So while he was on his medication and like if I’m at work he would have phoned me and said when am I coming home and I would ask him if had eaten and he had said no, so I became more stressful. Working and trying to care for my husband. So during that time my boss and I, -is like she could not understand my situation so while she would want me to work more I would have back out a bit because of my situation and caring for my husband. So then now I could not cope with the job that I was doing and, because I was doing cleaning at the time. So I had to back out then I was with my husband and then he has papers to sort out, change of circumstances because he’s on the benefit.

If someone had taken care of her, then I would not have known what was going on in my own home but because I am at home, with her for 24 hours a lot more, we get to know a lot more about things.

In this experience, through your life, have you lost or gained opportunities?

I have not lost opportunities it is the way it is.

Some people who have the responsibility for caring say we gained opportunities in different ways to others, how do you feel? Do you see it as an opportunity or loss?

Not an opportunity lost but a gain.

In what way?

Because I have come to know a lot more about the workings of my own home (sansar) since I am at home. Before I was at work for eight hours and at weekends going out, did not know what was going on at home. If we live at home continuously so I have had the opportunity how to live with your wife, how to take care of her, what to do, so now I have come to know. If someone like carers were taking care of her, and I would have worked, then she would not have improved.

And spending two weeks, two whole weeks with Larry, everyday, every minute of the day with him, I did realise then that he was far more advanced than I had thought previously. Because I was out at work all day long and I used to leave him lunch and so on, and he used to, sort of, I don’t know what he used to do but, I suppose wander around, or whatever. But being together then I realised how far more advanced the Alzheimer actually was. Because he was very paranoid and quite difficult to be with. And the memory was really quite bad then, worse than I thought, in fact. So when we came back, I decided to give up my job, because I was worried about leaving him on his own all day long. Which, in due time, I did. And of course there are costs. There are social costs, because I lost contact with all the people I worked -you know. And, of course, money, there is that cost. And there is also, because I like my job so much, there was the loss of some -of an activity which you really wanted to do and you didn’t really particularly want to give up at that point in time. So there was a big loss there.

Also when your life changes so much because when somebody’s ill for long term, -you lose your finances. He lost his job, which has a major impact on him as a male. He’s always worked all his life. Never been on benefits. Was really, really down on himself for being on benefits, – and, you know, so your whole life changes. And you can’t have the holidays that perhaps you would have if you were with somebody that was healthy. You can’t have the car you wanted. You can’t have the house you wanted, you know. You can’t buy the food you want. You can’t go out. You can’t just think, ‘Oh I’ll just go out for a meal or, I’ll go to the pictures’, or something, because you haven’t got the money. So it completely affects your whole life.

But it did affect me, I was ashamed, you know, that how can, how can I bring a husband to my family. And the family that they already know that he’s, that the eldest brother is colou, that’s the language they use, they say colou.

Colou?

Yeah that, they, they say colou, colouranki, he’s colou.

And that means?

That’s mad, do you want to go, ‘Oh you don’t know. That girl is a very nice girl, she’s very good but he has desperate eyes’ -whatever. I got married at age 37. – 37 after waiting, you know, I was ashamed that I can be mentioned with that kind of ugly name, so I was now waiting, waiting on the Lord. People were laughing at me, they were mocking at me, ‘Look at you, Dede’, that is old woman, ‘Mummy Jesus, old woman, she refuse to marry. We will see actually is going to eventually marry.

So that’s how my husband came all the way from America, just came just like that miraculously and I got married. As if that was not enough, did he deserve at my wedding somebody said that, ‘Marry, this old woman?. This was the day I got married, I was 37. This old woman, well this one say, ‘Will she ever have a child again?’ It’s not about marrying, it’s actually about getting my, – it’s by when you get married definitely there must be a production. ‘Will this one ever produce a kid’, that one told my husband, – Oh, do you know that one cost me another five years? So I was there, baby didn’t come, I was waiting for a baby.

And when your daughter was born, how did that feel?

Oh my God. Oh my God, I don’t know what to say. I was just weeping. When they gave me the baby in the, in the maternity ward, when they gave her to me like this, I just sat there weeping. I was just weeping tears, tears of joy were just coming out from my face. I just wept, I said, ‘God, thank you Lord. Thank you Lord. Thank you Lord. I was just saying, ‘Thank you Lord, thank you Lord. I was repeating it over and over. Tears coming out from my eyes. A gift all that the Lord gave me.

Oh, there are many things I can’t do, like for example there are so many seminars, which I like to attend, like what I said to you, Ruskin College Oxford, so many, so many things. I can’t go away on a teaching, like, a thing, like going along and spending a few days somewhere residential -making stained glass windows and everything. So those things I can’t do, like -because I’ve got to get back home every, night. And then sometimes one of my friends will say, ‘Oh let’s do this, let’s go up to Inverness’, or something like that, ‘Let’s do some’ – what do you call – ‘Go on a lifeboat and wander round. So those I can’t do, yeah. So that, I gave up certain things, so I’m afraid, one of these things, but I would tend to think if I was ill my mum would do the same thing, you know, so you always tend to think. But at the same time -well would I really be happy, say if she was suffering and neglected and lonely my, enjoying myself? You know. So now I seem to know the heart of a father and a mother, after doing a bit of caring, otherwise one can easily become selfish, and think about your happiness, you, you, you, you, or me, me, me, you know, one can get away with it, one could get into that sort of a thing. But my being brought up in a Christian faith, I tend to think the grammar, like CS Lewis, ‘God first, other, others second, and me third’, yeah. So the Christian upbringing, the compassion, caring, God’s love, the Christian that was a great help, yeah.

It was when he got this illness. He did not have it when he was a young man. When I married him, he was very hard working. He was never sick. He was always working when he was in Hong Kong. We went to Hong Kong and lived there for few years. When we arrived in England, he was learning English. He could drive. He was learning so much, had his driving licence. Once he became sick, everything was gone. His English has gone.

What was the toughest thing? Money problem. He smokes a lot, 2 packs a day, used all the money. Now the children are all grown up and working. When we want to go on holidays, they will give some money. Last 2 years, recent years, it’s been better having this centre. The social service has this service that you can get £350 every 3 years for holiday money. I want to apply this year but was told they have no money this year, so can’t get it. I was hoping to see my mum in China. She is old, almost 90 years old. Maybe I go next year. It would help if some contribution make towards the flight ticket, it would be easier. Yes, yes, then I’ll have little bit extra spending money.

People say, oh you get used to anything in life, you do, but, ah, there is, deep down, the knowledge that this is not really, -neither the life you would have chosen for yourself and it’s not really real life, actually. You pretend. I spoke to a lady once who lost her husband. He had vascular dementia and I got to know her a little bit at meetings and then I saw her and I asked her about the husband because I didn’t know and he had died. And I did ask her, I said, oh I said, oh I’m so sorry about it but I said, do you miss him? And she said, do you know what? She says, when he died, she said, I did realise then that we had pretended all the time that we were living the life, so we had kept to a kind of routine and trying to make believe that life was going on as it had been before. But, she said, it wasn’t really real life, we had pretended, we had this sort of make believe. And that’s what it is, you make believe everything is OK. You know, people ask you, oh how are you? And I always say, oh fine, we are managing. Because truly I have found that very few people want to hear that you are in pain. Because they don’t want to, by acknowledging your pain they would have to take it on board themselves and they don’t, they don’t really want to hear that. They want to hear that everything was OK and yes, you’re managing and that’s good enough for them and, you know, fine. So you learn to pretend, quite a lot, unfortunately.

Well certainly it helped me develop skills earlier, life skills earlier than I would have wanted to, which helped me survive over the years. The different challenges I’ve had to face and yes, I wouldn’t come in this social care if I didn’t have a life experience in caring for the family I come from and the family that I’ve married, they did give me some grounding and it certainly, -because I have to link and liaise with others it’s helped me network better, as an individual, as a professional and now I am using some of my experience to raise people’s awareness, like now and other times before and on courses and on mapping services and on research for people who are in mental health hospitals. And also I’ve done, sat on various policy groups looking at the CPN, how they’ve got that integrated as well, I might not have got to some of those places, it sort of helped. Yes and I wanted, I want to acknowledge, yes, it did give me some experience, knowledge and skills, however it did take a lot away as well and I want to be able to use whatever. I can positively to help others really, whether they find out on the internet, or going to places, or learning about things whatever.

Well, I’m one of those people that, maybe wrongly, this is my personal view, I don’t believe that hardship and suffering necessarily make you a better person. I don’t believe in that. I’m not saying they’ve made me a worse person, but I don’t believe in all these, some people go into it as sentimental, oh I wouldn’t have missed it for the world because I’ve learned so much. Well I would have missed Larry’s Alzheimer’s very nicely if I could have done. I remember reading in the newsletter by the Alzheimer Society this guy who, he described his life with his wife before she died, and then he said, ‘Oh I wouldn’t have missed it for the world. Well, I would. Because I think this ten years I could have done fantastic things. And I could have learned some, an awful lot. And I could have been with my grandchildren, I could have visited my sister who is not very well, you know, she’s a little bit older than me. And so I’ positive things; I’ve met some lovely people. And you do learn from them. And maybe I have learned -the thing that is positive, maybe I have learned to be creative with my time in very confined circumstances. This is the most positive thing. But I don’t believe that my life has been enhanced by Larry’s disease. First of all because I don’t like seeing him the way he is suffering, possibly suffering. Even if he does not suffer physically he is suffering deprivation because he hasn’t got his life really, basically. So I don’t feel that that makes me good. I don’t believe in that, I’m sorry, but that is my personal view.