Last week Janene Carey commented on the Podcast, “Home is Where the Heart is. Dying at Home". Janene Carey is the author of “A Hospital Bed At Home”. She thought I would find her book important. I read it a couple of days ago and it is an important book. Carey shares the personal stories of six caregivers who care for a loved one with a terminal diagnosis of either lung cancer or colon cancer. Amazon link here.
I’ve spent the past few days trying to figure out how to communicate what I am feeling and the importance of this book for me, for all of us. My struggle is not writers block or my own fear of writing but, how can I do justice to this book. Simply saying powerful, touching, evocative, disturbing, important, must read, feels excessive and boastful and a lot like bullshit. To not shout about these personal and powerful stories may fail to capture your attention and ultimate reading. Perhaps what is happening is that these stories are so close to my caregiving experience that I am stuck in a block of emotional amber.
Most of you know about Donna’s passing, my caregiving, my view on end of life, and palliative care. And if you’ve read my posts or listened to my podcasts you also know that my experiences are a driver to educate and share because Donna and I were blessed to have received the care we did. And to know that care afforded us and me so much is a blessing that I want others to have access to.
Janene Carey interviews five caregivers and shares her own story of caring for her mother. Each story is unique because we all look at dying, death, and loss differently. Each story is an exploration of the bond between caregiver and patient that exists prior to and during caregiving and after death. Carey takes the reader into the most personal and intimate moments any relationship faces, death of someone we love. These are stories of life and love and fear and loss and pain and joy. Carey examines the boundaries and bonds between the loved one and the caregiver Over time she shows how those boundaries and bonds dissolve, the couples become one in compassion and love.
“People think it must be just horrible that it’s happened, you know, that the kids have lost their father and so on. But there were so many beautiful aspects of it that the word coping doesn’t seem to incorporate. What you’ve been through, in some ways it’s the most amazing experience. You’ve had the privilege of going through it with someone you’ve loved. They’ve let go totally in front of you and you’ve been trusted to be with them. ”
I relate to this because Donna trusted her disease to me.
“Guilt comes no matter what you have or haven’t done. To live without guilt after the death of a loved one, a person would have to accede to literally everything the other person wanted. And what that means is living one’s entire life in attendance of the other’s death …David Rieff "Swimming in a Sea of Death: A son’s memoir,”
With each story, each paragraph we take the journey into caregiving and dying. The journeys are not easy and truthfully I recoiled at the detail of each and what needed to be accomplished practically and emotionally. These stories expose the harsh reality of caregiving and dying while providing a narrative how-to-guide. These stories become preparatory exercises for all of us. In his essay A Grief Observed CS Lewis notes that when he looks at couples he knows one will suffer grief and loss.
I looked for hope as I was reading Carey's book and that was not easy but, it was there. As I read these stories I looked back at my caregiving to see where I’ve been and what I felt. I was not alonewe are not alone. Others experiences offers hope and a sense of place in a world turned upside down. Hope is not necessarily the future, it is the past put into a loving embrace.
Carey does not limit her insightfulness to only the caregiver but how the world views and interacts with the caregiver.
"The Badens’ acceptance of Hugh’s condition as terminal was something else that other people found hard to understand. It wasn’t the right attitude. The prevailing cultural norm is to regard those with cancer as soldiers fighting a war, brandishing the indispensable weapons of hope and positive thinking. People seemed to think it was their duty to act as recruiting sergeants and push Hugh forward to the front line, equipped with ”
And we see where the physician fails during this time.
“That’s right,’ she replies. ‘And when I contacted them, they couldn’t believe that neither the oncologist nor the GP had ever suggested getting palliative care. They told me palliative care should be brought in at the beginning, when the diagnosis is made, not towards the end like I’d assumed. That’s why I contacted them. Because he was going downhill and I knew the time was coming when I needed that help to care for him at home. So I downloaded a form from the internet and sent it in.”
Who should read this book? Anyone that has been a caregiver because it illuminates that what we experienced and we learn we are not alone or if we cannot find words or emotions you will find them on these pages. Anyone who is a friend of a caregiver. Anyone who may become a caregiver. Anyone who will be cared for or is being cared for. This book is a must read in todays aging population and healthcare system.
#dwdchat #eol #caregiving