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Mental health: ethnic minority carers’ experiences

Giving emotional and practical support

People with mental health problems can be very vulnerable and many need extra help and support both practically and emotionally. 

Some carers commented that our society often "turns away from vulnerable people". Instead, carers agreed that we need to look for "the person underneath the illness", as people with mental health problems have the same talents, intelligence, dreams, expectations, strengths and weaknesses as the rest of us. Only then can we give people the support they need.

 

Ramila has learnt a lot from her brother and says we need to see the person behind the illness.

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Ramila has learnt a lot from her brother and says we need to see the person behind the illness.

Age at interview: 56
Sex: Female
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And a lot of effort to be made, I mean not anybody giving up on anyone really, because I've, you know, come across people with mental health problems and, underneath their psychosis or whatever it is, I'm talking about schizophrenia mainly, -but there's such a nice person there with love, understanding, wish, desires, wants. And sometimes when professionals only see those sort of people for consultation for five, ten minutes, they, I wonder whether they see this wonderful person and the personality, you know behind it. Or then I think, you know, they're giving up on this person. There should be a hope that this person will get better, and they will be able to visit some, -whatever life they want to, rather than thinking, oh no they'll never get better, which is what I've heard a few times. 

The way my life has taken course, I feel extremely fortunate. I feel I've learned so much from my brother really, and I wouldn't have it any differently, except of course, I wouldn't want him, if the choice was given, I wouldn't want him ill really. But I've learnt so much and I have so much respect for him as a person. As someone, -I don't know if I had the same illness, that I could have coped with it in the same way, be such a nice person in spite of it really.

Emotional support
Carers agreed that people with mental health problems need emotional support and encouragement. Like other people, the people they cared for benefited from feeling that they are wanted and 'part of the family'. 

 

Jane says that people with a mental illness feel the same need to be loved as everyone else ...

Jane says that people with a mental illness feel the same need to be loved as everyone else ...

Age at interview: 69
Sex: Female
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People with mental illnesses, people, you know, -I think people will think, 'Oh they haven't got no feeling, they've haven't go no emotion', but they are wrong, they have got emotions, they have got feelings, they have got plenty emotions and feelings. They want a family for themselves, they want a relationship, they want all these things, but they just can't, they can't get it, because of their illnesses, so do the things as well. They want to be loved, the family love them, but they want a different sort of a love, you know what I'm saying, you know, so these things as well and in my daughter's case, I think, I think she thinks about all these things, I know she does. I know she does. I know she does, because I told you what she said to me about having a, I said, 'You wouldn't be here if you was', she said, 'No', she said, 'I'd have a family, I would have a house', that's what she said. So that's their thing, they have emotions. They have emotions, they have feelings. They have feelings and they want to be loved, not by the family, but loved by somebody, you know what I mean?

 

Instead of offering friendliness and support, Tina says, people sometimes act as if mental health...

Instead of offering friendliness and support, Tina says, people sometimes act as if mental health...

Age at interview: 59
Sex: Female
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I think people make a big ho-ha about mental health, it's not a big, big kind of disease that people get infected. Like it's not a, -what do you call it? You don't get the spread of the germs or anything, it's mental stability. 'When they have a mental problem the same way you have to tackle the problem, because once you know that his mental stability is not there then you have to tackle that. And it's not a disease that you can catch easily like a cancer or any other things. People are saying, he's got the cancer and he passed away or he got so and so things, he got asthma or you can, coronary attack, you get, it, jumps you get it but with the mental disease there's nothing like a jump or anything. They need your support, you're more friendliness and more good way approach.

Some said it is best to try to understand where the person you care for 'is coming from.' Being optimistic, tolerant, patient, loving and encouraging was also thought helpful. Some said 'just being with them' or having 'someone to talk to' was what people needed. Several carers accompanied their relative to places to support them if they were anxious about social situations.

 

Angela says people in hospitals don't get the care, support and empathy which they need and which...

Angela says people in hospitals don't get the care, support and empathy which they need and which...

Age at interview: 42
Sex: Female
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If you lock somebody into maybe rehab without giving the person a cigarette to smoke or without even taking drug or drinking, you'll be OK. A lot of them, mental health, a lot of them are being caused by drugs, most of them are in the rehab home they'll be there for five years, that's in giving their cigarette to smoke, their cigarette, you know they're not doing them anything, they're not helping them at all. Instead they are making the case go worse. Mental health need to be handled with care and support. You have to put yourself into that person's shoes- if you are this person how would your family feel, how would your brother feel, would they not relent, would you relent. I did not relent personally, I had to give up all myself. Because my brother was very, very brilliant, the brain of the family, a pride of the family. For him to just waste away I say 'no way, no way, no way'. All of them they've all called me this morning wishing me happy birthday. When he thinks back he will remember the kind of fights we fought for him, he will remember. Because the hospital rejected him at the last minute, they rejected him, that was the last straw and that was our duty. Till tomorrow nothing like, nothing like that.

 

Getting annoyed or angry didn't work and Ramanbhai now speaks to his wife in a gentle, comforting...

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Getting annoyed or angry didn't work and Ramanbhai now speaks to his wife in a gentle, comforting...

Age at interview: 62
Sex: Male
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If you talk to her properly, then -only then does it sink in. I have looked at the whole thing, from telling her off or trying to rule her or being angry with her but it does not achieve anything. I have tried all of this. Right now, the main turning point at the moment, if you talk to her by pampering her, that, 'This thing is not this way or that', or 'If it's done this way it's good'. You have to laugh with her, even if you do not feel like it, you have to laugh, right? Toh, then she feels, 'No this is ok'. So the turning point is this, you have to talk to her very politely and slowly. That's it. That is mainly what I have seen. Yes. Very carefully, -if you talk to her- say to her gently, 'Keep cool, things have happened today but tomorrow it will go well. I am with you, do not worry'. 'Who is going to ask you? They will ask me'. See. If you talk like that.

If they didn't live in the same house as the person they cared for (and also when people were in hospital or residential care), carers kept in regular touch to make sure 'everything is OK'. Some spoke on the phone every day or every week, and many visited regularly.

People said the person they cared for had to know they could count on them. Some always left their phone number with home carers or others who looked after their relative, and others would ring to let people know if they were running late.

Carers said you need to treat people with mental health problems with respect to avoid taking their dignity away or being patronising. Some said having respect means you have to let them know, in a loving way, when they were being unreasonable or irrational. 

 

Anne describes an exercise which helps her deal with her husband's irrational thinking.

Anne describes an exercise which helps her deal with her husband's irrational thinking.

Age at interview: 40
Sex: Female
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The clinical psychologist, she used to do these worksheets and things'

'And on there is a lot of stuff written out, like distorted thinking, it could be 15 different ways of distorted thinking. So seeing those kind of things to me was, -really helps a lot. Oh right, so that's called 'catastrophising', so that's why, drop the glass on the floor, the world's going to end. So just reading the sheets that were given to Adam I found helpful. And then, one sheet she did, and it was called Evidence For and Evidence Against, so if he has an irrational thought, he's supposed to write down, what's the evidence for this thinking and this thought, and what's the evidence against? So I thought, 'Oh right that looks good' so. Then sometimes he's panicking about something so I say, 'Right let's try and look at the evidence for and the evidence against'. So that's how I've learnt by, when I've seen these sheets and things, has been helpful.

 

Tina says when people with mental health problems have wrong perceptions of what is happening,...

Tina says when people with mental health problems have wrong perceptions of what is happening,...

Age at interview: 59
Sex: Female
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One patient, she is a woman, and any man she saw to enter the room (at the community centre) to ask anything and she said, 'Oh, that man is looking at me and why is he coming here, I don't like the man's face here, why is he coming here, what's wrong with me, why are they looking at me?' Actually he doesn't look at that woman or nothing, they never say hello or nothing, but she feels an inferiority complex in her mind that any man who come near -coming in the room means -she is sick of men, and that's the reason -she gets so angry and she gets so angry in her behaviour. So I take her in another room and sit down with her and say, 'Look, she is coming or he is coming here for so and so reason, it's nothing to do with you, don't worry, he won't come to you, he won't harm you, so don't worry'. And then I make her calm down so she's all right after a while. But I think she is having the episode that -after marriage- she doesn't have any family members surrounding her, -her own family member, only husband, and she is not having any baby or anything, and mentally she thinks that, 'No-one loves me'. And that is the problem with her and that's the way.

Practical support
Many carers did practical tasks for the person they cared for and people usually did more at the times when their relative was very unwell. Practical tasks included household chores or helping their relative to eat or drink. Some helped out with baths or massages. Others took on new responsibilities for household finances, maintaining the house or making sure children were fine. Many usually came along to meetings with services, some helping with translations, and quite a few looked after medication (see 'Taking control - difficult situations and medication').

 

When her son is unwell she visits several times a day to make sure he is OK.

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When her son is unwell she visits several times a day to make sure he is OK.

Age at interview: 51
Sex: Female
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Right, definitely if he's unwell, he's unable to look after himself in any way. Initially, I asked him to come and stay with us, but then I had, -where I was living there was a big window on top of the stairs, once he jumped through the window and hurt himself. So then, subsequently, I felt worried to bring him back there and he was living in a first floor flat anyway, so thinking maybe that would be safe. But then, because he's unable to look after himself he wanders, he wouldn't eat, he wouldn't wash or clean or look after himself, he wouldn't even lock his door. If he has got money, he just wastes it. So I have to make sure, every morning, I will go and make sure that he's up, I give him something to eat and give him his medication, then I run back to work, in between lunchtime, I go back there and make sure that, where is he, what's he doing, is he around? Has he gone out? If he's around, if I can't find him around, I have to be searching within the locality where he is, or the community where he was. After work, around 5 o'clock I have to go back there, make sure that he's eating and stay there until, I make sure that he's locked the door, before I have to go home. So, my whole life will be consumed in between running to work and coming back and making sure that he's all right.

Some carers who lived together with the person they cared for said that everyday life was 'regulated by routines' and that 'continuous little jobs' meant they were caring all the time.

If the person who is unwell is not co-operating, it can sometimes be difficult to give practical support. Some carers had asked professionals to find solutions, while others thought finding ways of doing things based on their own experience (and those of other carers) usually worked best.

 

Her support worker suggested that Anne simply run a nice hot bath for her husband instead of ...

Her support worker suggested that Anne simply run a nice hot bath for her husband instead of ...

Age at interview: 40
Sex: Female
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And my support worker has been good and sometimes she, -it sounds silly but once I was explaining the situation and she said, because it can be frustrating because you think, right your muscles are hurting, you're really tired. Like now he's not slept all last night. Literally all night he hasn't slept so he'll be absolutely shattered. I can see just by looking at his face that he's shattered, he's in pain. 

Yeah, so it's frustrating because he won't, he can't think, 'Right I'm absolutely shattered, I need to go to bed early so I'll have a bath, a hot bath. That'll relax my muscles, then I'll take a certain tablet and I'll sleep through the night and I'll feel so much better tomorrow'. So he can't think like that. But sometimes, especially because you're supposed to be wife and husband I think, 'Why don't you have a bath?' And he'll go, 'I don't want a bath', and you think, 'God if he just has a bath he'll, it'll help'. And then it just, -arguments and, or he goes into another panic attack. Whereas once she said to me, 'Well, why don't you just run the bath, put lots of bubbles in it etc and then, to try and encourage him, so you run the bath' And I thought, 'Oh yeah', so just little things like that, are sort of practical ways of helping.

 

Although professional advice can be good, Anton sometimes finds his own ways of doing things.

Although professional advice can be good, Anton sometimes finds his own ways of doing things.

Age at interview: 63
Sex: Male
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Now sometime ago my mum used to have a go at me, then I used to get annoyed, I said, 'Look I'm looking after you, why are you having a go at me?' You know. So then when I spoke to the psychiatrist they sort of said, 'Well that's the nature of the illness, so there's no point getting angry and having a go at her'. Then, -like trying to give her the food, when I try to give her the food, some days she will open her mouth and eat it, other days she just wouldn't, she'll keep the mouth closed. Now early days I used to shout at her, I said, 'Open the mouth', and I said to her, 'Look I can't spend the whole day here, why can't you open the mouth?' Then once again when I spoke to the eminent psychiatrist, and people like that said, 'No it's no point you shouting, because it doesn't go through her head', and this sort of a business. So I get a bit of advice from them, but sometimes I found though, -the professionals when they give advice- it's, it's not good as you, -well obviously they give authoritative advice, but then it doesn't always solve the problem. Now my being an auditor, I used to solve company problems, so then sometimes -then think I ask their advice -psychiatrist's advice-, then I find that it doesn't seem to work, then I said, 'Well I'm going to sort it out my way', and I just solve the problem, right. Now, so when they, -when she doesn't eat, so what I did was, I kept it aside, tried ten minutes later, sometimes she ate. Then another day when I tried ten minutes later she wouldn't, then after about half an hour later then she ate, so like that, so now that's a sort of tactic which I tend to use, then.

Some carers looked after the money for the person they cared for. However, carers can feel uncomfortable about how it looked from the outside that they 'don't have time to keep a separate account' for the person they cared for. 

 

It makes sense to do a joint weekly shop for herself and her brother, but Ramila feels...

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It makes sense to do a joint weekly shop for herself and her brother, but Ramila feels...

Age at interview: 56
Sex: Female
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And there's something around money. And I really don't want his money. But he gives me his money because he's very conscious that I do, -nowadays I do all his shopping. I don't feel bad about taking his money because I try to make sure that he is looked after in whatever he wants, you know, I try and get it for him. But I, -I suppose it's in my conscience really, and because of the new legislations, or new ways of working, I'm always aware that it would look very bad by agencies that I don't have time to do proper accounts. I don't have time to, -and also if I tried to put his payment, -because it will mean splitting, -I do all my shopping with his shopping. I take him out whenever he would agree to me. He won't come out of the car but at least I feel that he's, -so I think how will I weigh up all the time that I spend on him? Not that I want it weighed up. And I, -I just think, I do it out of love for him and I would have always done it whether I got a penny or not but, -and I don't claim a carers' allowance.

When the person being cared for was in hospital or residential care, many carers spent time visiting them, bringing appropriate food (such as vegetarian or Halal foods), doing their laundry or buying clothes. Some said they needed to be present to follow up on medical care and ward rounds (see 'Dealing with hospitals').

Carers also helped their relative with things that make life more interesting. Many spent a lot of time with the person they cared for, talking or just doing things like watching TV with them. Some supported the interests of their relative by providing books or music. One carer rang his son in hospital every Saturday to let him know about the latest football results. Some went out together for meals, to the cinema or theatre or community events such as weddings or festivals. Others arranged courses, activities, days out and holidays. Some went for walks together or found other types of exercise. Some provided for religious needs, taking people to meetings, praying and singing religious songs together and even arranging Holy Communion at home. 

 

Sarah's son has little initiative so she organises trips to stimulate him (played by an actor).

Sarah's son has little initiative so she organises trips to stimulate him (played by an actor).

Age at interview: 59
Sex: Female
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Yes, so the impact that it has is that I've got, -because he's got, -he has no initiative really, so I have got to organise everything for him. I have got to, -if I do anything I've got to make sure it's not going to have a negative impact on his life, you know. So he came with me to see my parents, one of my daughters were there as well for a few days with her boyfriend, and so that went well, I mean, -and it was good for him to be with people of his own age. But if I was not, if I didn't take him places he would not go anywhere, that's the thing, and we stopped in Paris on the way back, and he was quite anxious, because he hates, you know, crowds. But we still went, and we didn't, -it was the first day I woke him about 10.00 am because we had to catch a train at 12.00, arrived in Paris at 5.00 pm, by 8.00 pm he wanted to be back at the hotel, because he could not, he was too tired, he gets extremely tired, that's the thing. And the day after I had to plan activities which were not stressful, which were not too tiring, so in fact we went, in the morning we went to visit Le P're Lachaise, which is a cemetery with famous people, -but it's very peaceful, so he enjoyed that, going looking at and we saw Chopin's grave and so on, so he was quite happy with that. It's just trying to find, you know I always feel nobody's going to do for him, so I have got to do something to stimulate his mind and for him to have something approaching a normal life, otherwise, if I was not around he would go nowhere, because he can't, you know, do it himself.

 

Kiran help his wife to take part in activities (recording in Gujarati).

Kiran help his wife to take part in activities (recording in Gujarati).

Age at interview: 55
Sex: Male
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We come to the community centre here and near us there is a group for ladies only near our home, she goes twice a week, and it's for ladies only. I do go with her but drop her off in the morning at 11-30 am and pick her up at 1pm every Tuesday. They do light exercise with them. She goes on Friday at 12 noon and finishes and 3pm. Once I have dropped her off I have to sit in the house, cannot go out because if her health gets back, they phone and I have to go back and pick her up. If she goes far from me, then I cannot go far. She goes to cancer research every Tuesday after 1 pm. At this place they said because it's a ladies group, I sit in the car or walk around nearby. After one to one and half hours I go and pick her up.

Letting go
When talking about the help and support they gave to those they cared for, many of the carers were concerned about dependency, saying things like 'perhaps I am doing too much?' or 'he gets addicted to me'. Some had tried to do less so their relative could be more independent, make their own choices and look after themselves more. 

 

Jane wants her daughter to become independent so she can cope when her parents are no longer there.

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Jane wants her daughter to become independent so she can cope when her parents are no longer there.

Age at interview: 69
Sex: Female
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Do you usually go with her when she goes to the doctor?

Yes, we used to, we used to go, but now what we do now, is now and then let her go on her own, because we want her to be independent you see, we want her to go and talk to the doctor herself, you see. So we do that sometime, let her go on her own. Let her go on her own, and let the doctor ask her questions and she tells the doctor how she feels and things like that, because they need to be independent, because they spend so much time depending on you, they need to be independent. Because, I mean, the thing that worries her dad and I is, I thought, -what happen when we are not here and that's another big worry, that's a very big worry. A very big worry, because as I say, she sees me as her mother, she sees me as her friend, she sees me as her counsellor, because I counsel her, her dad and I, we counsel her about a lot of things, you see. So when we're not here, what happens, what will happen and that is our big worry now. Because I know for a fact that people that suffer from mental illness they are vulnerable people, they can be taken advantage of and that scares me. That scares me. She's got two brothers, she's got two older brothers and they're quite good with her. Quote good with her but they have their lives, so and that really scares us now, that is our number one worry, you know, what will happen, will somebody look after her like what we do, will they? You know. That's our worry now.

Some said they had realised that helping loved ones too much meant their relative didn't learn from their experiences, including their mistakes. Some said it was good if the person they looked after was the one deciding when they needed help.

 

Leah has started to tell her son how to do things instead of doing them for him, but she still...

Leah has started to tell her son how to do things instead of doing them for him, but she still...

Age at interview: 62
Sex: Female
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Sometimes, it is like, before I used to do everything he needed for him but now I am not. I tell him how to do and let him do it by himself. I phone him, take care of him less frequently, I phoned him, but, now he is also, I often call to remind him to take medicine. I call him at night to remind him to take medicine. I asked him, sometimes when it is 10 o'clock, he takes medicine at 9 o'clock and sometimes when it is 10ish o'clock I called him and asked if he had medicine, he said no and I asked him to take medicine quickly and he would take. That is, he is like, he, without experiencing he would not believe, let him bump against the wall, bump the nails, from time to time when he learns a lesson he will then have the experience. Everyone is like that, when the thing has happened and he does not have the experience, the feeling is different. That is why people say, “Not feeling the pain until getting needled”.

Others said letting go of some responsibilities, such as 'nagging about medication' was important to keep a good relationship with their loved one. Some said they also needed to 'let go' for their own well-being (see 'Getting the balance right').

Last reviewed September 2018.


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