Caregiving has undoubtedly become a cultural phenomenon. With 65 million caregivers in the U.S. and an aging population expected to double in size by 2030, caring for a loved one is no longer the silent passage socially assigned to a minority of women. As seniors live into their 80s and 90s and the pool of healthcare service providers shrinks, the vast majority of us will be faced with the task of caring for a loved one.
Who better to illuminate us on this major life passage than Gail Sheehy, renowned author of best sellers including Passages and Menopause: The Silent Passage? Her new book, Passages in Caregiving, is an inspirational guide on this journey. Sheehy breaks it wide open and brilliantly sheds light on an experience that many of us anticipate as daunting, unpredictable, and stressful. Whether family caregivers are shocked into the role with “The Call” or are simply preparing for the inevitable future, they’ll find Sheehy’s book to be a valuable guide through what she calls “significant changes in the condition of our loved one that demand new coping strategies.”
Unlike childhood development with its universal developmental milestones, the aging process is incredibly diverse and unique to each individual. As co-founder of a website for caregivers, I’ve often contemplated how challenging it is to address such a wide range of needs and health issues among the elderly or chronically ill and their caregivers. Yet difficult as it may seem, Sheehy guides us through this massive landscape—a symbolic labyrinth—and defines eight critical turning points in the caregiving journey. As a caregiver for my late grandmother and father-in-law, I easily recognized each of these stages but hadn’t realized their universality. The eight turnings, Sheehy says, help caregivers “identify universal patterns in the chaos and give the journey a form that makes sense.”
Sheehy is an expert on the subject, having been for 17 years a caregiver for her husband, Clay Felker—the legendary editor and founder of New York magazine—who suffered a long battle with throat cancer. In Passages in Caregiving, Sheehy reveals each step of her personal journey, recounting how her husband underwent successful treatment, only for the two of them to be blindsided by “recurrence,” which she calls “the cruelest word in the English language.” Her story is poignantly interwoven into the book, along with stories and strategies of 30 other families and individuals, including “Today Show” host Meredith Vieira and Supreme Court Justice Sandra Day O’Connor.
For the silent caregivers out there, Sheehy does groundbreaking work in defining specific categories of caregiving—another way of showing how universal these all-too-isolating roles really are. She identifies five typical caregiver profiles, incorporating them into the stories that illustrate the different turnings.
Unlike many books that focus on the negative experiences of caregiving, with lessons learned from tragedies or mistakes, Sheehy makes a point of empowering caregivers and helping us see this journey as a potentially transformative experience. Each chapter is full of helpful lessons, advice, and a wealth of information resources. Sheehy focuses on success stories and strategies that have actually worked for families and individuals, and points out that the book is “aimed to help caregivers take charge.”
Those success stories include the Colberts, a family of seven siblings in Philadelphia, and how they came together to build a “circle of care” for their 84-year-old mother, diagnosed with Parkinson’s disease and diabetes. Another family, the Heaths, found a way to work together through crucial family meetings led by a neutral facilitator, and the guidance of a geriatrician who helped them create a “life management plan.” Other stories emphasize the importance of connecting with fellow caregivers and caring for one’s own wellbeing.
For me personally, the hardest sections to read were the last two turnings: The “In-Between Stage” and “The Long Goodbye.” Sheehy shares intimate details of her feelings through the arduous and painful stages of her husband’s last years as he suffered through chronic infections and hospitalizations. She enlightens us on the complications of our healthcare system while helping us deal with the phase between ‘no cure’ and death. She describes the challenges of Medicare not paying for home care, the system’s lack of support for palliative care, and the six-month deadline in hospice care.
If there’s anything missing from the book in terms of financial aspects of care, it’s a full discussion about long-term care insurance and the sense of denial most families experience on this topic. Long-term care insurance can cover a significant portion of expenses for an assisted living facility or home care that are not covered by Medicare.
Sheehy ends with a hopeful chapter about the future of aging in “Who Will Take Care of Us?” I was thrilled to learn about “The Village Movement,” an innovative concept that Sheehy calls “Sustainable Aging.” The idea is that these communities enter into a pact to support one other when in need, which empowers adults to remain in their own homes to the end of their lives.
While the act of caregiving is not new, the sheer number of baby boomers becoming caregivers is an unprecedented phenomenon. In that sense, the world of caregiving is a new frontier. As she has done before, Sheehy breaks new ground by revealing the once-isolated world of caregiving, equipping caregivers with information to better address their loved one’s needs as well as their own. The question, as Sheehy states, “is not if you will be called to act as a family caregiver . . . but how you will respond.”
Look Sunday for the second installment of Susan Delson’s interview with Sheehy, which explores far more deeply how this journey has affected the author and her family.