Jane - Interview 22
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More about me...
Jane (69) and her husband came to the UK more than 40 years ago. They live in the north of England and have three grown up children. Their daughter Sarah was diagnosed with schizophrenia in the late 1980s and she is living with them.
Jane and her husband didn't know much about mental health problems when their daughter became unwell. Although they noticed that she became withdrawn and that her behaviour changed in her late teens, they initially thought it was normal teenage behaviour. It took some time before they realised it was a mental health problem and contacted the doctor. After she was diagnosed, she was in and out of hospital and her medication was changed a number of times. This was a very hard time for the family. Jane says that they were anxious about leaving her at home when they went to work, and that life became full of worry. It was difficult to sleep at night as Sarah was very restless and kept them awake.
Jane says that back then, there was very little information available, and Sarah's condition was never really explained properly to them. She thinks things are much better today, with more information and services for both carers and service users. She recommends that carers take part in what is offered by community mental health centres, such as opportunities to talk or activities that can take your mind off all the problems. She herself has taken active part in different kinds of mental health training over the years, and she has also given talks about her experiences. She believes the general public needs to learn more about mental health and illness to avoid some of the stigma and stereotyping that happens.
In addition to the support from community mental health services, friend and family, Jane gains strength from religion. She has a strong belief in God and says her relationship with him is what has helped her through the hard times.
Over the last few years, Sarah has become better. She is now much more interested in going out and doing things, in buying clothes and looking after herself. This is a great relief to Jane and her husband, and Jane says she and her daughter now have developed a good friendship and enjoy socialising together. Even so, Jane is sad that her daughter is not experiencing the love and relationships that most people her age are experiencing.
A big worry for Jane is what will happen when she and her husband are no longer able to care for Sarah. She says that they try to make sure Sarah becomes more independent, so now that she is better they have started to let her go to the doctor's on her own, and they involve her more in household chores. The most important thing, Jane says, is to show her love and affection, and that she is an important part of their family.
Really careful listening is needed to understand the work carers do (played by an actor).
Really careful listening is needed to understand the work carers do (played by an actor).
I want them to listen more. I would like them to really and truly listen to the voice of the carers. I would like them to help the carers more and do a lot a more as well even the users as well, help them a lot more, God I think they need a lot more help than what they get, I think so.
Encourage them, let their, -oh how can I say it now, -let them, let them feel like they are listened to. Help them in a way that they can feel like this weight, -just take some of the weight from them, you know. For me, as I said, me now I am a pensioner, but thank God I manage, I manage financially, I manage. But there are some carers that need help financially more. There are some that do need financial help and that's one of the things they should help those who really need financial help and support them a lot more. Listen, because when you listen you can understand, you know, if you don't listen to the people, who really experience these things you will never ever understand, you know. And they must listen to carers, help them more, help them, because it's hard work. Somebody might say, oh well it's your own daughter, or your own son, or your own husband, that's true, that is true, but it's, it's still hard work and you need support too you see, you need to be supported as well.
Jane grieves that her daughter will never have friendships, get married and have children (played...
Jane grieves that her daughter will never have friendships, get married and have children (played...
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?
Jane had been a carer for many years before her doctor told her about a centre which had services...
Jane had been a carer for many years before her doctor told her about a centre which had services...
Jane thought the early signs of her daughter's mental health problem were normal 'teenage stuff' ...
Jane thought the early signs of her daughter's mental health problem were normal 'teenage stuff' ...
Anyway it continued and then my husband says, 'No this can't be right', so we approached the doctor you see and when we approached the doctor and we explained to him all of what was happening, the symptoms and what was taking the place, what looked unusual to us, then he refer us to like a specialist, you see. And then we went to the specialist and we told him everything about, you know, what was happening and everything like that, he spoke to us and he told us everything about the symptoms and examined her and everything and then he told us that she's got schizophrenia.
Mental health problems can affect anyone so educate yourself, learn about mental health problems,...
Mental health problems can affect anyone so educate yourself, learn about mental health problems,...
Jane thinks carers today are speaking up and being listened to more than before (played by an...
Jane thinks carers today are speaking up and being listened to more than before (played by an...
Did you feel you were trying to speak out back then?
I did.
Yeah.
Oh yeah, as I said before, I went to a lot of meetings.
Did you feel that people didn't listen?
No, I don't think they were listening, nobody, they weren't listening, they didn't understand what it. Because they don't understand what it's like to be a carer, I don't think they were listening at all, I don't think they were listening, you know. There are a lot of carers out there, there is a lot. Not just with mental illness, both physical illness as well, a lot of carers out there and they weren't taking any notice, you know, they just, they listened, but they weren't hearing. But now the voices of the carers are being heard more, because they are speaking more. They are speaking more, because I think carers are getting a bit fed up of not being heard, fed up of nothing being done to help them and so now they are coming out and they are talking and they are listening. And I think more should be done for carers, more because it's a hard job. I know the person we care for is our blood, it's our blood, but we need, we need help as well, we need the support too, you know, and it's only now that you find that things are getting done for carers a bit, things are getting done and we hope that it can get better.
It used to be very difficult to communicate with her daughter, but now they are friends (played...
It used to be very difficult to communicate with her daughter, but now they are friends (played...
Jane's GP told them about a centre which had services both for her and her daughter. It was a...
Jane's GP told them about a centre which had services both for her and her daughter. It was a...
Her community centre provides a space to talk and opportunities for lots of activities, which...
Her community centre provides a space to talk and opportunities for lots of activities, which...
She worries about who will care for her daughter when she and her husband are gone (played by an...
She worries about who will care for her daughter when she and her husband are gone (played by an...
Jane felt distressed and had no knowledge of schizophrenia when her daughter was first diagnosed ...
Jane felt distressed and had no knowledge of schizophrenia when her daughter was first diagnosed ...
Jane thinks different things in a social environment can trigger mental health problems (played...
Jane thinks different things in a social environment can trigger mental health problems (played...
Genetic?
Yes, but I have nobody in my family as far as I can know, that suffered from any mental illness you see, so these are the different reasons that they have about it.
You said, you think it's dormant, do you think it's in her?
Yeah I think, to me I think it's, I think this illness is there, [indicating her chest] I think so. I think it'd be in people who suffer from like schizophrenia, but it just needs something to trigger it, that's what I think, that is my-.
You're born with it and you need something to trigger it?
That's my thinking, that it must be something in there, because if you have a chemical imbalance in, in your body, something has to cause that chemical imbalance and that's what, you know, I gather from listening to talks and going to these. And then any kind of social environment, unpleasant and a social environment can trigger mental illness, so that's what I think.