When I reflect on my experience caring for my mum during the final chapter of her life, I realise how much we didn’t know, and how much I wish we had.

Mum’s condition was complex and fast-moving. She had recently been diagnosed with terminal breast cancer, her second battle with the disease. But it would not be the cancer that claimed her life. A rare autoimmune condition, scleroderma, combined with aHUS (atypical hemolytic uremic syndrome) and resulting organ failure, made her situation increasingly complicated. Her team of specialists was focused on solving what they could, but there was very little space for conversations about end-of-life or what support might look like for us as carers. Looking back, I wish we’d known more about palliative care, not just as something that happens at the end, but as a way to improve quality of life in the months leading up to it. We didn’t realise how much support we were missing until it was too late.

The truth is, we were grieving long before Mum passed away. That sense of loss started the day she received her terminal diagnosis. And it deepened every time her condition changed, every time we had to adjust again.

We didn’t have medical or occupational therapy training. My dad, my sister, and I were doing our best to help her shower, get in and out of the car, move around the house. We would have benefited enormously from some basic carer guidance. Just someone to show us how to lift safely, or help with daily tasks in a way that preserved Mum’s dignity and our sanity.

If you're just beginning this journey, here are a few things I wish we’d known much earlier:

• Ask for support early. Don’t wait until things are overwhelming. Request referrals to community nursing or allied health support through your GP, specialist or hospital.
• Start palliative care conversations sooner. Palliative care isn’t just about the final days, it’s about improving quality of life and supporting the whole family.
• Organise a family care meeting. If there are multiple specialists involved, try to coordinate a shared meeting so everyone can hear the same information and clarify the plan ahead.
• Use shared notes. We found it helpful to track medication, symptoms, and doctor questions in a shared app so we were all informed and aligned.
• Advocate without guilt. Ask questions. Speak up when you don’t understand. You’re not being difficult, you’re doing your job as a carer.
• And don’t try to do it all alone. You don’t need to be a hero. Accepting help is a strength, not a weakness.

Her final seven days were spent in ICU. She was too unstable to be moved to palliative care, but the compassion shown by the ICU nurses at Calvary Adelaide was extraordinary. They allowed us to be by her side 24/7. We never left her. Those days were traumatic and beautiful in equal measure.

I will never forget the moment Mum told us she didn’t want to keep fighting. From then, we walked with her right through to her final breath. It was a privilege to sit with her in that sacred space. I know many people don’t get that opportunity to wrap someone in love as they take their final steps.

Oddly, even in those final hours, Mum’s sense of humour came through. My dad said he’d never seen her so funny in all their 49 years together. Her medical specialists came to say goodbye, telling her they were sorry they couldn’t solve her condition and what a pleasure it had been to have her as a patient. It was heartbreaking.

Balancing being a daughter and a carer… that’s something I still haven’t fully made peace with. I didn’t feel like I was a good carer. I wanted to fix her. I felt powerless and guilty all the time - for not knowing how to help, for getting frustrated, for being healthy, for not getting married or having children so she could be a grandma. I was running my business and trying to hold it together — for myself, and for our family. In the last six months of her life, everything else in my world took a back seat.

I often think, "What else could I have done?" The reality is, the outcome was always going to be the same, we were just talking about time, and the quality of that time.

Among the challenges, there were people who made a real difference. We are so grateful to Annabel from Tennyson Cancer Centre in Adelaide, who stepped up and took ownership of Mum’s care, even when it extended beyond her scope. Her support made a huge difference to mum and to us.

If I could offer anything to someone currently caring for a parent at end-of-life, it would be this:

• Carers need to care too, it’s okay to take time for yourself.
• Don’t be afraid to ask the medical team questions.
• It’s okay not to be okay, and it’s okay to ask for help.
• And most importantly, take time to simply be with your loved one, not as the patient and the carer, but just as yourselves.

Because those moments are the ones that stay with you.

Anna Troptsidis
29 July 1955 - 4 April 2024
Love you always and forever

If you are a carer supporting someone at the end of life, CarerHelp has information and resources to help you.