Carers are one of the unsung heroes in today’s society.
As part of The Weekly’s Cost of Caring campaign, we reached out to five unpaid carers to hear their stories of courage, resilience and love — to encourage the government to add much-needed superannuation to carer benefits.
Read on to hear their stories…
Maria Sutera, 50
Maria was working as a primary school teacher when she realised that her parents — who are both in their nineties — needed extra care.
It happened unexpectedly. Mum’s 90 and Dad’s 96. They’d been very independent but suddenly both became unwell and I needed to go and stay with them. While I was there, I noticed that they needed extra help. Luckily I was on sabbatical from my job as a primary school teacher, so I had time to figure out what to do. That’s how I became a carer.
Up until a month ago, I was going there every day, Monday to Friday, and doing whatever was needed. Then I realised that wasn’t enough, so my partner, Juan, and I moved in with them. Juan is an angel. I don’t know what I would do without him. He’s very supportive and he understands that family is important. We knew it was going to happen one day.
The toughest part is having responsibility for someone’s well-being and taking on all those different roles because you’re a PA, an accountant, a nurse, a doctor, a physio, and a counsellor. It’s a big load on my shoulders.
You can become a carer virtually overnight, and your life and your financial situation changes. I feel very fortunate that I live in a country that does (somewhat) support me, but you make a financial sacrifice to become a carer. For the last three years, I haven’t earned a wage and I haven’t contributed to my super.
You can become a carer virtually overnight, and your life and your financial situation changes.
You gain a lot too. The fact that I have both my parents in their nineties, still here and together, that they live at home and are of sound mind and I get to spend this time with them — that’s a gift and a privilege.
My parents are from Sicily. They came on a ship in 1966. I get to hear stories of them growing up and what life was like 70, 80, 90 years ago. The other day, Dad was telling Juan and me about the process he went through to court my mum. We hear their memories of being children during World War II. So the thing I love the most is being able to spend this time with them.
Dee Ellem, 69
For 50 years, Dee has cared for her now adult daughter who lives with intellectual and physical disabilities. Dee has two daughters and is a grandmother of two.
I didn’t wake up at 18 and think I was going to be a carer for the rest of my life. I was planning a career in the fashion industry. But I was 18 years old when I gave birth to my first daughter, Lee-ann.
When she was still a baby, an artery burst and she had microscopic surgery on her little nine-month-old head. During the surgery, I believe she lost oxygen. They didn’t tell me what had happened but even in that first waking up after surgery, for a little girl who used to walk around the furniture, she was legless — she could not walk, she couldn’t stand. She could sit, but nothing else. Her right side was not working.
After that, it was years and years of going to specialists to try to find out what had happened. Back in those days, there was no National Disability Insurance Scheme (NDIS). I was given a program of exercises to do with her. I massaged her, and we went for sand walks and swimming. Finally, at three, she walked, but she was also having trouble with speech and her milestones were delayed.
It wasn’t until 2008, when she was having a very rough time with seizures, mobility problems, and emotional issues, that we finally got some answers. This had been going on for years. I only had four hours per week of respite. It was difficult, really isolating, and I couldn’t get anyone to listen. So Lee-ann was in the hospital, and I had come to the end of my tether, and I said, “I’m not leaving, I’m not taking her home until we get a neurologist in here.”
The neurologist came in, took one look at her and said, “When did she have the acquired brain injury?” He said the risk would still have been there if she’d had that same operation today, but they’d have prepared us, they’d have had rehab ready to go. They wouldn’t have just sent us home in silence.
It didn’t faze me, becoming a carer for my daughter. I loved, and I still do love, every minute.
Lee-ann lost the opportunity to have a career, a partner, and maybe her own children. Today, she is 51. She can’t prepare anything for herself, she can’t get herself out of bed. No personal care. Everything has to be done for her. But it didn’t faze me, becoming a carer for my daughter. I loved, and I still do love, every minute.
I turn 70 next year. I don’t get a golden handshake, there’s no gold watch, no retirement, I don’t have super and we don’t own our home. So this campaign is really important. Superannuation would have made such a difference for me.
The NDIS is wonderful, though. It’s changed our lives. Recently, we’ve had more support workers coming in because I’m planning Lee-ann’s life without me. That’s what it’s all about now. I mean, I want to live to 100 — or just one day longer than my daughter — but we need to be prepared if I don’t.
Society can be cruel. We don’t have inclusion. So many places are inaccessible to people with disabilities and unless you have a disability or you’re a carer, you just don’t think about it. We should do better. Imagine if everybody just looked around, wherever they are, and thought, oh, could a friend in a wheelchair come in here? Or could a person who has impaired hearing get the most out of this? What can we change? We need to change our own backyards and our neighbours’, and then we can possibly change the world.
Levina Pham, 25
Levina cares for her younger brother who lives with autism, a severe intellectual disability, ADHD, and is non-verbal. She works as an investment analyst.
I’ve been caring for my youngest brother, Kerry, since my mum told us that he’d been diagnosed with autism and a severe intellectual disability. He was two years old.
My dad, Van, is Vietnamese and my mum, Heni, is Indonesian. English isn’t their first language, so navigating having an autistic son was quite challenging. I was always there to help translate. By the time I was 15, I was really good at filling out government forms.
Growing up, we didn’t know anybody else with autism.
My brother had a lot of very challenging behaviours when he was younger. He would run away from home. He would throw stuff around. Sometimes, when he was angry, he would smash glasses on the ground. Looking back now, I think it’s because he wanted to communicate with us. I’m really proud Mum stuck it out with the professionals, and they helped Kerry to develop a toolkit to communicate.
Now he’s 20 and he’s night and day compared to where he was before. He is really calm, he knows how to communicate with his iPad, he loves it when we take him out for coffee, and he loves to cook and bake. I’m really proud of how far he’s come.
Growing up, we didn’t know anybody else with autism. Because Kerry was so hard to deal with, I never really had friends over. I was lucky that, when I got to uni, my mum made us interact with other young people through Carers NSW.
I wish there was more understanding in the community of what it means to be a carer. It would be really nice for carers to feel validated in their experience. When people ask what they can do to help day to day, I say it’s checking in on people that you know are carers, and being more patient with them.
Tairyn Vergara, 45
Tairyn cares for her ageing parents and her daughter, who is on the autism spectrum. Tairyn is also CEO of The Parks Community Network, a not-for-profit.
I’m from a Chilean background so it’s expected that children care for their parents as they get older. My dad, Alejandro, had an accident on a construction site 17 years ago and has never fully recovered. My mum, Maria, has lupus and there are days when she can’t get out of bed. I also care for my seven-and-a-half-year-old daughter, Chloe, who has autism.
When we were given Chloe’s diagnosis, we were lost. You have just so many questions and no answers. What I did discover quite early on was that I needed to find people who were going through similar situations to me and would understand. There are some days when we don’t have any meltdowns and there are days where we have meltdowns for hours on end.
Luckily, I’ve got lots of support. My husband, Marcello, is very supportive. My brother comes around and helps my dad. I’m part of several support groups.
Caring impacts everything. Getting access to the right therapies seems to be getting harder. The rules keep changing. Financially it has been hard. When my daughter was first diagnosed, the therapy was going to cost $80,000 a year and I had to withdraw some of my super to pay for that first year while we were waiting for the NDIS to come through.
It’s really important to raise awareness … I feel that sometimes we are invisible
Now, she’s getting all the tools she needs. She’s in a mainstream school. When she was four, I thought she could not understand language. Now, she can read and write Spanish and English to a very high standard. So, she’s doing wonderfully. It’s very rewarding.
It’s really important that we raise awareness and advocate to the government about carers’ needs. I feel that sometimes we are invisible. I think respite is really important.
My daughter’s NDIS plan does not have any respite included. I’d also like to see better employment opportunities, and for employers to be flexible in understanding carers’ needs. I’m employed, but I know that many carers cannot work, so it’s also crucial that we have superannuation included in carers’ benefits.
Amanda Roberts, 28
Amanda cares for her brother with Down syndrome and her mother who has a spinal injury. Amanda also works in social housing and is the mother of a seven-month-old son.
My older brother, Tom, has Down syndrome and he’s non-verbal. He’s 30 now and I think it’s become more common to accept people for who they are, but back when he was young, disability was less understood. Some people would see my brother and look at him as if to say, ‘Is he dangerous?’. Now we know that people with Down syndrome are far from dangerous. They’re so affectionate that, if anything, they want to hug you.
I remember reaching an age where I noticed that Mum was getting older and I realised I needed to take on more responsibility for Tom. So I helped out more, and when Mum was at work on a Sunday, I would care for Tom all day.
Then, four years ago, Mum suffered a spinal injury and became paralysed from the waist down. Luckily, I was living with the family, so I took over Tom’s care. That involved taking him to and from his programs and his work, taking him grocery shopping with me, doing the cooking, cleaning, and bathing. And I was also working full-time — three days a week from home and two days in the office.
My partner moved in and we all lived together until I became pregnant last year. Now we have our own place, so my father and brother do more with Tom, but I’m still over there all the time. I just live 10 minutes away.
Being a carer forced me to grow up a bit quicker. So, whilst everyone else was out partying, I had responsibilities at home. There have also been opportunities that I haven’t taken because I had responsibilities — jobs where the hours wouldn’t work or I’d have to be too far away. But it has probably prevented me from doing stupid things as well as good things. It keeps your head on your shoulders. You realise your actions have consequences.
Being a carer forced me to grow up a bit quicker. While everyone else was out partying, I had responsibilities at home.
If I could change one thing for carers, it would be to extend the psychological help that’s available to families. Like, with Mum, we all went through something very traumatic, and under the NDIS, Mum can get sessions with a psychologist but we can’t. That needs to change.
Join our Cost of Caring Campaign
The Australian Women’s Weekly is campaigning for the government to pay superannuation to carers to help them build a better financial future.
There are 2.65 million unpaid carers around Australia. Every day, they put all or part of their lives and ambitions aside to care for others, which increases their financial vulnerability as they sacrifice income and superannuation to look after someone they love.
Over time, this financial deficit adds up, leaving many unpaid carers and their families struggling to make ends meet. Adding superannuation to means-tested carer support payments could be the difference between poverty and a safe, secure future. It would also be a sign of respect for a carer’s years of selfless and often highly skilled labour.
For more information, visit costofcaring.com.au.
Help us guarantee super for Australia’s unpaid carers
Australia’s unpaid carers are in crisis. It’s time to do something about it.
This feature was originally published in the December 2024 issue of The Australian Women’s Weekly Magazine. Pick up the latest issue from your local newsagents or subscribe now.
Related stories
Native ad body.
Native ad body.
Native ad body.
