Sarah cares for her son who has schizophrenia. She is active in several carer’s oganisations.
Sarah is originally from France and in her late 50s. She lives in the South West of England with her son Max who was diagnosed with schizophrenia in 2000.
At the time, Sarah was in the middle of a divorce, and life was therefore very stressful for the whole family. Max went to university and eventually completed his degree. After finishing he moved home and Sarah noticed that his behaviour was becoming increasingly anti-social, and he spent most of the time alone in his room. He was, however, able to work in a local restaurant. When Sarah returned from a week’s stay abroad the following summer she found Max unable to cope. He was clearly unwell and had stopped working. Despite Sarah’s encouragement, he didn’t accept that he needed help and tried to live away from home for some time, but had to return after a few months as he couldn’t cope on his own. He eventually agreed to see a counsellor, who immediately understood that he had a serious mental health problem. It took another year before he was diagnosed. Although gradually accepting that he has some difficulties, Max has never accepted that he has schizophrenia and he doesn’t like taking medicines. He has never been sectioned or hospitalised. Despite really wanting to return to work or study, he hasn’t been able to. Recently, he has started doing some voluntary work but he suffers a lot from negative symptoms.
The impact on Sarah’s life of caring for her son has been huge. After being extremely exhausted and depressed for a long time, two years ago she stopped working. Since then, she has been very actively involved in several carers and service users organisations. Using the internet and going to conferences and seminars, she has learnt a lot about mental health and about schizophrenia in particular.
Sarah doesn’t think the health professionals helped her much when her son was first diagnosed. She received a tape with John Cleese talking about schizophrenia, and that was initially about it. Looking back she says the professionals must have known what she was in for, yet she received very little information and support. She believes it is necessary with public awareness campaigns on mental health, like the ones that exist for other issues such as cancers. Sarah and her husband had been unaware of mental health issues and when their son was showing the first symptoms they had not recognised them. This reduced the opportunities for early intervention.
Sarah is concerned that when a mental health patient is relatively stable, the psychiatrist often refer him or her back to the GP and move on to the next person in crisis. Sarah believes that instead we should focus on achieving remission (when the symptoms of illness stop but could return) She says it is important that carers get the information they need and that they are able to assert themselves when they meet health professionals. It is also important that the health professionals with the most expertise – that is psychiatrists- and not GPs, are involved in this as they will be the ones with cutting edge expertise.
Although Sarah feels she can’t keep talking about the situation to her all her friends and that she has to be careful about who she talks about it with, she says she gets support from her two daughters, from some close friends, and, importantly, from other carers.