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Mental health: ethnic minority carers’ experiences

Children, family and social life

Mental health problems can easily affect a person's children and other members of the family. Friendships and social life in general may also be affected. Family dynamics are particularly affected when carers live in the same household as the person who is unwell, whether as a nuclear family (parents and children) or an extended family (where several generations share the same home). Some carers can get on with their social life without too much trouble, but friendships may change and social life can be difficult to combine with the instability, 'crisis and drama' of caring.

Children
Understandably, many carers are particularly concerned about how mental health problems in the family affect children. It can frighten young children to see adults change or behave in unusual ways. Many of the carers with children commented that children in families affected by mental health problems don't get enough support.

 

Anne's two daughters reacted differently when she explained her husband's mental health problems...

Anne's two daughters reacted differently when she explained her husband's mental health problems...

Age at interview: 40
Sex: Female
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Well I've got two daughters and they're both very different personalities, just like we all are. So one can take things much better, can let things sort of wash over her head more, and the other one is very emotional, sort of -in a drama queen sort of, so that's been very draining as well. And to try and explain to two teenage girls that somebody that they really looked up to, that was really strong, that used to go on long walks in the countryside and that, is now literally a shivering wreck in the corner, they cannot understand it. We struggle to understand it as adults, so children, it's really, really scary. And I've just tried to explain, you know, that he's poorly in his mind as well, and it's, so he can't think properly. Like, when we wake up we think, -although we don't realise it, we actually think, 'All right I'll get up or, I need to go to the toilet, I'll brush my teeth, oh I think I'll wear this red dress today or, oh yes must get some milk before I get out', but when you can't think properly, it's all a juggle so you can't put anything together. So you can't even get out the bed or think to get dressed or, the next stage of, so, -but I would say they've been hurt a lot by words that have been said because they don't understand the irrational thinking.

People tried to shield young children from the situation as far as possible, and some felt their children had been protected. Others felt it was impossible to completely protect children when living in a household with mental health problems. Some children were upset and confused by disruptions to family life, and some didn't always get the attention and support they needed when they needed it.

 

When the children were young, Kiran worried about them and about money (recording in Gujarati).

When the children were young, Kiran worried about them and about money (recording in Gujarati).

Age at interview: 55
Sex: Male
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Let me see, what I can tell you is from what I have done. I have one older son. He went to London to study and when they were younger children and went to school, my wife was in hospital and I would come from work and go to school to pick up the children. Sometimes, I would be too late, my boy would cry, then I would be unhappy thinking what is going to happen to the children, what are we going to do? Wife's health was not too good. Financially, I was not strong so I could stop my work right away. I did not know about whether I would get benefits or not. Inside, I would be upset and unhappy (confused) how are we going to do things? Like pay the mortgage. My wife's health was getting worse.

At that time what did you feel?

At that time, I did not think too deeply otherwise, thinking about the house, thinking (worried) about money. At the time I had bought a house, about two years. There was lot of confusion did not know what to do- no solutions, what can I say, felt stressed. 

Is it different now?

The children are older now and the wife's illness has been long now so I know what to do and what not to do, so things are falling into place now slowly.

Being a carer with young children can be very tough. Some parents felt torn between their responsibilities for their children and for the person who was unwell. Some were caring for a son or daughter and said their other children worried they would have to spend their adult life caring for their brother or sister.

 

Her youngest children worry about their older brother and think they may have to look after him...

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Her youngest children worry about their older brother and think they may have to look after him...

Age at interview: 51
Sex: Female
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They do, I think they do worry at times, especially when I'm running around after him, they always ask whether they are going to do that for him in the future, or whether they also going to spend their life looking after him? And if we don't see him for a week or two they all times wonder whether he is ill again and sort of think, but I think at the back of their minds they feel that if things then doesn't change then they will end up having to look after him one day.

How do you feel about that, that they have these thoughts?

I don't know, it is difficult, but no, you don't know. You assume that maybe he will be able to pick himself up at some point, but, it may be difficult for him, it may be difficult for everybody else but, -it's not pleasant to think that he is the eldest isn't he and he's supposed to be looking after them, so, if it's going to be the other way around then, -this is the suspiciousness around, because every time you want to know what's going on, what's happening and it may not be, -maybe it's uncomfortable for him thinking that, people are worried about him, but then he can't help it, so I just hope that maybe he'll be able to help himself to the point that he can move on somehow, so, I don't know, it's difficult.

As they get older, some children take part in the care of a parent or sibling, and some become the main carer. Some talked about how caring responsibilities affected their children's education.

 

Kiran's daughter came home regularly while at university to help care for his wife (recording in...

Kiran's daughter came home regularly while at university to help care for his wife (recording in...

Age at interview: 55
Sex: Male
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I will give you my own example, when my daughter was at university. When my Mrs health was bad, my daughter went to college/university in Wolverhampton. She had to come back home at the weekends because my wife's health was so bad, sometimes in the evenings she had to come back from college. This was because she was the only woman and as a daughter she could understand her mother. So for her it was stressful with her education and she got behind. That was when support was needed but there was no support at that time here. 

For the family?

For the family, for the children. My daughter was older, but if the children are in secondary and primary school, it is very stressful for them. I was at work, my children were at school and had to come home and have to do things.

What other ways did they have difficulties, your family?

In terms of difficulties; eating and drinking, because when they come from school they needed to eat. When my Mrs health was bad, there would be no food made. Her mind was such that she could not do any work only sleep. So when the children came home, their clothes were not organised to go to school. Because of depression from the beginning we had to do things from an early stage. So there were a lot of problems when they were small. As the children got older, slowly we got to know and things fell into place. But in the beginning there were a lot of problems.

 

Pooja's son decided to get a job instead of studying so he could help his parents.

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Pooja's son decided to get a job instead of studying so he could help his parents.

Age at interview: 52
Sex: Female
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I think when we went to see the psychiatrist he told us point blank that my husband was not suitable for any job. 

He told us that about eight to nine years ago. He said that the way my husband was losing memory he might get up one day asking who all the family members were, he said this straight on our face. This had a very bad impact on my son. He was with us at the time of appointment. After finishing college he did not proceed for higher education. He said that he would look after his dad. He felt extremely worried by the fact that his dad could lose his memory completely. 

What was his age at that time? 

I believe it would be around 15 to 16 years; it was after three to four years of the heart attack. 

What he was doing at that meeting, was he there to translate the discussion for his dad? 

The doctor called us to share with us the results of various test done earlier. Our son had a day off from the college. We never realised that he would be impacted by that meeting. We just asked him to come along so he accompanied. I felt sorry later on for giving him that shock. But after the meeting, he told his sister and myself that he was not proceeding for higher education rather he would start making a job to help the family. I initially forced him to apply for admission at the university. But he told his sister to tell me about his decision about quitting studies in favour of a job. After that I did not force him. He had learnt computer sciences at the college so he joined as computer engineer somewhere.

Young people can really struggle with caring. One woman described how her teenage daughter felt helpless because she could not help her step-father get better. 

Some children don't want to get too closely involved, and carers of adult children described how their other children sometimes pulled away from caring responsibilities once they got their own family. Many continued to support their parents, however. 

The effect of mental health caring on children can reach into their adult life. For example, two South Asian carers said that their children and grandchildren had been disappointed when they had been less involved than expected in arranging their marriages.

Other family members
In addition to caring for the unwell person and for children, many carers have other caring responsibilities too, for example for parents, in-laws or others. It can be hard to juggle different relationships and responsibilities. Some also felt they needed to shield parents or other relatives from the mental health problem, and waited years before letting them know, if at all. 

 

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.

In some cases carers lost touch with relatives and friends, either because they didn't have time to see them, or because family or friends stayed away (see 'Support from family, friends and community'). One man's family had distanced themselves so that they wouldn't have to take on caring responsibilities for his wife. Travelling abroad was impossible for practical or economic reasons for some carers, and keeping in touch with family and friends abroad was challenging. Some still felt supported from afar by phone calls and letters when they were unable to visit.

Several carers had at some point worried that poor family relationships could partly be why there were mental health problems in the family. Some people described their family as 'dysfunctional' and in several cases there were conflicts about how best to care for the person with mental health problems.

Living in extended families when someone is unwell can greatly help carers because more people are around to help. For one carer, however (who lived with her in-laws) having her mother come to stay when she was unwell caused friction in the home, and she had to ask her mother to go home. Another woman, (who grew up in East Africa) had found that living in a polygamous (one man being married to more than one woman) extended family had caused lots of friction between her and her half-siblings.

 

Living in a polygamous family created tension rather than support.

Living in a polygamous family created tension rather than support.

Age at interview: 42
Sex: Female
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Actually I'm from a polygamous family from Nigeria, my father married four wives, my mother is the first in that family and she gave birth to three children, that is of my mother. So we are the first in the family, my senior brother, myself and my younger brother. So it's happened that in Africa all the first born they are the people that take all the mental health. All talking about mental health -it just doesn't come just like that. Most of the families in Africa because they are polygamous in nature there is bound to be jealousy by, fighting, struggling for your inheritance. 

So it was -so my mother spent money, my mother spent all our resources trying to make sure that boy becomes a better person of society. My father was not do, -he was, he was not too bothered because he had other children to fall back at, he has 14 children, then my mother has just three, you know, so it was a very painful experience. They left us and just my mother, you know, to take care of my brother. 

Friendships and social life
Being a carer also affects relationships outside the family. Caring commitments can make it difficult to have friends. People said it was hard to make firm plans, be spontaneous, find the time for friendships, or to involve the person they care for when their behaviour was socially awkward.

 

Maintaining friendships as a carer requires flexibility.

Maintaining friendships as a carer requires flexibility.

Age at interview: 63
Sex: Male
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Yeah, oh definitely, because when you're a carer you get tied down, right, with the person you care for, then it's not easy for you to go and visit your friends. Now however much you may speak to people on the telephone, if you want to develop a friendship, a personal presence is necessary, right. So, yeah, this happens, because they can't go and visit their friends and everybody, and afterwards you lose the friendships, and that sort of a business. And they might ring you and say, 'When am I seeing you', they say, 'Oh I don't care for this, -it's not convenient', and then they lose friendship, it is a fact of life. But in my case I make an effort, and I try to, right, I say, -what do you call- change the equation, I tell my friends, 'Look I'm a carer', so I sometimes tell, -all my friends know that I can't make advance arrangements. I have a friend nearby, I phoned him up last week, and then I told him, 'Oh I might come and see you, what sort of a notice do you need', he said, 'Oh tell me the previous evening'. So Friday I went, 'Definitely I'll come' then he said, 'Oh, I'll pick you up from the station', so like that. But if someone said to me, 'Oh, let us know in a, one fortnight in advance' and this, that and the other, then say suddenly the doctor will phone up, and say 'I want to come and see her'. Or that particular day, sometimes you get this sort of a carer, -a morning, a new one will come up, and then she won't know where things are, then I know' Trouble, and that sort of a business. So it's a bit, unless you're a bit flexible, and if you tell people once again this is your situation, they say, 'I'll come and see you'. Then my friend said, 'Why don't you stay tonight,' I said, 'No because of my mum I can't stay'. And I stayed as long as I can, and they said to me, 'Yeah whenever you feel like give us a ring'.

A few of the people we talked to said their social life had not been affected by caring, but many felt it was more difficult to socialise or that their social circle was now much smaller. A few felt very isolated with little contact with 'the outside world'. Some people discovered that their real friends were those who stayed in touch when they became carers.

 

Kiran's social life and his relationship to his wife has changed after she got depression ...

Kiran's social life and his relationship to his wife has changed after she got depression ...

Age at interview: 55
Sex: Male
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Do you feel you know why you have had a difficult experience?

I do not have a life, no social life of my own. I bring her to the centre at the moment. I cannot leave her at a daycentre on her own because they will not accept her. I can only leave her at home if there is someone with her. I do not have a social life, it's a 24 hour job. I have come now but my son is at home and will go to work at 1.30 pm then its alright, but if he had gone to work then I would have had to bring her with me.

No, I cannot see anything good for me at all but I cannot say it in front of her. I know it inside. My children know it that dad does not have a life. My children last week, took me to see Liverpool play a match. I had to keep my Mrs at my brother's for one night. They say to me daddy get out, have a holiday, go and do this and that they say, but I do not feel like doing anything.

Why not?

If I go and if something happens to her, then I will have to do the running around. Its better then to keep things as they are instead of having to run around if I keep her at someone's else house. If something happens to her health it will be me doing the running around. So from inside I do not feel like going.

In that I had never really sat at home, as a man. And sitting at home, not able to do much in the house. Watching T.V and sitting all day at home talking-the quarrels started to increase between two people. She was in depression and I did not know the reason that she was the way she is because of depression. I used to feel she is not working in the home and she wants (needs) to go out. And having left work, it takes time to settle things financially and so we rowed much during this time.

 

Marcie lost most of her friends, and thinks women are better than men at staying in touch.

Marcie lost most of her friends, and thinks women are better than men at staying in touch.

Age at interview: 72
Sex: Female
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So the women are better at keeping in touch and wanting, -they understand there is no fun here really but they understand the situation and they don't mind coming and they know that I benefit from it, because I like the company and I like the stimulation. And maybe Larry benefits from it as well. If his friends came and spent even an hour with him, maybe sitting near him, you know, and, I'm sure it would be quite nice for him. There is one, one man who lives in Liverpool and he always comes when he comes down from Liverpool, and he always comes to see him. But men are not, haven't been very good actually. And when I say that we knew a lot of people, we knew a really lot of people. I mean, Larry used to talk to everybody, you know, and made friends quite easily, so we knew a lot of people. But since he's been unwell we haven't seen not even half of them. Not even ten percent. I should imagine two percent maybe. Yeah. Which is sad. Yes, that's sad. But it's quite common I should imagine, you know.

Some people are selective as to who they talk to about caring, and some chose not to talk to anyone at all as 'they won't understand'. Others find that friends lost interest when the same issues about the stresses and strains of caring arose year after year. Feeling hurt by losing friends due to being a carer made others careful when trying to make new friends.

 

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.

 

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.

Age at interview: 51
Sex: Female
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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.

Carers also described relationships to their local and/or ethnic community. While many felt supported or that being a carer did not affect their relationships, others felt excluded and that people pulled away from them or treated them with suspicion. (See more detail in 'Negative attitudes to mental health problems') 

 

Her sister's mental health problems meant Sophie's family stood out in the crowd when she grew up.

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Her sister's mental health problems meant Sophie's family stood out in the crowd when she grew up.

Age at interview: 42
Sex: Female
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You know, even just every day things like going out and going shopping and stuff like that. Of course her disability wasn't noticeable, you know, physically noticeable or anything but as she got older people were aware that she was either, what's the word they use, like slow or whatever they may see and you notice that people stared and done things differently and behaved differently and, you know, that was difficult as a child growing up and of course as a child you shun that and feel embarrassed about that but as you get older you understand well, this is part of your life, this is your sister and you grow up and you understand a lot of things, you know, about how life is for her. So that was, -that's changed us because at least I can honestly say that as siblings, we've got an understanding of mental health more than the average person. Even now I can see people, and I relate to lots of stuff that's gone on because of my experience and I don't know, maybe that's why I'm in the job that I do because I think it's.


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Last reviewed September 2018.

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