CarerHelp, a new resource to support unpaid carers, will be launched at Parliament House on Thursday, 17th October during National Carers Week 2019.
Developed as part of the Australian Family Carer Toolkit Project, this new resource helps to prepare unpaid carers to care for a partner, parent, child or friend at the end of life.
“Caring for a relative or a friend who is dying can be a rewarding yet challenging experience. Based on a significant volume of evidence, we know that carers need information about how to recognise when death may be on the horizon, what to expect when someone is imminently dying, and to know where to get help and support. Importantly, carers who are more informed and better prepared for their role are less distressed, feel more competent, and can cope better during bereavement. CarerHelp is designed to focus on these areas, in order to improve family carer wellbeing,” says Project Lead Professor Peter Hudson, an international expert on family caregiving in palliative care and Director of the Centre for Palliative Care in Victoria.
“CarerHelp supports carers to learn what to expect, communicate, plan ahead, and make shared decisions. This is important as more than 160,000 people are expected to die each year In Australia. The overwhelming majority of these people will need the support of a carer, particularly those who are living at home,” adds Professor Hudson.
Jessica Freeman, a carer, says that it was crucial for her to provide end-of-life care for her Mum who was diagnosed with pancreatic cancer. “It was important for me, as I wanted to adhere to my Mum's wishes to be cared for and die in her own home. I wanted her to be as comfortable as possible. It was also important as a way for my family and me to spend these precious moments together.”
Looking back, Jessica says that she wishes she knew “more about the dying process and what to expect so that I was perhaps better prepared mentally, to have the correct equipment in place from the outset. My Mum's condition deteriorated quite quickly at the end.”
Another carer, Imelda Gilmore, says that it is important for carers to know what to expect and “be prepared for the startling rate at which the disease can progress.” She adds that carers “will only get one chance to support their loved one through this extremely challenging experience – that's why it's worth getting as much guidance and support as possible.”
According to Professor Hudson, “CarerHelp fills a gap for carers. It supports them by providing high quality and practical information on symptoms; support services; common financial and legal issues; managing communication and wellbeing; and other resources, which specifically address the end of life context. Five pathways provide easy to understand guidance. Each of the pathways contains tailored resources, tools and information to help in caring for a person at the end of life.”
The Australian Family Carer Toolkit Project is a collaboration of the Centre for Palliative Care of St Vincent’s Hospital Melbourne and The University of Melbourne; CareSearch of Flinders University, Carers Australia and The University of Technology Sydney. Professor Hudson acknowledges the invaluable assistance of the national expertise within the project’s Reference Group and the generous sharing of carers’ personal experiences. He notes, “Carers, health professionals, and experts have collaborated to develop the content of this innovative resource, which has been brought to life by the CareSearch Project team from Flinders University.” CarerHelp is funded by the Australian Government Department of Health.