Age at interview: 65
Background: Elena is 65 years old, divorced and lives in an outer metropolitan suburb. Of European descent, she was born in Australia and has four adult children. One of her sons was diagnosed with paranoid schizophrenia when he was 19.
For the past 26 years Elena has become increasingly involved with carer support. Her son, now 44 was initially diagnosed with paranoid schizophrenia at the age of 19. His current diagnosis is schizoaffective disorder. He has had many compulsory inpatient hospital stays. At one point, Elena did not hear from him for several years when he broke off contact. Now Elena and her family are in regular contact with her son.
More about Elena
Elena described how the onset of her son's mental health problems more than 25 years ago introduced changes into the 'emotional dynamics' of her family's life, which were 'traumatic'. But over time, Elena said, she 'came to terms' with the changes - both in her son and in herself - and has now incorporated them into her life.
Elena said she first noticed her son was acting 'bizarrely' when he was in his mid-teens. One day when he was about 16, she found him reading an encyclopaedia, which seemed out of character. Later on, he told her he had been researching to 'diagnose' himself. Over the next three years, Elena said his strange behaviour increased.
When Elena's son was about 17, the family convinced him to consult a GP. However, Elena said the doctor initially would not refer him to a psychiatrist out of a concern that admitting Elena's son into the mental health system would be 'stigmatising' for him. Two years later Elena's son, then aged 19, was admitted to a public psychiatric hospital for compulsory treatment.
Elena's son received a diagnosis of paranoid schizophrenia during his first admission. Elena recalled feeling 'included' in that process by the psychiatrist who diagnosed him. She said she felt very lucky that that psychiatrist had been 'sympathetic' to the issues that families face. Subsequently, Elena's son diagnosis was changed to schizoaffective disorder.
Elena's son spent many years as an involuntary patient in various psychiatric units. Fifteen years after his initial diagnosis, he chose to break off contact with his family because, Elena explained, he thought it was his family's 'input' that had led to his many hospital admissions. Several years passed before Elena's son re-established contact, which she said was 'hard' for her family. Now aged 44, he lives independently in a unit on his own where Elena regularly visits him. She said he is 'doing well'; and is involved in their family's life.
After her son was first diagnosed, Elena wanted to meet other carers of people with mental health issues. Unable to find any in her area, she is a founding member of a carer support group, which is still running 25 years later. An unexpected avenue that opened up for Elena as a result of her experiences of caring for her son, has been her work in mental health. She said her current role in carer support means she can share her knowledge and experiences to help others come to terms with the presence of 'mental illness' in their lives.
Contemplating nature gives Elena a 'light-heartedness', that she said provides a contrast to the sadness that has also been, in her experience, a part of life: 'But if you hadn't had the sadness', she asked, 'how would you recognise the feeling of happiness?' Elena said she aims to lead a balanced life in which caring for her son has its place alongside other activities that bring her personal fulfilment.