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Amar - Interview 01

Age at interview: 51
Brief Outline: Amar's mother got a schizophrenic disorder around the time the family moved from Kenya via India to England. Over forty years later, Amar is her mother's main carer, on top of a full time job and being a parent.
Background: Amar is a Social Worker and works as a Operational Manager of a family support centre. She is married and has a 17 year old son. She became a carer at age 9. Ethnic background: Sikh.

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Amar is from a Sikh family. She was born in Kenya where she spent her early childhood. After a year in India, the family came to Britain when Amar was nine years old. Around that time her mother got ill. Amar, being the eldest and being a girl, became responsible for looking after herself and her sister and brothers. She describes their childhood as unhappy, but that they worked as a team.

Amar felt that she and her family were stigmatised due to her mother's illness (she is suffering from a schizophrenic disorder). She says people's body language gave away negative attitudes, and that she was unable to marry someone from her community because of stigma. Today she describes herself as spiritual but not religious and she does not want to visit the Temple. She finds her community's attitude to mental illness hypocritical. Her mother, who is religious, doesn't go to the Temple either now, due to the attitudes of people there. 

When she married outside her own community, her family protested strongly. Amar studied social work as a mature student and started working. She moved to Portugal with her husband and two step-children, but returned to give birth to her son in Britain after 10 years of marriage. Having a son made it easier to be accepted back in her family. 

The full responsibility of caring for her mother gradually moved onto Amar. When her father died three years ago she has become the main carer. She feels that her siblings are not doing their bit. In fact, she says, they are not all fully accepting that their mother is ill. 

Being a qualified social worker with long working experience, Amar is today closely involved in the medical care of her mother. She often knows more than the health professionals about procedures, policies and practice.

Amar visits her mother before going to work every day. She makes sure her mother is dressed and has something to eat. If she is unwell, Amar will ring a few times from work, or take time off to be with her. After work she goes to her mother's to cook dinner, clean and do other housework. When she is finally home, it is late and she is tired. She doesn't have the energy or much time to socialise. She finds it hard to maintain friendships because of her caring responsibilities. Due to her responsibilities and her son being in college, she can't live with her husband, who is retired abroad.

Amar strongly believes in the value of caring, and this helps her during difficult periods. She also practices meditation and yoga, which she learnt as a child. When crisis hits, she sometimes uses counselling to get things of her chest and to sort out her thoughts. She thinks more such services should be available to carers. 

Amar doesn't know how long she can continue as her mother's carer. She is tired and dissatisfied with her situation and would like to change direction in her work life. She is also very worried about the impact the situation has on her own and her son's well being.

 

She thinks mental health issues should be part of the school curriculum.

She thinks mental health issues should be part of the school curriculum.

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I think raising awareness from schools as well, when they're learning about different life subjects and I don't know which subject they do that now. Making people aware that they look after the stresses and strain, manage their stress and if there are issues they seek help earlier, because, you know, these days life in the western world is fast and a fast pace of life affects people, tension, stress, illness, disease and if people will not look after themselves, they don't recognise, look after themselves with the support of others. They say one in four now, it might be more, it certainly feels it more, but awareness and education, easier access, people from different communities and different languages, also checking people are doing these things. It's all very well having money and workers, but you need to see what you are achieving, it is making a difference and people, service users and carers are involved in auditing organisations and that they are doing it and the people aren't doing' are having adverse effects, that they are dealt with, because it is making' bad impact on individual families lives, it goes on and on, it has a rippling effect.

 

Amar says people with mental health problems are not told of their rights to have assessments and...

Amar says people with mental health problems are not told of their rights to have assessments and...

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Yeah, and also information for the person with the illness in simpler forms and also yes, I know there is the various Acts and people have rights, but people are not always made aware of their rights and not always given the assessments, yeah? And I can illustrate from my mother's case, she may have seen a psychiatrist, or the CPN for 20 years -she didn't have a care plan, she had assessment, well she didn't know she had assessment, I didn't know as a carer and I worked in the profession some time. Yes, she had assessment nobody made us aware. She didn't have a care plan until recently, because of different Trusts and the different ways of working. Only now she is in the [name of health Trust], only now she's got a care plan and that care plan didn't even acknowledge me as the carer, even thought I pointed it out.

Do you find that it's'

I find that and because I work in that area and I teach and there's all these bad practices and, you know, clients and carers are not getting the deal they should be getting.

 

Amar's experiences have helped her to develop life skills and to do her job better.

Amar's experiences have helped her to develop life skills and to do her job better.

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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.

 

Amar has stopped going to a Temple because of people's attitudes to mental health problems.

Amar has stopped going to a Temple because of people's attitudes to mental health problems.

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Sikhism, in relation to other religions I am told, and it's written, it is a religion of equality. When it comes to mental health it is religion of discrimination, of inequality is my experience, might be different from others, but me and my family it is that. Still when we go to the temples you know -my mother is very religious, she's been brought up in a religious school education, all that and she's very religious- she has stopped going to the Temple, because people's negative attitudes, remarks, general bad treatment and I'm not going there anyway, no more, because I can't stand it.

Would you have gone if it hadn't been for that treatment?

I would have gone and followed my religion, but I'm not sadly.

Do you feel that the reaction within the community to your mother's illness has impacted on your religious path?

I get a better experience in my roles that I play at work, I have link to churches, I have link to different denomination, different religions, but my religion, my temples don't make me feel good. I feel better going to church, I have a better respect and treatment than I would going to one of mine. Sad to say that and I suppose I was na've to think all religious places should treat people well. But then again people are people, you can't change attitudes that easily and our temples are very, what is it, independent. Where the church is controlled from the top down, the temples they have a committee, a local committee and it's usually men, very rarely women, or people of different age, so where is the equality there?

Do you feel it's dominated by older men?

Yeah. Older men and men than women and yet people go on about it' Equality. I don't think so and if a woman was menstruating she can't go and pray behind our bible. I know this happens in other cultures as well, but that's one illustration, the other illustration is who controls it and what services they provide and they raise lots of money for whatever means and not to help the community, not for community support and I have seen nothing for mental health and I've been in a position to develop communities in my role. Obviously this is my experience, but it is more than the average person's, I have more of a birds eye view than the average person, isn't it?

 

After losing many friends, Amar is now selective about who she talks to.

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After losing many friends, Amar is now selective about who she talks to.

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No, people don't really generally want to listen to deep problems. I might have one or two friends, who might give me an ear once a while, but they don't want to be listening to the same saga again and again, you know.

And I suppose for you it is the same issues, because it's, you're in it all the time?

I'm in it all the time, you lose friends, you do lose, I have lost many friends. You make, I'm able to make friends easily, but to keep them… can't, because people don't want to hear some of the things and I'm not that sort of person, I'm not, some people have a tendency just talk about their negative life, or whatever, I try to be very selective.

 

Amar felt awful when she had to have her mother sectioned because her mother refused medication,...

Amar felt awful when she had to have her mother sectioned because her mother refused medication,...

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She refused to take medication and I wasn't strong enough to persuade her and she wouldn't take it anyway and in the end I had to have her sectioned, which was horrific, where they had to physically pick her up and take her, kicking and screaming.

How did that feel?

That felt awful. It felt terrible. However, when she got there she just did' like if she's come on a holiday and she treated the place, she sort of went back to work, she was, what she was doing was before, -she's a very regimented woman, she had a schedule and nobody can change it and that involves her self care, prayers, exercise and walks etc and she was walking in the park near drug addicts, alcoholics and if they say anything and she in her mental health, she would say things and I was always worried about her and she was letting people in, who she didn't know and then she went back to her work, who got rid of her, forced through the security system a few times, so a number of things were happening and she wasn't letting family in, the other kids.

 

Amar thinks more resources are needed to help people avoid getting mental health problems caused...

Amar thinks more resources are needed to help people avoid getting mental health problems caused...

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Just that these days, all over the world, in the western world, we're living longer than before and pace of life is fast with stresses and strains. And we don't always have the strength. When we are strong we can access information, some more easily than others, but we don't always have the strength to listen and look after ourselves and, you know, sooner or later -and it's happening already in health, people are getting conditions they were getting older and now they're getting younger, I mean… Mental health is the same. Children are getting mental health now more and more, we, here in this centre, we see children with all sorts of issues really and mental health is happening earlier and earlier, if…you weren't born with it, but it's quite easy that anybody can get it and yes, there are some resources and services, but very limited, long waiting lists, not easy to access. So there needs to be… Here, at the moment, speaking as a carer and there needs to be more to support, whether it's information or access, or talking to somebody, mainly, yes, information and talking to somebody. Information is good help, but talking is even more important, someone to sit and listen, or help you see things clearly, make you feel worthwhile and maybe assist you to, 'well what about this?' If this happens earlier then there is a less… opportunity for people to end up with mental disability, which is acquired in life later than they would have done.

 

Amar thinks the fast pace of Western life means we lose touch with the natural world and family...

Amar thinks the fast pace of Western life means we lose touch with the natural world and family...

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I have lived and worked in four continents, so I have the opportunity to experience different cultures at different pace, so hence I can speak that this is faster than the cultures I've lived. Although it was different times and yes, other cultures may have speeded up and thinking similar, however, some cultures are more in touch with the wider environment, the natural environment and family. And animals, whereas we're becoming more and more distanced from the natural environment, never mind our family, you know, away from our natural self. But the family is becoming a distant. I notice more of that when I went to live abroad, about 15 years ago, the family, -God where's the family gone, we're so distant, so dispersed and now it's just, nobody wants to know. You can't even look at somebody, we go on the bus or train, you daren't look at people, because people going to threaten you or do something and that's sad really and yet on the other hand, they say UK is a country where pets are loved a lot, animals are loved, but people, I don't know? And also some of the eastern ways of life, you know, how you listen to your body, look after and food as well now, oh I don't know, with beef and BSE and with animals and the bird flu, being a vegetarian versus meat eating and the impact on health, things coming. Yeah, maybe we need to listen and promote and learn from other cultures.

 

Amar thinks statutory services need to be easier to access in a crisis.

Amar thinks statutory services need to be easier to access in a crisis.

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You know, I've had to seek help many a time, I don't just keep, kept like this by my positive thinking and diet and exercise and meditation, but also every now and then I have to go for counselling and when I have big crises I have to seek' and then I can never get it when I want it, it's always six months later, when I don't need it and then I've got it, by that time I've learned to cope.

There needs to be easy access, simpler, you know, more resources that people can access it when they do need it, not months and years later and also more awareness on whatever illness somebody's trying to look after in a more simpler format, what it is and what they could do. But it's all easily said, but when you're in it, although I know how to access more, I have the knowledge, I've experience looking after mentally ill people in my role, it's never easy when it's your own, because you have that power dynamics and attachment.

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