Anne - Interview 20

Age at interview: 40

Brief Outline: Anne has been caring for her husband, who has severe depression, over the last four years. She has recently returned to part time work after having been a full time carer for some time. She believes it should be a requirement that health professionals listen to carers.

Background: Anne lives with her husband and two daughters. She became a carer for her husband at age 36. She feels she belongs to a minorty group due ot her religious affiliation. Ethnic background: White British.

More about me...

Anne is 40 and lives with her husband Adam and two teenage daughters. Over the last four years, Anne has been caring for her husband who is suffering from severe depression. Although not from a minority ethnic community, Anne feels that she belongs to a minority in religious terms.

Before his depression, Adam and Anne were running a small, independent 'Born Again' Christian church. Their lives were extraordinarily active and Adam was seen as a strong, resourceful pastor. In 2002 Adam 's health deteriorated as a result of a serious, but unidentifiable virus infection. After many months of being physically unwell, Adam also started to show signs of poor mental health. Their GP diagnosed increasingly severe depression and put him on medication. He has since also been diagnosed with fibromyalgia. When Adam got to see a consultant psychiatrist (after having waited for nearly four months while on heavy sedative medication) the treatment he received was also this time in the form of medication. They both felt very let down. Anne thinks the mental health care system is too oriented towards medication. She thinks other therapies should be available too and that it is crucial that carers are heard and take an active part as they hold essential information. Anne has often felt that if she is asked at all, the health professional only pay lip service to her views, and she has stopped coming with Adam to see his consultant because she is so angry about it.

As Adam was often unable to wash or even get out of bed, the responsibility for his care and for the rest of the family fell entirely on Anne. The Church had to be closed, Anne had to stop working to be able to look after him, and they got into debt. It has only been over the last few moths, as Adam has become a little better, that Anne has been able to return to work. After years of isolation she is also beginning to seek a social life again. But, as she says, caring has taken its toll on her so when she has a little time to herself she often prioritises getting some sleep or just relaxing on the sofa.

Anne has many times tried to get information and support for her role as a carer. She says that 'I am not trained to do mental health work. They are', and she misses professional feedback about how she is doing and how she can make things better. She has recently come in contact with a Christian mental health organisation, and she describes the practical help and support she receives from them as very helpful.

Anne advises other carers to find out what you are entitled to and to try to make yourself heard. This may mean having to 'stamp your fist' and speak up. She also thinks that listening to carers should be part and parcel of the work of health professionals and that they should be required to account for whether or not they have spoken to carers.

Anne is very disappointed by the lack of support from her Church. She disagrees with those who say that mental health problems are the result of lack of faith or sinful behaviour. The way he has been treated has left Adam very disappointed and he is now distancing himself from his religion. Anne says that her own faith has grown stronger through all of this and that her relationship with God is what helps her cope. She maintains this relationship through prayer, worshiping God, reading the Bible and going to church. Anne believes that God would have the power to heal Adam but that she will have to wait to see his reasons for not doing so, and she chooses to put his trust in him.

She thinks the way staff listen to carers should be part of routine monitoring of their work.

So from the very, very beginning I think they should have, you know, when there must be so many forms that they fill in when a patient's admitted or whatever, even GP's or any health appointment, there should be parts on that form where you've got to put, carer's comments or whatever, so your comments are written down. Your, you know, thoughts on what, how it's affecting you and what you've said is acknowledged. And then like I guess, any health professional has to have supervision sessions or whatever, review sessions, whatever you call it, to make sure that they're doing their job properly so that should be on there as well. 'Have you spoke to the carer?' So all the way through the system, you're making sure that the carer is involved. Because at the minute it's just, it seems like it's nowhere. And then some sort of comeback like in these, get discharged from hospital and they don't even tell the carer. Or you're not even told about the meetings, or you're not even told when they cancel the meetings. There should be something on there. Some forms where they tick or what, or however system they do it, on the computer or whatever, and then some comeback for these professionals if they don't listen to the carer, or they don't, you know, speak to the carer, yeah?

When Anne's husband stopped working he felt bad and life changed for the family.

Also when your life changes so much because when somebody's ill for long term, -you lose your finances. He lost his job, which has a major impact on him as a male. He's always worked all his life. Never been on benefits. Was really, really down on himself for being on benefits, - and, you know, so your whole life changes. And you can't have the holidays that perhaps you would have if you were with somebody that was healthy. You can't have the car you wanted. You can't have the house you wanted, you know. You can't buy the food you want. You can't go out. You can't just think, 'Oh I'll just go out for a meal or, I'll go to the pictures', or something, because you haven't got the money. So it completely affects your whole life.

Anne says it can be very difficult to get psychiatric help in an emergency.

So you've got some contact, and talk with you etc, so it's that help in the home to stop you going into hospital, but you try and access that and it's, you know, impossible. Or one of them will say, you go to casualty because you've taken an overdose, wait for about six hours for a psychiatric assessment and then they'll say, 'oh yeah we'll get the crisis team in. They'll come round tomorrow'. Then you think, and that's your only hope, that's his only hope. And that's, -he's focusing on that. 'Someone's coming to see me tomorrow'. So you get through the next 24 hours, sedatives and, well 'someone's, be coming soon, let's see what they say'. And then nobody comes. And then you phone them up and they say, 'oh no, it's not, we're not down, we have to do our own assessment'. And then they'll come and then they'll see, and then they'll look and they go, 'oh well you've got the carer support worker that comes. You've got Crossroads that come. You go to the project on a Friday so you don't need our help. You've got support'. I think, 'no, he's entitled to that support', -doesn't mean to say he's not entitled to crisis resolution team as well, just because he's got some support. So some of them will try and fob you off as soon as they think you've got any support whatsoever. So don't be ashamed to, you're entitled to, whatever service you're entitled to, you are entitled to it. Don't let somebody condemn you because you're getting some support, you're entitled to more.

Anne's two daughters reacted differently when she explained her husband's mental health problems to them.

Well I've got two daughters and they're both very different personalities, just like we all are. So one can take things much better, can let things sort of wash over her head more, and the other one is very emotional, sort of -in a drama queen sort of, so that's been very draining as well. And to try and explain to two teenage girls that somebody that they really looked up to, that was really strong, that used to go on long walks in the countryside and that, is now literally a shivering wreck in the corner, they cannot understand it. We struggle to understand it as adults, so children, it's really, really scary. And I've just tried to explain, you know, that he's poorly in his mind as well, and it's, so he can't think properly. Like, when we wake up we think, -although we don't realise it, we actually think, 'All right I'll get up or, I need to go to the toilet, I'll brush my teeth, oh I think I'll wear this red dress today or, oh yes must get some milk before I get out', but when you can't think properly, it's all a juggle so you can't put anything together. So you can't even get out the bed or think to get dressed or, the next stage of, so, -but I would say they've been hurt a lot by words that have been said because they don't understand the irrational thinking.
 

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

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.

Anne's friends don't really understand, and she chooses who she talks to, but communicates with God.

So, -and then any, -well my closest friends are either single or divorced, or some of them are married but they're not in my situation so, with the best will in the world they can't understand. So, some don't want to know that side of me, you know, don't really talk about it. Some try and understand. Some will say things like, they'll say, 'Oh I wouldn't put up with that'. 'Oh I'd get rid of him'. And I think, 'Well that's not really helpful, you know, or that's, -I don't want to get rid of him because I do actually love him so, and he is my husband and', or they don't under-, they think that if he wasn't ill and he was doing some of the behaviour he does you'd think, 'Oh he's not a very nice man'. But you've got to remember that he's not well, so that's why he's behaving like that. So some people make judgements thinking about his behaviour when they're forgetting that he's ill. So I choose the things that I say to even my friends, because a lot of them misunderstand. And so, one or two friends I've got, where we just sort of have a laugh and that, so I might explain a situation that's happened and they might think it's funny, and then we're just talking about the weather kind of thing. But there's nobody I have where I can, -that understands me and where I come from, that yeah -I do like to have a laugh but sometimes it's nice just to talk to people and go, 'Oh god you can't believe what I've just put up with in the last two or three days', and just be able to spill it out for them just to listen. You're not expecting them to change, you know, come up with a miraculous answer that, they can't, but just to actually listen and acknowledge the impact on you. So I don't have anybody that I can do that with. 

So you feel lonely? 

Yeah. Yeah lonely is another word, like the grief and loneliness, yeah. Yeah and, but. And all I can do in my loneliness is give it to God. That's all, I have faith and that's it. And it's, so it's the times when it's really bad, is the times when you're even more lonely. The times when you need somebody even more is the time you don't get somebody.

Anne maintains her personal relationship to God and that helps her to cope.

In a personal relationship with, -because I feel like, as if God's sat here with me, he's here with me all the time, wherever I go I can talk to God. So through prayer, and I believe I can talk to him like I'm talking to you. So, that he's interested in my everyday life, and then reading the Bible. So I get a lot from scriptures and, if you're reading it's like something, you know, just hits you in your face so you can think, 'Oh wow', that scripture just really speaks to you, gives me a lot of comfort and a lot of peace, and a lot of hope for the future. And then I feel, -like I can read a few lines and think, 'Wow that's God speaking to me'. Like in Job for example, I was reading it once and it said, 'Submit to God'. No sorry, 'acquaint yourself with him and be at peace, and surely goodness will come to you'. And it was like God, from that I got, yeah, just be with God. Submit to him. 'God you're sovereign, you know what you're doing in this situation, I don't', and then I can have peace. And so as I think like that, I can have peace whereas if I was bitter and full of anger I'm not going to have peace. And then going to church, worshiping God being, you know, in praise and thankful for everything I've got in my life. So just putting a worship tape on and sometimes, I'm just stood in the kitchen, could have been a horrendous last four or five hours, go in the kitchen, washing up, put the, -a worship tape on and then I'm just, well I'm in God's presence and everything just slips away. So the past four hours it's like, 'Well, God you've seen everything. You see what I'm trying to do here, you see I'm trying to do my best and I love you', and that's it. And then listening to great teaching as well, being in a church that's got great teaching and sermons and that I find really helpful. And then being in Christian groups like the Mind and Soul, that's been really, really good as well, yeah.

According to Anne, people do not talk about mental health problems in churches.

Well, since I've been involved with the Mind and Soul group, and we visited a Church of England and a Methodist church and that, and we had discussion groups with people there as well, and I think it's the same but slightly different. It may sound silly but, some of them had lost a loved one 30 years ago, that had committed suicide, but they've never talked about it. They've been in the same church for over 30 years but never talked about it because they don't think it's an issue people should talk about. And that's another thing with me and Adam now he's, he is a lot better than he was at the beginning. You know, why not talk about mental illness? It's out there. Hundreds and thousands of people suffer from it. Why has it got this stigma? You know. Why can't you say, 'Oh, hi my name's Adam, I've got mental health issues'. Or, 'My husband's got mental health ', because sometimes I think with my friends as well, well some friends or whatever, they don't like you to talk about it, but it's part of me. It's a part, it's been part of my life, it is part of my life, and you should be allowed to talk about it without people getting scared or thinking, 'Oh, don't want to talk about it'.

Her support worker from a local voluntary organisation is very flexible and gives her great support.

That's when I find it frustrating and not help, when I'm in the NHS. But when we moved here three years ago I found a lot better help up here. There's a charity called Making Space, which are for the carers of people with mental illness. So you get a carer support worker, and she was absolutely fantastic. So I could see her any time I liked. Ring her any time I liked, and every time I did ring her or there's, -she'd always fit me in. And she'd just either listen or she'd give me practical advice on how to speak to Adam, or what to do. What could be helpful, what's unhelpful, but she'd see it from my side as well. So it's a release for you because someone's actually acknowledging that, the impact on you and your health, you know. Because it's very, very draining looking after somebody with mental illness. And, if they've got a physical illness as well, and the physical is one thing but mental illness is a completely different kettle of fish.

When her husband told a joke for the first time in over a year, Anne felt really hopeful.

Because he used to be, have such a great sense of humour and then for, well a year, don't know if it was two years, never smiled. Now that's really weird, to never see somebody smile or even go, ha, ha, like that. Just a little laugh, let alone crack a joke or be with a friend or whatever, to be completely like a zombie, it is really weird. So the, I remember the first joke he cracked, and I'd bought some jeans from a charity shop and they, I'd managed to get them done up but they didn't, were a bit tight. And he said something like, 'Oh that's a five pound bag trying to get into a two pound bag of sugar', or something like that. It was a joke, and I just went, 'Oh wow' and gave him a big hug and said, 'You've cracked a joke'. And I was, wow and I was going, 'Did you hear what he said, he just said this'. And people I think, probably think, 'Oh that's a bit insulting' but I just thought it was fantastic because it was actually a joke. And that is the first joke he'd tried to say for a, you know, well definitely over a year. So yeah, so it's great when you get little glimpses of the old self.

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

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.

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

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.

Her support worker suggested that Anne simply run a nice hot bath for her husband instead of 'nagging him' to have one.

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.
 

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

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.

As a carer, she is clearer than the professionals that her husband experiences strong side effects from his medication and has suicidal thoughts.

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.
 

Anne talks about how the Bible comforts her when people say mental and emotional problems are a result of sin.

I think it's laughable. Because if you look in the Bible there's a book called Job, and he was somebody that was a real righteous man, didn't do anything wrong. And then suddenly everything went wrong in his life and he lost his wife, his children, his job, he'd got a really bad illness and his friends, four of his friends came along and sat with him for about seven days, watching him in complete and utter agony. He's lost everything and he's in such pain. And then after the seven days they go, 'Well we can't work this out but this', they said, 'Well it must be something you've done wrong' etc. 'And you must do this and you must do that, and that's why you're ill because you're not thinking right. And you've obviously got problems with your emotions and you need to sort them out'. And they started condemning him and judging him. And then in the end when God turns up, God says to them, you know 'You've got it all wrong'. So that has really actually encouraged me in the past, was I thought, these people that think somebody's mentally ill because they're, got a past sin or they're not, they've let the devil into their lives, or they're not praying enough or something, it just doesn't stack up with the rest of the Bible at all. So I actually feel sorry for them because I think they're like Job's comforters. As I say, that where they've just turned it round because they can't understand themselves. And it's quite sad that they don't actually want to learn about mental illness and actually help people.