Six months after their daughter Jovie was born in 2009, Tracey Hoyng and her husband noticed that she was slow in developing. By the time Jovie was 18 months old, she started seeing specialists for advice. Jovie was diagnosed with Rett Syndrome, a rare genetic disorder that affects her ability to walk, talk and use her hands.
To make sure Jovie was receiving the care she needed, Tracey left her job and became Jovie’s fulltime carer. “The stress of juggling Jovie’s appointments around work, or re-scheduling my work for her appointments, was really difficult,” says Tracey. “It wasn’t an easy decision to make, but we had to do what was right by her and our family.”
On reflection, Tracey says the process of becoming a carer for Jovie and trying to get a diagnosis for her was difficult because of the lack of resources and support available.
“When we were processing Jovie’s diagnosis, all we received was a stack of pamphlets, a printout from the internet on what Rett Syndrome is and nothing else. It’s taken me 10 years to realise the importance of carer wellness and support.”
Over this time, Tracey’s perspective on carer wellness has changed significantly. In the beginning of her journey, she thought that caring was all about looking after the care recipient and not worrying about yourself. “We don’t realise how important it is to look after ourselves until we get sick, or break. Even if you take five minutes for yourself, you need to take breaks before you go back to everyone who needs you.” Tracey’s advice to other carers is that it’s not selfish to look after yourself. “You want to be the one that does everything and be there for everyone, but it can wear you down.”
To remember to take time for herself, Tracey turns to the real-life stories on the Carer Gateway website and Facebook page. “I like seeing what other carers are doing and what works for them. It makes me feel less alone and that there are other people out there going through similar experiences,” she says.
Are you a carer?
A carer looks after someone who lives with disability, has a medical or mental health condition, or is frail due to age. Every caring situation is different, and a carer can be young or old. A carer might look after someone 24 hours a day and help with daily activities, or they might look after someone who only needs help some of the time. If this sounds like you, you might be an unpaid carer.
- There are more than 2.65 million unpaid carers in Australia. That’s 1 in 9 people!
- Two thirds of carers spend up to 3 hours a day providing care and support.
- Just over half of all carers are primary carers. That means they’re the only person looking after the person they care for.
It is important to have support when you are caring for someone. Carer Gateway was designed by carers for carers. They provide a range of free services and support to give carers the help they need. You can contact Carer Gateway on 1800 422 737 between Monday to Friday 8am to 5pm or go to carergateway.gov.au.