Age at interview: 52
Background: Alexia lives with her son and husband in an outer metropolitan suburb. She moved to Australia when she was 18, and identifies as both Middle Eastern and Australian.
Alexia cares full-time for her son, and works as a volunteer one day a week with families of people living with mental illness and addiction. Alexia's son was diagnosed with episode psychosis when he was 21, schizoaffective disorder when he was 26, and personality disorder when he was 29. He has been hospitalised involuntarily eight times, and has been placed under several Community Treatment Orders (CTOs).
Carers' experiences of person cared for first becoming unwell - Alexia felt that more help was needed for her son to understand the impact of drugs and alcohol on mental health.
Carers' experiences of searching for information - Alexia described how joining a carer support group helped her to 'overcome' the discrimination she said she had experienced within her ethno-cultural community after her son went to hospital following his first episode of psychosis.
Carers' experiences of person cared for receiving a psychiatric diagnosis - Alexia described seeing her son's psychiatrist with her son and asking the psychiatrist to explain his son's 'personality disorder' diagnosis. Her son didn't agree with the diagnosis and left the appointment.
Carers' experiences of hospitals and mental health units - Alexia recalled witnessing her son experience a 'horrendous' withdrawal when his case manager failed to follow up Alexia and her son's request for support to stop using ice (crystalline methamphetamine).
Carers' experiences of support groups, support workers and respite care - Alexia explained how, when she was very anxious, she had been helped by a 'carer consultant' and 'support worker' who had encouraged her to attend a support group.
Carers and supported decision making mechanisms - Supported decision making mechanisms were less 'valuable', Alexia suggested, for carers of people with severe mental health problems who 'live in denial'.
Carers and Community Treatment Orders - When Alexia's son told her he had been discharged from his CTO without a plan in place for therapeutic support, she said it hit her like a 'bucket' of 'ice' cold water.
Supporting treatment decisions - Alexia described her 'terrifying' experience of caring for her son for nine days when he was 'relapsing' and did not want to seek treatment.
How to increase carers' participation in supporting treatment decisions - Practitioners needed to 'involve' family carers more in decision making about treatment after their loved ones left hospital, Alexia said. This could help 'prevent' carers' loved ones from becoming 'unwell' again.
Impact of caring on working life and finances - When the Disability Support Pension was paid to her son's bank account instead of to Alexia's, he began purchasing expensive items and went into debt.
Advice for mental health practitioners - Alexia admitted initially she had wanted to 'protect' her son and 'not to let go'. However, she said this was no longer the case because she had gained 'understanding' of mental health issues through education.
More about Alexia
Alexia says that one benefit of her quest over the last ten years to find 'holistic' treatment for her son is that she has changed for the better into a 'different person'.
A homemaker, Alexia is 52 years old and married with two adult children. For the past decade, she has cared for her 30-year-old son who lives with her and her husband. Alexia described first suspecting her son was using 'illicit' drugs when he was 14 and said she thought this was an escape from tensions at home. When her son was a teenager, Alexia feared he would be found 'dead in a gutter' due to his 'addiction' to drugs, which he continues to use.
Alexia noticed her son was acting 'paranoid' when he was 20, and he was hospitalised and diagnosed with first and second episode psychosis at 23. Five years later he received a diagnosis of schizoaffective disorder, after which some members of Alexia's cultural community claimed there was 'nothing wrong' with him, and 'blamed' her for 'throwing' him into hospital. This made her feel 'judged' at the time when she needed support.
A main obstacle Alexia feels she has had to overcome has been the 'unprofessional' behaviour of some mental health practitioners. Her son's case manager told him when he was 26 that he was not mentally ill but just had 'anger issues'. Alexia believes that since then her son has 'lived in denial' about having a mental illness, which she said has made caring for him difficult. Alexia said her son's treating team also ignored her whenever she tried to warn them that he was relapsing. She also questioned the quality of treatment her son received at the hands of a psychiatrist who she said called her son a 'liar' when he diagnosed him at the age of 29 with personality disorder.
Alexia's son has been hospitalised eight times in ten years and discharged each time on a CTO. Alexia feels that he is stuck in a 'cycle' of receiving a fortnightly mandatory depot injection of antipsychotic medication whilst under a CTO, then relapsing after the CTO is lifted. In Alexia's view, depot injections do not count as 'proper treatment' for people like her son who have both a mental illness and a drug addiction. She said they just 'keep him hanging', and described her worry that there will be no one to prevent him from falling through the 'cracks' of the mental health system after she dies.
Alexia thinks her son urgently needs a dual diagnosis, in recognition of both his mental illness and substance abuse problem. This would make him eligible to see a dual diagnosis counsellor who could explore the 'layers' behind his mental illness and addiction.
Although the challenges she has faced have been 'heartbreaking', Alexia said they have also enabled her to find her voice and to speak out about her experiences. She hopes that hearing her story might help others facing similar challenges.