Age at interview: 68
Background: Bev lives with her long-term partner in a small Victorian regional town. She identifies as Australian. Bev has two sons and cares for her eldest son full-time with the help of respite workers.
Bev has been caring for her eldest son for almost all his life. Bev's son was diagnosed with intellectual and physical disabilities during childhood and was diagnosed with schizophrenia when he was 20 years old. He has been hospitalised at least 12 times.
More about Bev
Bev described caring for her son over the past fifty years as a 'long road'.
A full-time carer, Bev is 68 years old and has two adult sons. She is divorced and lives with her long-term partner in a small regional town. Bev's eldest son, who is 50 years old, was diagnosed when he was a child with cerebral palsy and an intellectual disability. While he completed his final high school exams, he just missed out on passing. Bev said it was not until he entered the workforce and began working at an office through a program for people with disabilities, that it was 'picked up' that her son might be 'unwell'.
Bev described how her son's manager came to see her and told her that her son would often 'burst out laughing' at work and lacked concentration. At home one night he began talking in 'a different voice and wrecked his room'. While he was never physically violent, his behaviour became concerning enough that she took him to their GP who referred him to a psychiatrist. He diagnosed Bev's son who was then 20 years old with schizophrenia. Bev said she felt 'gutted' for him at the time.
Reflecting on the challenges of living in a rural area, Bev described how there were no services in her town. After her son was first diagnosed, a psychiatric nurse visited once a week to administer injections. One evening, Bev said her son seemed overmedicated to the point of being 'almost unconscious'. She drove for an hour to the nearest town with psychiatric services, during which time she did not know whether he was still alive or 'dead in the back of her car'. Once, Bev had to ask the police to find her son after staff at a psychiatric hospital in a town an hour away informed her that they had 'put her son on the streets'.
Organising living arrangements has been another challenge, Bev said. Over the years, her son lived with family, in community care, in hospitals, and on his own. While he has been 'settled' in a unit close to her for the past two years, Bev said the uncertainty of this constant change was 'exhausting' for her and, at times, had placed him in life-endangering situations. When he was 20 and living in a shared house, she found he had overdosed two weekends in a row because he had access to a week's worth of medication and was expected to manage this independently.
Bev said she feels 'sad' now whenever she thinks of the life that her son has 'missed out on'. She finds herself increasingly preoccupied with 'thinking about dying' and worries about what will happen to her son after she dies. Bev gains 'strength' from spending time with her grandchildren, attending carer groups and working in her garden where she can 'lose herself'. Even though she often feels tired 'emotionally and physically,' Bev said she will never stop 'fighting or pushing for things' for her son.