ElaineMy journey began probably ten years ago, in terms of being a carer, my son was 14 at the time and he started to display quite for want of a better word, ‘odd’ behaviour. My background is that I am psych registered so I had an inkling that there were some mental health issues involved as opposed to a lot of the diagnosis and comments that we were receiving at the time that he was basically just a ‘difficult’ teenager.

I have four children and my son is the third with two older brothers and a younger daughter. There is no family history of mental illness that we know of – on either side.

If I didn’t have any mental health training I would have possibly gone along the lines of him just being a difficult teenager because that certainly was what was being reinforced to us. He was, in their terminology, ‘bad not mad’ and because he had been involved with the police during this time as a result of his behaviours, I think it would have been a lot easier to have probably written him off.

The first signs
He became very argumentative, he became quite suspicious of people, and prior to him becoming unwell he was easygoing typical lad. He then started to question everything and everybody and in particular anybody in authority. That leaned towards school. He was in a private school at the time and they had a lot of emphasis on discipline and we started getting a lot of feedback that he was starting to become extremely argumentative, hostile and quite aggressive when he believed his questions weren’t being answered. We obviously now realise that he was becoming quite paranoid. He had a lot of religious, quite persecutionary thoughts. He was in a private catholic school so it didn’t wear well with the teachers when he started to question them on religious grounds.

He was up until that stage, what we would call a fairly typical student. He was very popular at school and a sports captain and then within three or four months of turning fourteen he became fairly reclusive - he isolated himself. We actually now, looking back, realise that he was probably quite depressed as well. Again that wasn’t diagnosed; he just started lying upon his bed. Because he was being suspended from school a lot because of his behaviours, he spent a lot of time initially just in his room. His dress and appearance started to change; he started to become quite ‘gothic’ for want of a better word, along with lots of body piercing. He also started to self-harm.

Impact on siblings
His older brothers – who are quite a lot older than him and quite conservative, just thought that he was a bit of a disgrace, and that he had let the family down. They were really angry with him, they just didn’t have any understanding that he was ill; we all didn’t really know that he was at that time. It alienated him from the rest of the family somewhat. His younger sister had probably little understanding of it at the time but now that she is 21 she has a really good insight into his illness and schizophrenia in general and is a great advocate as well.

It even began with his dad. His dad took this behaviour very personally in terms of everything we had done for him. The sacrifices we had made, and this is how he repays us by behaving in this way, dressing like this and bringing shame on us. This further isolated him from his family.

I knew that there had to be a reason. I actually started to believe when he was fourteen and a half that he had a mental illness. I didn’t think that it was schizophrenia but I certainly thought that it was psychosis at that stage or maybe I was thinking Bipolar because his behaviours would alternate between being quite depressed to being quite outrageous. But I guess the mum in me always came out – I was always the one who wanted to stand by him even though at times and Ill be really honest, I was quite often embarrassed and shamed not by him but by his behaviours. He was particularly difficult during this time.

When I say difficult I mean he was constantly being brought home by the police, he was constantly being arrested by the police. Because he was expelled from school when he was fourteen due to his behaviours, at one stage we had a calendar on our fridge and there wasn’t a week that went past during a three or four month period where we weren’t at court with him or the solicitors. It just got very tiring.

The correct diagnosis
My son was 17 and he was receiving some forced anger management counselling because of some behaviours that he had displayed. It was a court issue and the person that he had seen for that session was also psych trained and he rang me and asked me if I thought that my son had a mental illness because he certainly did. He was quite concerned about some of the things that my son had said during the counselling. He felt we may have been at risk and that afternoon I persuaded the counsellor to arrange an urgent appointment for my son with EPIC (Early Psychosis Intervention Centre).

I managed to get him to the centre by bribing him. I did so by saying that I’d rung the psychiatrist at the centre and that he had agreed to give my son some medication that he would like; because at that stage my son had developed a substance problem. He was very heavily into drugs and that was how we got him there. He was immediately admitted against his will and he was initially diagnosed with acute psychosis.

He was in an acute psychiatric unit for eight weeks where they attempted to stabilise him on anti-psychotic medication. We then had a four-year period from the age of 17 up until he was 21; where he was non-compliant with his medication regime; and where he was in and out of various psych units for short periods of time. The units could only keep him for so long until he would be discharged and then within four to five weeks, he would be unwell again.

No more mystery
We were going overseas to Fiji and we wanted to take our son with us. The psychiatrist greatly opposed that and I said “Well we are going,” and he said that he needed to give me a letter to show customs because of his medication. The letter said ‘This young man presents with acute schizophrenia.’ It was the first time that anybody had ever said that. They had said psychosis or acute psychosis and I remember ringing the psychiatrist and saying “You’ve written the wrong diagnosis,” and he said ‘No he is now because he has not responded to treatment.’

It was for me total relief that I now had some type of explanation as to why my son had been behaving as he did. I remember ringing up and saying to people; “This is why he has been like he has been all this time so he’s not just bad, he’s got an illness.” It was a relief.

Things were so difficult at that time that he did not live at home with us. He probably didn’t want to live with us at that stage (17-21 years). He was extremely angry and aggressive. He was extremely non-compliant with medication and he had a drug problem. So there were lots of reasons as to why it was difficult for him at the time to come home.

He had become quite psychotic and would smash our family home up and we were just always left picking up the pieces. It was awful.

He was admitted involuntary into an acute psychiatric centre after becoming quite unwell and he was going to be discharged after about six weeks and I fought hammer and tong to have him kept there. He went from there to a psycho-social setting at a major psychiatric hospital at Parramatta where he was kept for 12 months. In that 12 months they managed to find the right medication that suited him and they were able to monitor the ups and downs and fiddle with his medication a little bit. By the time he was discharged 12 months later, we felt secure and that he was safe to come back to the family home. He was probably going to be as good as he was ever going to be. And that is what he did. He came home and he has been home ever since.

As he is on a pretty high dose of anti-psychotic medication, we monitor this closely to see that he has taken it on a daily basis. We take him for his fortnightly injection to actually know that he has had it. He used to say that he was going and even sometimes get dropped off at the facility where he had to have his injection but not actually go in and have it. So now we physically take him up there and we get feedback from the staff as to whether he had his injection. We know that we have to monitor his drinking because if he starts drinking too heavily it starts effecting his medication. We watch that he is getting enough sleep and not having too much stress. For instance something as simple as getting an eight-page document to fill in from Centrelink is enough to cause him to become quite distressed and anxious, so we monitor those types of things as well.

Is he aware of his actions?
He has what we think is selective memory loss. Although we know the medication and the lifestyle choices he’s engaged in have caused short and long term memory loss we think he chooses not to remember - because it would be pretty awful for him to remember some of the things he was up to.

He knows he had issues with the Police and we often talk about how we don’t want to go back to where we were. That’s how we explain it to him when he becomes quite hostile and says things like ‘you can’t make me take my medication,’ or ‘I don't have to take it if I don’t want to.’ We say that we don’t want to go back to where we were, not only for you but also for us as a family.

The odd times we have tried to talk to him about it, he is like ‘I don’t want to talk about this,’ I guess it’s a lot easier. I really don’t think it’s because he’s totally forgotten, I think he chooses to not to want to admit it.

Advice to other families in similar circumstances
Don’t stop until you have a diagnosis. Looking back, I was not complacent but even with my experience I believed that the experts knew. I understand he was very young at the time but those three years between 14 and 17 years where he fell through the cracks, were the most detrimental to him far more than the mental illness itself. During that three-year period he developed very poor lifestyle choices which didn’t come before the mental illness but I believe, were as a result of.

Even now when he’s ‘well,’ when he’s stable; it’s very easy for us to monitor his alcohol and we know he isn’t engaging in illegal drugs. However the minute he starts to become unwell he doesn’t have the ability to recognise the impact that that poor lifestyle choice will have on his long term recovery and will very quickly fall back into that trap.

That three-year period was one in which he felt very isolated from everybody. He’d gone form this confident young boy to this outcast. He couldn’t go to school, he had no friends. When I say he had no friends, his nice group of friends that he used to have had been warned off by their parents. In their place he went and found other friends that had also been expelled from school.

We as a family didn’t know if we were coming or going and so we were probably not as supportive as we could have been. Also he had this label of being bad, of being difficult; and that came from everybody - the police, the juvenile system etc. He was already out making those poor lifestyle choices, where if he’d had a diagnosis, or even suitable medication, he may not have felt the need to medicate himself. That’s basically what he was doing, he was medicating himself because his life was, excuse the expression - ‘shit’.

Current state of mental health system
Knowing what I know now I think that resources are even tighter than what they used to be. Certainly from our experience knowing the industry – I am constantly being told that there is a lack of resources. Things that the mental health team could have done five or even ten years ago they are know saying is out of their scope now because of resources.

ElaineMy own career
When my son was 14, I was a Senior Manager with DOCS. It was pretty awful because I’d be engaged daily on case conferences trying to assist and help families to sort out their issues yet I felt I couldn’t sort out my own issues at home. I realised it wasn’t going to be a good environment for me to be in and I left. I know work for a large organisation that again deals with people who are vulnerable. It is mainly the aged but also a lot of people who have mental health issues. I’m quite passionate about that.

My work with SFNSW’s Remind Mental Health Training and Education
Up until my involvement with Remind, I was, like a lot of other parents, really affected by the stigma associated with mental illness. This was not only from a carer’s point of view but from a mum’s point of view as well.

I find that working with Remind gives me an opportunity to raise awareness of mental illness and hopefully breakdown some of the barriers that exist. What I like to do when I’m giving my presentations is to say to people that this can happen to you. Don’t think it can’t because ten years ago I didn’t think this was going to be my story but it is.

The future
We tend to take each day as it comes but realistically we know we have to plan for the future. We are hopeful that one day our son will take more responsibility for his illness. At this stage he doesn’t.

We know very much that we’re going to be carers for the rest of lives until we’re not able to do it and we know that our daughter will take on that role when we’re no longer able to. It’s almost an unwritten understanding that she knows that will be her role. We don’t want it to be this way but we know that for our son to stay out of jail, or not be homeless, that he needs that level of support from us and we accept that.