The carer’s load cannot be truly understood unless you have been in the situation or supported people seeking help for a loved one. The feeling can be heavy, anxiety-ridden, and downright exhausting. The carer is not only managing and navigating their own life, but they also have the added responsibility of managing another’s, plus all the other elements of caring for someone whether it’s being a parent of a child, supporting a family member at the end of life, or caring for someone with a disability.
My perspective comes from both lived experience and working very closely and intimately in these areas. Having lost both parents at a young age to cancer and heart disease, I was put into a carer role as a young adult. It came with lots of fear and responsibility, managing a world I was new to while caring for parents who, in my young mind, were meant to help me navigate life. Losing them sent my life into a tailspin, forcing me to grow up very quickly.
My career in nursing was mainly as a neonatal nurse, which I absolutely adored. My favourite skill was to help support mum’s breastfeeding, as I had faced every challenge with this in my own personal experience and knew how important it was on so many levels. In the special care/neonatal intensive care unit, parents were often highly stressed, exhausted, and hanging onto every piece of information you shared about their newborn child whether they were premature or unwell. Some parents were there for short stays, while others remained for drawn-out months. The exhaustion and fatigue were palpable.
After eleven years in that specialty, I felt a strong calling toward palliative care. I often found myself shaking my head, unable to fully understand why something was pulling me toward this field when I’d spent so long working at the opposite end of life. Eventually, curiosity won out, and I asked the unit manager at McCulloch House at the time if I could try it.
I will never forget my first day, walking into that home-like building. Looking down the long hallway, it felt as though destiny’s path had opened right in front of me. I was home.
It was the most fulfilling, heart-wrenching, and spiritual time of in my life. I saw every presentation imaginable and, interestingly, I felt I could particularly connect with young adults losing their parents, funny about that. This was a space I was unafraid of and could really speak to them on their level.
It was also an area where I witnessed the pivotal point when carers had reached their end. Many had wanted to keep their loved ones at home but, without support, were unable to manage until the end for various reasons. Often the care became too intense, or the carer’s “tank” was completely empty. I could see that the level of support in the home determined the length and sustainability of what was sometimes a marathon journey.
In the rural town of Mansfield, two philanthropic families came up with a beautiful idea: creating a community-run hospice where people could experience the end of life in comfort, fully supported and at no cost. It looked after not only the person but the whole family as a unit.
The entire community got behind the idea, and ‘Rosehaven’ was born.
It is a five-bedroom home set on four and half acres of beautiful gardens that support families by providing respite for aged care people with disabilities, and end-of-life care. Ideally, every community or town should have one of these. There is a task for someone!
Rosehaven placed a strong focus on the carer. We hosted carer community morning teas in our community space and ran “care for the carer” relaxation sessions led by volunteers. We also organised free movie catch-ups at the local cinema, which were eagerly embraced. But this is just a snapshot of all the amazing services they offer.
At Rosehaven, we witnessed firsthand the exhaustion of carers when they dropped off their loved ones, often accompanied by a sense of guilt. But that guilt would soften once they saw what a great time their loved one had with us and experienced the benefit of being able to rest and focus on themselves.
This support was tailored to their needs, and it was always so lovely to hear the feedback when they came to pick up their loved one. They might say they had finally slept through the night or had managed to get their hair done and feel human again.
Our relationship with the carer would begin to grow as they started to feel that we formed part of their extended family, and everyone was happier for it. My sense of the importance of supporting carers grew stronger with each encounter. I could see how this prevented crisis situations and reduced earlier presentations to hospital.
While exploring the development of my nursing and palliative care service, I discovered the End-of-Life Pathway through My Aged Care. It provides around $25,000 in funding over a 12-week period (with flexibility to use it over 16 weeks) for people with three months or less to live, once assessed and signed off by a GP or nurse practitioner.
My heart genuinely leapt when I found this out. It meant carers could be supported with funding for nursing, personal care, allied health, household help, and respite for carers. This is also in conjunction with their community palliative care team working alongside.
The statistic I keep coming back to is this: 70% of people want to die at home, yet only 14–22% actually do, when death doesn’t need to be medicalised and can be done at home if the carer is given real, sustained support to manage over time.
When we support carers, everyone benefits. The loved one, the carer, an overstretched medical system, and, ultimately, the peace of knowing you did the best you could with what you had at the time.
For anyone wanting the full eligibility details, these are available on the My Aged Care website.
To learn more about Rosehaven click here: Rosehaven Hospice
