Caring for our carers

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There are currently more than 2.5 million family carers in Australia. And while being able to take a break from caring is one of the keys to improving a carer’s wellbeing, very few actually access any form of respite.

Dragana Kovac, 30
Carer for son Michael and daughter Jessica

Like mums the world over, Dragana Kovac began to worry about her children from the moment she laid eyes on them. Unlike most mothers, however, Dragana’s concerns were compounded by the fact that both her son and daughter would be diagnosed with different medical conditions that would affect their entire lives. “My mind started to race with all the things she would never be able to do,” says Dragana of the day the doctors diagnosed her newborn daughter Jessica (now eight) with Down syndrome. “All I could think was, ‘She’ll never get married. She’ll never have children. She’ll never lead a normal life’,” she says. In the days that followed, however, Dragana’s concerns for her little girl’s future were superceded by concerns for her present. “She had a hole in her heart, so she needed immediate surgery. And she couldn’t suck, so she had to have a feeding tube inserted,” Dragana recalls.

For the next year, the 22-year-old mother struggled to care for a baby who required constant observation. “I was awake almost twenty-four hours a day, and there was nobody to help me,” explains Dragana. “I tried to show my partner what to do, but he was afraid of hurting the baby.”

After almost 10 months, an exhausted Dragana looked for some form of respite. “I tried childcare centres, hospitals, local charities... anybody who could take her even for a few hours, but there was nothing in our area.” In desperation, Dragana decided to remove Jessica’s feeding tube for 12 hours in the hope that she would start to feed naturally. “It was heartbreaking because she was hungry, yet she’d struggle against anything we tried to put in her mouth. Then finally she started to drink – that was one of the best moments of my life.”

At the time, Dragana noticed her two-year-old son Michael was also showing signs of being developmentally delayed. “He wasn’t communicating, he was hyperactive and he couldn’t take instruction,” she explains. Dragana sought medical advice, but she was told her son was simply an active little boy.

Meanwhile, another part of her life was taking a downturn. “My partner just wasn’t there for us and was actually creating more pressure instead of relieving it.” Dragana made the difficult decision to move out of the family home to raise her children alone. “It was very scary, because I knew I’d have nobody to help me – not even for a minute,” she says. Unable to work and with no child support, Dragana was forced to seek government welfare and housing. A year later, Michael’s behaviour had become even more peculiar and Dragana sought second and third opinions. “He’d started to develop rituals – having to line everything up and things like that – and he still couldn’t express himself,” she explains. Another year went by before Michael was diagnosed with Asperger’s syndrome, a mild form of autism. Guiding Michael through his condition meant hours of therapy, constant attention and an entire rethink on the way Dragana would raise her son. This, coupled with the intense physical, intellectual and speech therapies Jessica also required, proved more difficult than she imagined. “I had no idea what I was in for, but I wanted to give my children a chance to reach their full potential,” she says.

By now, Dragana’s children were four and three years old and she hadn’t had a day’s rest since their births. “I went into a sort of depression because I felt so alone and didn’t know where to turn,” she says. Luckily, this was when things started to change for the better. Dragana moved to a new suburb, registered Jessica with the local hospital and suddenly her phone began to ring.

“All these support agencies just came out of the woodwork,” she explains happily. A few months later, Dragana joined a local church group, found a support group for carers and, thanks to a government agency called MacArthur District Family Temporary Care, had her first taste of respite care. “They had volunteer families prepared to care for my kids for an entire night – I couldn’t believe it!” she laughs. “I was very nervous and felt guilty about letting them out of my sight, but when I met the family that was going to take care of them I knew everything would be fine.” Since then, Dragana has taken up the offer of volunteer respite care two nights each month.

Dragana knows she might be caring for at least one of her children for the rest of her life, but she looks to the future with optimism. “I know Michael will be fine – he’s growing out of a lot of his symptoms and I’m sure he’ll be able to go to work, marry and have a family,” she says. “I’m less sure about Jessica’s future, but I think about the things she will be able to do. She’s going to a mainstream school and she’s come such a long way that there’s no reason she won’t find love, work and happiness – and that’s all any parent can ask for.”

Words: Linda Peatling. Photography: Andrew Lehmann. Hair & make-up: David Novak-Piper.