Tracey's story

3 minute read

Where it all began

Tracey never anticipated that she would be a carer.

Six months after her daughter Jovie, who was born in 2009, Tracey and her husband noticed that she was slow in developing. By the time she was 18 months old, they started seeing specialists for advice.

Jovie was diagnosed with Rhett’s 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. We were not coping well. It wasn’t an easy decision to make, but we had to do what was right by her and our family,' said Tracey.

Tracey’s daily care situation involves shadowing Jovie to make sure she’s OK, while running from one end of the house to the other doing household tasks.

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 Rhett’s 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 as a carer, Tracey thought that caring was all about taking care of the care recipient and not worrying about yourself.

When describing her mindset at the time, Tracey said, 'we don’t realise how important it is to look after ourselves until we get sick, or break. Even if you take 5 minutes for yourself, you need to take breaks before you go back to everyone who needs you.'

Tracey today

Beyond caring for Jovie, Tracey understands that there are other parts of her that are worthy of attention. Now, Tracey dedicates herself to studying and learning about health and wellness. She loves discovering things she can do for herself, whether it is studying, photography or art. 'Doing these things has helped give me an identity away from being a carer, and has also provided me with the strength to continue caring.'

Advice for others

If Tracey could give a piece of advice to other carers who have had similar experiences, it would be to let them know 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,' says Tracey.

Through Carer Gateway, she connects with other carers while reading and watching other carers share their experiences in their own words.

'I relate to other peoples stories. They make me feel less alone and that there are other people out there going through similar experiences,' says Tracey.