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For many people, becoming carers is the only way to keep their families together

Article by Marissa Pidgeon, Head of Product Development at Medibank.

National Carers Week takes place every October.  In Australia, there are close to three million unpaid carers, the majority of them are women, and 1 in 10 are aged under 25. Caring is a topic very close to my heart. For most of my life, I’ve taken on the role as a carer of a sibling and my parents. 

My brother Rhys and I were born 18 months apart. As young children, we were inseparable and enjoyed a close bond often shared by siblings close in age. However, our first few years were not spent at home, but instead at Princess Margaret Hospital and a myriad of other health centres. Rhys was born with spina bifida myelomeningocele and hydrocephalus, a congenital birth defect where the spinal column doesn’t form, and with the spinal cord exposed through a hole in the back. Hydrocephalus results from too much spinal fluid on the brain.

Little boy sitting on hospital bed

Rhys as a child during one of his hospital stays.

Life as a sibling of a person with a disability comes with extraordinary benefits but a healthy dose of challenges. The truth is Rhys taught me about resilience, optimism and the value of a cheeky smile like nobody else could, and in return, I relished being his daytime protector, his helper and taking off in his wheelchair! The hardest parts were seeing my parents cry as he teetered between life and death, and their despair as they fought for equality at school, healthcare and inclusion.

When I was 14, my mum was diagnosed with Stage 4 breast cancer and was given a two-year life expectancy. The next few years were a blur as our family rallied to cope with the additional medical demands on top of the care of my brother. My mum was the major breadwinner in the family so it meant we had to adjust to the financial challenges that come with fighting for life and being unable to work. My dad had a small business and began work at 4:30am. While he was at work, I would ride to swimming training and then come home to complete all the personal care tasks for my mum and brother. Our family was a proud one with the mantra ‘what doesn’t kill us makes us stronger’. However, I look back and wonder how it didn’t kill us.

Family photo

With mum and dad.

Mum fought bravely for seven years, far beyond what any of her medical team expected. Then five years ago, my father received the devastating news that he had pancreatic cancer. For those not familiar with this disease, the statistics are horrifying – 20% survive one year, with only 7% making it to five years. Once again, our family powered into overdrive. At the time I had a three-year-old and an 18-month-old and had just returned to work at Medibank. My dad had been incredibly selfless as a full-time carer for my brother and my 94-year-old Nana. When he should have been enjoying a well-earned retirement, he barely holidayed and had a limited social life. With Dad unwell, the challenge of caring for my family rested with my husband Andrew and myself. Rhys came to live with us when my dad underwent treatment and we became an advocate and care coordinator for Nana, who insisted on staying in her two-storey home. I’ll admit that I tried to be superwoman during this period and what I couldn’t achieve during the day, I would then work to complete at night. Too proud to admit that I couldn’t achieve everything, I resisted help and became a machine, viewing life as a to-do list.

Dad and two sons

My husband Andrew with our two boys.

As Dad’s health continued to decline, the reality began to dawn that this was not going to be a temporary arrangement, we had to make changes if we were going to survive. My husband and I decided we would become Rhys’ formal guardians, a process not as straightforward as you would expect. Siblings are not formally recognised as potential guardians, so began a long and arduous period of having to provide evidence of Rhys’ conditions and our capabilities. Navigating legal requirements became just another item on our list.

It is during these times that you realise how important the village of people you build enables you to showcase incredible resilience. I was fortunate to have the support of a very patient and tolerant husband, his family, and our friends who just ‘knew’ the right times to offer a walk, coffee, playdate, or drop off a meal to get through the hardest times. At one point, we had three relatives in different hospitals. My employer, Medibank allowed me the flexibility to ensure I could keep contributing even with the challenges I was facing, including hosting Q & A video sessions from a hospital bedside numerous times. It is amazing to think that what I consider my biggest work achievements were delivered during this period – Health Direct re-tender, clinical leadership structure, CHAMP implementation and 1800 RESPECT First Response & Specialist Counselling.

Work colleagues celebrating a win

With my Medibank colleagues during our Hack for Health initiative (I’m far right).

There is no ideal candidate or job description of a carer. Disability and disease do not discriminate – they don’t strike the family that is best able to meet their loved ones’ needs. For many people out there, stepping up as a carer is the only way to enable families to stay together and prevent loved ones from being fitted into services that don’t properly accommodate their needs.

Solo photo of man on holidays

Rhys during a holiday in Bali.

I know that there are many carers in our Medibank village who bring their best self to work every day and care so diligently every night. So in light of National Carers Week every October, I would ask everyone to look out upon their village and if you know of someone who is a carer – start a dialogue, offer help, or just highlight the wonderful contribution that they are making.

Article by Marissa Pidgeon, Head of Product Development at Medibank.

  #accessibility #diversity #flexBetter #flexibility #health #people #support #wellbeing

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Karen Branley

Marissa, you are truely an inspiration to us all. Not only are you an amazing carer in your own family, you always have time to listen to others and offer valuable advice and friendship. Thank you for sharing this wonderful, yet heartbreaking story.