“I just want to go home, let’s just go home, you can look after me there and stay with me” are the words etched in Sydney woman Melanie’s mind when she recollects the death of her father Robin as he sat in a hospital shortly before his death.
The system did not afford 68-year-old Robin the option of dying comfortably at home in palliative care, surrounded by his family. He died in hospital six months after being diagnosed with advanced, aggressive prostate cancer.
Robin’s daughter Melanie was his main caregiver during his illness and says when it was clear her father was going to die soon, she just wanted to take him home: “And he wanted that”.
“I said ‘look, I’m smart. I’ve followed the medical condition of my dad. I have watched the nurses inject him with everything. I know the process. I can manage this. I have the time if you can just let me take my dad home, teach me how to look after him, I’ll do it. And if he needs to get carried to the bathroom once a day, just send someone over once a day to help me carry him or teach me how to lift him up in the bed. I’m strong’,” says Melanie.
“The capacity was there – my mum was there; I was there. We are two very strong, able people. To look after him 24/7, all we needed was just a little bit of extra support to guide us.”
Robin had been treated with radiotherapy, chemotherapy and thalidomide but his cancer progressed rapidly and he spent the last three weeks of his life in hospital. Melanie says it would have been better if Robin had been able to be transported home towards the end.
“That would have made such a big difference,” says Melanie.
His bedroom looked out into a beautiful garden courtyard. That was his home where we spent so much time together. And I just had this vision of him dying in bed with all of us there around him, looking out into the sunny garden.
“And that is what he wanted. That’s what he wanted when he asked me to take him home.”
Melanie says she doesn’t want other families to feel the guilt she feels about her father not getting the care he wanted at the end of his life.
“I know if he was in a position to tell his story, he would have said the same thing … for all the other families who are stuck in our position in the future,” she says.
“I don’t want anyone to feel that guilt. It shouldn’t be put onto the families either. “I still live with that guilt.”
Melanie says her family just needed a little bit of assistance: “We just needed a bit of extra help. We could have managed.”
When our loved ones are diagnosed with a terminal illness they deserve the best possible care and support. But, right now, that’s not always possible because there's a shortage of specialist palliative care in NSW. That’s just not good enough. We need the NSW Government to fund an additional 139 doctors and nurses and to meet the palliative care needs of Aboriginal communities.