Family first: John’s journey as a carer
As part of National Carers Week, we’re celebrating the people who give their time, love, and energy to support someone living with Huntington’s disease. This week, we’d like you to meet John.
For the past 16 years, NSW-based carer John, along with his wife, Carol have been caring for Carol’s brother, Brett, who lives with Huntington’s disease.
“It’s not something you choose — you just do what you’ve got to do,” John says.
When Brett first started showing symptoms in his early forties, they both stepped in to help. What began as lending a hand eventually became a full-time role.
“I had to retire early to look after him,” John shares. “It’s a 24/7 thing. You don’t really get time for yourself.”
Today, Brett lives in supported accommodation, but John and Carol still visit him every day.
“He still loves his milkshakes and a trip to the golf course — even if it’s just to watch,” John smiles.
Over the years, they’ve faced plenty of challenges — from managing daily care to dealing with endless paperwork and approval processes.
“When things got tough, our Support Coordinator Mal from Huntington’s Australia really helped us through,” John says. “Sometimes you just need someone who understands what it’s like.”
Through it all, John and Carol strive to stay motivated.
“You don’t really have a choice. You just do it. He’s family,” John says.
Despite the challenges, John and Carol continue to find ways to stay connected with the Huntington’s community — including taking part in this year’s Walk 4 Hope Parramatta with their family.
When asked about his advice to fellow carers, he shared:
“Take a little bit of time for yourself sometimes. It’s hard, especially when it’s family, but you’ve got to look after yourself too.”
