October 11 to 17 is National Carer’s Week, which recognises the selflessness of those who care for a family member or friend with disability, a mental health condition, chronic or terminal illness or those who are frail or elderly.
Up until recently Nowra woman Maree* was among the 2.65 million Australians who provide care and support to those in need. For the past 18-years Maree has been a carer for her 20-year-old nephew Darren*, who has Asperger’s. Darren now lives in CareSouth’s newest Supported Independent Living (SIL) accommodation, but up until six months ago Maree was Darren’s full-time carer, welcoming him into the home she shared with her husband and four children when he was just two years old.
“I had never met Darren when I found out he was in foster care,” said Maree. “He is my half-brother’s son and he and his partner didn’t know how to deal with his behaviours so they relinquished care. I was pretty angry with my brother at the time and said to him ‘you’ve got five sisters why aren’t you asking us for help’.
“So, I put my hand up to help. It was the right thing to do.”
Maree was supposed to have Darren for six months to give her brother a break and ‘let him get his head together’. But Maree and Darren soon formed an unbreakable bond.
“When he came to us he could only say two words,” said Maree, who spent Darren’s formative years searching for a diagnosis and the correct therapy to get him to where he is today.
“Now he never stops talking,” she chuckled. “But I’ve taught all my kids the importance of having a voice and being heard.”
When Darren was nine Maree was granted legal guardianship, cementing their relationship.
“He’s my darling boy,” said Maree. “Darren knows about his biological parents, we’ve always told him the truth, but to Darren, we’re his Mum and Dad and our kids are his brothers and sisters. He’s family. Simple as that.”
Now almost 18 years later Maree has set Darren on a path to independence, with the help of his NDIS support coordinator and CareSouth support staff. It wasn’t an easy decision for Maree, a self-confessed nurturer. But she is grateful that Darren has found a home he loves, with great carers.
“It was one of the hardest things I have had to do,” said Maree. “I still miss him every day but I see him twice a week and we talk on the phone a few times a week.”
Not much phases Maree. As we chat she is waiting patiently for her car to get towed – she was on her way to visit Darren when it broke down. “This happens to me all the time,” she chuckles ruefully. “Just my luck.”
But when it came time to make choices about Darren’s future Maree questioned whether or not she was making the right decisions for him.
“When Darren finished high school he was really lost,” said Maree. “As much as he hated school (he was bullied relentlessly for his obsession with dinosaurs), he missed that structure and routine. He didn’t know where he was going to be or what he was going to be doing.
“When he was little if we were going on holidays we would have to prep him three months beforehand just so he knew what to expect and what was going to happen. So without the structure of school he became really depressed and anxious.”
Darren spent most of his time holed up in his room playing video games.
“He got addicted to the X-box and used to live his life in the games,” said Maree.
Darren’s behaviour became increasingly violent. He would break things, including the television when the games did not go his way. Then he became aggressive towards Maree.
“It broke my heart, but I couldn’t do it anymore,” said Maree of her decision to place Darren into respite care. “My daughter and grandchildren had just moved in with us and Darren’s violence towards me was quite traumatising for them. It wasn’t his fault, he was just lonely and wanted to be like everyone else. But we needed to keep everyone safe so we looked into respite.”
Darren was shifted around respite placements in the Illawarra and Sydney for three months before Maree’s NDIS support coordinator suggested the new SIL model on the South Coast. It was a perfect fit for Darren and Maree could not be happier.
“I am so pleased, so thank you CareSouth,” laughed Maree. “He’s been there for three months now and he seems to be doing really well. He loves his support workers and he is learning to be so much more independent. He was very reliant on me, but it was mutual. I was his full-time carer, that was my job, my everyday thing.
“I couldn’t work, because if Darren took off I’d have to go find him. At first it was really hard to let him go, and to let that role go. I’ve always been a nurturer – for my four sisters when we were growing up, for my own kids, then for Darren. But I needed to do me.”
Now that Darren is settled in Supported Independent Living Maree is doing just that.
“I get bored easily, I need a sense of purpose and there’s only so much cleaning you can do, my house is immaculate at the moment,” laughed Maree. “I am a mother at heart and I love kids so I’ve applied to work with kids like Darren through the Disability Trust. So many people have done so much for me to help me with Darren and I want to give back to them.”
Carers like Maree are an important part of Australia’s health system and are the foundation of our aged, disability, palliative and community care systems. CareSouth would like to thank the millions of carers who make a difference to the lives of vulnerable people every day.
*names have been changed