“I don’t know that I’ve ever actually seen myself as a carer.”
Like many carers, Sue’s journey began gradually. As her mother aged, Sue started helping to care for her brother Nick, who has Down syndrome. Later, when her mother was diagnosed with Parkinson’s disease, Sue became the primary carer for both of them.
“I’d make sure everyone was up, prepare all the meals, ensure they were showered and ready for the day,” Sue explains. “I had services booked in to support my mum during the day, I would go to work, and my brother would be picked up to go to his day service. I’d come home, prepare the meals at night and everyone’s bed, and then do it all again the next day.”
Although her mum eventually moved into a nursing home, Sue continues to care for Nick to this day. Their close bond is clear.
“It’s just the two of us, which he’s really happy about,” Sue says. “He’s got an amazing sense of humour. He loves to scare me at times because he loves scary movies. Nick also loves to take selfies every time we go out.
While their relationship is strong, like many carers, Sue factors her brother’s needs into her every decision. This ongoing commitment leaves little time for her own hobbies or socialising, something that many carers can relate to.
Looking for extra support, Sue reached out to Carer Gateway, an Australian Government program that provides free support and services for carers, led by Holstep Health in Victoria.
The Carer Gateway team connected Sue with a local peer support group. These groups give carers the chance to take a break from their caring role, share experiences with others who understand, and enjoy an activity like gardening, painting or simply a coffee and chat.
“Other carers really understand what you’re going through. You can talk to each other and know that you’re not going to be judged.”
As Sue became more comfortable, she found reassurance that she wasn’t alone.
“I just need someone to listen. And the peer support group does that.”
For Sue, caring has been both an enormous responsibility and a huge privilege that continues to shape her life.
“Even at the age of 51, I’m seeing Nick develop some new skills. And I’ve got to just keep reminding myself that he’s more capable than I give him credit for. We’re good company for each other.”
And her advice to other carers? “When things happen, just take a deep breath, tomorrow’s a new day.”
Many people caring for a family member with Down syndrome may not even realise they are carers, or that support is available just for them. Carer Gateway offers free emotional and practical support for every carer in the family, including young carers. Services include counselling, coaching, peer support groups, tailored support packages, and planned and emergency respite.
Call 1800 422 727 (Monday to Friday, 8am to 5pm) or visit their website to learn more.
Carer Gateway – Holstep Health is proud to support Down Syndrome Victoria’s 2025 StepUp! event.