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Mental health: ethnic minority carers’ experiences

Working life and life opportunities

Carers of people with a mental health problem often find that life doesn't turn out the way they had expected or dreamt about. Because of the needs and demands of caring, there are things carers don't do, or do differently. For instance, some people work less, give up work or take early retirement. Others delay or avoid marriage and having children. Even if caring also gives new opportunities for learning, many can't be as active as they would like. Social life can change, and some people talk about a lack of friendships and relationships (see 'Children, family and social life'). Caring has personal, financial and social consequences for the carer. Some feel unhappy with their lot, or that life is 'on hold'.

How caring affects work and finances
Work was often mentioned when people discussed the opportunities they had lost or gained by being a carer. Several people who are working in social care or mental health said that their experience as a carer motivated their job choice. Others talked about the difficulties in juggling work and caring, and many of these people had decided to stop working. Having a flexible employer helped one carer keep working, while another said that the lack of understanding from her employer was partly why she gave up her job.

 

Working while caring became so stressful that Emily gave up her job.

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Age at interview: 36
Sex: Female
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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.

After giving up work or reducing working hours, some missed their former colleagues, working life or the position they held at work. Others felt better because of reduced stress and because they could spend more time caring and providing better care.

 

Spending more time at home means Kiran can care better for his wife (recording in Gujarati).

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Age at interview: 55
Sex: Male
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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.

 
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Miriam has turned down opportunities for promotion because she doesn't want the added stress.

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Age at interview: 51
Sex: Female
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I mean, there's so many opportunities came in the form of moving on in my own professional development, but then -I didn't want to because you don't want to put yourself at risk if things go wrong and how are you going to deal with it and maybe everyday stress and, and because I know so many people always ask me, they always say, 'Oh you use your son for an excuse all the time', you know, because maybe there is some managerial post or something and they say, oh, and I say 'no'. And they always say, 'you always say that', but you have to put things behind you at time, but I can't, you know, because you don't want to put too much stress at work again, when you know that home is the same. So -that's one of the difficulties.

 

Marcy gave up work to care for her husband and says it had financial and social cost.

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Age at interview: 72
Sex: Female
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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.

Another carer couldn't continue her career when she moved to the UK, and being a carer can make immigration even harder than usual.

 
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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.

Being on benefits or not working full time reduces income and can make it hard to make ends meet. People talked about not being able to afford the car, house, food or holiday they wanted, and some couldn't even visit their family abroad. Some had not been able to give their children the education they wanted to, and one carer had great difficulty paying for the treatment of his sons when they lived in the US.

Other carers take unpaid time off to, for example go to hospital ward rounds, which are usually held during working hours. Some carers who don't work or never worked were affected financially when illness forced their partner to give up work. Going onto benefits after having been self-sufficient can be difficult, and people described applying for benefits as complicated and even humiliating (see 'Support from carers services').

 

When Anne's husband stopped working he felt bad and life changed for the family.

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Age at interview: 40
Sex: Female
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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.

Life opportunities and feeling free

Negative attitudes towards mental health problems can affect carers' life opportunities. Two women we talked to said that people's attitudes had made getting married and having children difficult. Amar, who grew up as a Sikh, had not been able to marry within her own community. When she married outside it, her family cut her off for many years. Angela, who is from Nigeria, could not marry until her brother's health improved when she was 37. This was also when she could move to the UK. In her culture it is seen as shameful for a woman not to have children, so when Angela finally gave birth aged 42 she was extremely relieved and happy. 

 

Mental health stigma meant Angela did not marry and start a family when she wanted, leading to...

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Age at interview: 42
Sex: Female
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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.

Another carer had made the difficult decision not to have children because she and her husband didn't want to raise a family while on benefits.

Losing some of their personal freedom was difficult for many carers. These carers could not be as social or active as they would have liked. Some found it difficult to keep in touch with family and friends. Some didn't feel like going out to socialise - they felt they couldn't enjoy themselves if the person they cared for might suffer as a consequence.

 

Being a carer limits what Anton can do, but he believes in putting his mother first.

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Age at interview: 63
Sex: Male
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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.

 
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Ramambhai feels that leaving his wife with others would have a negative effect on her so he...

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Age at interview: 62
Sex: Male
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They came and said if you want to go to the pub or with a friend. But, one thing I raised in my mind. If I left her alone in the home and went to drink beer to enjoy myself for four hours, right? The one psychological effect will happen to a person, look I will explain' if you get someone else to look after your wife, she doesn't like it. She will think, 'My husband is out having a good time and someone else is looking after me in the home'. She is going to realise and sense that. Right? If I do this, it will have more an effect on her. All these years when we have gone on holiday I have never gone alone. Even when I go to the pub for a drink I go with my son-in-law. Before I used to go with my friend when I was working, used to drink for an hour then left. Right now if I want to go every couple of months, my son-in-law comes and my daughter is in the house, so it's ok. However, if I call someone to help from carer support then instead of improving she will worsen. If I am capable of doing this, then going outside or a beer is not more important than my wife. I will give an example. Today, if your husband went out to have a good time and you are well then it is going to affect your mind and look- why is this happening? You are going to say, 'I am sitting at home and he is out having a good time'. Then the next day, you will make him sit in the house and you will go out to have a good time. This will not feel fine to you either. So I sat and thought about it with a long term perspective. I said this is not right, I am at home, there is no need to go out. It does not make any difference.

Opportunities at home can also be affected by caring, for example, not being able to relax, sleep in or 'potter around' at home was described as frustrating. Others said they couldn't go places on their own, that they couldn't go on courses, go for walks or be impulsive. One woman had depended on her husband's English skills and ability to drive, and now she feels isolated and as if 'everything is gone'.

 

Since Wei's husband got ill, they have little money and are socially isolated (recording in...

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Age at interview: 61
Sex: Female
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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.

 
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Rani feels restricted in what she can do because she needs to be with her husband.

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Age at interview: 62
Sex: Female
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I can't go anywhere or to any party and I can't go anywhere for shopping. Whenever he goes I also go with him. Sometimes my brother comes and I go with him for grocery shopping in the week. Sometimes we'll both go or sometimes I'll go alone, I never go far. That's been happening for two years, they diagnosed him and they said he needs somebody. He's not working.

Did he leave his job?

The doctor signed him off sick. He had gastric problems before but after he came home he was diagnosed with depression.

Many carers find it difficult to plan for their own future or career as they always need to “be on the alert” in case something happens and they need to “pick up the pieces”. Caring responsibilities interrupted some carers' education and learning. Some people we talked to had tried to break out of this situation. Some had decided to leave the country for a while - a difficult decision. Some found on returning that 'not much had changed' (see 'Getting the balance right').

While some carers believe it is important to care for yourself, many carers prioritise the needs of the person they care for over their own, saying “they come first”. This is often out of love and commitment to their family and as a cultural or religious duty. Some feel they have to wait until the person they care for is better before focusing on themselves. To some extent, 'life is on hold' and caring duties mean that little time is left for themselves. One woman even described it as 'not real life'.

 

When life revolves around being a carer it may seem like a 'pretend' life.

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Age at interview: 72
Sex: Female
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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.

New opportunities for learning
Despite the constraints of caring, most carers say their experience had in some ways provided opportunities and helped them grow as a person. People talked about how the 'school of life' had taught them better coping skills and about being better grounded. Some said the experience had improved their human qualities such as patience, compassion, understanding, empathy, humility and giving them better awareness of other people. Some felt stronger and better able to help others (voluntarily or professionally) and had learnt to be creative in constrained circumstances. People felt good when they could help other carers, and meeting 'new and wonderful people' had enabled carers to learn from, and help each other. Some had become active in carers' organisations and campaigned for change in mental health services.

 

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

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Age at interview: 51
Sex: Female
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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.

While some thought that caring makes you a stronger or better person, others didn't believe that the hardship of caring is necessary for you to grow as a person.

 

Marcie does not think hardship is necessary to grow as a person.

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Age at interview: 72
Sex: Female
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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.


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Last reviewed September 2018.

Last updated November 2010.

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