So anyway it went on and went on until eventually again -they keep changing the tablets now, they keep changing the medication to find out which one suits her best, that’s what they did. And the doctor told us after a while, he said they have to change them, you have to do them until you find the best one that suits her. Anyway they did this and until they come to one that really was not too bad and we continually used that one and then after a while we’re back at the doctor again and asked for the medication to be changed again. You see, because we thought, well we want something, better medication so that she can live a really normal life, you see. So we go to the doctor and we explain to him and then eventually they put her on this one and it’s been a good one, it’s been a good medication, you know, it’s been quite good with her, she’s a lot better now than what she was then, a lot better.

Fortunately for us the web sites came in now. There’s a mine field, they’ve got stacks and stacks of information that you can read. You can even tell the clinicians I have read this. I have had certain occasions when I have had to take out print outs from the web sites and send it to them. Look these are the side effects. Because my son, he was on clozapine, which is the best medication they say for schizophrenia, and the side effects were so bad that he used to block the toilet every time he went, which was once a week, or two. It was so bad and he was using Vaseline and things. I said, what, – he was on a vegan diet, I said, ‘you are not eating the right thing, they need to-‘ ‘You don’t know what you’re talking about Dad. If he had told me that he was having constipation problems, I would have told the doctors. But if you don’t tell them they don’t know. This is what I’m saying. So once I went to unblock the toilet, I thought this was bits of stone in it, black stone. It was that colour. And finally, they cut it down and they had to change the medication and this and that. But now he’s back on it again, because that is the only medication that really works for him. There are other things that they’re going to give to counteract the side effects of this. And then he salivates quite a bit as well and saliva, that’s another side effect. So I remember that consultant psychiatrist told me that he knew of one patient who had to have surgery on his stomach because the constipation was so severe. So you see what these people go through with medication.

Mental health is a state of one’s being, whether it’s mentally or physically that comes about because somebody hasn’t got the full set of faculties or factors that can make them whole. And it can be, it can be like minor pockets of stress that cause somebody something, or it could be minor pockets of depression. Or it can be, you know, a complete chemical imbalance, where people are having paranoid thoughts. But there isn’t a state of wholeness, and thinking is, thinking is jagged or whatever. But, I mean, like to somebody who has mental health problems they don’t see that. I know that when my mum was experiencing mental health problems that was her reality, that was her truth, so it’s just about perceptions. And, -but it’s difficult when you’ve not been through it, or to understand it to not be judgemental.

Yeah?

And what I’ve experienced in working with other carers is all these factors, guilt, responsibility, judgements, you know. A lot of the carers who I’ve worked with have said, ‘oh he’s doing it on purpose, she’s doing it on purpose. And it’s like making them understand that most people don’t do things on purpose, it’s really meaningful for them, you know, that’s how they see that, that’s how they see the world at that point. Because I know my mum would never, never do anything to hurt anybody. So, -and maybe as a society we’re not so tolerant, you know, we have lots of medical models where somebody’s like slightly ill, but we’ll pump pills into them without looking at what’s the cause of this?

How do you find the cause of it do you think?

By talking to people, or understanding their position, trying to communicate to them, and trying to, you know, like I said to you each person is individual, and gearing your, one-to-one with them. But it is so difficult finding good workers, and, you know keeping workers, and having therapeutic models and, -My mum when she had mental health problems she was sectioned, she was locked away in a ward with other people with mental health problems for six months. There were no therapeutic, they didn’t do anything, no activities during the day, all they did was monitored her medication, nobody talked to her.

I don’t have any religious belief. Our family practices Chinese ancestor worship.

So for this case, did you pray?

Of course I did. We are old fashion Chinese, we pray. When my husband first became sick, we were seeking Chinese fortune tellers, different mediums. We had spent so much money. Friends were very supportive, lent us money to seek guidance from Chinese fortune tellers as far as in China.

What was it like? Can you share it with us?

If you believe it, you believe it. If you don’t believe it, you don’t. You are from Hong Kong?

Yes.

You go a Chinese fortune teller to perform divination to find out what has happened to the family and requested to perform the necessary actions to counter the bad things. It was all scams. I went everywhere to seek help. When someone told me someone somewhere can help, I would go and seek that help. But all was in vain.

If all was in vain, why did you keep seeking such help?

I wasn’t going to give up the hopes. It’s taking chances. You wanted him to recover, he is my husband and I didn’t want him to be like that for rest of his life. I wanted him to recover. When I was told such and such medicines are good, I went and bought them. When I was told which God was good, I went to pray that God. I’ve stopped in the last 2 years, I have no money.

Just to buy some hopes?

Yes, it’s a hope. If one is fine, of course you don’t believe it. But when you have problems, if people told you that rock can save you, you’ll go and worship that rock.

It was through my prayers and people’s prayers, you understand, it became obvious that this is not ordinary. It became so obvious I can -he who is a barrister that is doing away, his job was flourishing, he was making money, how? People were not concerned, how, how can this be happening, how? You know, people could not answer that kind of question. Until I challenge God ‘if you know actually I am serving you, if you know you are the God of Israel that the people talk about, if you know I’m not serving you in vain you must do something God, you must do something. Because now the hospital they’ve rejected him, everybody they’ve rejected, even my mother has rejected, ‘Lord you must speak to this situation, you must speak to this situation’ and he spoke to this situation till tomorrow. He didn’t go back to marijuana and he’s perfectly OK, he’s doing well. So mother has no give up, the mother did not give up. My father was not supportive financially because there are other children, you understand. He was not supportive. He’s not here now but he was not supportive because every family member well I know you think, it does not have cost to go back to smoking, but it was not his father’s fault. There was this spirit behind it telling him to go and do it, ‘go on do it, go on do it’, when he does it -he goes then.

Well, as we are a spirit, -we are human being but there’s a fight going on for the mind with the, you’ve heard of Satan and God, well it’s that way, -the mind. So this is sometime when people suffer from, -because people didn’t born with this sort of illness, some people, some doctors might say it come from a genetic form but it’s a spiritual illness, it’s the enemy try to controls your mind, it’s what going on out there in the world so it’s really spiritual and I see he’s going to church, he is calm, the Lord is taking control of him. So I’ll see him in the spiritual form. So going to church is really important, serving the Lord, living a Christian life, important. Taking care of your loved ones and yes, it might be hard but with God in the picture you have got a peace of mind because as a carer, not working and I got small amount of money for my caring role and I haven’t got any help otherwise, you know, and my husband benefit I have to look after him, take him out and so on, that is very hard but I’ve got a peace of mind because God is in my life and he provides for me, he provides for me so I just live by faith.

Well, with God you can go through any situation with the Lord, innit, you can have one hand and it’s still spiritual so with the, because I believe that doctors are here, the Lord put them here, so if a person is ill and they need a doctor help, yes, that’s fine and they need God also because there’s a creator and we have to acknowledge that. So on the other hand he has hope, he has hope. Hope, because human being can’t save us from what is going on in this world. So spiritually he’s on one hand and the other hand, that is why he can take his medication because before he wouldn’t want to take his medication but along going to church and telling him that ‘it’s good, you need your medication’, take his medication and it’s more peaceful.

Do you talk to the doctor about your spirituality?

Well, no. No, because when I get to the doctor I haven’t got time for that. The doctor’s got to see more patient so you just go and you explain your situation and he do the best he can and that’s it.

So I think, because in a way there’s this thing I just think, it’s hope, you need hope, you have to hope. And I am very, even though sometimes it makes me quite depressed because I think probably it won’t be for him, for his generation, but in a way I am hopeful, and that’s what keeps me going, that things are going to get better, or they are going to discover a tablet or.

A cure?

Well not even a cure, just something that people can function well with, whatever medication they take. Just to be able to function. And really even work, I don’t care now, if, -all I would like for him is to have a social life, a few friends, he can have a laugh and that’s all, and really that’s a basic for people really, you can do without work. So, in a way, at the moment I am feeling OK, but let’s say if in the next week or two he is not well, we are back to square one, and I am going down with him.

And I told you I went to that conference on schizophrenia, and that was extremely interesting, there was an American professor giving a, a talk about remission and what I came out with, of his lecture, was ‘if you are told the person you care for is stable, that’s not enough, that’s what he said, you’ve got to work towards remission. He said as well, obviously, that not everybody will achieve remission, but that’s where you have to work towards and you’ve got sort of their criteria for the psychiatrist to follow, and I’ve got the impression it’s something quite new, that not, -at the moment my impression is stable- that’s it. He is stable, he’s not in a crisis, we move on to the next one who is in a crisis.

I understand that they are overworked in the services, and when I say that, I don’t want to blame them, because I understand that they are overworked, but at the same time, what they need to know is that the person who is not well has got expectations, I mean higher expectations, and so has the carer. And so it made me feel better about it really, even though I don’t know how it, -because I know with my son, given the fact it’s negative symptoms mostly, what he suffers from, and there is no pill for that yet, so I don’t know how it’s going to help him.

So what was it like at first, in terms of your life story?

Simple, steady. There were difficulties but in everyone lives these come, that happens. It was nothing to worry about. When Mrs illness became worse and came out. If it was a medical illness then people can talk about it, but here it is mixed with medical so the difficulties got worse. But then as things happened, solutions then came, children were small and now they are bigger so the responsibilities started to lessen so now when I look back. I feel I am happier than before. Happier in the sense that I do not have to worry about money just to look after my Mrs’ health. I now know what her mood is and what she will do and if she does not have money with her she will become unhappy. If we give her money then she becomes happy. It does not matter if she spends it.