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Mental health: ethnic minority carers’ experiences

Taking control - difficult situations and medication

Making sure people are safe
Carers said they at times needed to take control over difficult situations because the people they cared for could not look after themselves, or because they didn't admit to being unwell. Many needed to make sure the person they cared for (and others) were safe because they could make mistakes like accidentally leaving gas or water taps on, or leave the house without locking up. Others made sure their relative brought keys and mobile phones with them when they went out and that they kept their handbag or other belongings safe. 

During difficult periods, many wanted to stay with the person they cared for. These participants thought it would not be safe to leave them alone if they were very unwell, upset, or hallucinating. If they could not stay with the person, they 'travelled backwards and forwards' to 'keep an eye on things'. Several people said that their relative tended to 'wander about', and some had gone missing for days.

 

She had a terrifying time when her husband went missing for four days.

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Age at interview: 72
Sex: Female
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There was this and he got lost actually for four days. He went missing. Yeah, which was terribly worrying. He went missing from a friend's house. We went visiting and they had a little bit of a tiff and he just walked out of the front door. And we thought he was just going out and coming back, and after five minutes it sort of dawned on me that he wasn't coming back for some reason. So I went looking for him. And of course, the neighbourhood is one that I don't know very well, and she unfortunately lived in a house which was like at crossroads of four or five roads. So when I went looking for him and he wasn't in sight, I didn't know where to go quite honestly, because there were so many roads that you could go down. So I thought maybe he was trying to make his way home, so I left. And I came back and he wasn't at home. And then I visited the pubs that he knew around the neighbourhood and he hadn't been there. And he didn't come back, and so, by eleven o'clock at night I had to report him to the police because he wasn't anywhere that we knew, you know. And he was gone for four days, in north London. So, that was a horrible time I remember, my daughter and I had really a terrible time because we were looking everywhere. I was, I didn't dare really leave the home in case someone phoned or he phoned, and she went looking everywhere and the police knew about it but I don't think they did very much. And the CPN did send out a fax actually to all hospitals in case -and he was actually taken to one hospital, the [name of hospital], and he went absconded. They checked him out, because he was found in the street, I think, and then he went, they left him on a trolley, because they wanted to check him again because he couldn't tell them his name and he couldn't really communicate anything. And he went missing for another 24 hours from then. So.

They didn't detect that he was in need of help?

No, no. They didn't. In spite of the fact that there was a fax. And in spite of the fact that the police were supposed to have a computerised, you know, -that he went on the national computer actually, but when they picked him up and took him to hospital, nobody had the wits to check whether there was anybody of that description sort of, reported missing, you know. And so we spent four days really, four days which were horrible because, you know, when you don't know what happened to somebody who is not quite capable of navigating the streets and the transport system and all that, it's worrying. But then he turned up at the friend's house on the Friday night. And they phoned me and I picked him up from there laughs. And he was a bit dirty, dehydrated, had lost a bit of weight, but no harm had come to him, somehow.

 

Anne says she still needs to look after herself even when her husband goes missing.

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Age at interview: 40
Sex: Female
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One day I was working and I was 16 miles away. And he really, really -ran off and my sister rang up and my daughter's really upset. And I rushed back and then, and I got back and I done, -hadn't had anything to eat all day. So I said, 'Oh I'll just quickly do a jacket potato in the oven and then we'll go look for him'. And I said, 'Oh I'll quickly hang my washing out as well'. And she said, 'How can you eat and hang your washing out?' And I said, 'I've still got to do it. No one is going to come and do my washing and my ironing, and cook me a meal and clean and whatever, or sort my finances out. I've still got to do all of that, you know. And if I don't eat for 10 minutes then I'm going to be in hospital myself'. So, you learn that you have to still, -it doesn't mean you don't care or anything, but you've still got to do your day to day chores, to carry on.

Mental health problems can affect patient and carers' social worlds more widely, and some talked about needing to calm their loved one down so as not to cause problems, or avoid conflict with neighbours and friends. But most of the carers said their relative would never be aggressive or violent. 

 
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Her brother is never violent when he is unwell, but when he doesn't want to talk to her she...

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Age at interview: 56
Sex: Female
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He gets all these voices and he keeps them to himself. I think he's quite protective of them in a sense although they're quite annoying voices, quite a lot of times. He doesn't want to share what is going on. But the few times he'll share. And last night he had some kind of, -bit of psychosis 'blip' I think, and I was in another room. And he was just shouting and screaming in the room. And then, you know, I asked him what was going on, and he tried to explain and, but he was very angry. His face gets very angry and, but you know, it can be very fearful. Fortunately, I've been with him long enough, I've gone through these sort of incidences a few times, so I know that I don't fear for myself or for any violence or, -and I also possibly know how far to stretch him. I would know when to stop. 

Like I was saying that my brother rings me every morning, or if I, nowadays he's, -for the last year or so he hasn't been well, physically, for some problem but, so he doesn't manage to get up early enough sometimes. So then I ring him. And this morning I tried to ring him and he wouldn't answer the phone so here I am, sitting here. And lots of, I mean, these sort of things have happened so, over the last, past month I've decided I'm not going to worry so much about my brother really. That I've worried enough, I can do the very best, -it may not be good enough- and leave it at that. But today it, -anything could have happened.

A few of the carers mentioned that their loved one could get violent when unwell and emphasised that it is important to understand such situations from the inside and not judge from the outside. Some had at times needed to protect themselves or other family members, sometimes by calling the police (see 'Services in the community'). 

Carers also said they sometimes needed to protect the person they cared for against bad treatment from other relatives or from services. People made comments such as 'if I was not around, would checks be done, would he be safe?' 

 
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Sophie worries that her sister is taken advantage of in the residential care home.

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Age at interview: 42
Sex: Female
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So it's frightening, it really is frightening because when they're out there in the system, they're taken advantage, -they have a disadvantage anyway which is their disability but they're even more disadvantaged when this, this system that is there to protect these vulnerable people is not protecting them at all in many, many ways in many forms. Her money used to go missing, it was just stuff like that, they never bought her any clothes and the things never fit her and just those basic things that would make her life a little bit more comfortable were not happening, were not happening. Who's responsible? I don't know. Where do you go? I don't really know, to take this further. As I said, it's not going to stop there because I still have to keep on fighting to find out how things can be improved, not just for her but for other people.

Some felt they needed to make sure their relative was safe in hospitals (see 'Dealing with hospitals'). One carer had even 'smuggled' her relative out of a general hospital ward because she thought staying there would be detrimental to him.

Dealing with difficult behaviour
People with mental health problems sometimes act in ways that those around them find difficult to cope with (see 'Relationship to the person cared for'). 

The carers we spoke to talked about everyday irritations, such 'endlessly walking up and down', shouting, talking to themselves or asking the same questions again and again. Some said they often ended up arguing with the person they cared for. 

 

He tries to avoid arguments by talking to his wife in a calm, gentle way (recording in Gujarati).

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Age at interview: 55
Sex: Male
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Regarding the caring that you provide can you describe a typical day to me? What is a typical day like for you?

My typical day if we sit the two of us at home, then both of us will argue about something or another. There is nothing worth arguing about, it's nothing in it. It's usually about eating. She has diabetes but will not like to eat. Instead of getting up at 6 am, today she got up at 5.30 in the morning and she kept working and at 9 am she had an appointment for her diabetes. She did not worry about the time but starting arguing. To get my Mrs out of the house there are arguments and to get her back into the house there are arguments. If someone came and sat in the house then she does not worry. 

So how do you have to help?

I have to keep reminding and nag her. If I keep doing the nagging then she gets depressed, she starts crying and her mind does not work. I have to say gently that, 'I am not telling you off but I am telling you about the time'. I tell her, 'Look at the time. We can come back and do the housework when we get back. I do not want you doing the work. We can do the housework when we get back'. When I say that she says no you do not need to do the work I have to do the work. If we do not go out of the house then its sayonara [everything is ok].

Others talked about how their relative talked irrationally or had paranoid thoughts.

 
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As a teenager she was 'freaked out' by her father's irrational thoughts.

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Age at interview: 28
Sex: Female
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I was a teenager, whatever, and he came to, he came to visit and there was no one else in apart from myself and he came over and he was actually quite strange and this is when I worked out the paranoia thing. I'd never been told what he had or what was going on and he came over and he was asking me if I knew anyone called Paul and how I knew them and what they did and all that sort of stuff and he told me, 'You can never marry someone called Paul', and all this sort of thing and I'm still freaked out by that a little bit, I know without a doubt I will never marry anyone called Paul because this thing, -I know that there's nothing it in and I understand that it's my dad's stuff and it's just the way, what happened, what he heard, whatever but I was quite freaked out and he kind of looked a bit wild. 

The next day he came back and I realised afterwards he made a real effort to appear normal and he was asking me, do I prefer him the way he was the day before or the way he is today and I didn't really know what to say and I said, 'Today', because he was a bit, a lot calmer and there was none of this, 'Don't marry people called Paul', type of thing. So I've always, I don't know, always found that hard because after then I realised the little things that my dad has with his paranoia, like he thinks people have been into his flat and they haven't so he leaves notices up like, 'The police are watching you', and, 'The milkmen aren't really milkmen, they're the police and they're watching you', he has all these notices up in his flat and I realised that maybe it wasn't what he thought it was or what I thought it had been. 

When very unwell, some people talked about suicide and their carers said they had to monitor their behaviour closely. Some described what it was like dealing with emergencies and suicidal thinking or suicide attempts. 

 

As a carer, she is clearer than the professionals that her husband experiences strong side...

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Age at interview: 40
Sex: Female
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So he's on all this really strong medication, which I live with the side effects of it 24 hours, 7 days a week. The psychiatrist doesn't live with it. When he's in crisis as they say, or he's really bad, I'm the one that lives with it. I know when he's really bad and I know when he's not so bad. And I only try and call for help with the crisis team or the health, when I know he needs help. I wouldn't be wasting my time or theirs if I didn't need help.  And then they'll go in and see him once every eight weeks or, do a so called assessment, see him for five minutes. And that really, really frustrates me then because I think, your assessment's crap basically, because you've seen him for five minutes. I've lived with him for the past eight weeks. I've heard how many times he's talked about suicide. How many times he's got all his tablets out. How many times he talks about killing himself and this, that and the other, and giving him another set of medication isn't helping, you know. They've got side effects, strong medication. They're not doing anything. He needs different kind of help. And then so, sometimes they'll go, 'Oh what do you think?' And so I'll go, 'Well I don't think the medication's helping. I think he needs more one to one help'. Then they go, 'Well anyway, Adam, here's your tablets'. And you just think, 'Why are you asking me?' It's like a slap in the face.

People had found ways of interacting with their loved one when they were unwell, 'catatonic' or 'catastrophising'. People said it is important to keep calm, to speak gently without raising your voice and explain clearly what is going on and that 'the world is not coming to an end'. Some people said keeping eye contact was helpful, but for others this could make their relative more agitated. 

One woman said her relative could feel very helpless and said she used to 'remind him I am here' to support him, which would help calm him down. Others said it helped to leave their loved one for a few minutes or an hour and then return to the situation. 

Some carers said they were unable to 'control' their relative when they were unwell. Despite having 'tried all methods' some said hospitalisation was sometimes the only way to make sure their relative would not be hurt or get worse.

 
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While her father can present well to doctors, she is used to having him sectioned when he needs...

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Age at interview: 28
Sex: Female
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How did that feel to section, to have to section your dad?

It's hard, but now I feel like I do it and I don't really think, I'm detached from it because I know what it's about and back then it wasn't really explained to me, the powers I had as a next of kin, so they would end up staying mostly the full term or near enough. My brother won't really have me as a next of kin. My sister, it's not really been that bad but with my dad, it's more often than not my dad that I end up doing it for. And that time was particularly bad because when he gets ill he goes running round with not many clothes on and things and he's not a danger to anyone but himself but we'll find him in the park at four in the morning doing his exercises naked and all that sort of stuff and, you know, he keeps getting picked up by the police and all that sort of thing. He's on to the game, he knows, they're all very smart and I think when you have an illness like that you know how to play the game. He'll turn up at the doctor's appointments and they'll appear to be, you know, normal and OK.

Looking after medication

Most carers thought medication was important in treating for mental health problems. A number of the carers we spoke to said they collected prescriptions and medicine for their relative to make sure he or she got it. Some arranged injections and other consultations with GP surgeries or hospitals, and one woman, together with other relatives, brought her husband to hospital every day for his medicine. Others said they needed to remind the person they cared for to take their medicine, and some would ring every day to check.

Some of these carers said it was 'a struggle' to get the person they cared for to take the medicine because of really unpleasant side effects or because they thought they didn't need it. A few of carers found it hard to know how much to tell their relative about possible side effects because 'it may mean he won't take it'. 

Not taking medication could lead to relapses, and several carers said the person they cared for could lose control or get violent when they stopped taking it. Some said they noticed signs of their relative getting worse when they had missed their medicine for a couple of days. 

 

Amar felt awful when she had to have her mother sectioned because her mother refused medication,...

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Age at interview: 51
Sex: Female
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She refused to take medication and I wasn't strong enough to persuade her and she wouldn't take it anyway and in the end I had to have her sectioned, which was horrific, where they had to physically pick her up and take her, kicking and screaming.

How did that feel?

That felt awful. It felt terrible. However, when she got there she just did' like if she's come on a holiday and she treated the place, she sort of went back to work, she was, what she was doing was before, -she's a very regimented woman, she had a schedule and nobody can change it and that involves her self care, prayers, exercise and walks etc and she was walking in the park near drug addicts, alcoholics and if they say anything and she in her mental health, she would say things and I was always worried about her and she was letting people in, who she didn't know and then she went back to her work, who got rid of her, forced through the security system a few times, so a number of things were happening and she wasn't letting family in, the other kids.

 

When his son stopped taking his medicine he ended up hitting Nick.

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Age at interview: 74
Sex: Male
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Now this I learned later, that tests, if someone, an incident like that taking place, it's for them to -the clinician's responsibility is to do a test to find out why this boy reacted, or anybody reacted. If they had done a test, then they would have found out that he wasn't complying with the medication. That is the reason for this violent behaviour. When it happened the second time, about a year later, something like that, same sort of thing, he hit me on my head and there were bruises' and then he ran out without me. Then my wife was there, my daughter wasn't there. My wife said I will call the police to be honest with you, he had carried a big bunch of keys and threw the keys down. Ran out of the house, beat up a fellow who was doing his gardening innocently, and then that fellow has rung the police. We also had rung the police. When the policeman tried to get hold of him he had a swing at the policemen. I think the policeman avoided it, the blow, and he was in hospital. Sorry he was taken to the local police station. Police came and said he's with us now etc. This is a while ago. I sent him something to eat because he hadn't eaten, you know. I thought it was maybe this. So later on we found, -when this happened he was living with us-, upstairs. I went and looked in the room, there's about eleven days medication untouched. That's the reason for this. There's a thing called level test they take to see how much medication is in his blood system. They know whether he's been taking it or not. So that, then I told the consultant this is the set up, then I suppose, I don't know whether she agreed or not with my reasoning. Anyway, we knew it was the reason, because it happened subsequently.

People also talked about how they also needed to take control over medication for other conditions, such as diabetes, because the mental health problem made their relative forgetful. 

 
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Despite her own ill health, she needs to look after her husband's physical health as well as...

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Age at interview: 62
Sex: Female
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Yeah, they have all the list in the file, now that's going on continuously. He is sick like that and I'm also looking after him, doing whatever I can and whenever I can't I don't know. Sometimes I also become nervous. I have no blood in my body (anaemic)'

When pain comes I put ointment on him and take him to the doctor, when he needs to go to see the doctor I go with him, and if he has an appointment at the hospital I'll go with him. Last Friday he had an appointment at the hospital for an endoscopy, I took him at 9.30am, so if he's sick she can take him to the hospital, that won't be any problem. At the hospital they gave him three injections in the arm, they did the endoscopy then his stomach was full and he started to feel some pain. Then they called the head doctor immediately. They took him on his bed to the recovery room but the pain was the same, his bladder was full, somebody said to go to the toilet, he went to the toilet but the urine didn't clear and then he started to shout then he said to me go and take' When I came I saw that his blood pressure went up to about 200 and his heartbeat stopped. After that the head doctor came and gave him six injections and saline and also oxygen. After that the blood pressure became normal, after all that, at 5.30pm somebody called from my home and I wanted to go home but I said, couldn't go home alone, 'You come here and get me, I'm sick myself'. But on that day Allah ordered me to be well. [Weeps]. What sin did I commit?


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Last reviewed September 2018.

Last updated November 2010.

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