A personal story of caring for someone who is dying at home
By Jeremy McKnight, founder of Shannon's Bridge
My first involvement with caring@home was listening to Professor Liz Reymond speak at a conference in Tasmania hosted by The District Nurses.
What struck me immediately was her down-to-earth approach about helping people in palliative care. Liz, Karen and her entire team sincerely care about what they are trying to do, not just from a clinical aspect but to make something accessible to everyone in a time when they need it the most.
The caring@home project is such a wonderful project in that so much love, time and energy was put into its design and implementation. People who have been and are carers were spoken to at length to gauge what their real needs were. Experts from every related field formed a panel to build and help grow this wonderful project. I was humbled to be a part of this panel and again and again during these meetings the focus was always ‘What’s the best way that this will work?’. Procedures and medical requirements were strictly adhered to but always the approach was ‘Would this help the carer and family?’
The figures are well known Australia-wide regarding peoples’ wishes to be at home when they die and that sadly very few are allowed the opportunity to do so.
Our daughter Shannon had leukemia and after two years of treatment, she was asked where she wanted to be when she died. Shannon said, “At home with my family in my bed.” After what my daughter had been through, I wanted to do anything I could to make her last wish happen, as much as the thought of it tore at my soul.
We were fortunate to have the help of Dr Claire Hepper and Dr Allison O’Neill who helped Shannon and trained us to administer medicines for breakthrough symptoms to Shannon if she needed them. Over the next four days that we had Shannon at home we used medicines four times to control Shannon’s symptoms. Without these medicines and support, Shannon would have had to go back to hospital where she didn’t want to be. Shannon died at home with us.
After Shannon died, we started a charity called Shannon’s Bridge which helps people, carers and families in palliative care and will continue to do so.
The caring@home project allows people to have the choice to be at home if they want to be when they die. It gives the person themselves confidence that if something should happen then their carer is trained to help them. It teaches the carer that they can and how to help this person. It is such a beautiful gift at a time in these peoples’ lives when they can be so sad and helpless.
Living with and watching someone you love die is so hard, but the caring@home package and the support that comes with it allows help, care and love. There is no greater gift.
Jeremy’s story has been reproduced here with permission. caring@home thanks the McKnight family for sharing their story.