Following her mother’s death from cancer, journalist and author Janene Carey began investigating the personal stories of other caregivers and the feelings of grief, guilt and uncertainty that can accompany the experience of caring for a dying loved one at home.
Her four-year journey, which involved in-depth interviews with five families, has culminated in a book of narrative nonfiction called A Hospital Bed at Home, which provides a deeply moving insight into the personal highs and lows of home-based palliative care.
The book manuscript was successfully submitted as part of a PhD in writing, and a story from it was shortlisted for a major Australian literary award, the Calibre Prize.
Dr Carey said she set out to capture how family caregivers coped in a situation that is the exception rather than the norm in Australia. Today, only 16 per cent of Australians die at home, despite the majority of people identifying it as their preferred place to die.
“There was a report from Palliative Care Australia a few years ago titled ‘The Hardest Thing We’ve Ever Done’, which was a quote from one of the participants to the national inquiry. For many caregivers the experience of caring for someone with a terminal illness can be very challenging,” Dr Carey told Australian Ageing Agenda.
“While caring is an act of love, it can become very tiring and wearing in all sorts of ways, both physically and emotionally. People often muddle along with whatever resources they can manage to get hold of and sometimes they are in short supply or families are not told about them.
“I hope the stories will be a supportive resource for caregivers, and also serve to increase understanding and empathy in the general community, and among health professionals and policy-makers, about the problems faced by family carers and the kinds of support they may need.”
She said it would be very useful for professional carers to have a deep understanding of the emotional journey that families go on, and the fears and anxieties they may carry.
“It would certainly help to see families as a partner in the caregiving process and for the community generally to be more willing to talk about death and what it is like to care for someone who is dying at home.”
From a couple facing separation after forty years together to a daughter called home to Ireland to nurse her dying father who is refusing to eat, the book explores some of the different attitudes we hold about death and the family dynamics that have to be navigated during this stressful time.
“I also wanted to find out what their relationships within the family were like and how openly they could talk with each other about what was happening,” said Dr Carey.
Dr Glenda Parmenter, a palliative care specialist at the University of New England who co-supervised Dr Carey’s PhD thesis, said a strong commitment to fidelity and veracity shaped the gathering and documenting of the stories.
“The result is a true-to-life and rich account of the varied experiences of these people. Reading these beautifully presented real life stories has made me laugh and cry, sometimes both at the same time,” Dr Parmenter said.
The September-October edition of Australian Ageing Agenda carries an in-depth article on the trialling of new community-based palliative care packages.