Caring for a loved one is often a hard road to travel, and Department of Human Services Senior Communication Officer Emma understands this all too well.
A few years ago, Emma’s mother was diagnosed with a Stage Four GBM brain tumour – an extremely aggressive form of brain cancer less than 1 in 10 people survive for more than 5 years.
She was 50 when she found out she had this disease, and fought valiantly for 15 months before passing away in July last year.
“The cancer came as a massive shock to us all. She’d been having some bad headaches but nothing that made us think anything was seriously wrong. One CT scan was enough to start the avalanche that changed our lives forever,” Emma said.
Emma’s caring duties started straight away.
“When I first started looking after my mum, I didn’t see myself as a ‘carer’; I was just doing what any daughter would do.
“As soon as mum was diagnosed, she was rushed from Canberra to Sydney for immediate care and surgery at Royal North Shore hospital.
“The whole family followed her there, including my 8-month old son. We made sure she was looked after around the clock – from taking care of her clothes, food, comfort, and legal, medical and insurance paperwork, to bathing and dressing her, as well as helping with rehabilitation and pain management.
“Once Mum had recovered enough from her initial surgery, she underwent 6 gruelling weeks of radiation treatment Monday to Friday, with only weekends to rest.
“This all took place in Sydney, so I juggled travelling backwards and forwards from Canberra, and caring for mum, with all my usual responsibilities as a wife, mother, sister, co-worker and friend.
“Next came 6 months of chemotherapy. This was a particularly rough time as Mum experienced memory loss, couldn’t tell the time, and had difficulty with mobility and getting dressed.
“She also developed mental health issues due to the impacts of the steroids she needed to limit the swelling in her brain.
“By this stage, it was clear she needed around-the-clock care, which my father was unable to provide for her due to his own mental health issues. I was also pregnant with my second child.”
At this point, Emma made the difficult but necessary decision to stop working to look after her parents full time.
“Work was extremely flexible and supportive, and my colleagues did everything in their power to accommodate my situation,” Emma said.
“Before going on unpaid leave, I was able to work part-time hours and take leave at the last minute to help my mother.
“At this point, I accessed Carers Allowance and officially became a carer.
“It wasn’t until then I saw myself as one. I was doing what most people would do – taking care of their loved ones the best way they could.
Things steadily declined for Emma’s mother. With the cancer becoming resistant to all the different chemotherapies and medications, the tumour kept returning.
“A month after her second removal surgery, the beast appeared again. A third surgery was deemed too risky and would only reduce her quality of life,” Emma said.
“After another brain bleed, mum’s precious life was drawing to a close. We tried to keep her at home as long as possible but even with home palliative care services, her needs became too great and she was transferred to hospital and, finally, hospice care.”
Emma feels her story is similar to that of a lot of other carers in Australia, and hopes it will raise awareness of the outstanding contribution carers make every day.
“With caring comes a lot of other issues – the tendency to forgo self-care, become overwhelmed, exhausted and emotionally rocked to the core, along with financial pressures.
“While it’s one of the hardest things I’ve ever done, I don’t regret caring for my mum for a second,” Emma said.
“I’m so fortunate and grateful I had a supportive workplace that enabled me to take the time off that I needed.”
This week (11–17 October) is National Carers Week, a time for us to stop and thank all those carers who put love into practice.
If you know someone who’s a carer – especially any who are doing it tough – why not use this week to thank them for everything they do?
For more information about the support, payments and services available to carers, go to: humanservices.gov.au/carers
For those needing support, please consider contacting one of our department’s social workers by calling 132 850 or contact Beyond Blue on 1300 224 636.