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Aiko - Interview 17

Brief Outline: Aiko has been caring for her husband who suffers from complex post traumatic stress syndrome, bi-polar disorder and severe depression for seven years. She believes mental health services should address the needs of the whole family.
Background: Aiko came to the UK in 2000 to be with her husband Jim. She has been unable to continue her career in design and training and is now a full time carer. Ethnic background: Japanese.

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Originally from Japan, Aiko is in her late 30s and she cares for her husband, Jim, who is suffering from complex post traumatic stress syndrome, bi-polar disorder and severe depression.

Aiko met her husband when he was working in Japan. They married after she came to the UK in 2000. Aiko did not know that Jim had mental health problems until he suffered a nervous breakdown a year later. Jim had to give up his demanding job as an IT consultant, and at the same time they were subject to racial abuse in their neighbourhood (Jim is of mixed heritage). Although the stress contributed to Jim's conditions, today Aiko thinks that his problematic childhood, which she has gradually learnt more about, was the root cause. She feels that if these problems had been addressed early on, Jim may have been in much better health today. At the time, however, little help was offered, and Jim had even been told by a psychiatrist that 'nothing is wrong with you'.

Having just arrived in a new country and not knowing the culture or the health and social care system, Aiko initially struggled in her role as carer. She didn't feel she received much help from professionals and things were not explained to her. For example, the difference between Japanese and UK culture meant it took her a long time to understand what patient confidentiality means here, and she felt hurt and confused by being excluded from discussions between her husband and health professionals. In fact, Jim really wanted to have her present, but his wish was not always granted. Aiko now understands the UK system, but she thinks the lack of input from carers sometimes leads to decisions being made on basis of inadequate information. She believes mental health services should address the needs of the whole family.

Aiko gave up a thriving career in Japan. When she arrived in the UK she was unable to get jobs which matched her experience. As Jim's problems became worse, Aiko gave up working and became a full time carer. Aiko says her own life was put on hold for a number of years as she dealt with crisis after crisis. She was unable to spend energy on building a social network, and she was, at times, feeling isolated and lonely. She has chosen not to tell her family back in Japan about Jim's situation, as she wants to protect them from worrying about her.

The situation has taken its toll on Aiko and she has suffered from depression over the last year. She feels things are getting better now with medication and with getting involved with a local carers group. She feels that she has finally found a service that is right for her, and she is also enjoying working as a volunteer to help other carers and people with mental health problems. As Jim is also stable now, she says it is time to look to the future and to rebuild their lives.

 

Aiko was reluctant to take medication for her own depression.

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Aiko was reluctant to take medication for her own depression.

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But one thing, I wasn't very happy with the decision the doctor make with any patient when they come to see them, here's tablet. Because obviously, “You're crying in front of me, and the stories what you told me is obviously you're a depressed person, take this, try some”. But I wasn't in denial, just I wasn't, -how can I say- I wasn't ready, and I thought I don't need two people being, -taking antidepressant in my household, and I didn't know how the medication would affect me. But because so many years I put myself on the side and focused on, about my husband, although it was related to our life together, so much things I had to deal with, and I completely forgot about my health, well being.

 

Continuing a career in a different country is hard, and she thinks being a carer made it even...

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Continuing a career in a different country is hard, and she thinks being a carer made it even...

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I chose to come this country, and that was big challenge for me. How can I say, it could be, probably normal, or very common things for European people, because they tend to mix up and come across each other very often. But when an oriental person moves to this country, and are starting a career, it's still not an easy thing to do. And it's like I, just like I'm any other, -any nationality, people, foreigners come to this country, start a new career, it can be very hard. But that was the foundation I tried to start up from learning English, to improve my language skills, and the meeting of other people, and using my, previous -my career. But then when I registered with my local job agent, what they could offer me was something like office cleaning, or some security or-. At least I would expected to have a been a secretary or receptionist, but none of those office working condition wasn't then available. Because, - simply because my CV wasn't accepted very well, because all it's placed in a different country, and so that could have been done in a different way. Maybe if I wasn't becoming a carer, maybe I would more have struggled in that way to get my career.

 

Carers should be given priority for adequate housing.

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Carers should be given priority for adequate housing.

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Carers who live with their caree should be able to have their own space indoors. Two bedrooms priority should be available (the law does not give it at present). It will give us a space of peace, safety and relaxation. Many carers own their homes, but also, many of us don't. 

 

Having been hurt, she wants to take time to form new friendships.

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Having been hurt, she wants to take time to form new friendships.

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So I, rather do the same way to chose, to take time, and then chose who to be with, it's kind of probably my self protection not to get hurt, but it works with me OK. Instead of having many, many friends, and a superficial relationship around me, I will then have one good friend. And although I don't have real, real friends, or close friends here, the support worker an offer me friendship, if I needed to cry on her shoulder, and she always offer that for me. But I'm not that desperate, I think I, -like the friendship, I would rather take time, instead of rushing to make those things for myself. And I am OK to, -yeah OK, I'm not coping very well, but I would rather take time, even having isolation sometimes, my target is somewhere far down my future, in the future. To reach the point I would rather make, one step forward instead of unstable lifestyle, and bounced around between A to B, or losing a friend, or make the new friends. For a short while I'm happy, but then the next second I'm crying, I don't want to have that kind of lifestyle. But maybe I'm too strict to myself.

 

Doing voluntary work rather than other activities means Aiko can use her job skills.

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Doing voluntary work rather than other activities means Aiko can use her job skills.

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And since I started taking antidepressant, I'm a bit more me, I feel me, -being reasonably confident, although I am not very confident to deal with mental health issues. I found one place I can actually enjoy doing things is the working with the support worker, with this service, the amount of help I got, I received, I'm trying to feed it back to this service, and to share with other carers. And especially I do some voluntary work for BME community, that makes me feel worth for myself, and I can see me, what I'm doing, that environment, so semi formal. But it links to my previous career working with, as a team, and lots of different people come to sit at the table, and making a discussion, and having brainstorms, and trying to improve the situation by team. I found I really do enjoy it. Although it's not something you can say hobby, or fun thing to do, but I would rather do it instead of going to gym, or swimming pool, or having social time, because again another problem is about friendship, it's a bit difficult if you are in the situation.

 

Aiko says that in Japanese culture you put yourself aside to care for those who are vulnerable.

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Aiko says that in Japanese culture you put yourself aside to care for those who are vulnerable.

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I know in Japan, so I really don't know, but I only know one example as my grandparents. When I, when my grandfather had cancer he had a big operation, my grand mum, at the time she had really dodgy legs, and her knees weren't that well at the time. In her late 60s, from her, although they both lived in central Tokyo, my grandfather was in hospital more than six month, and it took about, one way to get to the hospital from my grandmother's home, to go, -about one hour. Because included quite a long walking distance, and my grandmother couldn't afford taking taxi every day at the time, but she visited my grandfather absolutely every single day, no break whatsoever. I think that is in the blood I think. But a different generation began to act different way. Around my generation still we do have that attitude, if you're married, if you have child, or children, or someone to look after we don't put our self before anybody else. We do the opposite, put our self on the side, your first priority is to whomever's most vulnerable, and then the next is about you, which doesn't come up to surface very often. But I didn't force myself to do that I don't think, no, if so probably I wouldn't be here.

 

Aiko thinks services should be more open minded and listen to people from different cultures.

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Aiko thinks services should be more open minded and listen to people from different cultures.

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I am not sure. If service providers had some cultural awareness training this might be beneficial for all of us to communicate better. I never actually expected to, -this society to fully understand about my culture, because the Japanese are such uncommon people. But I would expect people to be more open minded instead of, like -how can I say- the professionals have some training's, and then their book taught to them one to Z, A to Z. And I don't know there's A to Z, but if they can be a more, just a bit open mind, and try to listen to what I'm saying, and the real meanings behind, I think we can have a better communication. But often I found out they have a shutter in front of their face, and the things becomes complicated, or if they cannot understand, or pick up those word from their own dictionary for example, they tended to just, -and stop listening to you. That point I found it could be because of the, there's a cultural, -lack of awareness to each other, I don't mean because I am Japanese, they don't understand. It's not just the nationality I think it would be the same way to everybody, yeah.

 

Aiko has decided not to tell her parents in Japan just yet about her husband's illness.

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Aiko has decided not to tell her parents in Japan just yet about her husband's illness.

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I have the feeling, and I am confident, just -I don't want to do it just yet, because I know if I do, then my parents will worry every day to death. And they won't understand how the life, -I was going through in the past, crisis every day happening, Jim just smash things, and start screaming, or go missing, and calling police every second. Those are things, I don't think my parents should know about it, I really don't, especially my mum, she just will get panicked, and if they become unwell because I told them what we got, and then that will reflect me as well, so I tried to avoid those things. Minimise any concerns, but I don't know I'm doing right or not just I feel that is comfortable for myself.

 

Aiko only learnt about her new husband's mental health problems after she moved to the UK.

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Aiko only learnt about her new husband's mental health problems after she moved to the UK.

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Before I became a carer I was living in Japan. I had a career, really enjoyable career. I met Jim in Japan while he was working in Japan and we decided to be together, but that was followed by two years of separation. We had to sort out our, -well life, to get together. But at the time I didn't realise, or I didn't notice any signs of Jim's mental health issues. But when I moved to UK in 2000, it didn't take very long me to realise some signs of his depression and rage, and difficulties to deal with other people. I thought it could have been just to happen to anybody and I didn't realise that it could be named as mental health problems. I just thought it's just his personality and, maybe he's very sensitive to stress. We married a year later. And then shortly after that he had a nervous breakdown, really bad one. That happened in where we used to live. And since then Jim had to take quite a long off sick period and in the end he was redundant. And things got really worse and our life was almost like -in a jet coaster, and we were just carrying on to going down, down, down the slope. And then we eventually decided to move away from because when Jim had a nervous breakdown that was triggered by his work stress, having me around, and also we had to deal with a lot of racial harassment by local youths. So we decided to come down to live here. But still we, -I wasn't identified as a carer at the time. Jim as a bit refusal to see doctor but then things didn't stop to escalate. And about year later from the point Jim finally sought some support from GP, and still from the point it took a further one year, me to be identified as a carer. But I had no idea what carers means at the time, and then what I can do to support Jim, just, but I was so determined to take our life back together because that was almost like a, how can I say? Crisis all over the world, and then we didn't have settlement life in marriage, all started all together. So it's just about -before, around the time when I became a carer.

 

Patient confidentiality needs to be explained to people who are new to the UK and patients should...

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Patient confidentiality needs to be explained to people who are new to the UK and patients should...

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Too many local authority staff did not recognised about carer at all. Our GP has been always helpful and understanding but mostly I felt useless and being pushed around by the previous psychiatrist and his team. They did not want me to get involved even when my husband asked for this. 

That's the, and I still have question about this individuality in this country. Although I understand it's very important, and also patient confidentiality, that is fine as long as it's being explained at the beginning, but nobody did it. It's like, because people talk about the confidentiality and the individual reason, when you first visit your doctor they don't talk about it, you just carry on naturally. So whoever comes with the main patient, carers will be shut out, they would be shut out, and that happened quite a few times to me. And I actually raised a complaint a lot of the times because Jim never refused me to go in into the room, and, -but doctors think, because this is confidential, this is about Jim's problem, I don't need to be with him. And then they wanted to hear stories from Jim but he wasn't at a stage to be able to talk. So I couldn't understand why I had to be separated from him. And they never explained it to me, reasons, “oh, this is the country, this country goes this way because this is patient confidentiality”, that's it, no further explanation, reasons are given, -how can I say? Yeah, Jim was never actually asked “would you prefer Aiko to be here, if, are you OK”, sort of thing, nothing. And actually one psychologist, when Jim was allocated talking therapy in 2002, Jim really forced him to ask the question, “Doctor, can I take my wife with me into the meeting room? And this female psychologist said, “I don't think so”. That was it. He asked but she said, “I don't think so”. And Jim was completely put off by the word and he lost the confident asking the same question, -never again. It was a really terrible experience. And still nowadays, the situation is getting better but still some professionals do prefer to treat individually, which I can understand, but I think those things should be questioned before starting any treatment otherwise you will miss opportunity for the real stories from carer. And if patient, mentally ill people is not able to talk about it themselves, nobody can treat them.

 

The information Aiko got came late, and without any guidance or direction.

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The information Aiko got came late, and without any guidance or direction.

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An agent at the Trust mentioned about me being a carer first and a local organisation also explained to me about 'carer' but out situation did not move on. The local authority did not recognised 'carer' at all.

I struggled a lot to find the right information for myself' about carers and mental illness, what kind of support we could have etc. Also, I needed a clear guidance about benefit system which I was sent from one place to another (many times) by the local authority. At that time, the local Carers Support Service was not functioning like now - I was given information pack (more than a year after my husband fell ill) which was a good selection of useful organisations and contact details, but I had no idea which would be suitable. It is almost impossible for any carers to go around to find information by themselves when the person they care for are in crisis. Many telephone numbers, organisations, booklets or websites etc. etc. -It is too much, it is information but they do not give you a clear guidance or direction.

 

Aiko was helped by a support worker and searched the internet to understand what 'carer' meant.

Aiko was helped by a support worker and searched the internet to understand what 'carer' meant.

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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.

 

Others may not understand that she can't take breaks if it puts her husband at risk.

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Others may not understand that she can't take breaks if it puts her husband at risk.

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People often said to me “You should have your own time, don't neglect yourself, why don't you have a bit, time away from him”. But that is only possible to do if he is stable, but because I'm only one carer in the household, if he is not well I can't leave him alone. This point is not very well taken into account, still some people say, just leave him, and if anything happens after you leave home, that's it you have to, from that point you have to take the situation. But I can't really do that, because simply, -OK I went out for a day out with other carers, I had a good enjoyment, but then coming back home, -if he ended up killing himself, that's not something you can say. You had time off, and coming to see something, -the worse situation, I don't think that's the case at all. That's why I'm saying about the family support is also very important. Those circumstances should be taken into account by professionals, if the carer is living with mentally ill people, and if the household is a very small number of people, then that should be taken into account. And you can't just keep suggesting to carers, taking time off. Offering is one thing, but also understanding the circumstances is important I think.

 

Aiko thinks stress at work was the trigger for her husband's mental health problems, but that a...

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Aiko thinks stress at work was the trigger for her husband's mental health problems, but that a...

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Dysfunctional family background, physical and psychological damage in childhood, living environment, lack of support from family and school.

At the beginning I thought Jim was just stressed because of the pressure at work. He didn't have a good employer who was a bully. And Jim was a very determined, also he wasn't giving up to get better salary. Although Jim was working as an IT developer, and he was getting reasonable salary at the time, -very hard, I hardly ever seen him at home. He as always away, almost like living together but I only see him at the weekends for a few hours, if he's at home he was always sleeping. So I thought, try to get the better life created a lot of stress for him and the pressure. I thought that was the reasons for him to have the depression. But when Jim was beginning to tell me history about himself, since he was little, I didn't realise he was actually from dysfunctional family. His mum, -he's got problems with his mum and dad, and the grandparents, and all over family backgrounds, his upbringing, bullied at school, racial issues, harassment, those, -everything I think created a long history of his mental health problems. So when I, -so Jim had the nervous breakdown, that was a very, very superficial things, really tip of iceberg. But actually there was a massive, massive discovery since then. So it wasn't just stress at the work, actually Jim had reasons to feel depressed and traumatised by his experience in the past. But those things aren't talked through by GP or psychiatrist at early stage. Now, just these days it beginning to happen, but especially his psychiatrist was very reluctant to help or treat Jim. So the causes were sort of like, “oh, it's Jim's upbringing”, well so what? Kind of like, “oh, everybody's children in this country can have that kind of a problems, single parent is such a popular issues, nothing unusual, it's common problems so.

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