Professor Debbie Horsfall has led the Caring at End of Life research team at Western Sydney University for the past 10 years. Over this time they have completed a number of projects about caring at home and what it takes to for networks to come together to care at home. This is a story that captures one of the experiences from the research.
The space of the possible
Last summer I was in Grafton where the jacarandas and silky oaks were in full bloom and where it had not rained for 8 weeks. The burnt off grass was crunchy underfoot as I walked to meet Gary who was waiting for me on the porch. He was about my age. So was Helen when she died from bowel cancer nine months ago. I have come to hear his story about caring for Helen.
The others start to arrive. One of Helens and Gary’s daughters, two work mates, one family friend from school, a hockey buddy, a sister. This is the core group who made it possible for Helen to die at home. These are the people who did the ironing; washed up; delivered meals; showed Gary how to use the washing machine or just gave him some time to himself.
These are the people who laughed and cried together and came around for happy hour drinks at the end of each day. They talk about love and sadness. About how they just knew what to do. Or how they stumbled along, showing up, being there and not really knowing what to do or say but coming anyway. Taking the risk. Knowing it was necessary and that Gary couldn’t do it on his own. Knowing that it takes a community, however small, to do the work that needs to be done. There are tears and shrieks of laughter. Emily goes to make cups of tea. I notice how they are still taking care of each other.
“You know the first blow is when you get the terminal diagnosis” says Gary “the kick in the guts is when you are then told it has to be done in hospital…The food is horrible. The bed is uncomfortable and only has room for one. There is no privacy… Having her at home just made it easier for all of us.”
I leave overwhelmed at what people are capable of.
At their willingness to show up and support each other when times are about as tough as they can get.
At how this changes them, their relationships, and their communities. And I am reminded of the words of the head of a palliative care unit when I asked him how they support home deaths: we can provide reassurance around the fact that it is natural. Yes, there’s some stuff that’s going to happen that may be confronting but none of it is rocket science ... we can … take them through the steps of what is technically a very simple thing often, but emotionally very heavy and complicated.
This is one story of a small group of people who worked, played, laughed and cried together so that Gary could help Helen die where she chose. This was a story of ordinary people doing something quite extraordinary.
This blog is part of the ‘Did You Know?’ blog series where D2KDay is bringing to life conversations and information around death, dying and bereavement.