'Broken brain, broken hearts, shattered dreams, false starts: How to grow up solid when everything is broken.'
By Kerry Hawkins, mother and wife of a parent with a mental illness. First published in The Australian College of Mental Health Nurses Spring News Magazine 2014.
Our children were born into a disintegrating world
My husband slowly started to become ill soon after we had our first child in 1997. By the time our third child was born in 2002, he was clearly experiencing paranoid beliefs, based on perceived interactions with people. However he wasn’t diagnosed with paranoid schizophrenia until 2008, many long and traumatic years later, with his first suicide attempt and subsequent hospitalisation.
This was not something I had planned for in my dreams around having a family.
It was different in early married life
When we met, he was a solid, loving, intelligent and accomplished person. Like most people, we planned to have a family. There was no indication during our early years of marriage that he was ill. However, after our daughter was born, my husband became a little depressed and stressed, and inexplicably hostile towards me. He started to change jobs regularly on the basis of increasingly paranoid beliefs. He had already become hostile towards my family and friends, and actively discouraged their visits, so support from my family became limited.
By the time our second child was six months old, my exhaustion levels were profound. After three years of minimal sleep whilst working full time in an attempt to keep our house and support the family, I was so exhausted I had a metallic taste in my mouth permanently. The combination of financial strain, hostility and abuse from my husband, the demands of three lovely, energetic and attention-demanding children, and lack of any practical or emotional support was overwhelming.
We struggled on...
My husband’s mental health gradually worsened. For a period of several years, our family life was characterised by despair, destitution and terror. The children were profoundly traumatised by witnessing his rage, confrontations with community members, and absence from our lives. His paranoid beliefs worsened and he was unable to keep a job for longer than several months.
He hated me for not believing him, hated being a father and was full of rage. His belief that people were conspiring to remove him from the workplace degenerated into people actively pursuing him with the intent to capture, mutilate and torture him before finally killing him; people who believed he was a paedophile and who were spreading rumours about him that followed him wherever he went. He left Australia periodically to escape the people he believed were seeking to destroy him. He also believed we were at risk from the same people, and was shattered by the effect he was having on our family.
The nightmare of poverty
Finally, he became completely convinced he was about to be abducted, tortured, raped, and mutilated, and went on a months long trip overseas, escaping his ‘persecutors’ and in fear of his life. This culminated with a suicide attempt using medication provided from a previous hospitalisation. During this period, he rang quite often and left rambling, terror-filled farewell messages on our phone, which terrified the children, who inadvertently occasionally heard them.
The financial cost of the three years preceding this, with flights, accommodation and transport costs and gaps in employment were terrifying. The combination of both a refusal for years to apply for a disability pension (because he did not believe he was ill) and the inability of Centrelink forms to accommodate mental illness, meant that over the last ten years we have lived with a negative income.
The distress caused by poverty is just as difficult to deal with as all the other stresses – poverty is traumatising, disempowering, isolating and paralysing.
I made the decision to go overseas and bring my husband back to live with us in Australia, not only because he clearly would have died if uncared for, but because I believed in him – believed that there had to be a way to help him recover if I could keep him alive, and that he was the only person who could completely heal our children. This has been the right decision.
He went straight into hospital. He was diagnosed with paranoid schizophrenia. For three years after this he lived in mortal fear for his life, despite trying over ten different neuroleptics, including combinations of Clozapine and other medications. None made any difference to his paranoia or associated levels of terror, merely his sedation levels.
Mental health units: More harm than good
He has since been an in-patient several times, both in locked and open wards. These experiences have been profoundly anti-therapeutic for him (his second suicide attempt in 2010 was partly out of fear that I would have him hospitalised as I could see he was unwell, and he would rather have killed himself than be re-admitted), and traumatic for the children. His times in mental health units, other than stabilising him following the toxic effects of his overdoses, have done him more harm than good. The facilities are also profoundly family-unfriendly, with the children torn between wanting to see their father, and being reluctant to experience the hospital environment.
The children were also at a very real risk of losing both parents to the effects of mental illness, as the emotional and practical strains I faced were indescribably challenging.
I had to give up work
In 2010 I gave up work as it became clear that the mental health system in Australia was unable to keep him alive. There was no capacity within the primary care system, acute services or community mental health sector to build a relationship with him, which is what he needed. My presence at home with him eased his anxiety levels and fear, therefore enabling him to reduce his medications that do very little other than sedate him, amounting to what was effectively a chemical straitjacket.
I was able to encourage him to counter the effects on his body of the medication through exercise and diet, as he had gained over 30kg, developed borderline diabetes and a life-threatening deep vein thrombosis as a consequence of the medications. It was also better for the children; I could organise playtimes with their friends, take them to sports training, do community work, cook healthy meals, walk them to school, and so on. It was important to protect them from the myriad of emotional, financial and social consequences of our situation as much as possible.
My time spent supporting him also enabled me to learn about recovery, something never mentioned within medical services.
A broken brain, or broken system?
Whilst none of the medical explanations of the etiology or treatment options for schizophrenia resonated nor worked for us, stories of the contexts of people who had found a way through psychosis did. This led to a peer worker, also a survivor of child sexual abuse, visiting our home – and the process of enabling my husband to heal began.
This process has left me wondering whether mental illness is a truly a consequence of a broken brain, or a broken system?
We got our lives back
My husband has now been completely off any medications for three years now with no signs of distress. I have my man back. After not laughing for over ten years, he has come alive again. He is finishing off another masters degree and planning to re-start his PhD next year. He is confidently re-engaging with the community. For the first time in over ten years, he is planning our future. And the children have their father back, healing them in a way nothing else could. Profoundly aware of the impacts of his illness on all of us, and their needs, he's doing everything he can to make up for the years of anger. And he’s doing it brilliantly, enriching their lives every day with his presence.
Our children are robust, articulate, ebullient and kind, and delight in being a family. They have all been in academic extension programs, play regular sport, are well-ensconced in healthy friendship groups and usually overtly, loudly, happy.
It’s far from perfect, but it’s perfectly normal.
The importance of family empowerment
Different families will have different needs. But what we all need is someone to sit down with us and let us tell them what is required to help us as a family, and then empower us to recover by helping us decide what we need, and enabling us to access those resources with ease and dignity.
At the moment the system is as delusional, fractured and damaging as my husband’s reality, and navigating the array of organisations that have age, postcode and funding criteria, and simply don’t deliver what we need, is just another exhausting trauma to have to deal with. It is too focussed on the individual and on the medical diagnosis. What we needed – and found just in time – was a peer worker who didn’t tell my husband what was wrong with him, but asked “What happened to you?”.
But what families like us really need is a power shift where we get to hold the conferences, we get to employ linguistic gravitas attendant in journals such as these, where we are able to have our heads above water and get remunerated for the incredibly important work we do. We might even allow a token clinician or professional mental health worker to attend the occasional care planning meeting.