So many carers seem to have given up
Louise* is a very strong, feisty woman.
She has to be to cope with the crushing responsibilities she bears. One is caring for her 32-year-old son Richard who was diagnosed with drug-induced psychosis and bipolar disorder some 15 years ago when he was a high-achieving student at a well-known private school.
Richard has been pretty much unmanageable ever since, in and out of psychiatrists’ offices and rehab centres. While the drug use has stopped, the alcoholism hasn’t and he receives constant treatment.
Louise’s other daunting responsibility is caring, 24/7, for her 12-year-old foster son, John. He has epilepsy and autism, can’t speak, still requires nappies and has a mental age of around two.
While The Wesley Report points to the mental health risks faced by carers looking after loved ones with mental health problems, Louise seems different.
In her early 60s, she is full of positive energy, selling real estate part-time while also completing a psychology degree.
“I don’t have any magic formula but somehow I seem to manage—I can’t really explain why,” Louise says.
Louise’s husband left the family when he couldn’t cope with their son Richard’s erratic and often violent behaviour. A subsequent relationship with another man left Louise quite literally holding the baby. The man’s daughter by an earlier relationship had given birth to John but neither she nor her dad wanted to take responsibility for someone so severely disabled. So, by the time John was five, and weighed just 10kg through neglect, the Department of Community Services asked Louise if she’d care for the boy. She didn’t hesitate.
What’s all the more remarkable about Louise is that her own childhood was not a good preparation to face and cope with such enormous challenges.
Abandoned by her parents when she was two, Louise spent years shuffling between boarding school and foster parents, some of whom abused her terribly. But fate stepped in and she finally ended up with a wealthy foster mum who brought her up during her teens.
In the early days of Richard’s illness, Louise admits to sitting in the local park crying her eyes out. She did attend “very helpful” counselling at Wesley Mission, but more in an effort to learn techniques to help Richard rather than herself.
In the final analysis, two things helped, and continue to help get her through.
“I suppressed my emotions and concentrated on the day-to-day practical issues of making sure he took his medication and got to medical appointments. I also researched all the treatment options.”
Her other pillar is her Christian faith.
"I belong to a wonderful local church where the people give me such solid support, such as visiting me when I’m sick.”
This is not to say that being a carer hasn’t had a huge negative impact on Louise’s life, even if it hasn’t left her depressed.
“It’s a constant financial challenge with Richard and John’s medical bills. The demands of caring mean I can only work part-time to top up the pretty meagre carer’s allowance I receive,” she said.
“It also affects my social life in that prospective partners are easily put off when they see my situation.” Louise is no stranger, however, to the prevalence of depression and other mental health problems among other carers.
“The mums I meet at the moment through John’s special school are deeply depressed,” she said.
“Very often their husbands have deserted them because they can’t deal with the situation, and the women have lost interest in looking after themselves: they are overweight, hygiene goes out the window, and their clothes look like they’ve slept in them. They are very angry about their situation."
Sadly, Louise says that one of the most depressing things about being a carer is the constant battle to negotiate the medical system, a problem borne out in Wesley Mission’s research.
“It’s very hard to get information from doctors about where to go for help with people like Richard, who has both addiction issues and bipolar disorder.
When I finally got him into rehab facilities it was through my own efforts rather than through help from the doctors,” Louise said.
“He’s also very difficult to deal with and many professionals just can’t be bothered putting up with that.
“There really needs to be an education campaign among doctors and psychiatrists about how to handle people like Richard. It makes me angry because it shouldn’t be this hard.”
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*Name changed to protect privacy