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Mental health: ethnic minority carers’ experiences

Relationship to the person cared for

When someone gets a mental health problem, they can change a lot as a person. Their relationships to people around also change and mood swings or difficult behaviour can take their toll on relationships. The carers we talked to agreed that compassion and love was crucially important when someone gets ill, and that good, supportive relationships are key to help the person who is unwell to get better.

When people change
Some people described how the person they cared for had changed so much that it was as if he or she had become a different person. Some said their loved one became so withdrawn that it was impossible to 'know how their mind works' or that 'you might as well talk to a brick wall'. Carers can find the lack of communication or involvement challenging and even hurtful, making the relationship difficult. In the cases where the cared-for did not know or accept that they were unwell it could be almost impossible to talk about the situation.

 

Wei's husband is not communicating with her and she finds that very hard (recording in Chinese).

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Age at interview: 61
Sex: Female
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He doesn't need to go back to hospital often. We have no idea what is he thinking, he does not speak to any of us. All day long, he's just smoking, drinking tea and sleeping. Whatever we ask him, he just said, “Ok”. He doesn't say anything. I have no idea. It's hard, truly, it's very hard. When there is a problem, we'll go to the doctor. We have no idea how to take care of him. Let's see? It's hard. He really doesn't speak to you, even now. When asked him, “How are you feeling? Ok or not?” He just simply replies, “Alright, la”. That's all. He doesn't tell you how he feels, never. He doesn't like to speak to anyone. It's hard, it's complicated. Now, maybe the grandchildren are older, maybe he is happier. Sometimes, when friends came to visit, he would have tea and sit with them for about 10 minutes.

Carers are often with the person who is unwell almost 24 hours a day, and some described the relationship as 'intense'. Repetitive, irrational or passive behaviour; dependence; loss of inhibitions and mood swings were all described as causing irritation, frustration, anger and even fear. Such behaviours can lead to arguments, quarrels and unhappiness. 

 
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Ramanbhai did not initially notice it when his wife started to change, and now they have very...

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Age at interview: 62
Sex: Male
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From your experience, why has it been so hard?

The difficulties stem from having different thinking and from her point of view and how her thoughts began to differ from mine. I was not to know. If your thinking is different then it's bound to be difficult. Anywhere you go; if there is different thinking in the home, then there is no enjoyment. There was never any enjoyment.

From the beginning?

No, no, from when the illness started. It must have been from a long time but it was not known then. After 1972 -and what happened after 1997 was that it got worse for her. After that, little by little. It must have been there for years. Right. We did not know then. Two years ago, the doctor said it looks as if this [the mental health problem] is quite old. It came out slowly but I did not notice it. I kept bearing it [the problematic behaviour] and putting up with it, carrying on with it. I thought so, that must be it, her thoughts are like that.

 
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Rani's husband has started to shout and talks to himself, which is frustrating, especially at night.

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Age at interview: 62
Sex: Female
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He's been sick for two or three years. He was well before and he worked, I asked him why does he shout? Why are you like that? Why do you talk too much? I don't like it. I talk a little and that's what I like. Lots of talking is not good and now I realise that he's not well. That's why he talks too much, he talks unnecessarily. When he sits alone he talks to himself, he says that he hasn't done this or that, he shouts unnecessarily. I tell him not to shout but to sit quietly and it will be OK. Sometimes he understands and sits quietly.

Does he always speak like that?

Yes, he talks like that and sometimes he gets angry, he gets angry in a very short time, he talks to himself when sitting alone'

He can't sleep and talks in his sleep like somebody is trying to hit him, he thinks somebody is trying to come to him, he talks so much then I said why are you talking like that? Sometimes I say I didn't speak to you, please go back to sleep. Then he says no, no, you spoke to me, look my pulse rate has gone up, blood pressure. How could I sleep? Then he says OK, I won't speak again, how could you understand him? He does this three or four times a day, if he watches TV or reads some books that would be OK but he doesn't do that, he just talks to himself like you didn't iron my clothes, you didn't ready it for me, don't worry, don't talk so much, it will be ready on time. He says OK, I'm sitting here.

 
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After her husband got ill, they found it hard to understand each other.

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Age at interview: 62
Sex: Female
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What would give you more help and what makes things bad?

Whatever I can I do it myself, if somebody helps out my family will go peacefully, if the husband and wife has an understanding there will be no problem in my family. If he talks too much and I also shout at him then we'll have a fight. So if the husband talks and the wife stays down that will be OK. Sometimes the husband has to understand that his wife is saying something but it's better for him to keep quiet, then things will be OK, there will not be any trouble, that's all.

Mental health problems and side effects of medicines can change people's energy, mood, humour, emotional wellbeing and sex drive, all of which can affect close relationships. It can be hard to talk to close relatives like your mother or child about such intimate things. For a carer it can be difficult to 'continue as usual' when you have seen a loved one in undignified situations, such as breaking down, becoming incontinent or being arrested. Some carers found it difficult to have a 'normal' conversation with the person they cared for, without 'always looking for signs' that something could be wrong.

 
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While wishing for normal relations, Raye feels she needs to check up on her father and sister to...

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Age at interview: 28
Sex: Female
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I think it would be a lot easier to just even to sit with my dad without having to scan the room and see if I can see his medication and see if I can see the date to see when he picked it up. I wait for him to go out of the room and check the box to see if he's, -all the things that I don't, I don't say those things, how can you, how can you say to someone right, have you had your medication today and have you been taking it consistently because I'm not his parent and that's what I've been trying to be. 

My sister, it would be nice to see her relaxed and it would be nice to not have to go and check to make sure she hasn't done anything silly with the money. It's all the checking and the remembering of conversations and, you know, it would be nice to, - it would be nice to see everyone more as well. Last time we were all together as a family was at my granddad's funeral in February and my mum and my dad, my sister and my brother and my younger brother, we were all there and I haven't, you know, had that, - us all in the same room together at the same time since I was what, I don't know' must have been 10-11 and I think maybe the relationships with my mum would be better and maybe we could do stuff as a family and it would be the way it's supposed to be in a natural order which is I'm my father's daughter, they are my brother and sister, I'm not their caretaker, I'm not their mother. I try with my dad, we go to the cinema every now and then and I try and arrange to do stuff with my sister but for me it's, it feels like such an effort. I think it would just make, it would just be so much easier.

Changes in role and relationships 
In all cultures there are expectations and rules about how mothers, fathers, children, partners, spouses and other relatives should relate to each other. Although this can vary from family to family, or between generations, these rules guide how we behave towards each other. For example, we expect parents to be figures of authority and look after their children, and for husbands and wives to be able to rely on each other's strength and support.

Roles and expectations often change when someone becomes a carer for another member of the family. The usual roles of parent and child can be switched (role reversal) so that a son or daughter becomes more like a parent, and the parent more like a child if children take charge of medication or daily routines of parents (see 'Taking control - difficult situations and medication'). Those caring for a child may have to come to terms with never being able to have an adult relationship with their son or daughter. 

Becoming your parent's carer can mean that you need to think about how the authority in that relationship will change. Likewise, having to take on a 'parental' role to a partner or spouse can also feel difficult, and it can change the nature of the relationship.

 

Anne's feels her role has changed from wife to that of nurse and teacher.

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Age at interview: 40
Sex: Female
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So it's, you just become this nurse - patient. Instead of husband and wife enjoying a relationship, it's nurse and patient, carer - patient, teacher - child. Your roles completely change and you just, -every day I've had to, I've learnt to think, 'Right, what am I today?' 'I'm like the teacher and the child', if you like. I'm spending hours trying to train him to think rationally or, 'I'm the nurse today, you know, he's bed ridden', and he's in bed and can't get out, so I take him his food, I give, make sure he's got his tablets. 'So what am I today?' You never, well it, most of the time it feels like you're not husband and wife. I'm not a wife. He's not a husband. I'm this, that and the other.

 

The dynamics in Nita's relationship to her mother have changed.

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Age at interview: 46
Sex: Female
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Yeah I think on a personal level I was almost robbed of something that was really fundamental to me. You know, to lose a mother, and to become the mother of somebody, and the whole dynamics change in our relationship. And at times I was really angry with her, because I was saying things to her, when I didn't understand the illness I was quite, I wasn't very nice to her, because I was saying you're doing this on purpose, and why are you doing this? So our whole relationship has gone in a different way to what it could have done.

 
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Pooja's husband used to be the provider but now follows her around 'like a child'.

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Age at interview: 52
Sex: Female
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I told them that at times, when at home, I got agitated when he kept on following me like a child. If I would go upstairs, he would follow me upstairs, if I come downstairs, he would come downstairs. 

Just like a child. 

Yes, if I would go to garden, he would follow me in the garden, just like a child. I would think and compare that there was a time when he was used to be a supervisor over five to six workers at his job place and now he was jobless. 

Did he stop working? 

He has had no job for the last 12 to 13 years. That has caused us lot of problems. Then he started going for counselling to learn bit by bit. I had to accompany him all the time. The specialist sent him to the centre and asked me to join a carer group'

He used to look after us and now we look after him.

Some of the female carers we spoke to said that their husbands had been the main breadwinner and the 'head of household' before they got ill, but now the women 'can't rely on them' and needed to take on new responsibilities for paying bills, applying for benefits and 'making all the decisions'. Likewise, some of the male carers had to take on tasks that their wives had done before such as cooking and taking care of children.

 
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Pooja used to rely on her husband, but now the roles have reversed.

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Age at interview: 52
Sex: Female
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What impact your husband's illness had on your conjugal relationships?

A lot, I do not feel it that much but sometimes I feel angry when he repeats what he is saying just like a child. Later on I would realise and feel sorry about it but it does happen. 

You were used to rely on him and now he is relying upon you. 

It is opposite. 

Just like children. 

I feel that a husband is the leader of the house and mostly would suggest going out and seeing some family but I have to think about all such things and ask him to do these things and it is bit strange that he would not refuse. 

Because earlier he was the decision maker?

And now I have to take all such routine decisions. 

People caring for young adults understood that they wanted to do things other young people do, despite their mental health problem. These parents described difficulties in striking a balance between allowing usual parent-child disagreements and rebellion and being a responsible carer.

 
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Miriam understands that her young son might see her involvement as 'nagging' when he wants to...

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Age at interview: 51
Sex: Female
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We do talk, but the talk alone doesn't help, because he talks and then he goes out and does something else you know, and, - a bit like any relationship. He feels that maybe you've been, you're nagging you know, -and he's young and he also wants to enjoy his life the way other people do and I often tell him that you have to understand that you're different. If everybody want to drink maybe vodka you can't, because that has effect on you, you know, and, - but then maybe he forgets himself at some point and just wants to be a young person, so it is difficult.

Managing a changed relationship
When their loved one got a diagnosis this helped some carers to realise that the difficult behaviour was due to illness, which made it easier for some to understand and live with it.

Many carers we spoke to managed to have a rewarding relationship with the person they cared for, even if it was different from what they had expected. A couple of people even felt the relationship was better or closer than before the person got ill. Several of those caring for their child felt they were the best friend their son or daughter had.

 

It used to be very difficult to communicate with her daughter, but now they are friends (played...

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Age at interview: 69
Sex: Female
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Well, over the years, I must say - When she was ill we couldn't get close to her, because she just kept herself to herself, we couldn't even talk to her. We couldn't even talk to her, we couldn't get close at all, because she kept, lock herself away, she just isolate herself, so there wasn't much relation. It's we had to be sort of trying to get to her all the time, we had to try to get closer all the time, she wouldn't, you know, just kept herself away and not talking, isolate herself, so it wasn't good at that time either, the relationship wasn't good. It's we that tried to get to her, you know. But now it's different, it's a lot different now. It is a lot different now as I explained to you, we go together, we do all sorts together, I'm like her friend you know, not her mother. I'm like a friend, like her friend, oh yeah. And I'll put on anything, I'll call her and say, 'Oh come here', she's called Eileen, 'Come here Eileen, does this look nice?' She says, 'Oh mum, this looks really nice, I like it'. If she has anything I tell her the same thing, I say, 'Eileen, you look really nice today' and I add that too, so 'I like what you're wearing'.

Two carers, who both worked as mental health nurses, found that their roles as mothers and as nurses clashed when their sons got mental health problems. One said that 'looking after him as a mother and insisting that he takes his medication wasn't working'. In the end, she decided to concentrate on her role as a mother and leave issues of medication to the health professionals who looked after him.

We describe more about family support and relationships in 'Children, family and social life' and 'Support from family, friends and community'.


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Last reviewed September 2018.

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