My story begins about 19 years ago, that’s how long I have been with my husband. I met him and we started going out together. I didn’t know he was unwell when we met. He knew that there was something wrong with him but he didn’t know what it was because he had never had a diagnosis.
We were approaching the two-year mark of going out together; and with all his strange behaviours there was just no explanation for them. He would go wandering off, he would go missing for a few days and then he would come back and not know where he had been, what he had been doing or who he had been with. I would be at the point of ringing the police and saying that he was missing and then he would turn up and act like nothing had happened. I thought at the time that he knew what he was doing but was just saying that he didn’t but it wasn’t until years later that I found out that he was telling the truth.
He would just wander off, not come back and wouldn’t come home but he actually didn’t know where home was until he would come out of his psychosis and remember where he lived and that is when he would wander back. He lost track of all time and had no idea that it had been a few days so he obviously thought it was still the same day when he would return.
I thought that he was doing something wrong and that he was trying to cover it up to hide it. Like any woman would think; I thought he was having an affair and he was trying to cover it up by saying he didn’t know where he was. I wasn’t till years later when he had a diagnosis and I had education about it that I knew he wasn’t just putting it on.
This behaviour went on for about ten years. During that time I was trying to accept his behaviour; knowing deep down inside that he must have loved me if he kept coming back. I just couldn’t understand what I had done wrong to make him behave in that way. I thought that it must have been my fault somehow.
We have two children. They came along in the midst of all this so obviously there were times when he was well and he was fine. He made a clear decision and decided that he wanted children and that was what I wanted too so that was how all that came about.
But then he would become unwell at times in between that which was very hard to deal with because the same behaviours were occurring. It made things a lot harder for me because I was alone most of the time and trying to bring up two little ones by myself.
His mum knew that there was something wrong. In the years prior to us getting together, she had tried to tell his doctors that he had schizophrenia but they didn’t listen. So she knew but just trying to get him diagnosed was virtually impossible. She was working overseas for a long time so I didn’t really have any contact with her which also made things very difficult. I didn’t have much family support on my side of the family because I couldn’t tell them of his behaviours or why he was doing what he was doing because even I didn’t know. I couldn’t explain it to myself let alone explain it to others to make them understand. Even to this day I still don’t have much family support because they just don’t want to know about it.
It was like living a double life – trying to deal with all the stuff happening at home and then if I went out I used to say it was like you were another person; you had to put on a different face to go outside and you would have to go out and smile and pretend nothing was wrong and that everything was fine. You had to do it for the sake of the children as well.
Although they were young, my eldest daughter remembers more than I thought she did, which really hurts and upsets me. She remembers some things from when she was about three and a half. I thought that she was too young to realise what was going on. It wasn’t until she told me one day that she remembered her father being in hospital at a certain time and that really threw me because I thought that she didn’t know anything about it.
Our eldest is turning eighteen shortly, she’s been a bit rebellious at the moment, and our youngest is turning fifteen. I have tried to be upfront in explaining to the kids about their dad’s condition. I can’t remember at what age I told our eldest but she has always been very advanced for her age and very bright, so I was able to talk to her at an early age but more so as she was coming into her teenage years. I sat down with her and explained to her that her dad was unwell and that it was not his fault and just tried to explain things to her in terms that she could understand. It was really difficult trying to bring it down to her level because doctors use some terms that you don’t understand yourself sometimes so trying to re-evaluate that and trying to talk in child language is almost impossible. She seemed to grasp it although on the inside she was probably struggling and a lot of that is now being shown in her behaviours and that both of them have just had enough. I can’t blame them, having two parents that are both unwell.
Everybody is at risk of mental illness. It may take a form of trauma or an event in someone’s life to trigger it off. Caring for him and everything that I have been through with him was obviously what brought out the depression in me. I have always been at risk of it but I believe that just all the years of stress, worry and not knowing – it all just became too much.
My husband was also severely addicted to drugs so he had to go to an Odyssey House where he met the doctor that gave him his diagnosis and who he still sees today. It wasn’t the first doctor who he had seen but it just happened that he came along to see him at Odyssey and the doctor said to him ‘You have schizophrenia.’
It opened a lot of doors just having a name for it. We knew what we were actually dealing with; we knew that there was medication for it and although it wouldn’t actually fix the problem; we knew that it would help at least. We could now explore and experiment with medication and try and give him the most normal life that we could. It wasn’t till he went there (Odyssey) that he actually had diagnosis. That happened ten years down the track.
So twenty years on I have had the first ten years of not knowing and no real explanation and the second ten, knowing, experimenting with medications, hospitalisations, and educating myself, as well as the children about his illness. I also now have to educate them about my own un-wellness. I suffer from depression. So I try to educate them about that as well as their father’s illness. It is a lot for them to take in. They understand it all and at most times seem to deal with it quite well but they do come undone at times and I just wish that they had a normal childhood.
It may have been easier (if he had been diagnosed sooner), he certainly would have been put on medication a lot sooner which probably would have calmed him down and he probably wouldn’t have had as much stress. Having an early diagnosis is pretty important and that’s why I fully support early diagnosis and intervention, especially in young people. I am a huge believer in that as it is so much more beneficial. The sooner you get on top of it the better.
Overall I feel he has had quite a successful life; when he is on medication it is a lot easier. I don’t have as much worry there compared to when to when he is not on medication. I think that I have learnt to cope with things better. When he has an episode I think I deal with it better than how I used to because I know what I am dealing with. And when you know what steps to take and what actions have to be taken it makes things so much easier. I mean he always refuses to go to hospital and that’s stressful within itself, just trying to convince him to be seen but once that is established and the ball is rolling it makes things a bit smoother.
He’s been in and out of institutions since his early teenage years and he saw a lot of horrible things back in the day when they weren’t real good. He just refuses to go there because it brings up too many memories for him. It’s not a flashback as such but I guess the trauma is already there because of what he has already been through.
Things can happen pretty fast. The most recent episode started on a Friday and it all happened within about 30 minutes; from him being able to talk to me and then being in a full blown episode and not knowing who I was; I just couldn’t get through to him at all. So it is within a very short space of time that it actually happens.
I am much better at reading the signs than in the past. I know when he is becoming unwell and I know what I have to try to do to get him back on the right track.
He goes completely blank when he has an episode. After his most recent episode and hospitalisation, I told him what had happened a few days later. It was a very traumatic admission to hospital, he wasn’t aware that any of that had occurred at all, he couldn’t remember anything and that happens every time he has an episode. So that is why, in the years previous to that when he had an episode he just lost track of the time and he didn’t know. This is still repeating itself because he doesn’t know what has happened or where he has been. He doesn’t remember a thing.
Talking about their problems
We do have to talk through the things that have happened. Because the both of us are unwell we constantly spend time trying to understand each other. I have a huge understanding of his illness; why it happens, what it does – but he is only now learning about my depression. He’s still not fully understanding of what I go through. That may sound silly because you would think that he would understand as he has a mental illness himself but with depression, you have very negative thoughts, whereas he doesn’t have that. This results in him getting very annoyed with me and saying ‘June, you have got to be more positive, stop thinking like that.’
I then get frustrated with him because he does not understand what I’m going through. I’m having negative thoughts. I don’t want to have them but they are there and when you’re unwell and trying to make them go away, it’s just impossible. You need help to do that but he’s only learning all of that now.
He’s never seen any councillors or anything, which I think has been a disadvantage for him because I think it would have helped him understand his own illness a lot sooner.
But he just always refused to go and it’s just something that occurred and he’s not even seeing them now. I think he’s still learning to adjust and ask for help, so he doesn’t always do it but he’s trying to grab hold of that concept and not be too proud to ask for help.
Advice to other families in similar circumstances
Well in the early days it was really hard. I mean there are a lot more services now. Ten years ago there wasn’t a lot available and you really had to know where to look and where to go to get any sort of assistance.
But these days my advice would be to seek the services and fully utilise them. Perhaps also talk to other carers or loved ones or people with a mental illness; not so much to get advice but to talk to them about their experience. Other carers have been a great help to me. They’ve given me ideas and told me about places I didn’t know existed. So you find out a wealth of info from other people. And at the same time as doing that you’re also creating support for yourself because you do need a very good support network to be able to cope; to know you have someone you can call; and that they understand what you’re going through.
The other biggest thing is education; you can’t have enough education about mental illness. There’s a new thing to learn all the time, I’m still constantly learning. If I didn’t have the education about my husbands’ illness, I don’t know where I would be, so it was a blessing. Education is empowerment.
My work with SFNSW’s Remind Mental Health Training and Education
In the early days I had education through Carer Assist. I did some of their carer courses with them for carers which centred on self-coping and learning how to look after yourself and how to cope with your loved ones illness. I have met people through learning and education. Some have been inspired by me when they’ve met me and they’ve offered or suggested that I do certain things. I came to Remind through Harmony House when my husband was working there. It’s snow-balled from there and through word of mouth.
I’m a strong believer in education and that’s why I now believe that I need to help educate other people and raise that awareness and break the stigma. Hence that’s why I’m doing what I’m doing today, because that’s all part of that process. Somebody has to put themselves out there, on the line and say “well it’s not okay for people to discriminate against people with mental illness.” I believe in that whole-heartedly and I’m very passionate about it.
We are real people and we’re just like everyone else. We want acceptance and understanding in the community. We don’t want to be looked down on or shunned. A lot of people walk past us in the street and they don’t know that we have a mental illness but that’s because we’re well at the time but if we were to walk down the street while we were unwell, that would be a very different story with people staring, laughing, pointing and that sort of thing.
I’ve seen people walking around in a daze on the street and I’ve known they are unwell. I simply give them a smile and go on my way. I used to think ‘what the heck are they doing?’ when I was younger - but I wouldn’t say that about someone now. I’ve got the insight to know better and they’re obviously struggling and having a difficult time. That’s the sort of understanding we need in society.
I worry about our family’s future. We’ll be like every other family of course, our kids will grow up they’ll move out of home, they’ll have children, all those normal things. Hopefully Michael and I will become grandparents; just like everybody else and the whole process will begin over again to educate their children about mental illness as well; so that they have an understanding of us.
Other than that I think it will be quite normal but I do worry that my husband will eventually be institutionalised because unfortunately there’s no going back for him. He’s never going to have full recovery, we’ve been told that and it’s a very hard thing to deal with. He’s said that he’s going to end up in an institution because he knows eventually I won’t be able to physically care or mentally care for him when I get to a certain age and that really distresses me as well.
He’s told me to leave him in a nursing home and walk away when he gets so bad that I can’t look after him – I’ve told him that won’t happen – we have those battles all the time. That’s only because he wants a better life for me and the children. Sometimes he thinks he is to blame for a lot of the stuff but there’s no blame anywhere because you can’t control some things in life.
I know his brain has deteriorated over the years and I think that it won’t be just his illness or the schizophrenia itself that will get him institutionalised, it will be the detoriation in his brain. I think it will finally cause him to be in full time care because I’ve seen the decrease in him; he’s such an intelligent man and yet some days even the simplest of tasks become very difficult for him.
Basically we try and live each day as it comes and make the most of each day, appreciating each other and the children and what we have. It’s like anything; you don’t know how much time you have. Nobody knows when they’re going to die and I learnt that myself almost five years ago when I had an experience with cancer that was life threatening and that changed my life for me. I used to plan ahead but not anymore; I live for the day,
Life is too short for anybody whether they’re unwell or not. People can be killed just as easily in a car accident. So yeah, live for the day I think.