Well when that, when first the time I heard the name, “oh Aiko, you are a carer”, first time I actually looked into dictionary what that really means, although I could imagine what that means, I didn’t, my, just to, I didn’t register the actual situation in this country, ‘carer’, what really it means to people. And also I didn’t think mental health issues, it would be so, how can I say? -A huge problem for people. But on the other hand it’s been recognised and there is a treatment, and the support, but all the things I had no idea I could get. But because Jim was out of work, and he wasn’t, wasn’t able to go to work, we had to claim for benefit, but that was really chaotic. And the local, sort of a benefit support agent, one of their advisors said, Aiko you are a carer because your husband is receiving benefit, and he’s got a psychiatrist, he’s waiting for treatment, so that means you are the carer, you are looking after him. Yeah, and then I then started looking for some support for myself. I think the advisor gave me some information, which related to this carer’s support service. And then I made contact a few month later. And things sort of started opening a lot clearer. And then I made lots of questions but also I didn’t know what to ask still what ‘carers’ means. It’s, ‘carer’ is one word but then it has got so much different meanings, and individuals has got different lifestyles, and circumstances, and diagnoses are different. I was still confused actually after I was said you, Aiko, you’re a carer, I was really confused again even more. I think I was doing a lot of research by myself. Luckily we had a computer always at home, just keep typing and research.

Now by this time I had no clue, we had no clue what this is all about. We had no idea what it is all about. So we started to get this, you know, so when I thought, ‘Schizophrenia, what is it?’ So, anyway he says, ‘She’s got mental illness. Ooh I’m telling you, I’m not joking, I felt, because in my mind, a mental illness, because we didn’t have no experience of what mental-. In those times, in my mind I was thinking, ‘Mental illness, oh my God, I’m going to see her pulling her hair out, ripping everything’, you know that’s the idea I get of something like that, I call it ‘mad’, put it that way, ‘Oh my God I’m going to see all these things happening, she’ll be pulling her hair out, doing this, doing that. Anyway, I’m telling you, when he told me that I felt as if somebody had just ripped my heart out, that’s how I felt and when I left the hospital I came home and I went up to my room and I cried and I cried and I cried. And I just couldn’t, I couldn’t, I couldn’t take it. I thought only one daughter, you know, she’s only one daughter, I couldn’t take it, I couldn’t take it all. And by the time I had to go to work, you see, we used to be, me and my husband we both go to work.

We did not get any help from anywhere at the time.

Where did you hope to get help from?

We did not know, we did not have hope that we will get help not heard anything about depression. Not heard anything about depression or epileptic not heard anything. No help and we had not heard about this at all. All we did was go to the doctor and doctor writes us prescription and we come back home and back again. That’s all.

So afterwards?

So after these specialists came and we were sent to them and brain scans were done. They told us that these epileptic fits are happening due to depression. Then they sent us to a psychologist and then we got to know a lot more. Five years later we got to know that this is due to depression.

Maybe about ten days afterwards, in the hospital, there was a locum psychiatrist who was himself back from a stay in hospital for depression. He says, there was a little argument between him and the registrar and the registrar said you can’t release him. ‘Oh I’ll take the responsibility’, because my son had earlier worked on this man to come home. And he said all right I’ll go and stay with my Dad, it’s’ so he just called me and said I’m releasing your son in your care. Didn’t call me to one side, give me five minutes and tell me what is involved or what is not involved. Did not ask me whether I am prepared to do it or that I can handle this patient at home. Nothing of that sort, just you know. And then the registrar lady told him that he had, the pills that were given to him were under his pillow, he wasn’t taking the pills. He was suspecting all of these people inside the ward of being’ conspiring against him.

So he didn’t want to take the medication?

Exactly, so that is why the registrar said he’s not right to go home. So knowing all these things, clinician to discharge a patient in my care who are completely oblivious to any mental illnesses or what it involves, that’s the type of people you have. You see, they were going by the book. What I’m saying is, most people in this business, if they use their common sense, even about confidentiality, use the common sense, what is a carer? A carer has to look after this patient. That means that they do the same things or more, than what a nurse did in a ward, but at home. Now there is no training for these people -at least a little bit of advice, or a gentle, you know, make them aware of what his mental illness is, that he could become violent. Now later on the violence also came in but we were not warned of that.

What, the same doctor that introduced us to a carer centre, because I wasn’t going to no carer centre, at that time was a doctor attending and she said, ‘Oh do you know about’, she said, ‘Do you know about, what you call it, as a carer centre for carers’, so I said and for users as well. So I said, ‘No, I don’t know anything about it, I’ve never heard of that place. It was the doctor attending that mentioned it to me. Anyway I went, I went to see where the place were and then I started going there. She was going as a user and I was going as a carer and that’s the first time that we started to get a little bit of information about, you know, different things and. But before we were so much in the dark about this mental illness, I’m not joking, we were so much in the dark about it and you didn’t have, you didn’t really have anybody to tell you anything in them times. You didn’t have no one who could tell you anything, explain to you about much, not really. Not like now.

On top of that, because I was at work most of the time she came, so I felt it was quite slow, I mean I expected much more, much more help, you know, And I really, I was never, even though Max was with me at home and they must have known, I know they are overworked and so on, but they must have known it’s quite hard to have somebody who is not well at home. I was never asked, you know, how I felt and if I was OK, it was a matter of course that I was going to be OK. And you don’t feel like saying, you know, it’s difficult to cope with, because you feel, well, you’ve got to, and you feel if you are not coping it means you are not adequate, because people are not offering anything, so it means that you should cope, really, so you get into that state of mind. And so anyway, I’d got to know about Rethink, and I don’t know who told me and I can only imagine it must have been either the psychiatrist or the CPN otherwise I would never have known about them. So I contacted someone and I used to go to a monthly meeting in the evening, which was quite useful, and. But then I still didn’t know much about schizophrenia, and really where I learnt everything I know now is on the internet. There is a very good website, schizophrenia.com, and I just went, and then when you go to different websites and I just learnt, you know, I didn’t know there were several types of schizophrenias, I thought everybody with schizophrenia was, you know, the same, had the symptoms, so it was really time to, I mean, to understand what was happening to him, because obviously he had no insight of his illness at that time. So it was trying to make sense of, and what to do to move forward, basically.

So I got involved with Rethink and then somehow I must have heard, been told I was entitled to a carers assessment, and which I had, and I didn’t find it very useful because what he suggested was for Max to go somewhere, like for people with mental health problems for a week, to give me a break, and I had said, had told him Max was not going to go anywhere because he didn’t want to have anything to do with people with mental health problems, as he was adamant that he was not mentally ill. So basically that was it. Either my son had to fit in what was offered, or there was nothing.