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Mental health: ethnic minority carers’ experiences

Stress and carers' health

Carers agreed that caring for someone with a mental health problem can be very hard emotionally. People thought that stress, worry and not getting enough rest to 'recharge the batteries' could even hurt their own mental and physical health. Dealing with difficult behaviour, feeling insecure, grieving over loss and being dissatisfied with health and social services were common reasons why some carers felt anxious, depressed or physically ill. 

The people we spoke to had been carers for up to 40 years. Some grew up with mental health problems in the family, while for others the onset of mental problems in a loved one was a sudden 'shock to the system' that they had not been prepared for. Although all tried to care with love and dedication, they also talked about the stresses and strains involved.

Stress and worry
For some it is not so much the practical things about being a carer, but the 'head space' it takes up that is toughest. Time of diagnosis, hospitalisation (which for some involved concerns about culturally appropriate services) or other dramatic events, or the initial period after arriving in the UK were times when people felt particularly tense and stressed. Some people said their stress levels went up and down with the health of the person they cared for. 

 

Emily describes some of the stress she went through when she first arrived in the UK and started...

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Age at interview: 36
Sex: Female
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One time I even had to go to get counselling for this situation because when you're on Benefit, you know, and you came in this country and you don't understand the system, it's very stressful because with my husband illness, he don't even understand also about paperwork, it's like he's lost. Then, and I was sorting out his papers for him and so I kept on sending on more information, it's like, 'I'm not getting anywhere', and it was so stressful for me and it was because my daughter, when my daughter came in 2006, July, she says to me, 'Mummy, do you realise what you're saying', and I said, 'No'. She said, 'You keep on asking me if I want the corn beef with the bully beef and you keep on saying to me to put toothpaste on the toothpaste', and then I realised how stressful I was with the situation, wanting to work, wanting to sort out the house -because my husband had a fire in his flat where he was living. He went out and, when he came in there was burn out so we got an empty flat. When I came he was in a state of -not well. And you know, I have to get the house sorted out and all those things so it was very, very stressful and I didn't realise that it was so stressful until I had to went to get counsel and from that there is a big change also. A big change with that help that I got from contacting, with the supporting work and contacting the African Caribbean mental health team because I did not know that you could contact the doctor when you get, -they recommend you do, people, -I didn't understand that. Didn't understand because I was mostly focusing on a job and sorting out my husband. So during that time, well my daughter came and I got the supporting people helping me with the bills and the paperwork in a, -it becomes a peace, a more peace for me and when I look at my husband, because we are serving God, it, -I've seen the peace within him which more like something would comes up like his bill and he would say, he can't handle that or, it's a bit different now.

People worried about things like the future, their children, money, their own wellbeing, the health and safety of their family, and the health and treatment of the person they care for.

 
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Raye puts everything on hold when she worries about her father.

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Age at interview: 28
Sex: Female
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She was having a party so I went down to London for her birthday party and I just went to check on my dad because I knew he'd been a bit funny, I just went to check on my dad before I went to her party and in the end I didn't go to the party because he wasn't there and I was worried so I ended up waiting outside to see if he'd come home. Outside his flat and I still didn't see him that night but I would take the smallest thing and turn it into a massive, you know, OK, so he's not at home, so he must be out doing the crazy thing and the next day he was like, 'Yeah, I was fine, I was probably just asleep', or something. I don't know, maybe he was or he wasn't but that's, you know, it's always been crisis and it's always been drama, it's always been, Oh, something's odd so everything must be put on hold until I find out what it is.

Worrying about someone who is unwell is natural, but it can also take its toll. People described being 'consumed by worry and anxiety', feeling panicky at times, or that life was full of 'crisis and drama'. Some also felt guilty about 'not doing enough' and some felt they may have contributed to the mental health problems. Many said they were always on 'alert', that worry was always there in their minds, and that they constantly looked for signs or symptoms of their loved ones getting better or worse. 

One carer felt like (after a hard day at work) she needed to 'walk on eggshells' at home. Others found that when they gave up work and spent all their time with the person they cared for it could lead to more tension and arguments. Some felt they alone had to 'absorb' all the stress of the situation themselves, which can feel very unfair. 

 
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Ramila thinks it is unfair that carers absorb all the stress without enough support.

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Age at interview: 56
Sex: Female
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I feel angry with agencies because I feel that they bring out regulations and laws and things but they're not really, really prepared to help carers. I've had quite a few experiences where I've, you know, I suppose in the end I'm quite angry with the primary care system, with the GPs, angry with social services and angry with mental health services. I'm angry with all the agencies like pension services, all the people who are front line workers, as well as people who actually make decisions. Angry with them all, and yet I do have understanding because I, in my own life I can, I sometimes have been a front line worker. I understand regulations about confidentiality and all that but it's, doesn't stop the frustration and the emotional trauma that it causes.

But I also needed to take that anger out, that this was the only supporting visit of someone else coming in from a professional point of view. And compared to all the time I spend trying to keep my brother well in the community, alive, why could they not see that 10 minutes once a month meant so much to me? But they refused and I've had to, -and I suppose maybe I was wrong, you know, because one just doesn't know whether it's the wrong thing to do, or right thing to do. And my brother has survived. I have survived. Has it made any difference? I suppose I've taken all our stress. And am I able to take the stress? Yes. At the moment I am, so maybe they were right. But maybe I was undervaluing how much stress I can take. But is it fair? And I think, no, it's not fair.

A big worry for many carers was about who would look after their loved one when they themselves were not around anymore. One woman who cared for her husband felt that she could not have a peaceful death if she died before him.

 

She worries about who will care for her daughter when she and her husband are gone (played by an...

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Age at interview: 69
Sex: Female
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Because, I mean, the thing that worries her dad and I is, I thought, -what happens 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. Quite 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.

A couple of people worried less when the person they cared had a good period or was looked after in hospital. For others, getting important life issues sorted, such as seeing your children getting married, could reduce levels of worry and stress, and some had learnt how to ease their worries (see the section on 'Looking after yourself and getting help')

One women found it patronising when services try to teach you how to express worry, and others said that the ways of expressing worry, stress or grief in their culture may sometimes be misunderstood (see 'Services and minority ethnic communities').

 
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Having other people talk about 'how to express emotion' may be insulting to carers.

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Age at interview: 51
Sex: Female
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I mean they did talk about how to express emotions and stuff like that, that also, I've realised, is, sort of, it's an insult really to carers because, -I mean I've asked so many people the question that, imagine, -I mean, your son, your daughter has had an accident and you hear that they are in intensive care, you will be there all day, you do everything in your powers, even if you can't get in, to support the situation and it's the same thing, the fact that they're mentally ill doesn't make them different from anyone. Every parent worries as to why my son can't eat for himself or doesn't know when to wash and somebody who's maybe clean and articulate all of a sudden deteriorated to the point that they didn't even know they have to shower and so it's all part of, -it's not a matter of you being 'how to express' whatever. But it's the same reaction to any situation psychologically, because you know this person from wherever and you know that whatever the situation they're in, it's completely not them. So you want to do everything possible to help them. You know, but, -whenever I hear my colleagues talk about 'how to express emotion' I always correct them, I say, if your child is ill, what would you do, your son is mentally ill, or mental illness, anything else, what would you do? So it's the same thing these people have, and it's only them that know this person well enough to able to be worried.

Frustration and grief
Many carers expressed anger and frustration. They said living with the symptoms of mental health problems or the side effects of medication, and not having enough support to care, can really 'get on your nerves'. A couple of people said disagreement within the family about treatment was another source of frustration. A number of carers were angry and frustrated with the health and social services, saying they felt let down, badly treated, that they were 'hitting their head against a wall' and that this led to stress and trauma.

Some felt patients' lives were being wasted in hospitals and one woman said she 'screamed and howled' in her car driving home from the hospital after her father was sectioned.

The ways relationships change due to mental health problems sometimes lead to grief. One woman felt she had lost 'the man of her dreams' and now needed to embrace a new husband, one that she would not have chosen to marry. 

 

Anne is grieving because she feels she's lost a husband.

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Age at interview: 40
Sex: Female
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A completely different husband that you end up with, and one that you wouldn't choose to marry. Nobody would choose to live with all of that. So a lot of my tears has been grief. Letting go of the old husband that I had and embracing the new one. And then, -well because I've got a faith, believing that he will get better in the future. But having to face every, you know, day to day what's happening. And I've just learnt that grief is the word for it. And that some people don't understand that, family or friends, so I just grieve to myself. And I've learnt to share with the right people. So some people that I would share with and say, if I was upset or cry would say, 'Anne, you're being negative. You're not supposed to be negative as a Christian, you must pull yourself together and, you're being emotional and, you're an emotional wreck'. And I think, 'Well, no if you look at the Bible, in Psalms David cried all the time'. And it, a lot of the Psalms start with, 'My tears have been my food day and night. I'm tearing my clothes, I can't cope anymore', but at the end of the Psalm, by the time you get to the end of the Psalm it's, 'Thank you Lord, I've got you, or I'm looking to you for help', etc. So I think, no, God wants us to embrace our emotions. So I've learnt by myself, if you like, to think, well I'm not going to share with that person anymore because they're actually a bit flaky, and just, you know, share with the, with the few right people that actually understand that it is actually a grieving process because you have actually lost that person.

Those caring for someone with dementia felt sad that there could never be any improvement, only deterioration. Others grieved that the person they cared for would perhaps never be able to fulfil their potential. One woman said she grieved that she would never be able to do 'the things sisters do' together with her younger sister.

 

Jane grieves that her daughter will never have friendships, get married and have children (played...

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Age at interview: 69
Sex: Female
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But she missed out on all her teenage, -as I said before, she don't even have a relationship and that really gets to me as well, that really saddens me, because I thought, if she had a, -if she was all right she'd have, maybe have a family, as a matter of fact she was saying it to me yesterday, she was saying this yesterday, I said to her, 'If you were', -because she's still at home, I said, 'If you were all right, you wouldn't be at home', she said, 'No I would have a family by now and a house'. I said, 'That's right, you would', you know. So this really saddens me, it really makes me sad and I think it makes her sad as well, because she talks about it, that means that she's thinking about it, You see and you lose your friends, your friends, not me, her, I mean her.

Sure.

Yeah her, not me, she knew they don't bother about her, don't bother again. So she sees me now as a friend, I am the friend. I am the friend, because everywhere I'm going she's there. I don't work now, I don't work now, I'm retired, but we go together, because she sees me now as the friend you see. And all these things really saddens me, it really does, because -sometimes I do weep a little bit, in a little corner, I weep for her and I thought, you know, this is her life. And then, but sometimes again I don't, I thought, well if this is what is supposed to be well what can I do?

Being unable to take part in important events with family and friends abroad, such as funerals, was another source of grief and sadness. 

 
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She is sad she could not be with family members in India when they were dying.

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Age at interview: 65
Sex: Female
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I've had two deaths in the family in India. Last year in November I lost my sister, then about, on 19th of May, I lost my sister-in-law. So the fact that I can never see these two people again has made me very, -I do feel very depressed when I think of all that. That is when I'm thinking of that. I do feel very depressed that I could never go. My sister was on dialysis, was a very high diabetic, she got it after I came here, the dialysis and I do realise that I couldn't leave her to go to see my sister. And that is heavy on my conscience. That, you know, once a person dies, it's all over. But I know it would have meant the world to her if I had gone at that time. But I didn't. My sister-in-law had bone cancer, and she was very ill. I used to, every Friday, is an auspicious, like you have, the Christians have the Sabbath, Friday is the Sabbath for Muslims. So every Friday I rang her. She was very happy. She would say, 'When are you coming? When are you coming?' And I would talk to her and say, 'Don't you worry, one day I'll just be there in front of you', and I would just turn it the other way, but it gave me great consolation to hear her voice. And then, on the Monday night she took ill, and within three days, she was dead. But that is life, I realised, but I'm sad about all this, but there's nothing I can do.

Carers' mental health
It is natural to have ups and downs, but living with constant stress can affect mental wellbeing. Some carers described lack of motivation, feeling helpless, 'fed up', that there was 'no light at the end of the tunnel' or said they felt a lack of purpose. Some felt that the situation had 'knocked the confidence out of me', that they felt insecure and generally unhappy. Two women, both mental health nurses, felt helpless because while they could help many patients, their own relatives were not getting better despite their help. Several of the carers we talked to were, or had been, on antidepressants, and some were receiving counselling or Cognitive Behavioural Therapy. Several others suspected that they might be depressed. A couple of people said that having more than one person on antidepressants in the same household would be 'just too much'. Others had not really discussed feeling depressed with anyone.

 
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Aiko was reluctant to take medication for her own depression.

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But one thing, I wasn't very happy with the decision the doctor make with any patient when they come to see them, here's tablet. Because obviously, “You're crying in front of me, and the stories what you told me is obviously you're a depressed person, take this, try some”. But I wasn't in denial, just I wasn't, -how can I say- I wasn't ready, and I thought I don't need two people being, -taking antidepressant in my household, and I didn't know how the medication would affect me. But because so many years I put myself on the side and focused on, about my husband, although it was related to our life together, so much things I had to deal with, and I completely forgot about my health, well being.

Others again had, at times, worried about their own mental health, either because of the stress they were under, or because they feared they could have inherited a mental illness. One person emphasised that services should be in place to prevent mental health problems being passed on from one generation to the next, whether they are genetic or not. Another carer felt lucky she had avoided the serious mental health problems of three other members of her close family.

 
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Raye has depression and an eating disorder, but feels luckier than her father, sister and brother.

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Age at interview: 28
Sex: Female
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I don't know how much genetics is involved or how much of this is environment but, you know, from my dad to my brother to my sister, if depression is the least that I get and an eating disorder that I can look after, then I feel pretty lucky to be honest. My brother so far, my younger brother is the most normal of us all in that he just gets on with his life. But I've been trying to move out of home and can't really afford to, and just try and figure out what I want to do with my life and things like that. Sometimes I feel like I have to live for the three of them plus myself, you know, I feel like a big super hero and a lot of my stuff used to centre around, I need to earn enough money so that I can build a hospital or I can build purpose built accommodation for my brother, my sister and my dad so I know they're OK because they all live in crappy council flats which I really don't think help. But it's always been, -it's always been that sort of thing so when I got depressed I just, I couldn't cope with my job, I was finding that stressful. I was finding living at home stressful because I don't get on with mum and I was finding, -I think they'd all just done their hospital thing or I think my dad was about to get ill and I couldn't really cope and just it felt like a bit too much so I was on anti depressants and I had counselling and then I went to OA, this is 2006, I went to OA so I was, 2005.

What is OA, sorry?

Overeaters Anonymous. 12 steps like AA but for food because that's how I cope, I eat, I just binge is what I do. So I don't, -I think maybe it was just loads of things at that point in my life and I just really couldn't cope anymore, I just kind of broke -and I didn't tell anyone until it was over which is what I always do with stuff like that because I don't feel they can handle it and I'm trying not to do that so much at the moment, you know.

See more information about depression.

Carers' physical health

Carers believed that stress, worry and mental health problems could also hurt your physical health. Some of the carers we talked to said that their physical health had indeed suffered. Being tired, exhausted and lacking in energy was common. Lack of sleep was also a frequent problem, and one woman explained that her husband's depression made him restless at night, which kept her awake, which in turn had made her high blood pressure worse. Others talked about aches and pains, respiratory problems, tensions, and stomach problems.

 
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Rani's husband keeps her awake at night, which affects her blood pressure.

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Age at interview: 62
Sex: Female
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And he talks without any meaning a lot, he washes his face and hands for a long time, he's like that, he asks all the time why about what is here and why. For lunch time I serve lunch, after having lunch he walks around in his room. Sometimes he shouts in the night and you know I am also sick and he wakes up in the night and shouts and talks and I can't sleep. After I wake up I can't sleep and I have high blood pressure, at that time my heart beat is fast, heart beat is going fast and that disturbs my sleep.

Other health conditions people linked to stress were: weakened immune system, asthma, bladder weakness, eczema, migraine, heartburn, inflammation of the mucous membrane in the mouth and depression. 

Many carers discussed the need for carers to look after themselves, take time out, find help and find ways of coping with stress and worry. The ways carers coped with stress and worry are described in 'Getting the balance right'.


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Last reviewed September 2018.
Last updated February 2013.

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