Joanne is a dual carer who supports her son as well as her spouse. Until she really needed help, she didn’t know how many services were available for carers. “The grief counselling through Carers Victoria is unbelievable,” she says, “and I still seek ongoing psychological support to this day.”
If Joanne could change one thing about being a carer it would be that society comes to recognise the legitimacy of the caring role.
“Carers are the unsung heroes, and no one understands what we are experiencing,” she explains. “The carer is a Lynchpin. If things fall apart, it is because the primary carer was unable to get the support they needed.”
Joanne is a dual carer who supports her son, who is neurodiverse, as well as her spouse, who has an acquired brain injury. She has vivid memories of the day when her son was in childcare, and she and her partner were called into a small staffroom.
“It was airless,” Joanne recalls. “I could not breathe.” The staff then “very kindly” informed Joanne and her partner that their son was not meeting the milestones of his peers.
Not all organisations, however, have an awareness of the needs of carers or the people they care for. When her son was 10 years old, she was called into a meeting with the extracurricular teachers to discuss the “behaviour management” of her son.
“I wish I had someone there to assist me,” Joanne says. “We approached the assistant principal to see if we could add a paragraph to the school newsletter about my son and his needs, but the answer was a resounding NO!”
The challenges that Joanne faced being a carer for her son became even more complex six years ago when her partner developed an acquired brain injury. “He spent a week at the Alfred Hospital, a week at Fairfield House, and then, in someone’s wisdom, he was ready to come home!”
“I remember that I was informed on the day, and had to collect him the same afternoon,” Joanne says. “I remember thinking: how can I support an adult as well as two teenage children! He couldn’t shower. He couldn’t shave. I just had to continue on knowing that without support, it was impossible to care for an adult as well as two teenage children.”
Since then, Joanne has found help from a variety of support services. “Alfred Health, BrainLink, City of Glen Eira, and MOIRA have all helped me in so many ways,” she says. “I did not know these services were available until I really needed them. The grief counselling through Carers Victoria is unbelievable, and I still seek ongoing psychological support to this day.”
The support that Joanne has received from members of the caring community has been invaluable too. “You are surrounded by others who understand our circumstances,” she says.
If she could give one piece of advice to someone about to start the caring journey, it would be to find ways to look after yourself – both physically and mentally. “I wish I had considered vitamins and minerals earlier,” she says. “Self-care does not come easy when other individuals are your concern. You have to learn to take time out. I have learnt to love mindfulness, meditation, qi gong, tai chi, Pilates, and yoga.
“Our families never taught us any relaxation techniques like this,” she recalls. “No wonder our parents were so stressed!”