When her youngest daughter became seriously depressed, mother-of-eight Edna Hunneysett was thrown into a nightmare situation.
She talks to Women's Editor Christen Pears about being a carer and the stigma attached to mental illness.
ELIZABETH Hunneysett was just 13 when she was diagnosed with severe clinical depression. A bright, popular and vivacious girl, the first inkling something was wrong was when she drank herself into a stupor while out with friends.
"It was a cry for help," recalls her mother Edna, "but it was a while before I realised it was a cry for help and even longer before I realised what was wrong. It turned her life upside down and ours as well."
On the outside, Elizabeth, the youngest of eight children, seemed to have so much going for her but inside, she felt total and utter despair. She sank deeper into depression and became suicidal. She was referred to a psychiatrist and was eventually admitted to St Luke's Hospital in Middlesbrough.
"At first she was there every day and then every other day until she was spending most of her time at home, where I just looked after her myself. The family didn't understand. She wouldn't get out of bed and they said I was spoiling her. It wasn't that they didn't care, they just didn't understand how seriously ill she was. I became her buffer between the rest of the world and it played havoc with my relationship with my husband and my children. But what else could I do? She always says she would be six feet under if it wasn't for me."
Doctors told the family Elizabeth's illness was caused by a hormonal and chemical imbalance, triggered off by puberty, and that she needed total rest - no school, no music lessons, everything was put on hold. At first, she wouldn't even leave the house because she was terrified of meeting people. When she did eventually return to school, she was never able to put in a full week.
It was an incredibly difficult time for all the family, particularly Edna, and more than ten years later the emotions are still very close to the surface. Sitting in the living room of her home in Linthorpe, her eyes well up with tears just recalling events.
"If your child has a broken leg or a cold, you know there's something you can do to help them, you nurse them, but with Elizabeth I felt helpless. It's a horrible feeling," recalls the 64-year-old.
The situation became more difficult when Edna realised her own mother was suffering from a serious mental illness - obsessive compulsive disorder. She would spend hours washing her hands and cleaning her house.
"When I was a teenager, I used to talk about her being neurotic but I didn't really mean anything by it, it was just a word. I think my father probably kept it at bay and supported her but he died when she was 62," recalls Edna.
"After he died, she used to ring me up and tell me about her cleaning and I just though she was a bit weird at first. Then I realised she had a serious illness."
Once again, Edna found herself in the role of primary carer, trying to help both her mother and daughter, and she found herself under severe emotional and physical strain.
After 18 months, Elizabeth was assigned a community psychiatric nurse and although she was a great help, Edna found a general lack of understanding and support in the community as a whole. With a strong Catholic faith, she turned to the church for help but discovered that, despite a willingness to help, there was a lack of understanding.
"A carer becomes very isolated. I used to say, 'The church should do something about it,' but then I realised that I was the church and I should do it myself. I was so desperate after a year, I set up my own carers' group. I listened to what everybody was saying and it was amazing because I realised there were people who understood."
Carers and those with mental illnesses come together to read Scripture, pray together, socialise and share experiences. But Edna's work to improve support for carers extends far beyond the group. Her own struggle showed her that before any practical changes would take place, people's attitudes towards carers had to change.
She left school at 16 and married at 20 but as her children began to grow up, she decided she wanted to do a degree. She was studying for a distance learning BA in theology when Elizabeth fell ill, but she finished and went on to do an MA.
"I decided that because I hadn't found the support I needed as a carer, I was going to research it for my masters degree."
She went on to have it published as a book: Carers in the Community: Why have you forsaken me? The research is combined with her story about caring for a daughter with depression and highlights the depth of suffering endured by people with mental illness and the need they and their carers have for practical, emotional and spiritual support.
She has talked to church groups across the North-East and further afield about her experiences. She spent 18 months working in a mental health day centre and is now writing her PhD thesis, examining attitudes towards mental health throughout history and in contemporary society.
"There is such a stigma about mental illness. People with mental illness are among the most marginalised in society. We talk about nutters and psychos and these labels stick. It takes away people's dignity.
"I actually had some people suggesting I was to blame for what happened to Elizabeth, pointing fingers at the family, but it was an illness and she couldn't help it. They wouldn't have done that if she had leukaemia or epilepsy but I don't think they believed she was really ill."
Elizabeth is now 25 and has two children of her own. She missed out on university but is about to start an access course and study for her degree, but, without her mother's support, things could have turned out very differently.
"I felt people must have been sick of me talking about what was happening to Elizabeth and I started to withdraw. I just didn't know where to go for help," says Edna.
"I think things have changed since then. The councils and trusts are far more aware of the issues. There are carers' groups and forums where people can put their views across but there is still a lot of work to do to change people's attitudes.
"I am so passionate about this it has become a cause. I don't want anyone to go through the pain and suffering we did, and if there's anything I can tdo o prevent that, I will."
* Carers in the Community: Why have you forsaken me? is available from Edna Hunneysett on (01642) 818332 or Valery Marston at APS Publishing on (01725) 516246.
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