WELLBEING

The reality of being a carer: ‘You end up in an alternate universe’

17 October, 2023 . 0

Being a carer can be hugely challenging and life-altering. National Carers Week is a time to recognise and celebrate the selflessness, commitment and resilience involved.

It was 2016 when Sydney mum Meredith Coote’s lively and vivacious 14-year-old daughter came home from a music camp feeling unwell.

Gabrielle, a teen who excelled at school and adored music, art and her younger brother, had developed meningitis – an infection that causes inflammation around the brain and spinal cord.

While a gravely ill Gabrielle survived the illness, the touch-and-go battle profoundly affected her mental health, leaving Meredith – who, ironically, had spent 38 years working in the disability, aged care and mental health sectors – facing a daunting reality.

A carer’s journey

“Seven years ago my beautiful, bright, sparkly daughter caught meningitis and nearly died – the girl we got back has never been the same again,” Meredith says.

“We’ll never know for sure what the impacts of the illness were mentally or physically; however, it was the beginning of a journey of such loss for her and all of us – lost education, lost friendships, lost opportunities, lost dreams… at times, lost hope.”

For Meredith that loss ultimately also meant giving up a job she loved, having to constantly say no to social occasions, and experiencing the financial impact of endless visits to doctors, psychiatrists and therapists, as she and her husband searched for answers.

“You end up in this alternate universe, in the role of a carer,” she says.

“Whether you’re a brain surgeon or a barista, if you have a close family member in crisis, you have to assist when they need you; there is often no one else.”

‘Carers are just ordinary people’

Meredith says the financial, physical and emotional toll is enormous.

“Even to do things for yourself like going to the dentist, doctor (or) a car service, many things start to suffer; you can’t commit and can never be sure you’ll get there,” she says.

“It means finding and sharing your story with people who will understand, who will excuse the last-minute cancellations, the missed appointments and the social disappointments.”

While Meredith’s commitment to Gabrielle knows no bounds, she insists she’s no superhero.

“Carers are just ordinary people who have found ourselves in these roles through what life has dealt us,” she says.

“It’s what you do, and you truly aren’t doing anything extraordinary.”

Meredith says it’s important to remember that the person you’re caring for didn’t choose to need care.

“The impact on their lives is often even greater,” she says.

National Carers Week: Showing support

Carers Australia chief executive Alison Brook says Meredith’s story represents the challenging reality of resilience and sacrifice that caregivers face every day.

“More than one in 10 Australians are carers and they make an incredible contribution to our community, as well as our national economy,” Alison says.

She says carers face much higher levels of social isolation and financial stress, and often have little time for self-care as they deal with a range of complex challenges.

“They need all the support we can provide, which is why we’re urging everyone to support National Carers Week … it’s a time to recognise, celebrate and raise awareness of the 2.65 million Australians who provide care to the family members or friends who need them,” Alison says.

“It is the selflessness, commitment and skills of people like Meredith who collectively weave together the essential social infrastructure, whose contribution to our country far exceeds what any monetary figure could buy.”

National Carers Week runs from October 15-21. For more information, visit carersweek.com.au.

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Written by Liz McGrath.