A new study reveals not just the fiscal value of unpaid support by carers of loved ones suffering from mental illness, but also the need to help the helpers. By Michele Tydd.

Supporting mental health carers

Judy Burke has helped care for her daughter, who has borderline personality disorder, for  40 years.
Judy Burke has helped care for her daughter, who has borderline personality disorder, for 40 years.

He looked like any other nervous kid sitting for the 2010 Higher School Certificate, but the mere fact this boy from country Victoria had reached that point was a triumph.

Blake, who wants to be known only by his first name, had assumed an unenviable double life throughout his high school years, cooking and cleaning for his two young brothers and comforting his mother as she became increasingly crippled by bipolar disorder.

“It’s quite common in a single-parent household to become a surrogate parent when you’re the eldest child. And that’s all I thought I was doing at first, even though Mum was relying on me more and more at home and also to give moral support as her anxiety grew worse,” says the now 25-year-old IT graduate.

“I was around 13 when it started and the only help on offer from my school was years later when they suggested I get special consideration for my HSC. But the process to get it seemed too much trouble, so I just got on with it,” he recalls.

Blake’s experience is not uncommon, according to a report recently commissioned by the community mental health service provider Mind Australia. It shows that in 2015 nearly 15 per cent (36,000) of the 240,000 people engaged in informally caring for those with mental illness were under the age of 25, some as young as eight.

Mind Australia CEO Dr Gerry Naughtin says the study, which found the value of unpaid care delivered by mental illness carers amounted to $13.2 billion, provides solid evidence carers need to be supported before the full rollout of the National Disability Insurance Scheme.

He says the study also highlights the theme of young people who are not coming forward and seeking help through mainstream specialist mental health services.

“A significant finding is the number of people aged between 15 and 24 looking after others in that age group, and this requires further exploration.”

The report’s senior author, Professor Harvey Whiteford of the University of Queensland, says his team for the first time in Australia singled out mental health carers from other groups of carers to calculate the value of their work. Data was further broken down into age and gender.

The majority of these carers – 54 per cent – are women of working age.

“The report didn’t set out to directly look at impact to [mental health] carers’ wellbeing but we found they tended to experience greater levels of stress compared to other categories of carers,” Whiteford says.

He says this is because they spend more time on emotional support.

“A lot has been made of the $13.2 billion savings, but the study’s main message is the need to recognise the value of what our carers do rather than an economic argument to get taxpayers to cough up more to replace what they do – that’s never going to happen,” Whiteford says.

“You talk to consumers and they don’t want an anonymous government worker in this role … they usually want family or friends, somebody they know and trust.

“Putting a dollar value on their work highlights the moral imperative to protect and support carers along the way. If not, we run the risk of carers burning out and older carers becoming unable to do the work … it will then eventually spill into the public sector,” Whiteford says.

Nobody knows that more than Judy Burke who, with the help of her husband, Bob, has battled to care for her daughter for the past 40 years.

The Adelaide couple’s lives changed forever the day eight-year-old Melinda, who was not doing well at school, stunned her mother when she said, “I feel like I’m on an island that’s sinking into the sea.”

“When she was 16, the day before the school term started, I noticed she had become very quiet and as I entered the lounge room she had a bottle of Spray n’ Wipe cleanser lifted to her mouth,” recalls Burke, 73, a retired pharmacist.

“She turned to me and said, ‘I’m trying to kill myself because I don’t want to go back to school.’ ”

The teen was admitted to hospital with depression but it would take another 15 tumultuous years before Melinda was diagnosed with borderline personality disorder (BPD).

People with BPD display a variety of behavioural traits but for Melinda it involved swinging moods, from anger to depression, and an inability to filter that anger, creating palpable tension at every family gathering.

“I’ve lost count of the Christmases and Easters I’ve walked on eggshells trying to keep everybody happy, but it’s basically mission impossible and extremely draining,” Burke says.

Her frustration is intensified by a health system that has constantly locked her and her husband out.

“Melinda has had hundreds of admissions to hospital for depression and suicidal tendencies but they discharge loved ones home to us carers often after just a few days and they rarely include us in what is going on or tell us how to help,” she says.

Professor Whiteford, also a psychiatrist, says this is a valid complaint.

“Often clinicians will see a patient after conflict with family who says, ‘I don’t want you to tell them anything’, and on confidentiality grounds [the doctors] have to agree,” he says.

“I can understand clinicians are often busy, but it’s far better for everybody if they take that extra time to explain to patients they are returning to that home and it would be more productive to resolve issues with family and move on,” he says.

 Melinda now lives in a group home but Burke says while it’s good accommodation, it has made little difference to her own stress levels or her workload.

“Melinda’s condition means she ignores the routine tasks like keeping up with bills, and when things go wrong carers are the first in line to fix it. Also, when she’s depressed I’m the first one she calls day or night,” Burke says. “Bob and I haven’t had a holiday for years where we could switch off the phone and relax. As much as I hate the sound of the phone ringing, I can’t switch it off.”

 Despite her husband’s failing health and her high blood pressure, Burke remains physically and emotionally at her daughter’s side.

Blake also remains staunchly loyal to his mother and is overjoyed that in recent years she has found equilibrium with appropriate medication and care.

“I look back and I remember times I got a bit depressed like any typical 17-year-old, asking why is the world so unfair, but I got through it by things like going fishing or just nicking off to a friend’s place for a few hours. I never felt I could go too far but it was enough,” he says.

When asked if he could draw anything positive from that experience, Blake says it has left him with a sense of pride in being able to help a mother who from all accounts had been a good provider before she fell ill.

“My brothers are each carving out a career – younger brothers are never really grateful for anything,” he says with a laugh, “but I know Mum really appreciated what I did for the family.”

Sadly there is no optimism in Burke’s voice when asked the same question.

Instead her strong, warm voice drops to an inaudible, “No, it’s been awful.”

Her spirit has been crushed by the constant systemic disappointments of a society that has taken very little interest in a mentally ill woman.

“We’ve had friends cut us out of their social calendar. One, a very close friend, told me to my face, ‘I don’t invite you out anymore because you’re no fun.’ ”

 Despite a recent but belated effort by the health system to establish a solid management plan for her daughter, Burke has come to terms with the fact Melinda will never find the peace and happiness she deserves.

She knows Melinda has little joy in her life and is often suicidal. “I shouldn’t say this because I would never do it,” says Burke with trembling voice, “but the thought has flitted through my mind to help her and then take something myself.”

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This article was first published in the print edition of The Saturday Paper on Apr 7, 2017 as "Runaway strain".

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Michele Tydd is an Illawarra-based freelance journalist.

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