Jean* is 73 years old, and is the full‑time carer for her 43‑year‑old son, James,* who lives with her. Jean saw a decline in James’ mental health after some distressing experiences in his late teens. He has been diagnosed with schizophrenia and a number of other medical conditions. James has a long history of experiences with the mental health system, including spending time in psychiatric wards and on compulsory treatment orders.
Caring is a full‑time role for Jean. As James’ carer, Jean says one of her key roles as carer is coordinating her son’s healthcare.
Advocating for his medical and specialist services, dealing with the [National Disability Insurance Scheme], managing his diabetes supplies and records, podiatry, pathology, dental care all contribute to a full load.
Jean spent almost two years trying to put in place longer‑term living arrangements for her son. Despite successfully applying for a permanent place in supported independent living, her son wanted to remain living with his mother.
My son, in all seriousness, expects me to care for him until I’m in my nineties.
[M]y son declined the offer and said he would kill himself if I made him live there.
Jean is concerned about who will care for James if she is no longer in a position to support him.
What are the options for my son should I die or become unwell given there is no one in the family who could take over my carer role? … Recovery seems out of reach without significant input and support.
Jean highlights the importance of continuity of care and treating physical and mental health together and recommends providing comprehensive support for carers and families and including them as part of care and discharge plans.
Jean said she would like to see carer consultants work directly with carers, without session or time restrictions, as they try to seek help or navigate the complex mental health services.
Source: ‘Jean’ (pseudonym), Correspondence to the RCVMHS, 2019.
Note: *Names have been changed to protect privacy.