If you find yourself suddenly the caregiver for a parent, a spouse, a partner, a sibling, you may be overwhelmed. Not only are there many new responsibilities, there is much mystery that lies ahead. Where do you go for help? Who can tell you what to do in this new role?
One source of useful guidance is the 2010 book Passages in Caregiving: Turning Chaos into Confidence by Gail Sheehy. She is the author of the 1976 book Passages, which helps define several phases of adult life. She now describes herself as “author, journalist, lecturer, advocate for caregivers.”
In Passages in Caregiving, she writes about the episodes in her husband Clay Felker’s slow demise. He died in 2008, seventeen years after his first cancer diagnosis. She writes about things she learned from personal experience, as well as insight she gathered from talking to other caregivers.
In the book, she identifies eight distinct “turnings,” starting with “shock and mobilization” and ending with “the long goodbye.”
Among her tips to caregivers is encouragement to take charge of the situation. She writes to caregivers: “How you handle this crisis will shape how you feel about yourself and almost certainly will change you in ways that follow you to the end of your days.”
She also tells caregivers, “We cannot do it alone. No one can.” She writes: “We need to grow a network of family, friends and veteran caregivers to help us understand what we’re going through and pitch in wherever they can.”
Of hospice care, Sheehy writes: “Caregivers often receive the most cherished benefit of hospice care. They and other family members almost universally express gratitude for being guided and supported through the mysteries of the dying process.”
As we at Hope Hospice tell patients and caregivers, every situation is different. But there are common elements that exist in most end-of-life experiences. Similarly, your caregiving experience will be different from that of Gail Sheehy. But by having walked that path, she is able to share her story (as well as those of other caregivers) in a way that can provide you a better idea of how to proceed.
If you are a caregiver and have questions about hospice care, call us at Hope Hospice at 314-984-9800.
(Passages in Caregiving is available from Amazon in a print edition and e-book. The Kindle version comes with several videos on the topic. It is also available in local libraries.)