I’m a palliative care researcher … and a son. So when my 85 year old dad was told he would die soon, I walked the tightrope between my professional capacity as a palliative care nurse and as Wim’s youngest son.
An inpatient in a large, tertiary hospital in a major metropolitan centre in Australia, he was receiving good palliative care in the specialist inpatient unit; however, it was his – and all of our family’s – wish that he return to his home town for his end-of-life care.
The problem? “Home” was a four-hour drive away, and it was suggested he was too sick to travel and could even die in transit. This was discussed at length with my parents and all the family, checking and rechecking that the full implications were clear. But dad was crystal clear about one thing. “For the third time!” he said, “I want to go home, or die trying.”
We got him there.
Dad spent his final days in the 9-bed hospital in his rural home town. And as both the ‘palliative care nurse in the family' and a son, I had the privilege of providing his care during his transfer home and in his last days.
So often in my work as a community palliative care nurse, I’ve encountered people with ‘a nurse in the family’ or ‘my friend who’s a GP’. This would bring a couple of things – clinical knowledge, and an ability to navigate a monolithic health care system. Other families were fierce and effective advocates for their dying relative. Others still were too distressed, or too tired, or too busy doing care to navigate the system. We were lucky – as a son, and as family, we had the capacity to provide dad’s care. Not that that made it easy. But we did it.
5 things I experienced being a carer:
1. Someone’s got to have the helicopter view to keep track of everything. This can free up others to attend to the detail.
2. Handing over parts of our family’s ‘operations’ was invaluable – one to ‘run the house’, another to look after the money, another to coordinate the flow of information, and so on.
3. To make it happen, we had to be brave. Sometimes we weren’t so much, and other times we really, really were.
4. It’s really tiring.
5. Being a family carer is not about being one thing. Even being in the business of palliative care, I’m still my father’s son.
Dr John Rosenberg is registered nurse with a clinical background in community-based palliative care. As a active researcher since 1999, he has focused upon social models of health care, the application of health promotion principles to palliative and end of life care, and community development approaches to the support of dying people.
You can read more about him and view his published works here.