Last week I was in Grafton where the jacarandas and silky oaks are in full bloom: where the cabbies are talking of swarms of flying foxes and where it has 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. A self employed builder he built the house 30 years ago. He and Helen had raised four children there. He was about my age. So was Helen when she died from bowel cancer exactly nine months ago.
We go into the coolness of the kitchen. Gary gives me a glass of iced water. There are plates of fruit and biscuits on the surface. Mugs wait to be filled with coffee or tea.
“Shall we do it here or out back?’ he asks
I look at the kitchen table, then ask to look out back
The view is stunning. Golden fields of swaying grasses. The Grafton hills framing the horizon.
‘Helen loved to sit in here” he says.
Let’s do it here then. I say
We carry in chairs from the kitchen; arrange them in a circle around the two seater cane couch.
I place the recorder on the table, put consent forms and information sheets on the chairs. Gary hesitantly spreads the photos he has taken around the recorder. A cup of tea; a chair; a toilet; pantry shelves brimming with food; a list of names; a mobile phone; a basket full of prescription drugs and syringes.
“They are great photos Gary; hard to do with a disposable”.
The others start to arrive. Six women. 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, the group who made it possible for Helen to die at home, in her own bed. These are the people who did the ironing; took Helen out; lay on the bed with her; 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 and came around for happy hour drinks at the end of each day.
They have come to tell their stories, and to support Gary to tell his. They talk about love and sadness. About how they just knew what to do when. 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.
Half way through, Pam, who is still silently crying, says “I know this is not what we are here to talk about, but Gary I need to say. This is the first time have been back in the house since Helen died. I am sorry I haven’t come before. I just couldn’t. I’m such a sook”
Susan pats Pam’s thigh. Marilyn hands her a tissue. Gary makes a joke. We pause. The others ask the things they have not wanted, or dared to, until now. Does he still sleep in the bed? What days are the hardest? Would he do it again? There are tears and shrieks of laughter muddled together. Emily goes to make cups of tea. Marilyn makes a speech about how proud she is of him. 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. Helen hated hospitals. We all do. The food is horrible. The bed is uncomfortable and only has room for one. There is no privacy. There are visiting hours. The toilet can be occupied when you need it – and she had bowel cancer. The toilet was important. Having her at home just made it easier for all of us.”
I leave overwhelmed at just what ordinary everyday people are capable of. At their generosity. 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. At their ability to talk to a stranger about this in the hope of doing more good in the world. And I am reminded of the words of the head of a palliative care unit when I asked him how they support home deaths:
Really what WE can do is, 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 really … we can … take them through the steps of what is technically a very simple thing often, but emotionally very heavy and complicated
You know… when people are asked where they would like to die, 80% say at home. 140 000 people die in Australia each year, and most of these deaths are expected. Yet only about 17% of people die where they chose. This was one story of a small group of people who worked, played, laughed and cried together so that Helen could die where she chose. This was a story of ordinary people doing something quite extraordinary.