalized living, I wonder about what happened to the concept of aging in place?
The 2008 AARP survey stated that 89% of Americans do not want to leave their homes when they age. Most of these people will be live alone and receive support from a variety of health and community-based providers, family caregivers. How will the long-term care system provide care to a growing number of seniors living in increasingly scattered locations? And more importantly, how can that system continue to provide quality care in the face of workforce shortages, rising care costs and decreasing resources?
Given my personal experience of caring for my father, who already passed, and now for my mother and as a professional in the filed, I have lived and breathed this issue. I believe the aging process is a challenging yet rewarding period in the life, and it is important to provide elders with a choice and provides peace of mind to family members.
Thank to Gail Sheehy for bringing this important topic to the forefront for discussion. Her pioneer work as a family caregiver supports all what we need to do to meet the multilayered needs of the seniors in the 21st Century.

Doris Bersing, PhD
Living Well Assisted Living at Home, Inc
President

...but I am no where near as wealthy as the author. I'm not in a care-giving situation yet, but I see it looming down the road with my mother. I won't be able to hire any help and it will be a miracle if my only other sibling will help. The author gives a lot of sources for help, but since I haven't checked them out I don't know if they are free or not. I kind of doubt it. It would be great to have her resources and be able to buy a home in Manhattan, then fly to Paris for a vacation, then sell an apartment elsewhere and so on......I will always be right here and no vacations.

I have trouble taking advice from those who are extremely wealthy. We have nothing in common. Her world of care-giving for her husband is totally different from the vast majority of the rest of us. It was hard for me to read her personal story but not because it was sad. I just had trouble stomaching how easy it was for her because of the money and I just didn't care that much. Her experience with care-giving was so much easier than I've known it to be for most people. Having money really does make a world of difference.

Good book for some resources, but the wealth of the situation was not at all realistic to most care-giving situations. I think there are a lot better books out there.

I've been through caregiving with my husband, who was diagnosed with Mantle Cell Lymphoma. Passages is written by someone who has the money and resources to do whatever can be done. What if you are someone without those resources? I couldn't go to a week of spa massages once a year to "relax". He couldn't surround himself with university associates to support him. I could not identify with her book at all.
I never reached the point of "I can't do this anymore." It was an honor and a privilege to take care of my husband until the end of his life. I cherished every moment with him.
How can you allow yourself to think about life after caregiving when you are still with him? That is totally absurd. My life was his life for 34 years. You always hold hope in your heart that there will be another day.

In PASSAGES IN CAREGIVING, Gail Sheehy chronicles the psychological, emotional, and logistical stages involved in providing care to chronically ill and dying loved ones.

Part self-help, part resource guide, and part memoir, it's okay in each part and good in the overall aggregate. The self-help aspect is probably strongest, where readers will recognize themselves in the caregiver stories Sheehy shares to illustrate her continuum of eight caregiver "passages" -- from the initial shock of illness and life's new normal, through the accumulation of events that can lead to control issues and despair, to acceptance and letting go. The resource-guide aspect is probably weakest -- strategies for each passage are buried throughout the text rather than collected into an easy-reference appendix, and they're mostly useful to people who are already rich in resources (time, energy, connections, money).

And Sheehy's personal experience of giving care during her husband's 17-year illness is somewhere in between. Whereas the stories about other caregivers are easy to read -- illustrative and objective -- her own memoir-ish passages are illustrative but close-in personal. It feels insensitive to admit, but I didn't want to keep diving into Sheehy's deep waters. Those passages are all in italics, and eventually I skipped them and came back, after I finished the book, and read them all together.

It's a supportive, eye-opening overview of caregiving, a good starting point and best read in advance of needing it.

A great resource book interspersed with personal narrative and no-nonsense information. The topics are listed in a natural progression from finding the best doctor to sibling disagreements to hospice.

Obviously, a caregiver doesn't need all this information at once. In fact, reading it all at once may be overwhelming. While not a prediction of what is to come, it is a resource for a variety of possible scenarios.

Watch for information which may have changed or needs further examination. For example, an online search led me to find that a recommended convenience food for seniors contain more saturated fats and salt than the site leads the reader to believe.

Sheehy knows how to blend the human element with matter-of-fact information to make it readable and practical.