BECOMING A CARER WAS MY TURNING POINT. IT MADE ME STRONG

So what are the solutions? One answer is that everyone needs to care more. A cultural shift is required to ensure everyone takes responsibility for, and recognises the importance of, the caring role.

For Griffiths, workplaces need to enable discussions for the carer to know the workplace is carer-friendly.

“Put [the carer’s role] on the agenda at staff meetings,” she says. “Aim to make it easier for people to take leave from the workplace as carers. It’s old hat now talking about being ‘familyfriendly’ in the workplace. It’s high time we talked about the ‘carer-friendly’ workplace.”

Janine Arnold, chief executive of Carers Tasmania, says government, community and service providers need to work together. “You can’t operate in isolation to support the most vulnerable in society,” she says.

For Penny Clifford, from Alzheimer’s Australia, community education is key – for example, in gyms and schools – to ensure caring, and understanding the needs of others, starts early in life.

“If all gyms had half an hour of education on dementia and mental health, and every school had education on the brain and behaviour, this would be a start,” Clifford says. “If we could get the issue into the AFL, where there’s money, it would be amazing. Carers should not become the forgotten few.”

And what of the invisible carers? “Carers are a linchpin of the NDIS reforms,” Clifford says. “We need to make sure they continue to be supported. At the moment, I worry there’s going to be a crack.”

Arnold says there’s “support around education and training that carers simply aren’t aware exists” because they don’t identify as carers. ‘This is just what I do’ is a common perspective. While being good, in the current climate, it may not be good enough.

Griffiths encourages “coming out” as a carer as an option. Here, we talk to three carers about their roles.

CASE STUDIES Vicki Kember: Cares for daughter ‘Tahlia’ (name changed)

Vicki Kember was working in administration at an East Coast community centre and husband Craig was a concrete contractor when, within six months, four close family members died.

At the time, their daughter Tahlia was 15 and their son was eight. Vicki was having trouble coping and she thinks this is when Tahlia’s mental-health issues also began.

Vicki describes her daughter as a high-achieving, intelligent, mature young woman. When Tahlia moved from St Helens to Hobart to start Year 11, she boarded with her uncle and aunt. Concerns started when she frequently called home in tears.

Vicki says her sister-in-law was supportive, taking Tahlia to counselling appointments. But after a year, her daughter’s anxiety continued and Tahlia started self-harming.

“She was cutting herself with a razor, nail clippers and using a hair straightener on her arms, thighs and stomach,” says Vicki, in the kind of calm voice that seems to come with the role of unconditional carer.

Vicki says the family moved from St Helens to Hobart because they had to. “We had to do that as a family for Tahlia’s wellbeing – and ours – because living apart was hopeless. And it wasn’t fair on Craig’s brother and my sister-in-law.”

While Tahlia was seeing a GP, Vicki and Craig, who are in their 50s, had to start all over again looking for work in Hobart, which took about six months. The change also impacted their son, who was angry at having to move home.

Tahlia moved back to live with her immediate family and her mental health improved. But after about five months she started self-harming again. Vicki says her daughter improved in leaps and bounds after seeing a psychologist who diagnosed her with clinical depressive disorder and suicide ideation (thinking about taking your own life), and gave her strategies around self-harm.

As her carer, Vicki was often down and anxious, upset and angry – but didn’t let on to Tahlia. “It wasn’t her fault,” she says.

Instead, she buried herself in work and self-medicated. “I hit the wine rather too much,” Vicki says. “And it was hard on our marriage. The whole dynamics of the family changed. It was a difficult time.”

The worst time was when Tahlia wanted to show her mother her scars. “It really upset me,” Vicki says. “I didn’t cope well. And because of that, I felt I’d let her down by not acknowledging her pain. Obviously, it was important to her that she shared it with me. I’m now at ease talking to Tahlia about self-harm and physical scarring.”

Clearly, she prefers not to dwell on the past because the future now looks a whole lot brighter. “Mental health is not terminal,” Vicki says. “It’s not a death sentence. It’s temporary – just a small part of the timeline. It is dark at that time, stressful and challenging, but people get better.

“Out of this I’ve become a better communicator and so has my husband. He’s a wonderful, good man, thoughtful and wise, and he really loves his daughter.”

Tahlia is now well and hasn’t had an urge to self-harm for seven months. Vicki recognises Tahlia could have another experience, but they know they’re better equipped. “She has supports in place,” Vicki says. “She’s on medication and she’s wiser about the illness. She sees the signs and can go back to the psychologist, so there’s hope. It’s wonderful to see her happy and achieving.”

Vicki is speaking up because “we need to talk about caring for people with mental illness, bring it into the open”.

She says there is no difference if you’re caring for someone with cancer or treating a broken arm.

“My advice to other carers is to socialise and look after your own health,” she says. “You’re still yourself and you still have your life, even if you can’t work because of your support role.”

Debaki Thapa: Cares for her family

Debaki is a 20-year-old migrant from Nepal with an intense, multidimensional caring role. Since arriving with her family as refugees in Hobart four years ago, she has cared for her mother, who has epilepsy, her father and grandmother, who are living with cancer, and two younger siblings. She had no choice but to be a carer, and has learnt to live with her role.

Debaki says that before becoming a carer she didn’t appreciate the value of family or know how to manage her time.

“I was enjoying being a teenager, spending romantic times with my friends, and that was my way of life,” she says of her life in the refugee camp where she was born in Nepal.

“There was no future in the camp so we were waiting, hoping. Then we got a golden chance to come to Australia.”

Now, she says, caring is her life. “This is me, and it is a valuable place to be. Becoming a carer was my turning point. It made me strong.”

Rather than resenting the hand life has dealt her, Debaki speaks of her love for her parents and her gratitidue for what they have taught her. Her father, in particular, provided her with life lessons at an early age.

Debaki had been a good student and wanted to pursue a career in science. That goal changed when her parents became ill and she couldn’t go to school every day.

While she is no longer pursuing her ambitions, she’s found meaning in being a leader for her family, including as her parents’ guardian. When they first arrived, Debaki made breakfast for her younger siblings, washed their clothes and, as the only English speaker in the family, helped with any problems at school.

A year ago, when Debaki’s parents and grandmother were in hospital in Melbourne, her father asked to talk with her before going into surgery. He told her how he wanted a real home for the family – that he didn’t want to live in a rented house. In a matter of weeks, Debaki had found and organised the purchase of a family home in Glenorchy.

“My father would say, ‘You do it, you be strong, you learn’,” Debaki says. “He expected me to be daughter and son, and not only [that] but a good human being.”