Amanda's story
I started caring for Tom when mum was working.
My carer responsibilities involve getting Tom up and ready for his day, making his breakfast and travelling to his day program or his work.
Basically, when I started working there was a young carers program pamphlet that came through at work.
When I read through the pamphlet I realised a bit more that I was a carer for Tom.
When he gets picked up and dropped home I'll still be working for about an hour.
So once work is finished I'll start looking after Tom from there, as well as prepping his dinner, doing his toiletries for the night, and ensuring he is off to bed at a reasonable time frame.
Balancing my carer responsibilities with my social life has been a little bit more difficult, due to the fact that my role sort of consists of that of a mother.
So, when I've had friends and things around, they are single with no children.
So, their lifestyle is very different. Aside from that, dating has also been difficult in regards to people saying, you don't have enough time for me or, you are preoccupied with caring for your brother.
Coming across those barriers as well has been difficult.
It can be quite a difficult social life to manage, but other carers can relate to that.
Over time I do find there are occasions when I let my mental health go a little bit and it can be quite difficult to bounce back.
At those times I usually try to focus on myself and try to make changes to adapt in order to try and look after Tom.
Because, if I'm not looking after myself, I can't look after him.
Looking after my own mental health looks like going out and gardening, sometimes taking a breather every now and then.
It can also be doing a bit of photography.
My experience with Carer Gateway has been quite positive.
I often find myself looking at the real stories section, just to get a feel of what other carers go through, to make it feel less lonely.
I often use their website to navigate through their forums, where it is just people that discuss points of things that have worked for them or, just to have an online discussion.
The best thing about being a carer is that I find when I'm around Tom, I'm much more confident and, I'm not really afraid of anything.
I also just enjoy his company. He makes me smile, he makes me happy.
Yeah, I think he is just very pure and very innocent.
And I can appreciate every moment I spend with him.
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.
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