Jo Buchanan looks back at how the role of carer has changed over the decades, and the progress we've made.
One of the most heartbreaking experiences when a family member develops mental illness is the change from someone we’ve known into a stranger.
When my sister was diagnosed with schizophrenia in the 1970s she was hospitalised for months at a time, so I decided to take on the care of my beautiful, fun-loving nephew. But when he reached his teens Joel began to change. Initially I thought his rebellious behaviour was the result of a mum who was mentally ill - it never occurred to me that my nephew was battling the same illness as my sister.
Back when I was caring for my sister and nephew in the 1970s and 80s, the medical profession seriously believed schizophrenia indicated a ‘split personality’ and was probably caused by ‘bad parenting’.
Not only did carers shoulder the burden of caring for their loved ones - without any support from the government or medical profession - they were also accused of causing it.
So when a chance arose for Joel to join the Wilderness Program, a project designed to help delinquent teenagers, I jumped at the opportunity. The programme involved a healthy outdoor lifestyle in the bush with the emphasis on building self-confidence and self-esteem. I thought it would be the perfect answer.
But after a while, I started receiving letters from Joel that didn’t make any sense. The following is an excerpt:
“Dear Aunty Jo, I will not retain myself within the bellows of the abyss by the reducement of our meeting. My mind and body link is too far outstretched for anything of the likes to occur… I have tried to deal with using my life relating to the circumstances over the Christmas break and asking of somebody else for money to the of which. My name is not Joel.”
I was distraught. But neither my GP, nor the psychologist he referred, were any help. Even though they knew my sister had been diagnosed with schizophrenia, they both told me that my nephew was either drinking or on drugs. So Joel didn’t receive the help he so urgently needed.
When he returned home from the bush, he told me he was being plagued by voices in his head insisting there would be instant world peace if he ended his life.
I tried to get help for him but was unsuccessful and finally Joel surrendered to the commands of his voices. I truly believe that if my GP and psychologist back then had been better educated in mental health, Joel may still be alive today.
Although we still have a long way to go in educating the general public on the subject of mental health and receiving better government funding for medical research, I do believe progress has been made over the years.
For instance, a couple of years ago my daughter Simone played the role of a character with bipolar disorder in the popular TV show Neighbours. Whenever a word in the script could be interpreted as ‘stigmatic’, Simone brought it to the writers’ and producer’s attention and they promptly eliminated it. This would never have happened in the past, when TV shows favoured dramatic sensationalism over truth and reality.
These days we have the Carers’ Pension to assist us financially and the Disability Pension to support those for whom we care – back then there was nothing. It’s not enough, mind you, but it’s a start.
We still have a long way to go. And if more support was provided for carers, involving them in treatment plans to help ease the enormous pressures they are under, then outcomes would be better for everyone concerned.
For more information and support, visit the SANE help centre, the SANE Forums and read the SANE Families, Friends & Carers Guide.