"I have been a carer for my son, Jackson for the past eleven years. I fear he might not make it. Jackson was admitted to hospital for treatment 3 years ago. While there, he was sexually assaulted. Now, he struggles greatly with his condition. As a carer, I have been on a long, stressful, and distressing journey. It has been profoundly life changing and the impact is underestimated. It creates a state of constant anxiety.
The word "journey" is often overused today....but in the case of mental illness I consider it appropriate as it captures the experience of my family member living with a mental illness over the last eleven years and that of my family travelling with him. It can be bewildering, frightening, and offers no certainty regarding the destination. There are many bumps along the way, there’s derailments, and despite the little guidebooks, you simply have no idea where you’re going. Despite the many encounters with others, you develop few close companions. It’s lonely and isolating, filled with fear and uncertainty. You just have to keep going, you fall, and you pick yourself up again and again, and struggle on.
There is a grieving process associated with the painful loss one experiences in mental illness. I consider that grief is central to the experience of mental illness, both for the person living with mental illness and for the carers and family deeply affected as well.
For carers, grief is often invisible, experienced, and not named. It’s not publicly acknowledged, and it is poorly understood. It’s often dismissed. And, it has to put into abeyance while there are crises to be dealt with. It has no beginning, no end, comes in waves, and is always present. As a carer, you have no framework for these feelings, and you are offered no resolution. It’s complicated by the fact the lost person being grieved for, is present and in pain. Around mental health professionals, your grief must be hidden, otherwise, you risk being labelled and your grief used to discount your standing.
Your grief never goes away, it just continues to rise. For carers and families of people with mental illness the experience of loss and feelings of pain are profound and ongoing, as one observes their loved one struggling to live with a mental illness. When your loved one has a mental illness, they lose the simple enjoyment of life, a sense of fulfillment, a meaningful life, basic development milestones, reaching their full potential, and a loss of control of their own lives.
For carers, the loss can include the pain of the loss of the life you had before the disruption caused by mental illness. You lose the easy ordinary, lightness of life. You feel helpless, and despair at having no power to alleviate the suffering of the one you love. You feel anguish at seeing no place for your loved one in the world. And, you lose your family's privacy, by an intrusive health system.
Caring has impacted upon my mental health too. As a carer, I have felt chronic sorrow. It’s entered my life, and led to accumulated layers of negative thoughts, and unhelpful patterns of behaviour including feeling helpless, bitter, frustrated, angry and isolated. My caring role has led me to feel fearful, hyper vigilant, anxious and despair.
• More face-to-face counselling services for families and carers of people with mental illness.
• Establish ways to identify at-risk groups of children and young people, predisposing factors, and underlying causes of mental illness, including the impact of early trauma on the emotional health and wellbeing of children and young people.
• Provide free, early, effective therapeutic parenting programs to parents and caregivers of young children.
• Fund specialised therapeutic services for disturbed children and young people early in order to avoid crisis-driven approach to services later.
• Expand the range of specialist educational programs available to children who struggle to fit in to mainstream education, and ensure teaching staff in these settings are trained in trauma-informed practice.
• Provide early training, and then ongoing education, in evidence-based trauma informed practice, for as many professionals as possible who engage with children and young people (e.g. education staff / health professionals / police / child care / child welfare agencies).
• Educate GP’s better in early detection and management of mental health challenges, especially in children and young people.
• Bring back community health operated mental health services and one-on-one support to young people affected by mental illness and their carers / families to help avoid admissions to hospitals or to area mental health services.
• Retract Victoria's Mandatory Sentencing laws for people who injure first responders, and instead leave it to the courts to consider all the circumstances which lead to someone responding in this way. Identify that people who for example have had very disturbing experiences in Victoria's acute mental health inpatient units may be determined to resist any attempt to have them intercepted by police, and readmitted to a mental health facility
• Better recognition, respect, engagement and support of parents/carers as therapeutic partners in providing support to people with mental health challenges
• Require all mental health services to demonstrate family-inclusive practice as per the "Working Together With Families and Carers - Chief Psychiatrist's Guidelines"
• Identify and consult with carers / family members at all stages of a person's mental health journey.
• Identify the challenges that issues of privacy / consent / confidentiality pose in terms of carers'/ families' communication with mental health clinicians, especially at critical points of care, e.g. discharge planning.
• Focus care on "relational recovery", not just on individual-centred recovery.
• Provide clear resolution pathways within mental health services and also a complaints mechanism to the Mental Health Complaints Commission which allows carers to reflect on standards of care of mental health services without a consumer's consent
• Ensure the implementation of best practice treatment and care models that are person-centred,
• Require all staff working in this field to have a minimum level of mental health training and ongoing education and training in mental health.
• Identify the importance of the impact of staff retention and continuity of care in mental health services. Personal connection and understanding are intrinsic to the therapeutic trusting relationship between child/ young person and clinician.
• Build a greater peer support workforce / greater consumer and carer lived experienced staff.
• Ensure that consultation with parents / carers / families is considered essential to best practice in all mental health services and create KPIs to monitor this.
• Implement the recommendations of the MHCC sexual safety project report - "The Right to be Safe Report" - e.g. by providing single rooms in all mental health inpatient units"
* Names and places have been changed to protect individuals.
Will you add your voice to let everyone know about the state of the mental health system?
While we welcome you to share your story with us, we are not able to provide clinical advice, referrals or support. If you or someone you know require assistance or need to talk to someone please call Lifeline on 13 11 14.