Miriam - Interview 05

Age at interview: 51

Brief Outline:

Miriam carers for her son who is in his late twenties. He has been diagnosed with schizophrenia but she thinks what he has is drug induced psychosis.

Background:

Miriam works as a Nurse Practitioner (mental health). Originally from East Africa, she came to the UK nearly twenty years ago. She lives with her husband and her two youngest children. She became a carer at age 46.

More about me...

Miriam (51) lives with her husband and her two youngest children. For the last five years or so Miriam has been caring for her oldest son, Dominic, who has been diagnosed with schizophrenia and who lives nearby.

Miriam came to the UK to work as a mental health nurse in the late 1980s. At that time, Dominic stayed behind with his father in East Africa, but he came to join Miriam some years later. When he was 21, his father died and Dominic got very stressed and started smoking cannabis. It took some time before Miriam noticed changes in his behaviour. When he eventually went to the GP and was prescribed medication, he was reluctant to take it. Dominic was eventually diagnosed with schizophrenia, but Miriam thinks what he has is drug induced psychosis.

Since then, Dominic has been in and out of hospital a number of times. In periods when he takes his medication he is fine, Miriam says, but then he stops taking it, or he takes it while also drinking alcohol, which makes them ineffective. He also suffers from bad side effects which makes him reluctant to take his medication. While Miriam understands that Dominic wants to hang out with his friends and do what young people do, it is sad to see him go into a bad period when she believes he could remain stable on medication.

Since Miriam is a mental health nurse she had a lot of knowledge about mental health problems, which can be helpful. On the other hand, it made it difficult to juggle the role of health professional and the role of mother. Dominic sometimes complained that she treated him like one of her patient and that she 'nagged' him about medicine. Working in the same Trust where Dominic was a patient added to these difficulties, as her colleagues sometimes had information about him that was kept confidentially from her, and other times she would feel protective and finding it hard to treat him as an independent person within the same system as she was working herself.  Miriam decided she wanted to focus on her role as Dominic's mother. She was able to get his case transferred to a different Trust, and Miriam decided she would let the mental health team deal with his medication so that this issue would not put a strain on their relationship.

Today Miriam keeps in frequent contact with Dominic, she phones him every other day and he visits every Sunday. She says she always on 'stand by' and looks out for signs that something is wrong.  In the periods when he is unwell, Dominic can't really look after himself properly, so Miriam goes back and forth several times each day to make sure he eats, is safe (he tends to wander and sometimes gets lost) and that he keeps himself and the flat clean. 

Miriam recognises the importance of patient confidentiality, but she says that since becoming a carer herself she sees a need for finding ways of involving families better and for sharing information between carers, health professionals and those with mental health problems. 

Miriam gets good support from her mother, but she says as a foreigner, there is limited social support available. She is careful not to talk too much about the situation with her friends because she is aware that hearing about the same issues year after year may wear out the friendship.

Although she is hopeful that Dominic will see the benefit of staying on medication and be stable, Miriam worries about what the future holds for him and she is concerned that her younger children are affected and that they see caring for Dominic as an inevitable part of their future. 

Miriam thinks there is a need for more openness around mental health problems, and particularly, she says in African communities. People need to realise mental illness exists and that people can get better with the right treatment and care. It is also important, she says, that health professionals treat people as whole person's and take into account their cultural background.

Miriam has turned down opportunities for promotion because she doesn't want the added stress.

I mean, there's so many opportunities came in the form of moving on in my own professional development, but then -I didn't want to because you don't want to put yourself at risk if things go wrong and how are you going to deal with it and maybe everyday stress and, and because I know so many people always ask me, they always say, 'Oh you use your son for an excuse all the time', you know, because maybe there is some managerial post or something and they say, oh, and I say 'no'. And they always say, 'you always say that', but you have to put things behind you at time, but I can't, you know, because you don't want to put too much stress at work again, when you know that home is the same. So -that's one of the difficulties.
 

A friendly doctor took time to talk properly to Miriam and her son.

I think the first thing that I would, I would mention from the beginning would be, sort of, family work, which would sit everybody down, wherever, is involved as relations, family, friends close to the person, to let them know what is going on and how things can either be better or worse. So that right from the beginning, people know what the situation is and that comes with this confidentiality' as well, what they are supposed to divulge or whatever, but just to let them know what condition this person has, what medication helps, what other medications are available, what are some of the symptoms that this person would exhibit, and maybe tell them about the relapse signs and, -or let them tell you, because most of the carers know more than the team because they know exactly who they were before and when things don't go right, so at least that sort of dialogue, because the last admission that he went in, the doctor that saw him, I know him very well and I've worked with him for the last 15 years since I stared working, and he sort of, he had a ward round and he waited until everybody had gone, he said, come after the ward round we'll sit down, and we sat down for almost more than an hour, and he went through every single bit and the two of us sitting down with him and really made him aware of the difficulties, the problems, what my difficulties are, what his is, you know, and it really helped, and the reason why the medication is, -I feel the medication is not helping him, in terms of him thinking that he's going to put on too much weight and maybe affecting his sexuality all that, you know, to a point, OK I will then change it to this.
 

Miriam wants carers and health professionals to have regular contact from day one.

So if people are aware right from the beginning as to what's going on and what's happening, give the carers opportunity to, -come back maybe every three months or every four to review things with them, then the trust, there is some sort of trust between the caring team and the carer, and the client themselves, so it's not sort of, eh, -it doesn't create too much tension and problems, whereas if you have to wait until the person is not well and then you'll be phoning and you want help and you don't get it and it brings a lot of situations, because you're phoning these people up, it is too much. So I think right at the beginning there should be some communication and some sort of trust between the caring people and the carers, so that you will be able to move on from there and I'm sure if that happens, because now it's easier for me, if I say that my son is not well, they understand, they know if I'm talking why, and if I say that he needs admission, they believe that my judgement is right, and within the same day they can get him into hospital. But so many people don't get that, you know, because either the mother don't want their son to know that they phone and you know, and it go on and on and on. Before somebody assesses the situation it's gone too far and it puts a lot of stress on carers, you know, not knowing, -I've been having an assessment somewhere that you had to be whispering because the person that is ill is indoors and why can't they give the person a chance, OK come to the office let's talk about what's going on, you know, rather than put them in that situation, that the moment we walk out that will put her at risk because then he's going to be more angrier with her for maybe asking for help for. So it is difficult, but I think with increased communication between carers and the caring teams helps a lot to resolve things and move things on, because the people that I've seen do much better than people who's carers are, -they have good relationship with either the CPN or whoever's looking after him. But if they are not respected and brought in the situation and assisted and supported, they also, we need support as well as carers, we do need someone to listen.
 

Her youngest children worry about their older brother and think they may have to look after him.

They do, I think they do worry at times, especially when I'm running around after him, they always ask whether they are going to do that for him in the future, or whether they also going to spend their life looking after him? And if we don't see him for a week or two they all times wonder whether he is ill again and sort of think, but I think at the back of their minds they feel that if things then doesn't change then they will end up having to look after him one day.

How do you feel about that, that they have these thoughts?

I don't know, it is difficult, but no, you don't know. You assume that maybe he will be able to pick himself up at some point, but, it may be difficult for him, it may be difficult for everybody else but, -it's not pleasant to think that he is the eldest isn't he and he's supposed to be looking after them, so, if it's going to be the other way around then, -this is the suspiciousness around, because every time you want to know what's going on, what's happening and it may not be, -maybe it's uncomfortable for him thinking that, people are worried about him, but then he can't help it, so I just hope that maybe he'll be able to help himself to the point that he can move on somehow, so, I don't know, it's difficult.
 

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

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.
 

Miriam says patient confidentiality is tricky when it puts people at risk.

And I remember being to a conference and someone spoke about that, and they said that they're dealing with a confidentiality issue in mental health, because clearly if somebody's, -whoever they, who they are, they need help more than anything else and confidentiality is very difficult when there is risk involved and if the carers don't know what's going on, and because it's confidential, and you want to help but you didn't know what to help, because you're not put in the sort of picture as to why things are getting the way it is, you know. So, I hope maybe that's changed at some point, but so many people that I've met, as carers, do say that and until you are in the situation you didn't understand how it is, but it is possible that if people are aware of how to help and what to do to help, I mean, if you are a wife, husband, maybe mother, father or whatever, there are certain things that you can do to maybe alter the situation. But if you don't know medication' Again the medication, it has so many side effects, -my son, -they didn't tell me, especially, the...  didn't want me to know in terms of the side effects. So you, you're wondering why he's not taking the medication, and in a real sense he's got things that he can't tell you as a mother, why he doesn't want to take it.
 

Miriam thinks regular communication between families and professionals can help prevent crises.

So if people are aware right from the beginning as to what's going on and what's happening, give the carers opportunity to, -come back maybe every three months or every four to review things with them, then the trust, there is some sort of trust between the caring team and the carer, and the client themselves, so it's not sort of, eh, -it doesn't create too much tension and problems, whereas if you have to wait until the person is not well and then you'll be phoning and you want help and you don't get it and it brings a lot of situations, because you're phoning these people up, it is too much. So I think right at the beginning there should be some communication and some sort of trust between the caring people and the carers, so that you will be able to move on from there and I'm sure if that happens, because now it's easier for me, if I say that my son is not well, they understand, they know if I'm talking why, and if I say that he needs admission, they believe that my judgement is right, and within the same day they can get him into hospital. But so many people don't get that, you know, because either the mother don't want their son to know that they phone and you know, and it go on and on and on. Before somebody assesses the situation it's gone too far and it puts a lot of stress on carers, you know, not knowing, -I've been having an assessment somewhere that you had to be whispering because the person that is ill is indoors and why can't they give the person a chance, OK come to the office let's talk about what's going on, you know, rather than put them in that situation, that the moment we walk out that will put her at risk because then he's going to be more angrier with her for maybe asking for help for. So it is difficult, but I think with increased communication between carers and the caring teams helps a lot to resolve things and move things on, because the people that I've seen do much better than people who's carers are, -they have good relationship with either the CPN or whoever's looking after him.
 

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

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.
 

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

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.
 

Miriam says services need to understand that mental health problems means different things in different people.

I just hope that, as I said, the hospital authorities will understand also where people are coming from, their culture, background and why, and what is mental illness for them, because at times when I see people, I ask them that question, what is mental illness for you? Because you have to understand where they are coming from before you'll be able to know why they are behaving the way they are behaving, and I think people at times don't find out a bit more of people's background and who they are and why they are worried or frightened and help in the way that they should. And medication also has so many side effects, people don't want to take medication, do they have alternative help? That also is something that I think'

How do you define mental illness?

How do I define mental illness? In my own words, I would just say it's' -a way of thinking outside your reality, really, and not able to meet your basic requirements at a point that you're in some form of crisis. So if the crisis is sorted and you'll maybe get better and at times you need some medication to help you do that. So it's not the end of the world, you know, I mean it doesn't often kill like so many other physical illnesses kill, but it can make life difficult, so you need to deal with it.
 

Her family 'back home' blames her for bringing her son to England where he became unwell.

I mean, the culture that I come from, I think that is a big problem in the sense that everybody knows that if you're here you're here for, eh, there's a reason you go to England and you do something for yourself and, you know, at times, as a carer, you get, you feel that people blame you as a mother, maybe where did you go wrong, or is it your fault, or did you bring him up well enough, or are you doing something wrong that's making him do such things and I think as an African I get the blame most of the time, that people feel that it may be the way that I brought him up.

And is that within, the interpretation within African culture, that this, that the blame is put on you? Can you say a bit more about that, what is that linked in with in African culture, do you think?

As I say, the mental illness is not a sort of hereditary thing, and there's no-one' in that they feel, -I think my family back home feels that maybe because people know or understand that children in this country are not disciplined, they understand, and so they do what they want and they will drink and they whatever, so maybe you were not able to bring them up well enough, to be able to understand and the sort of lifestyle that has made them the way they are. So, they always say, oh you have to bring him home, you have to bring him home, but they also don't understand that you cannot force anyone under 20 years old to say, go in a plane and go away. You know, so, that becomes hard and as I say, most of the people that I know, that come from the same background as I, or I know from my cultural background, I don't talk to them about him, because I know that they will always have something negative about the whole situation, that hurts, so.
 

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

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