Nita - Interview 12
More about me...
Nita is a 46 year old British-Indian women who lives in the Midlands. She works for a national charity, supporting carers from BME communities. She and her husband live with his parents, and they have two sons in their twenties. Nita cares for her mother who suffers from manic depression.
In 1984, when Nita was in her early twenties, it became clear that her mother was not well. Her mother, who at the time had become deeply religious, announced that she was going to die on a certain date. Initially Nita was frightened and wondered whether there could be some truth to her mother's visions. Nobody realised that she had mental health problems and number of consultations with religious leaders and faith healers happened, which, Nita says, initially lead them down the wrong path.
Eventually her mother was sectioned under the Mental Health Act. When she came out of hospital, Nita brought her home to live with them. This was a very hard time for Nita. She felt she had lost her mother and that their roles were now reversed. She also felt she needed to take responsibility in a situation she knew very little about. She did not see herself as a carer at this point, and was not really aware of the help and services available. Living in an extended family, and in a community where, at the time, there was limited understanding of mental health issues, the situation became too difficult, and she had to move her mother back into her own home.
Nita is concerned that her mother does not receive culturally appropriate care when she is in hospital. For example, she relies on Nita to translate in conversations with health professionals, and very little vegetarian food is available, which meant she doesn't receive proper nutrition. Although the situation has improved since her first admission, there is still some way to go. There are also issues of her safety, such as when she walked out of the hospital and was found wandering in the streets in the middle of the night, suffering from hypothermia.
Nita has come to terms with the loss of the mother-daughter relationship and she doesn't any longer feel the anger she initially felt. She thinks it is important that carers address their own needs, and she has found it useful to 'pamper herself' and to express her feelings to others. She and her mother, however, never talk about it, so Nita doesn't know to what extent her mother is aware of her mental health problems. Today, Nita helps her mother with many day-to-day practical things and steps in whenever crisis hit. She says that the support and objectivity that her husband brings to the situation has been extremely helpful.
Over the years, Nita has worked with people with mental health problems and carers. She stresses that improving the situation for carers and for those they care for is essential, and there needs to be partnership working between carers, the 'Third Sector' (voluntary organisations) and the NHS.
She says the NHS needs to take more responsibility and not expect voluntary organisations to do...
She says the NHS needs to take more responsibility and not expect voluntary organisations to do...
The dynamics in Nita's relationship to her mother have changed.
The dynamics in Nita's relationship to her mother have changed.
Nita thinks professionals should give time to both carers and patients.
Nita thinks professionals should give time to both carers and patients.
Do you feel that health professionals do that?
No because I think they have a bias towards one or the other, and I think it's also about resources, that if they were to sit equitably with all parties. But I think there's going to be, there are going to be issues around the dynamics if they don't do that, so half an hour with the carer, and half an hour with the person who's caring for them just to get their perspective. This is a difficult situation, because if somebody's caring for somebody, and they say to the person who's assessing I don't want my confidentiality breached, then the. The worker assessing them would have to honour that wouldn't they? So it should apply for the person who's experiencing the problems. But I think where the problems are is when somebody's really ill, and the carer is then, they sort of feel locked out of what's happening.
Nita says voluntary services are best at meeting individual needs, but funding is an issue.
Nita says voluntary services are best at meeting individual needs, but funding is an issue.
And what do you think are the main things that need to change, for that to happen within the services?
I think having workers, having more workers who have an understanding who are in mainstream funding, who don't have to worry you know, about their funding, who have the support of an agency to, to support what they're doing. A lot of the work that's being done for BME carers is being done through the voluntary sector, it's time limited funding, workers are part time, and they're just good enough, there needs to be a more well thought out approach to carers.
Nita says that to be able to treat mental health problems, you need to enable people to talk and...
Nita says that to be able to treat mental health problems, you need to enable people to talk and...
Yeah?
And what I've experienced in working with other carers is all these factors, guilt, responsibility, judgements, you know. A lot of the carers who I've worked with have said, 'oh he's doing it on purpose, she's doing it on purpose'. And it's like making them understand that most people don't do things on purpose, it's really meaningful for them, you know, that's how they see that, that's how they see the world at that point. Because I know my mum would never, never do anything to hurt anybody. So, -and maybe as a society we're not so tolerant, you know, we have lots of medical models where somebody's like slightly ill, but we'll pump pills into them without looking at what's the cause of this?
How do you find the cause of it do you think?
By talking to people, or understanding their position, trying to communicate to them, and trying to, you know, like I said to you each person is individual, and gearing your, one-to-one with them. But it is so difficult finding good workers, and, you know keeping workers, and having therapeutic models and, -My mum when she had mental health problems she was sectioned, she was locked away in a ward with other people with mental health problems for six months. There were no therapeutic, they didn't do anything, no activities during the day, all they did was monitored her medication, nobody talked to her.
Nita's mother's manic depression came as a shock to her.
Nita's mother's manic depression came as a shock to her.
For Nita, coming to terms with her mother's mental health problem has been a healing spiritual...
For Nita, coming to terms with her mother's mental health problem has been a healing spiritual...
And having been on that journey what are the core values that you have landed on?
About accepting people for who they are, valuing diversity in people, and just honouring people and their experiences. And not -as much as possible- making judgements on anybody for whatever reason, whether they're ill, or whether they're a carer, or whatever. You know. And I know my mum did the best she could, so I appreciate that, and honour that. But I think the other thing is that it's made me a more, probably a more tolerant person, more understanding.
Nita felt ashamed before she learnt about mental health problems and says awareness needs to be...
Nita felt ashamed before she learnt about mental health problems and says awareness needs to be...
Yeah there is a lot of stigma, and there's also, I think, I think there's, you don't get anything until you experience it first hand. But I, I felt ashamed at times, I felt ashamed to say, especially in the early days to say, 'Oh she's got mental health problems', and I didn't know that she had mental health problems. So there is still a lot of stigma and taboo, especially because people don't know the full extent of the illness, and how it manifests, and why it's created. And I think that's been part of the, -my journey, healing journey, understanding that it might have happened because of this, and this is how it looks like, and this is the treatment for it, some kind of rationale.