It took three decades for clinicians to find a combination of medications that successfully managed Jann O’Connor’s son’s paranoid schizophrenia*. For those 30 years – and still now on the eve of her 80th birthday – Jann has been her son’s primary carer and advocate.
She knows intimately the realities of caring for someone who is persistently and severely mentally unwell, from the battles to keep the house clean to the struggle of keeping everyone safe. She can recall, for example, multiple times her son went missing, including while on a trip from Lismore to Sydney to visit his sibling.
“I was so concerned about him I decided to ring every hospital in NSW. I found him in Campbelltown Hospital. He couldn’t talk. They had this patient but they had no idea who he was. I spoke to him on the phone and this little voice down the phone just said ‘hello Mum’. I came straight down to Sydney. In the mental health unit, he was in a room right down the end of the corridor and I could see his head poking out looking. He came out and it was like a slow motion run: he picked me up and hugged me. I was crying, then I looked around. Two nurses were crying, a doctor was crying.”
Over her many decades of caring, Jann has learned ways to practice self-care. She says it’s important to find activities “where there's light and hope and sunshine, and some perspective.” For Jann, they are walking the dog, tai chi and painting. The former English teacher also encourages carers to connect with each other, including setting up their own support groups as she did in Ballina in 2006.
“To have a friend who can understand and who can listen, I can’t tell you how helpful that is. By talking to others, you’re going through and working out what works for you. And if there is a mental health carers group, the important thing is that it is all about the carer, it is not about the situation for the person who’s unwell. ”
Her advice for managing mental illness in the home is to “choose your battles”.
“You need peace in your home. The battle I chose to fight and won was I would not allow smoking in the home because I’m asthmatic.
“It’s also really important to use ‘I’ statements, or ‘we’ and ‘us’ statements. The minute you say ‘you’re being untidy’, you’re in a battle. Instead you say, ‘I am feeling that we need a bit of a clean up here’. You put it back on yourself. That made a huge change for us.”
When things are overwhelming, “it’s quite OK to have a cry and find an old stick and bash some old stump out the back and say ‘bugger’ three times at least. Come back inside when you are able to smile again.”
Jann has shared her lived expertise via countless presentations to families and clinicians. She has also been a mighty advocate for mental health carers, serving for many years as the chairperson of the Northern NSW Mental Health Forum; advising on the design of mental health units and services in Byron and Lismore hospitals; and serving as the inaugural mental health carer advisor on the NSW Mental Health Line – to name but a few of her achievements. Her work was formally recognised in 2011 when she was named NSW Senior Carer of the Year.
Today, Jann’s son lives independently on the NSW mid north coast and the two have a great relationship. Jann speaks to him every week and visits regularly.
“I accept that he’s happy where he is, he feels he’s a man and he’s found his niche in that little town. He has made great mates with his neighbours and he looks after them. He is a musician and he gets out there and plays for them all. They come and listen to him, and he’s rather chuffed at that. You’d be hard pressed to know he was ever mentally unwell.”
She has deep gratitude for the clinicians and workers who have helped her family over the years.
“It’s a hard gig, and I am so grateful for their kindness and commitment. They’re special people.”
*Jann's son's name is not used in this story in accordance with his and his family's wishes.