More than fifty people came along to Reader’s Companion bookshop on May 29 to celebrate the launch of A Hospital Bed at Home: Family stories of caregiving from diagnosis to death.
I gave a short speech, saying that while being a carer for someone with a terminal illness can be rewarding and satisfying, families often take on the role with limited information and no experience, and find it very difficult. It is not uncommon to hear it described as “the hardest thing we have ever done”.
I helped care for my mother when she was bedridden with breast cancer that had spread to her bones and brain. During this time, I kept a detailed account of my thoughts, fears and worries in my diary. After Mum died, I enrolled in a creative arts PhD, feeling compelled to investigate how other caregivers coped by researching and writing their stories, as well as my own.
The result is a collection of mini-biographies describing how six families accompanied a loved one through the landscape of terminal illness. Sadly, the stories all end in the same way, with a death. But in no way are they the same story. For me, what shines through is how each family forges their own path through unfamiliar territory, and how complex and fascinating their relationships are.
Rebecca Spence, one of the caregivers profiled in the book, was invited to launch it and did so gracefully and eloquently. Rebecca and I did a reading from her story, and my dear friend Barbara Burton, who nursed her husband Professor John Burton for six years when he became a paraplegic, read beautifully a section of my memoir.
From Rebecca’s launch speech:
When you make the decision to become the carer, your world narrows and narrows, and your days are centred around the minutiae of care – the medicines, the medical visits, the lifting and laying, and the changing of dressings and bed linen. Each day passes in a rush and seems to last forever all at the same time. Boredom, joy, sadness, fear, and thank goodness often humour are all common visitors. This book, this wonderful book, makes the ordinary sacred because it documents the journey of the dying, and the impact of that upon those that love them most.
Dr Rebecca Spence, who launched the book, Dr Janene Carey, who wrote it, and Dr Glenda Parmenter, who co-supervised the PhD thesis containing the manuscript.