Amanda's story

3 minute read

Amanda started caring for her brother Tom, who has non-verbal Down syndrome, when she was 14 years old.

Meet Amanda

Amanda only more recently realised that she is a carer for Tom. Reminiscing on her teenage years, she said, 'when I was younger, I never saw myself as Tom’s carer. I was just filling in while mum was away. But it dawned on me one day when my friends came over and said, 'you’re practically a mum to Tom when your mum isn’t around''.

Amanda’s caring situation involves assisting Tom with getting dressed, cooking his meals, taking him to work where he packs boxes at the Endeavour Foundation, and taking him to and from appointments.

Amanda loves caring for Tom. 'Seeing him happy makes me happy. It’s all about the little things, like making a thickshake for him and seeing how excited he gets.' Caring for Tom has increased Amanda’s confidence too, 'I’m never afraid of anything when he is around'.

Sometimes, being a carer means balancing caring responsibilities with other aspects of life.

In respect to dating and meeting new people, Amanda said, 'I often have to bring Tom with me and it can affect potential relationships. Some people think I won’t have time for them because I’m caring for Tom. Dating can be difficult because a lot of people don’t understand disability'. 

Caring for someone can make it difficult to prioritise your own health. Amanda realised she had to re-focus and prioritise herself when her mental health deteriorated last year, 'I realised that in order to care for someone else, you have to take care of yourself. For a while I was putting myself a distant second, instead of first'.

Beyond caring for Tom, Amanda is creative and outgoing. To wind down, Amanda enjoys photography and spends her weekends relaxing by going to fun events with friends. 'This weekend we’re going to a murder mystery event,' she shared excitedly.

No carer is alone

Amanda became aware of Carer Gateway through Carers NSW, of which she is a proud representative. She enjoys looking at the Carer Gateway website, and has found the real-life stories insightful and reassuring.

'Sometimes all I need is to read about somebody else’s story to get a new perspective on things. They make me feel less alone.' Amanda also likes exploring the online community forum where she reads about other carers’ experiences.