Growing up in the shadow of illness, this young woman shares the personal impacts of taking care of her brother and mother and gives her advice to others who find themselves in similar situations.
When Madeleine Buchner’s baby brother was diagnosed with multiple serious health conditions, the nine-year-old girl had no idea how it would shape, even define her life.
“I grew up in the shadow of illness,” she recalls. “I felt loved but overlooked. I felt my parents cared more about my brother. I felt he was the favourite child. He was in and out of hospital, so I spent a lot of time with my grandparents.
“I often pretended to be sick because I thought that was the way to get my parent’s attention. After the fourth or fifth time of going to the nurse’s station at school, they realised I was faking it.”
Madeleine’s story is one that may be familiar to other young caregivers. It’s a unique community that few outside it will fully understand. It’s estimated that one in 10 young people (up to the age of 24) in Australia are carers. Each will look after a parent, a brother, sister, or a grandparent with a chronic illness, a disability, a drug, or alcohol addiction.
“It’s just your family, it’s just what you do,” says Madeleine by way of explaining the role of carer. “You don’t realise that you are doing something out of the ordinary until you realise you are different.
“Everyone used to tell me that I was such a wonderful kid because I did extra things to help my family. Taking on extra responsibilities was never a choice for me. I got a job when I was young to contribute to family finances. We struggled with medical bills. I think I missed out on so much socially and in other ways because I was helping out with my brother, Charlie.”
When Madeleine was 14 years old, her mother was diagnosed with breast cancer, placing additional stress and pressure on the family. Her schoolwork suffered and she began to suffer from a debilitating anxiety that she still carries.
“As young carers, we are a forgotten cohort,” she says. “We tend to advocate for the sick person rather than get support for ourselves. We need to fill our own cup before we can fill anyone else’s.”
That belief was one of the drivers behind Little Dreamers, the organisation she co-founded 14 years ago to support young carers aged four to 25. “Some of the risk factors we see for young carers are educational and financial disadvantage,” she explains.
“Fifty per cent of families with young carers live below the poverty line in Australia.” Many have to leave school, she says. “Only 4% of those who are the main carers above 15 years old are still at school. There’s also a significant rate of unemployment among young and adult carers and very significant rates of loneliness and isolation.
“When we first started our organisation, our tag line was, ‘what is life without a dream?’ Young carers who take on caring roles don’t necessarily have room for a dream.
“My advice to them is to take five minutes during the day and night to do something that makes their heart happy. If you can bookend your day by doing something that feeds your soul, it’s a good way to build in care for yourself during a busy day.
“The advice I would give is around the need for young people to build a sense of identity for themselves outside of their caring roles. We see many who don’t know who they are and how the future might look outside of that caring role.”
And now, as a 30-year-old woman, what advice might she offer her nine-year-old self?
“I would tell her that she is very special and very loved, that life does get easier but before it does, you will need to access support that is for you.”