VICTA Changemaker Jerri discusses what life is like as a vision impaired carer.
I’ve always felt like I was born into a world that wasn’t made for me. I was born visually impaired due to cortical visual impairment, and as a child, the world around me often felt daunting. I had so many questions about how I would cope growing up.
But alongside learning to navigate the world as a visually impaired child, I was also navigating another world at home. My mum lives with bipolar disorder, and from a young age I became her carer. I helped her manage her medication, monitored her moods and learned to recognise her triggers. At times, it felt like a huge responsibility for a child to carry.
My mum has always tried her best. She loves me unconditionally, and none of this was her fault. She put food on the table, made sure I had clean clothes and gave me so much love. But what I experienced as a young carer went much deeper than the things people could see.
I remember reminding Mum to take her tablets morning and night and being there when she experienced manic or depressive episodes, including times when she was suicidal. I became hyper-aware of her mood and constantly worried about keeping her safe.
I didn’t always get to go out and play like other children because I was thinking about Mum. We loved going shopping together, but sometimes something as simple as someone saying something she didn’t like on a bus could turn into a huge argument. I would find myself trying to explain the situation, calm everyone down and de-escalate things.
People can be quick to judge what they don’t understand. Just like with visual impairment, there is so much misunderstanding around mental illness. People often see the behaviour without seeing the person or understanding what is happening underneath it.
Being visually impaired added another layer. When we went out, Mum would sight-guide me, while I was constantly monitoring her. In some ways, we looked after each other.
School became my escape. For a few hours each day, I could just be a kid. I could learn, play with my friends and forget about the responsibilities waiting for me at home. But when I walked through the front door, reality came rushing back.
I was exhausted, and sometimes that exhaustion came out as me being snappy with Mum. Afterwards, I felt incredibly guilty. We argued frequently, but underneath it all was a love that never disappeared. Even now, Mum is my best friend.
I don’t blame my mum for the responsibility I had. If anything, I blame a system that didn’t give her the support she needed when she asked for it.
One of the people who made the biggest difference in my childhood was my Auntie Christine. At weekends and during school holidays, I would stay with her and her children, who became like siblings to me.
Those were the times I got to let my childish side out. We picked fruit from the garden, jumped on the trampoline and rode our scooters around. I could be silly. I could talk about what was happening at home. I could cry when I needed to. Most importantly, I could just be me.
Those few days gave me the chance to recharge before facing another week. I honestly believe that without Christine, things could have been very different for me.
Sadly, she passed away in 2016. Losing her was devastating because she wasn’t just my auntie; she was my safe place. I had to grieve while also continuing to care for Mum, who was grieving too. Christine had been like a sister to Mum, so we were both dealing with a huge loss.
It was one of the first times I truly understood how complicated being a young carer could be. I had my own grief to process, but I also felt responsible for making sure Mum was okay.
As I got older, another challenge came along: relationships. Mum didn’t always cope well with change or understand my need for privacy, so having a boyfriend became a learning curve for both of us.
I rushed into relationships partly because I wanted to feel normal. I wanted to experience the things other people my age were experiencing, and I didn’t always make the best choices.
Eventually, I met someone who understood my situation. I explained that being Mum’s carer meant she would always be an important part of my life and that sometimes I would have to put her needs first. There were sacrifices, but he accepted that part of my life.
Ten years later, we’re still together and living together, and life is going amazingly.
Then, around three years ago, Mum’s health deteriorated to the point where I couldn’t cope with the mental pressure anymore. She had a serious mental health breakdown and eventually moved into a care home where she could receive the support she needed.
It feels strange to say, but since Mum moved into care, I feel like I’ve got my life back.
That doesn’t mean I love her any less. Quite the opposite. I can now visit her, spend quality time with her and enjoy being her daughter rather than constantly feeling responsible for keeping her safe.
For the first time, I have space to concentrate on my own life, my blindness and my own wellbeing, while knowing Mum is being supported by people who are trained to meet her needs.
Looking back, I realise I was navigating two worlds at once: growing up as a visually impaired child while also carrying the responsibilities of a young carer.
It shaped who I am. It made me resilient, compassionate and fiercely protective of the people I love. But it also taught me something important: children shouldn’t have to carry everything alone.
So, if you’re a young carer who is also visually impaired, I want you to know that you are not alone.
Your situation might feel incredibly unique, but there are people who understand the challenges of being young, visually impaired and responsible for someone you love. You deserve support too.
You deserve time to be a kid. You deserve to have fun, make mistakes, have relationships, discover who you are and build your own future.
And asking for help doesn’t mean you love the person you care for any less.
Sometimes, looking after yourself is one of the most important things you can do for both of you.
by Jerri Mather
