I have just put down the phone from another protracted, agonising conversation with my adult son’s psychiatrist. Stuck in a forensic psych unit for two years, Tama has been on antipsychotics for nearly twenty mind-f***ing years. Placed under the Mental Health Act for most of that time, he has been treated with so many different antipsychotics, including, in the last ten years, Clopixol by ‘jab’ (in the buttock, every two weeks). In and out of hospitals, police cells, community settings… all the usual stuff. I (and his father) have experienced internal agony whilst witnessing the impacts on him. Seen by clinicians as chronically ill and a risk to others, he is now doomed to stay in the forensic setting until he accepts the drug clozapine, and gains ‘insight’ into his illness, which he and his family have said a strong ‘No’ to.
His is seen as a complex case.
And it is, now.
At the very first assessment, I refused to accept that he had an illness. I believe to this day that his unusual thoughts and talk of suicide, all those years ago, were a reaction to abruptly stopping recreational drugs. At the time of seeking help, Psych services saw him as psychotic and started Risperdal immediately. Even then, without knowing any of what I now know, I protested; surely talking therapy was better? Now he is ‘ill,’ from years of drugging, with legal drugs. The last twenty years have been a two-part battle of wills: one against the doctors, their nurses and their illogical ‘medical’ view, and the second battle to support my son’s integrity against the views of family and friends.
Tama has been the direct victim of negative institutional culture and clinical inadequacy. But his family have also been victims-in-the-shadows in bearing witness to the direct and indirect effects on him. In spite of hundreds of phone conversations, face-to-face meetings, court hearings, letters of complaint to authorities, we have not been able to stop his treatment nor get him out of the system.
He has experienced legalised subjection to continuous harm by the drugs, the trauma of being forced into inpatient treatment, forced seclusion, group physical restraint, misrepresentation before the law by doctors and psych nurses and so on, and on. Nothing unusual, really, for the standard psychiatric patient over the last 200 years — especially for a young male, it’s been the typical assaultive, misinformed practice.
I am so familiar with these phone calls from psychiatrists. Contacts are few and far between but usually made with the family just before the routine court review to continue the inpatient treatment order. Tick that box — ‘consulted with family’. It’s been nearly 15 years, next month, since Tama was put under the Act. My internal dilemma when I get these calls is always:
Do I lie and change the story line and agree with the psychiatrist that my son has a mental illness so they don’t maintain their view that the family is persuading the patient away from gaining the insight he needs to accept he has an illness and therefore… blah blah bull s**t? Or,
Do I maintain my position that he was never ‘ill’ and only has become so because the antipsychotics have caused irreparable damage, in addition to the psychological trauma of being viewed as insufficient? And,
How do I shift my view of doctors as being enablers of harm, to one which encourages a more constructive interaction (even though I know that Tama cannot recover whilst being maintained on heavy doses of antipsychotics)?
Every time I have these conversations I get ‘triggered’. I experience powerful emotions of intense frustration and desperation which surge up in my body and require a massive effort in self-restraint in order to avoid ruining what could possibly be a mutually useful conversation where we both gain some insight into each other’s position. This practice in self-restraint has taken years to develop, and still it’s a struggle. Throughout the last two decades, I have observed these feelings of desperation rise up as I hear the same old bulls**t being repeated by nurses and clinicians alike. Mostly the emotions spill over and I hear myself saying the same thing too, something like:
“I can’t believe you are saying this when you know the evidence says blah blah….! Your drugs have made my son worse, how can you say it’s the illness when there is not a scrap of evidence to support this? His violent attacks stem from the drug change/increase, he can’t even think properly! That’s the drugs, he wasn’t like this before! His whole quality of life is down the tubes! Please take him off the drugs!”
Doctors are stubbornly emphatic that he ‘needs’ them and that without them his ‘illness’ will make him a risk to others. They consider him chronically mentally ill. The notes say this, the doctors say this, the legal people repeat this, the managers and commissioners repeat what the clinicians tell them. Family concerns bear no weight.
My reading began with Toxic Psychiatry, a book which almost literally fell into my hands at the beginning of this awful journey in 1999. A year later I bought a copy of Your Drug May be Your Problem. These books supported my intuitive hunch that psychiatry had a poor idea of how to work with unusual behaviour. (I now have an extensive library, books, articles and online bookmarks and e-documents, all gathered in search of best practices.)
Our family supported Tama to withdraw from antipsychotics three years after that first meeting. The process was overseen by a holistic doctor, but all of us were not aware of the full picture of what to expect. A brush with police a year into the withdrawal put Tama back into the mental health system and he has never gotten out. This was in his early 20’s, 15 years ago. He was put under the Mental Health Act and he was seen from then on as both ‘non-compliant’ and a ‘risk to others’. Now I see that psychiatrists simply maintain this ‘chemical straitjacket’ in order to cover themselves and escape litigation in the event of their patient harming a member of the public. This very defensive, fear-based practice which is encouraged by the legal system motivates clinicians to continue drugging in spite of current evidence of harm and antithesis to recovery. It was a shock to discover the truth.
Back in the system, Tama sank back into a drugged state which was distressing for me to witness. During the time he was off meds I remember him telling me that he could think again. He lost all the extra weight he had gained on the drugs, he got his energy back and he was living independently, with full agency. Now he plummeted back into frustration, agitation, hopelessness, dependence and stagnation.
It became clear to me that regardless of how ‘informed’ I might have become, it did not help Tama’s situation, and my awareness antagonised the clinicians. Knowing the evidence only made it harder to see that the longer Tama was on antipsychotics the less likely he would recover and the more damage to his health would ensue. It also put me at odds with other family members who would argue that I should go along with the doctors.
When Tama was released into the community on clopixol depot jab, those close to him began observing a pattern where he showed symptoms of extreme drug overdose directly after the jab was given, then acute withdrawal towards the end of the two weeks. Tama described cycling between insomnia and agitation at the end of the cycle to sleeping 18 hours or more and not being able to function for days after the jab. We wrote to his psychiatrist with our concerns and had meetings and phone conversations but nothing was done, no dosage change, drug change or reduction. Even though Tama was medication compliant for many years he was still in and out of hospital because of ‘risk incidents’, but never was clinical practice evaluated, it was always Tama’s fault, and as for those parents with their antipsychiatry views…!
The family was, and continues to be, caught in a chronic catch 22 dilemma. As we observed the deterioration of our loved one, our observations were not acted on even though we wrote to several government agencies that are tasked with acting as watchdogs. We cannot find legal support to stop the medications or to hold clinicians accountable for deliberately and blatantly breaching Tama’s human rights. We have found we have no voice — that is, no matter what ‘evidence’ we supply to support our view that Tama is only ill because of the effects of the drugs and that the only way he can regain his life is to be carefully withdrawn, this is not acted on. Of course, Tama has the final say, and he now says, “No, I want to stay on the drugs.” It’s hard to know if he is saying that because he wants to appear compliant and indicate that he has gained insight, or because after all the years of drugging he suffers from anosognosia, or he is so afraid of the effects of withdrawing, or he can no longer see clearly the negative impact of years of drugging.
For me, I struggle to put my son’s case clearly whenever I have a conversation with clinical staff, particularly a psychiatrist. I come away from the conversation feeling desperate and traumatised. As a mother, I want to share a meaningful connection with my son as I do with my daughter. I want to witness him happy, healthy and living the life he chooses. I also want to be free of the grief and distress I experience every time I have contact with the very people who are having this overwhelming effect on Tama’s quality of life, health, spirit and mind. This situation affects all of us; this impacts my/our whole life, how can it not? That which negatively impacts one person in the family impacts all of us — we are connected, like it or not.
To Act or Not to Act
Reading evidence is not action. Learning about others’ experiences and building a library of research has done nothing to change Tama’s situation; doctors get very defensive if you talk about what you have learned, they see this as challenging their practice and status as an ‘expert’. For me, taking direct action is a necessity in order to avoid getting ill from the perpetual stress and trauma from this insidious situation. Direct action includes networking with peer organisations, writing to authorities, attending meetings led by proactive peer groups, organising petitions, attending education events and connecting with others who are going through this horrendous situation. This helps, sort of. But it hasn’t changed anything for Tama. The same messages are coming from the same people. He’s still locked up, forcibly drugged, humiliated, pathologised, secluded, restrained, punished.
After all this I have decided that fighting the system does not work. I have not been able to find an avenue to stop what is happening to Tama, even though there are so many mothers/families like me who share my experiences, we are all up against the same very hard, cold brick wall.
What precipitates change? What precipitates healthy change?
Not all families, particularly mothers, want to change the medical paradigm. Attending a Mental Health event called THMes a few years ago in NZ, I had an experience which shook my view that all families saw the situation the way I did. At the conference, families were split off from ‘consumers’ and had their own area of the plush venue to interact and to listen to other family experiences. An Australian mother and daughter presented and repeated the ‘illness’ paradigm to the audience, describing their campaign for more services that supported more controlling, dictatorial medical containment for their two ‘very ill’ adult male family members. Suddenly, I was aware of an insidious push from a group of families for the state to up the funding to supervise their loved ones in the community more closely. A strong and powerful collusion with the psychophamacological complex. This Australian mother-daughter duet were reinforcing the call for the family to control all the choices for their family members. Together with the old ‘schizogenic mother’ model which views families as precipitating trauma and triggering distress ‘symptoms’, mental health services treat families, particularly mothers, as persons to be suspicious of. I was disturbed by the knowledge that there are mothers/families potentially sabotaging the movement for change. No wonder the peer movement were wary of them!
Sure, Tama’s father and I have had long and difficult conversations around the question of “Did we cause this?” Introspection of this nature creates relational complexities with the wider family and induces trauma which is potentially destructive. Family members become distrustful, blaming each other and creating further schisms in relationships, making the whole situation more complex.
For our family, there is an overwhelming weight of frustration, introspection and confusion around the question of “Can I help, should I help and if so, how?’ Tama should lead his journey, sure, but what about when he is f***ed up by the drugs? Who would he want to advocate for him, on his behalf?
For most families that I know of, those who know the evidence or have a hunch that the system is fundamentally flawed but know no other way, they, in their despair, move away and leave their loved one to find their own way. Most often, their loved one sinks further and further into ill health and distance. Then the family has to choose, do they pick up or do they leave their son or daughter to the halfway house, the street, the hospital or the ‘four winds’.
I have watched and heard of many, mostly mothers, who battle on, with their loved one living with them as they age, and the rest of the family leaving the support entirely to them. I have heard of mothers moving into aged care and their loved one being shipped into the same care home by their families. If this journey continues for Tama as it is, will this be my lot? What will happen when I die?
People say to me, “You have to live your life and just be happy” and I think, how can I leave this situation aside and not continue to equip myself with up-to-date evidence of what constitutes effective healing practice? How can I pretend that it’s okay to maintain this abusive system of care? Who will push for accountability?
Families deserve to heal too
How can individuals find true recovery if their family is still fragmented and hurting and they are disconnected from them? Should there not be recognition of the trauma they too have been through? Where trauma is multi-generational and communication is compromised, should families not be given the opportunity and support to gain insight into how to change this? Where would we turn for this help, and can we be sure it would be safe?
My dream is that someone, somewhere would facilitate this type of full family healing using something like the Hawaiian process of Ho’oponono as practiced by Dr. Ihaleakela Hew Len. He is well known for emptying the island’s forensic hospital in the 1980’s, over a period of three years, using an indigenous practice of forgiveness. Perhaps this worldview is similar to First Nations in the Americas where blame and trauma were lifted using ritual, and love and forgiveness were the products of ceremony. Dr. Lewis Mehl Madronna, in his work, describes the extraordinary power of full acceptance of the individual in the context of family, their history and their community. For people who hold Maori and Pacifica worldviews, we all carry our ancestors with us and healing happens when we reconnect with the spirits of those who know where we come from and can create the potential for who we were meant to be.
Here in Aotearoa, I earnestly hope that my son, Tama, his family and our ancestors can find completeness, peace and freedom from this psychiatric stranglehold, within an emotionally safe environment with people who support forgiveness, acceptance and reconnection within the spirit of love.
I hold and support this possibility: that the right people can be gathered to create a healing community for families to release trauma. Perhaps that is what we need to do?