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Mental health: ethnic minority carers’ experiences

Support from family, friends and community

Family, friends and the community can give lots of support to carers. Practical help with shopping, transport, or looking after the person who is unwell for a couple of hours can make life easier. Having someone who listens or a shoulder to cry on is important emotional support. Meeting up for coffee, going for a walk together or just 'having a laugh' is also great social support which give carers a break. Some also get financial support from those around to help make ends meet.

The carers we spoke to had different needs and expectations of support from those around them. Some people received more support than others. For one or two people, a lack of support meant they felt at 'breaking point.' These people wondered if they could go on caring. Others believed they did get the support they needed, or could get more support from health and social services (see 'Support from carers' services').

Support from family 
Close family was the most important source of practical and emotional support for most carers we talked to, with some also getting financial help. Grown up children, for example, often lent a hand or an ear.

 

Sarah's daughters gives practical help, and their strong relationships are a source of strength...

Sarah's daughters gives practical help, and their strong relationships are a source of strength...

Age at interview: 59
Sex: Female
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So I mean, -so they live in London, I don't see them every day but they phone very regularly and they've got a happy lives, she gets on with things, she is happy, and it gives me a boost really. And for instance when I went to that conference I asked her if they would not mind coming here to stay for the weekend with their brother, and they said yes, and they went to see friends, school friends and so on, but they was there and, so they had, you know, meals together and so on, so that's given me, at least I don't have to, -I mean I've got to be careful because they're young, they're fragile as well, but at least I know they are OK, so that gives me a boost, and we talk and so on. And in fact I used to talk a lot about Max to them, and once they told me, “You're always talking about him, and I would like to talk a bit about us”. So I said, “Yes.” 

 

Ranambhai's daughter gives practical and emotional support to his wife, including discussing ...

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Ranambhai's daughter gives practical and emotional support to his wife, including discussing ...

Age at interview: 62
Sex: Male
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At the end of the day I have my daughter's support a little bit. So because of that I get a little bit of relief so I think it's alright. Otherwise my daughter will think 'My mum is sitting at home and my dad is out doing this'.

How does your daughter help, in what ways?

In terms of help, if a couple of guests are coming then she will come and help. Sometimes, if we want to go to the pub she will come and sit. She will bring some food with her to feed us and also eat with us. We sit in a group and enjoy being a family and that's it. Or if I need to take my wife anyway and I cannot go she will help with taking her. Sometimes, if my wife gets something into her head and does not want to talk to me she will talk to our daughter. Amongst ladies, they are more likely to talk to their daughters. After that my daughter will tell me secretly tell me that it's this way and don't do this and that. So that things can be straightened out. So with all of that it does give me some measure of peace because she says to mum that she is there for her and all of that. It makes a difference to her, lightens her mind.

 

Pooja gets great support from her son who lives with them, but less from her married daughters.

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Pooja gets great support from her son who lives with them, but less from her married daughters.

Age at interview: 52
Sex: Female
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They are helpful but after the girls get married their focus is their own family. Our son helps us financially as well. He sent us to visit India last year. And he paid for the travel and other spending. You cannot get all such expenses out of the benefits. So he has helped us quite a lot. 

From your daughters, is it you who would not like to accept any help or is it their families who would not let them help you? 

They are busy with their families. They have children, they have homes and they have mortgages to pay, so I do not feel asking for help or taking anything from them. 

Have they ever offered you with help? 

Yes sometimes they ask if we would need anything but we have not taken anything from them. 

Why you do not take help from them? What is your real feeling? 

I just feel that they have their own families to look after so we should not put them in trouble. The hard time that I have been through, I do not wish my girls to suffer anything similar to that. 

And about your son, do you not feel the same way? 

He is with us and I do not feel anything wrong about seeking his help. 

Is he living with you? 

Yes, he lives with us.

Social contact and companionship was the type of support most carers appreciated. For instance, one woman said that life became more enjoyable when their son, who lives with them, had a baby daughter who brightened up everyday life.

Many reported, however, that they didn't get much - or at least not enough - support from close relatives. Very often most of the practical tasks fell on one person who ended up 'picking up all the pieces.' This person landed the job of carer for a range of reasons, including:

  • Not being married
  • Being oldest female
  • Living in the same household
  • Being the most capable
  • Simply because they were not walking away from the situation.
 

Anton's siblings leave most of the care to him.

Anton's siblings leave most of the care to him.

Age at interview: 63
Sex: Male
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Now although I've got brothers and sisters -you see, as I'm single and not married they think I've got plenty of money, and all the time in the world, you know, they just come and make token visits. Like 'sick visiting' half an hour, one hour, one day a week, that sort of a business. So, obviously it's my mother, -and then if the roles were reversed she wouldn't abandon me, so that's the reason I've decided to look after her as long as I can. 

 

Much of their family 'shun away', and Pooja feels supported only by her mother.

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Much of their family 'shun away', and Pooja feels supported only by her mother.

Age at interview: 52
Sex: Female
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Who else was around other than his brother? 

One sister but she was of no help. 

Was she living in this city as well? 

Yes, but no-one wanted to help. Even the friends shun away. They thought we might ask for money because my husband had become jobless. Things like that. They felt that our family would be an extra burden with young children so every one kept distance. 

And what about your family? 

I have got my mother and two sisters. My mother helped us little bit with our spending but my sisters were married in Birmingham and had their own families to look after. My mother helped us.

Many carers felt that some family members could 'make more of an effort' to visit, call or help out with practical things like preparing food or being involved with medical care. Anton, who suffers from depression, has felt this most acutely in the periods he was unwell himself. 

 

When she returned after two years abroad, her brother hadn't taken on much of the care for their...

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When she returned after two years abroad, her brother hadn't taken on much of the care for their...

Age at interview: 28
Sex: Female
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It was like I never left, it was literally like you took two years and you just went like that and it just, and I don't know how much he would've done in those two years. Maybe my mum would've stepped up and done some more. But I think it's hard for her because my brother and my sister push her away and she doesn't really cope with that very well. She doesn't really want to look at that, I think she finds it a relief that she doesn't have to but for the sake of keeping up appearances, she'll do the hospital visit, even if it only lasts 30 seconds, she'll go up and she'll see them and the last time she went to see my brother when he was in, he didn't want to see her and didn't let the nurse let her in so I don't think she feels there's much that she can do really apart from, for me to go. So I don't really, I don't know, I don't think, I don't think he would've done too much but he probably would've gone to visit a bit more than my mum would've done.

Support from friends
People had similar experiences with support from friends. Some got great support while others felt people pulled away or did less than they had hoped, adding to their sense of isolation (see 'Children, family and social life'). 

People thought many friends didn't really understand how it is to care for someone with a mental health problem. Rather than judge or give unhelpful advice, the people we spoke to liked friends just to 'be there' so you could 'be yourself' and 'let off steam'. Some said it is difficult, or even impossible, to understand properly what it is like to be a carer if you haven't experienced mental health caring yourself.

 

Anne's friends don't really understand, and she chooses who she talks to, but communicates with God.

Anne's friends don't really understand, and she chooses who she talks to, but communicates with God.

Age at interview: 40
Sex: Female
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So, -and then any, -well my closest friends are either single or divorced, or some of them are married but they're not in my situation so, with the best will in the world they can't understand. So, some don't want to know that side of me, you know, don't really talk about it. Some try and understand. Some will say things like, they'll say, 'Oh I wouldn't put up with that'. 'Oh I'd get rid of him'. And I think, 'Well that's not really helpful, you know, or that's, -I don't want to get rid of him because I do actually love him so, and he is my husband and', or they don't under-, they think that if he wasn't ill and he was doing some of the behaviour he does you'd think, 'Oh he's not a very nice man'. But you've got to remember that he's not well, so that's why he's behaving like that. So some people make judgements thinking about his behaviour when they're forgetting that he's ill. So I choose the things that I say to even my friends, because a lot of them misunderstand. And so, one or two friends I've got, where we just sort of have a laugh and that, so I might explain a situation that's happened and they might think it's funny, and then we're just talking about the weather kind of thing. But there's nobody I have where I can, -that understands me and where I come from, that yeah -I do like to have a laugh but sometimes it's nice just to talk to people and go, 'Oh god you can't believe what I've just put up with in the last two or three days', and just be able to spill it out for them just to listen. You're not expecting them to change, you know, come up with a miraculous answer that, they can't, but just to actually listen and acknowledge the impact on you. So I don't have anybody that I can do that with. 

So you feel lonely? 

Yeah. Yeah lonely is another word, like the grief and loneliness, yeah. Yeah and, but. And all I can do in my loneliness is give it to God. That's all, I have faith and that's it. And it's, so it's the times when it's really bad, is the times when you're even more lonely. The times when you need somebody even more is the time you don't get somebody.

For those who had close family and friends abroad, help and support can be sporadic. Some people did get support via phone calls or occasional visits.

 

She was the sole carer but her aunt called from the USA to support her father (played by an actor).

She was the sole carer but her aunt called from the USA to support her father (played by an actor).

Age at interview: 60
Sex: Female
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This was really upsetting, it was a really, really exhausting time as well because I was just watching my father fade from, month by month really, so that eventually I couldn't really have a reasonable conversation with him. And I was his sole carer, the only one in the family really who my dad could really rely on. And he has a sister, -well he's got a couple of sisters who live in the States and his sister in Miami was always really supportive and my dad, when she'd phone, my dad was always really strong and she would say, 'Oh he's fine. There isn't anything wrong with him'. There was this sort of connection that they had that my dad seemed to be empowered by, by hearing her voice. But obviously that, my dad used to be upset on the phone [coughs] because they hadn't seen each other for like 59 years.

Gosh, that's a long time.

Yeah. So she'd known, she was 20 and my dad was 19, I think, when they last saw each other.

Making friends and getting support from other carers was seen as very helpful because they can understand the situation 'without too much explaining'.

 

Other carers understand her son's condition in a way her non-carer friends don't (played by an...

Other carers understand her son's condition in a way her non-carer friends don't (played by an...

Age at interview: 59
Sex: Female
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And carers, -other carers, because there is no need for many explanations, they understand really where you are, and while, you know, with some people for instance, they would say well what's wrong with Max? Whenever I phone him, he answers the phone, because he's very articulate, I don't know whether they expect him to be screaming over the phone, but he doesn't always answer the phone, but when he does, -and it's one thing that has always surprised me, the way he can hold a, I mean it's a short conversation, but he appears very together, that's really quite amazing. And so that sometimes gets on my nerves really, with everybody expecting him to be climbing on walls or-.

Support from the community 
Some people said that in the UK 'you don't know your neighbours' and that it is more 'each man on his own' compared with many other cultures. Many of the carers we spoke to didn't really seek help from neighbours, not wanting to 'bother them too much'. 

Others did get regular support from neighbours. One man said his neighbour would 'pop by' to see his mother during the day if he had to go to meetings. Some found neighbours to be good company for themselves or for the person they cared for.

 

Their neighbour is great company for his wife and has been there for them when crisis hit ...

Their neighbour is great company for his wife and has been there for them when crisis hit ...

Age at interview: 55
Sex: Male
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What about your friends or family or anyone else?

No. My wife's friend is Chinese she lives next door to us. She is elderly. We got a lot of support from her.

In what way?

She used to come our home everyday, and sit and talk with us. My Mrs is a people's person and she like people a lot. If anyone comes to our home she is happy. She forgets to argue and forgets her illness and she gets entertained by people. She loves to feed and give refreshments to people. She [the neighbour] used to come home everyday and sit with her. My Mrs has a habit of drinking a lot of tea, in a day she will drink at least 20-30 cups of tea. When the Chinese woman came she got my Mrs to stop drinking tea. She got her to drink hot water. Once before, when before I stopped working, the Chinese woman came when my Mrs had fallen. She got her spare key and she got the neighbours together and opened the door and she pressed the panic button. 

When you got her support, how did you feel?

In my heart I felt there is someone nearby and felt if something happened there is nothing to worry about or if I wanted to go out then I will get support. If I tell her that I am going out, she will phone or will come into the home, sit with her or take her out for a walk for a bit.

So did you get some relief from that?

Yes, some relief, that someone is nearby, that not alone.

Some carers had not told family, friends or the community about the mental health problem in the family because they feared - or had experienced - that people 'turn their backs' and didn't understand (see 'Negative attitudes to mental health problems'). 

 

She says 'Punjabi people don't know what depression is' so they don't want to tell the community...

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She says 'Punjabi people don't know what depression is' so they don't want to tell the community...

Age at interview: 52
Sex: Female
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How does the local community behave towards him? 

OK, they just do not believe that he is suffering from any disability. If, for instance, he would say to someone that I can not remember something, they reply the same to him, treating it like a joke or something natural. They do not take it like a problem or disabled man. 

Have you told people that he is suffering from depression? 

No-body would listen. Actually I think our Punjabi do not know what depression is. Only those would know about it who has suffered from it. 

Do you know of any one in the local Punjabi community suffering from depression? 

I know one or two cases. Those who have been through such things know what we are talking about. The rest would not understand a bit.

 

People fear violence and stay away when they hear Gou's sons have mental health problems.

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People fear violence and stay away when they hear Gou's sons have mental health problems.

Age at interview: 72
Sex: Male
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Community? If anybody heard that you have a sick son, they don't want to know you. That's the worst part. People still have the idea that, that -I still hear people saying to me, saying to somebody, “You know, he has two sons, they are sick”. And when people hear that, they don't want their children to even come any nearer. Because they are afraid, you know, that your son might do something, or something. But then again, I don't blame them either, because, because they do not have enough knowledge that not all sick people are violent, not all sick people are, are bad. They have a life. To me, it's amazing' People tell me, in Northern Ireland, one in four is mentally depressed, or something like that. You walk in the shopping centre, you see four of them, you say, which one? Therefore it's, -because my two son has a lot of relatives here, must have 40, or 50 relatives here. Not one of them come near. Not one.

Others felt supported by their workplace, community or by people from their place of worship. Help with interpretation or filling in of forms was mentioned as well as feeling a sense of belonging when taking part in community events. One woman said her husband was 'more normal' when he was with others from the community. Several people said it helped to get support from within their own ethnic community because they might 'understand better'. 

 

Anton feels supported in the Sri Lankan church.

Anton feels supported in the Sri Lankan church.

Age at interview: 63
Sex: Male
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The church we go to, we've got some, one of the ministers, now he's retired and gone, they come to see her every week, and they come and give communion, and some of the church members come and keep company, and this sort of business, you know. But once again there are churches and churches, some churches people turn up at 11 o'clock, 5 minutes to 11 before the service starts, 5 minutes past 12 they vanish. And they can go to church for years, they wouldn't know who's who, they're like strangers, you know, so like that. Yeah that's it. But there are some, -like I go to a Sri Lankan church, well if I don't go there one week, the minister or somebody, 'Hey I haven't seen you, what happened', which is nice to feel wanted. Then if I say, 'Oh, no I've got this ruddy depression', 'Is there something we can do for you, come along and spend a day with me', yeah.

Given some negative attitudes (see 'Negative attitudes to mental health problems') many said it could be difficult to get support from their community because of gossip and prejudice. Some thought churches, temples or mosques were unsupportive or not open minded enough about mental health issues (see 'Support from spirituality and religion').

One woman who had lived in the UK for seven years said that 'as a foreigner, there is no community' to get support from. Her brothers in East Africa ring her regularly and want her son to return there so that he can get support from a more close knit community.

 

She feels she wears out her few friends here, whereas communities back home might be more...

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She feels she wears out her few friends here, whereas communities back home might be more...

Age at interview: 51
Sex: Female
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There's not a community. I mean if you are a foreigner and you haven't got family around, the only people that maybe your family, maybe a close friend or, and as I said, friends give up at some point, when the situation goes on for long, you know, because if he's going for two years and three years, -initially people were there as maybe friends, but then within a year, within two years, within three years, four years, you don't want to talk to those friends again about it, because they don't want to hear and that makes it so much alone that the only person that I feel wouldn't be fed up listening is my mum. But I don't talk to my friends about him and they don't ask me about him, because maybe, as I said, it's gone on for that long that' People just forget about it, or something like that. So it is hard, I find, -you find yourself in this strange environment with that sort of situation, you know, because I would think that if, -My brothers do phone a lot, when they hear things are going on like that and I know if at times they are wanting to come over for a while and I know if he was there, maybe there would be so many people would have picked up the pieces and sort of supported maybe emotionally and psychologically, but it's not like that here and it is difficult.

While people had many comments about how community support differs in different cultures (see 'What different cultures can teach us'), some felt all communities need to 'get together' to give more support to carers and patients.

 

She thinks most support comes from the home, but more openness can help communities provide...

She thinks most support comes from the home, but more openness can help communities provide...

Age at interview: 59
Sex: Female
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That's the most important issue, because the people can, the outside people they can watch, see and laugh it on. Very rare you get support from outside. So if you want to support you have to do support from the home, like a charity begins at home.

And what about support from the community?

Well, if the people who understand those problems then they can talk to the community people and say that in -openly, in community members and then say that, 'Look, when this is the type of issues coming in our society, now we can take some action or we can take them, -if you can't look after them, take them to the old people's home or children's home or fostering them, and if you can afford to them to send in a hostel you can do that way'. Otherwise I don't think so, -you can live your life like that because come what may happen, something happens to you who can come and help you? So the community should get together and think about the progress or 'unprogress' or any issue of the health problem -they should take into their hand and give them support.


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Last reviewed September 2018.

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