Author Gail Sheehy is a literary journalist and her earlier book, New York Times Bestseller Passages, is about the major milestones and common experiences of our 20s, 30s, 40s, etc. In Passages in Caregiving, Sheehy recounts the years she cared for her husband, legendary magazine editor Clay Felker (founder of New York magazine, among other accomplishments) as he battled cancer, overcame it time and again, but eventually died after 17 years. And which is the story of how Gail became a caregiver but also how she survived and came through the experience stronger and with changed perspective.
This book recounts the stages of the journey that most caregivers travel, the common path.
I found the idea of caregiving as a journey a superb way to view it and often refer to it in this way. Sad as it sounds and much as we don’t like to think of it, caregiving does end. Usually with the death of the person to whom we give care. Seventeen years for Sheehy. Seven and a half years for me being caregiver for my mom.
Sheehy likened the journey to the twists and turns of a labyrinth as we move first one way and then move in a seemingly opposite or backwards direction through this stage of our lives. A type of tangled and twisting traffic circle on the roadway of our lives, one we merge onto, often completely unaware of what lies ahead, until we are trapped and can only move forward on switchback paths. We eventually move beyond this stage. It isn’t really a detour as it is more the life we now have. We can accept it and learn from it. It doesn’t have to demoralize or destroy us.
Sheehy admits early in the book that she “couldn’t write this book until I had walked the full circle of caregiving and come back to life myself.” She was not even sure she would survive to “tell the tale.” “It is not uncommon for a caregiver to die earlier than the person into whom we pour our love, sweat, and tears.” So she wrote this book to show caregivers that they can find life.
Sheehy says she chose the labyrinth as a metaphor because caregiving is not linear but feels like you’re going around in circles. You kind of are. We think we’ve resolved a crisis but then it returns or a new crisis arises. I picture a chain of hurricanes – furious wind and rain beats you down, then the calming eye followed by more wind and rain and then instead of there being an end to the storm, another one is immediately behind the first.
A labyrinth, unlike a maze, creates order from what looks like chaos. The path isn’t easily visible, but there is only one way forward and that is through. As a real walkable labyrinth becomes contemplative, so our movement through caregiving can, too. I found the labyrinth image especially helpful and compelling.
Sheehy identifies eight turning points in the labyrinth:
- Shock and Mobilization – a medical or other emergency that becomes the on-ramp to a new experience. (Though not all caregivers start with this. Some do just gradually start helping their relative more.)
- The New Normal – you cope with the crisis and adjust, feeling successful.
- Boomerang – a new crisis – the previous one evolved or a new one.
- Playing God – we grow overconfident of our ability to cope, and we grow overcautious and try to control the situation all on our own.
- “I Can’t Do This Anymore!” – it all catches up with you.
- Coming Back – you begin to see your loved one will age/die but you will remain. You begin to come back to yourself, seeing that your two paths are going in different directions.
- The In-Between Stage – your chronically ill relative isn’t getting better and is not acutely ill, either.
- The Long Goodbye – you know the end is coming but not when and then suddenly it is here. This is your time to prepare for the end and for afterwards.
Sheehy’s strongest argument other than that you can survive caregiving is that You Cannot Do It Alone. The majority of caregivers need to understand this because so many think not only that they can do it alone but that they must. I did. If we’re firstborns, we approach everything as loners and experts on how things should be done. Oldest daughters are prone to this false thinking and families often expect it of their oldest/only daughters. The biggest battle you will have is asking for and getting help – help from doctors, the medical workers you meet, social workers and paid caregivers, your work colleagues and maybe your boss, family, and friends. And the battle will be with yourself as well.
There are differing opinions among caregivers around the idea that caregiving can be a positive experience. Because for so many of them, caregiving is a soul-destroying experience. I can see both sides of the issue. Sheehy reports studies revealing that about one third of caregivers will become sacrificial lambs of the family, surrendering health and financial security to care for a family member. This points to a societal issue that needs much more discussion. But the Rosalynn Carter Institute estimates that another one third of caregivers say their lives have been enriched by caregiving. That gives me hope.
I also found the Epilogue compelling. Here Sheehy asks the question, who will take care of us? And explores ways communities and people are working to ensure we/they don’t die alone.
When I worked in a bookstore, I knew of Gail Sheehy because of her bestselling book Passages, even though I didn’t read it. This past year, when I learned that Sheehy had written a book called Passages in Caregiving, I figured it had to be worth reading. I was right. (You may notice the library sticker on my copy in the photo. Yep. Purchased on Alibris.)
The book is an exquisite intertwining of her story with her research, interviews with other caregivers, resources, strategies, journalism – all by a master writer and journalist. It is the most complete picture of both the interior experience combined with the daily nitty-gritty details of managing the care of a disabled or ill person.
I highly recommend this book. Read it now. Whether you are a caregiver or not. You will either become one or will be taken care of by one at some point in your life. This book is invaluable for understanding this process, this passage that almost all of us will be part of.
Book cover by carynwrites
Labyrinth by Regina Basaran from Pixabay / filtered from original