The TRUE COST of CARING

The Royal Commission revealed a sobering 3 million informal carers powering an undervalued and underpaid silent workforce. Here, award-winning poet and advocate Sarah Holland-Batt, whose father was diagnosed with Parkinson's disease when she was a teenager, shares the reality of Australia's care crisis

The year I turned 18, becoming a carer was the last thing on my mind. I was busy saving up to buy a pair of boot-cut corduroy jeans that didn’t suit me, and accruing facial piercings that made my parents nervous. I was impatient to travel the world, go to university, fall in love and make all the predictable mistakes.

But that same year, just as I was finishing high school, my father was diagnosed with Parkinson’s disease, and everything changed.

The dad I knew was brilliant and slightly eccentric, in the best possible way. He worked as a metallurgist but had a dazzling array of hobbies included playing jazz piano, reading philosophy, composing classical music, writing computer programs, playing golf and inventing gadgets in his shed. He was witty, and could recite entire Monty Python routines by heart. His brain went a mile a minute. He was the last person I ever imagined living with a neurological disease.

Dad responded badly to his diagnosis. He retreated from the world, spending hours in his study listening to Beethoven and Bach. Fair enough, I thought. Nobody wants to be diagnosed with Parkinson’s disease.

Without warning, my mum and I were drafted into the ranks of Australia’s 3 million informal primary carers: family members, spouses or friends who do their best to look after those they love, often with little support and no formal training. The vast majority of this group – about 70 per cent – are women.

Like most carers, Mum and I did our best to navigate each hurdle as it arrived: doctor’s visits, specialist referrals, changes in medications, infections, injuries. The challenges piled up. My father lost his coordination and his mobility. There were personality changes. Minor medical procedures, then major ones, then neurological surgery.