Book Review: ‘Passages in Caregiving’ by Gail Sheehy

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Caring for a loved one with a chronic illness -- a parent, partner, sibling or child -- is a role no one aspires to but many of us will take on.

In her superb new book, ‘Passages in Caregiving,’ Gail Sheehy writes that someone is serving as an unpaid family caregiver in almost one-third of American households. It’s a job that lasts an average of five years.

‘Nobody briefs us on all the services we are expected to perform when we take on this role,’ she writes.

That statement is no longer true, for ‘Passages in Caregiving’ -- written from Sheehy’s personal experience supplemented by a generous dose of reporting -- does it well. Her book outlines the road that awaits caregivers and gives practical advice to help them on the journey. It’s an ambitious and readable blend of memoir, reportage, consumer advice, pep talk and love story.

Sheehy, author of the bestselling 1976 book ‘Passages’ and many other books and articles, was married to Clay Felker, the legendary editor who founded New York magazine and cultivated such writing talents as Tom Wolfe, Jimmy Breslin and Gloria Steinem. They were a high-profile New York media couple with a life many would envy.

Then one day a phone call came that changed everything. It was a cancer diagnosis for Felker. As they absorbed the news and started making the rounds of doctors, Sheehy realized she had taken on a new role: family caretaker. She thought this would last six months to a year and then their life together would go back to normal. It didn’t.

Sheehy spent many of the next 17 years supporting her husband with admirable devotion as his health suffered, improved and then worsened again several times until his death in 2008. During that time they made the most of the life they still had: moving to Berkeley for a new teaching job for him; taking a dream trip to France; widening their circle of friends; and seeking out new purpose and meaning. And then they learned to let go.

The author who became known for identifying the changes people experience at different points in their lives once again does that here. She says caregivers go through eight turning points, which she labels Shock and Mobilization, the New Normal, Boomerang, Playing God, ‘I Can’t Do This Anymore!,’ Coming Back, the In-Between Stage and the Long Good-Bye.

She uses the metaphor of a labyrinth to describe the journey, saying its circular route and blind turns are similar to what caregivers experience.

This is not a slim book -- it comes in at nearly 400 pages -- and it’s packed with material. Besides sharing her own story, she tells the stories of people she met after her husband’s death when she traveled the country interviewing family caregivers as AARP’s ambassador of caregiving. Many of these caregivers found ways to not only survive the experience but grow from it.

Her book also is laced with practical information, advice and resources. Sidebars cover such topics as the stages of Alzheimer’s, palliative care versus hospice and options for home care. Sheehy lists numerous hotlines, agencies and organizations that can provide help.

If there’s one message that comes through in her book loud and clear, it’s that you can’t do it alone. With Sheehy’s investigative skills, connections, money and influence, she had formidable resources to assist her in the years she cared for her husband. And still she was worn down by the task and wondered if she could go the distance.

She was told by a doctor that with the care she’d given her husband, she had helped him stay alive far longer than he otherwise would have. But that care came at a price. She’s honest about the difficulties they faced in their finances and marriage and the frustration and ambivalence she sometimes felt.

Sheehy also is critical of a healthcare system that she says makes it difficult for the chronically ill to get the care they need at a price they can afford. She suggests strategies for working the system to get a better deal.

Sheehy has spun the hardships of a difficult passage into riches for the reader. In sharing her hard-won knowledge and wisdom, she may indeed help turn ‘chaos into confidence’ for some.

-- Anne Colby

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