This story is part of a series written by mental health carers in which they share how they became participants, influencers and leaders in the NSW mental health sector, in hopes of encouraging other carers to do the same. See the full series, and learn more about the project.
Things happen for a reason; I did not ask why me, why this, why now?
It was May 1992 when my life took a different direction. My son, aged 20 at the time, a final year Bachelor of Arts student at Melbourne University, started isolating and withdrawing from family and friends. At the time we were not aware that these were warning signs of a serious mental illness with an uncertain outcome.
Of course we had not heard the words “schizophrenia” or “comorbidity”. My husband and I were busy working full time; I had opted to take a redundancy from my job where I had been working for nearly 20 years. I guess this was the greater plan for me – to become my son’s carer.
It is now 25 years since my son had his first psychotic episode and we are more informed. The family unit has fragmented and my son is well and doing the things he loves, including playing music. The past 25 years have been challenging and also very rewarding. My son has had numerous hospital admissions and has accepted that he has a treatable illness and to be aware of the triggers.
For me as a carer, life has changed from the way I had planned it would be. I had wanted to change career paths. Yes, the path has changed, but in a different way. I had to learn a new way of living, caring and sustaining myself and my dependant son.
In 1999, we moved to Coffs Harbour and had to establish ourselves in a new country town. Coming from a big city to a regional area was difficult. I wanted to learn as much as I could about the mental health services and the supports being offered in our local area. I did courses in advocacy and joined local health forums. Through the Schizophrenia Fellowship (now One Door Mental Health) I attended group leader training courses and started a support group for carers. This group is ongoing and has been running for over 12 years. We are self-run and offer support to carers for people with a mental illness. I started getting involved in carer state forums and ministerial councils. My knowledge and experience as a carer improved. I became a public speaker and represented the Black Dog Institute as an Ambassador. Other committees that I have sat on are the NSW Carers Advisory Council, Official Visitors Program and the NSW Mental Health Commission’s Community Advisory Council. Over this period, I also joined the National Register of Consumers and Carers and it is very satisfying to belong to this passionate group of carers and consumers working nationally to advocate on behalf of people with mental health issues.
Life for me has not been spent only caring for my son. I realised that I also have my own aspirations and goals. I have been able to balance my caring role by focusing on my son’s needs and medical issues when he has been acutely ill, and then focusing on my needs when he is doing better. For example, during the calmer periods, I undertook an online course in art and feel proud to have completed my Bachelor of Arts in Fine Arts and Visual Culture. I am currently studying on campus for a Diploma in Visual Art.
The message that I would like to share with other carers is this: Life does get better, there is a silver lining and being a carer is handed to you because you care and are resilient. It is a very special role – embrace it!