On Christmas Day, Alex and Jesse took a five-hour round trip on public transport to see their mother in a secure psychiatric facility.
“We got there and my brother didn’t want to go in the room because he didn’t want to see Mum in that state,” Jesse, 25, told the Royal Commission into Victoria’s Mental Health System on Friday.
“And I went in there and Mum was drooling, she couldn’t control what she was doing, she didn’t recognise that I was there. She had no idea we were there. I stayed for five minutes, just being in the room, and we left back home to … have a frozen meal for Christmas. Like, yeah, it was pretty hard.”
From the time he was 14, Jesse was his mum’s official carer. Unofficially, he’d been doing it much longer. He wasn’t much of a cook, but he did his best to run the house and get his little brother to school. He cooked a lot of pesto pasta.
“Everything was hard as a young carer, I didn’t know what I was doing;” Jesse said. “Like, I didn’t know how to deal with my own emotions, let alone help and support my mum.”
The commission heard gruelling testimony from families who support and care for people with mental illness.
Mary Pershall, whose daughter Anna Horneshaw suffers from acute mental illness, told the commission that she, her husband and other daughter Katie had watched helplessly as Anna spiralled out of control after she finished Year 12.
Self medicating with drugs and alcohol Anna, a highly intelligent young woman, was in a torment that no one could reach.
Her distraught family had tried for years to get her help, but mental health services turned her away because of her drug use and drug rehabilitation centres said they were unable to help someone so mentally unwell.
She had been violent to others. Once, police were called after she turned a kitchen knife on herself in the family home but Anna was sent home again.
“For so long, we’d expected a call to say that she was dead but then we got a call instead to say that she’d killed someone else,” Ms Pershall told the commission.
In November 2015, Anna – who was by then four months’ pregnant and trying desperately not to use the drugs and alcohol that she’d been using to self medicate for years – had “a lot of voices in her head”.
“I think her brain just imploded,” Ms Pershall said.
Ms Pershall said society should consider the fact that children suffer from mental illness, a possibility that had not occurred to her family when Anna was younger.
“I think that looking back she had quite a few markers as a child,” she said.
“I believe she had audio and visual hallucinations, even as a little kid, but we thought she’d outgrow it, you know [we thought] it was childhood fantasies, but I believe her mental health was always fragile and [the] constant use of synthetic marijuana, synthetic cannabinoids, was really harmful to her brain.”
Tandem, the peak body for carers of people with mental health in Victoria, has called on the royal commission to recommend the government introduce a more inclusive model of care to “end the exclusion of family and friends”.
It says carers of people with acute mental health issues are mostly women, who support their partners or children. It says 40 per cent of carers are out of the workforce, and often have lower education levels and lower incomes than the rest of the population.
Anna was 27 when she murdered her housemate. She was sentenced to 17 years’ jail with 13 years non-parole. In prison, she was given her first official diagnosis, of schizoaffective disorder, with borderline personality disorder traits.
Outside the commission, Ms Pershall said that by the time of Anna’s arrest she had been turned away from help more times than she could count.
“On the day I heard what Anna had done I felt like screaming at the system … ‘you said she wasn’t bad enough – is she bad enough now?”
Anna’s older sister Katie Horneshaw said she had been amazed at the level of care Anna had received in prison – where she had been treated compassionately and fairly – compared with the mental health system.
“But the question is, why did Anna have to go to prison to get that kind of care?”
If you or anyone you know needs support, you can contact, Lifeline 131 114, Tandem 03 8803 5555, Kids Helpline 1800 55 1800, or beyondblue 1300 224 636.
Bianca Hall is a senior reporter for The Age. She has previously worked in the Canberra bureau as immigration correspondent, Sunday political correspondent and deputy editor.