A Roadmap for Resilient Caregiving: The Sudden Caregiver Inspires Caregivers to Thrive, Not Just Survive
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In testimony before the Senate Special Committee on Aging in 2011, former US First Lady Rosalynn Carter said, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
In her new book, The Sudden Caregiver: A Roadmap for Resilient Caregiving, Karen Warner Schueler (C’ 13) offers a practical guide, roadmap, and source of comfort for anyone who is caring for a loved one, especially those for whom the role of caregiver was unexpected. It is the resource that Karen wishes she’d had when her husband, Joel, was diagnosed out of the blue with stage IV cancer in the fall of 2014. Its release, during the week of February 15, 2021, was timed to coincide with National Caregivers Day. Karen is on a mission to help caregivers navigate the ins and outs of caregiving, and, as she says, “plan for the unplannable.”
As Joel’s primary caregiver for the last nearly two years of his life, Karen drew on all the strengths and skills at her disposal as an executive coach and president of her leadership development and consulting firm, Tangible Group. Joel had once described her approach to problem-solving as “formidable.” During those first chaotic days following his diagnosis, he told Karen, “You are the best problem solver I know. Get me through this.”
Karen and Joel worked together to proactively create a practice of resilience, drawing upon familiar positive psychology concepts such as broaden-and-build, optimistic narrative, and hope theory. “We could hope for a cure, but we knew the odds,” Karen said. “So we hoped for completing projects, having good days, and watching as many sunsets as possible.”
Karen’s background in positive psychology provided the insight for a proactive approach to resilient caregiving. One “a-ha moment” she describes is when she came across a graphic in research by the Forum on Aging, in which caregivers reported a surprising positive impact of caregiving on their well-being. This research gave shape to a central premise of the book -- what Karen calls the “Sudden Caregiver’s Paradox.” As she explains it, “Caregivers described their worlds as both depleting and fulfilling; it both sucks and makes us feel good. They felt kinder, engaged, closer as a family, had greater meaning. So I had to ask: what if caregivers intentionally developed well-being by building a practice of resilience?” Says Karen, “Caregiving may be inevitable, but caregiver distress is not.”
With 53 million caregivers in the US alone, caregivers make up roughly 11% of the populations of the developed world. With all these caregivers in the world, Karen looked for, but could not find, a comprehensive guide of best practices -- a roadmap -- for what she was experiencing and what was to come. Karen became determined to create one to help other sudden caregivers. To supplement her own caregiving experience, she weaves together both the existing research (there are 16 pages of Notes and Sources at the end of the book) along with stories and conversations from the lived experience of other caregivers.
The Sudden Caregiver is divided into three parts: How to be a caregiver, how to do caregiving, and how to move beyond caregiving to integrate the lessons of caregiving once the role of caregiver ends. Karen guides readers through evidence-based strategies, drawn from the principles and science of positive psychology, that are designed to help raise well-being and resilience for both the caregiver and the person in their care. With the acronym C-A-R-E (Crisis, As Normal as Possible, Resolution, and Evolution), Karen explains the four phases of the caregiving journey and helps the reader apply what they need for their situation. She invites readers to dive in where they feel they need the most help, as every caregiving situation is unique. The pandemic hit just as the book was going to press, and Karen added a preface to address the impact of COVID-19 on caregiving, pointing out that the rise of telehealth is a “silver lining” that has cut down on the need for at least some of the in-person medical visits that are physically and emotionally exhausting for caregiver and patient alike.
To supplement the book, which contains a Sudden Caregiver Worksheet for the reader to create their own practice and playbook, Karen has created an extensive website at https://www.thesuddencaregiver.com/. There, visitors can access free resources, including the Sudden Caregiver Roadmap and a Pathways to Wellbeing graphic; helpful links; and information on how to access one-to-one virtual caregiver coaching, virtual caregiver workshops and presentations. Karen is also in the process of developing Pathways to Well-Being virtual classes, short segments that caregivers will be able access whenever and from wherever, on-demand.
The Sudden Caregiver: A Roadmap for Resilient Caregiving is the playbook we all need in order to build an intentional practice of well-being as, inevitably, we navigate the challenges of caregiving with grace and with grit.
About the Author: Dr. Kathi Norman is a physician assistant, international speaker, and creator/owner of Positive Medicine. Her passion is the marriage of medicine and positive health including both sustaining the well-being of health-care providers and developing optimism and other positive health traits in her patients. Kathi has studied healthcare law, global medicine and healthcare administration completing her doctorate in medical science. Kathi can be reached at positivemedicine@outlook.com.
