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.
It was an extremely difficult time when my daughter was first hospitalised involuntarily with psychosis. There had been crisis after crisis during the preceding two years, and this was the final shock. The process of admission was extremely traumatic. It had a terrible impact on all our family. Matters were made more complicated because we were a blended family. I was numb with disbelief, could not comprehend how this had happened. I was confused. And there was grief. I felt like I was living in a fog.
The way I dealt with this was to throw myself into doing everything I thought I possibly could to support my daughter. I visited the hospital almost daily for three months. My own needs went out the window. It impacted on my work. I resigned from a demanding permanent job as a consultant ecologist, and took up casual bush regeneration for the flexibility and reduced stress. This eventually led to financial strain as the work dried up.
During this period the thought of identifying as a “carer” did not even occur to me. I was vigorously engaging with the mental health service. I attended as many events for families of the mentally distressed as I could. After attending a carer-clinician conference, I began thinking “So, I am a carer, am I?” The idea seemed strange to me because I thought carers were people who looked after the personal needs of disabled or otherwise incapacitated people on a daily basis. It didn’t seem to fit. I didn’t even live in the same house as my daughter. But I did try to support her as best I could.
I began participating with the local mental health service sitting on its Family Carer Advisory Committee (FCAC). I gradually got used to the idea of being a “carer”, and begrudgingly accepted the label. In the meantime my daughter had another protracted spell in hospital. I was becoming increasingly depressed and anxious. Due to the financial strain I accepted an offer of another demanding job. This exacerbated my anxiety to the point I sought treatment for it, and eventually resigned from the job. I felt much better almost instantly, like a huge burden had been lifted.
It took a lengthy period to recuperate. I then began doing casual manual work, and to attend FCAC meetings. I undertook a year of study to get my Certificate IV in Mental Health. My participation and advocacy activity was increasing. Through the service participation unit, I sat on a clinical service quality committee, and delivered numerous lived experience talks to clinicians. I volunteered to lead a family support group at the local service office.
In the meantime my daughter had been out of hospital and relapsed into psychotic experiences that became more and more severe, resulting in a third involuntary admission. I was getting wiser by this time, and the new psychiatrist was brilliant and effectively applied recovery-orientated practice. There was also a great social worker, and we worked together to ensure my daughter got the best care possible, and my family and myself were supported appropriately. My daughter is making great progress.
I had been seeking, unsuccessfully, work as a support worker, and soon realised this was not a good fit for me, my passion being in participation and advocacy. I started training in peer work, with the goal to join a mental health service as an identified carer peer worker. I began participating in the activities of the Mental Health Commission of NSW, and joined the National Register of Mental Health Consumer and Carer Representatives run by Mental Health Australia. I am now back working as an ecologist on a casual basis with renewed vigour for my profession.
The path of mental health advocate and participant has not been an easy one for me. But it gives meaning to the horrors that have beset my daughter and family. I have never experienced life more fully, there have been tears, gut wrenching fear, and deep sadness – as well as joy beyond measure. My life is enriched by the amazing people that have come into it. There is still frustration, anger and sadness at times, but hope is always there. I am learning more about patience, respect and humility.