Pauline's story

Pauline Arksey is 67. Her son Simon has schizophrenia, she is the main carer. Since her son became ill 20 years ago Pauline has worked for the NSF.

"I'm not really a carer - I'm a mum. Simon became depressed when he was 20, and over a two year period his behaviour changed. He was a successful commercial artist, but could not cope with people, so went and worked alone as a courier.

He became a recluse and attempted suicide. That is what brought him to hospital. After several months, and under the detention of the Mental Health Act, Simon was diagnosed as having schizophrenia.

Before Simon became ill he was very outgoing. He and his friends loved motor racing. He was brilliant at it, he has raced at Brands Hatch and places like that. At the time I was a nurse teacher, Simon always came to my students' parties - he was the life and soul.

When Simon became ill, I felt bereaved, he was no longer the son I had brought up. It was an awful sense of loss.

He had ten years of being very ill, he was drug resistant to the old medications. Then clozapine, a new drug, came on the market that he responded to.

His psychosis diminished and he became less aggressive. But no drug can remove the negative symptoms of the illness - the lethargy and the lack of motivation.

Organisations like the NSF are so important. Having the company of other families, being able to pick up the phone and talk to someone who knows first hand what you are going through gives you a certain strength and courage.

When Simon was first diagnosed I was frightened because I did not know what he would do next. Once he went on a bus and one of the voices told him that people on the bus were 'out to get him.' Simon punched the driver and leapt off the bus.

He got into some terrible scrapes because of the voices. He used to stand and stare at people, you can imagine the trouble this caused in pubs. The voices kept telling Simon that people wanted to hurt him, he was petrified.

Simon once said that he would hurt me - he never did. I could not bare the thought of him hurting someone because of his psychosis and then having to live with the guilt when he was better. This must be the most awful thing for anyone with schizophrenia, because it is not their fault. Their life must be hell.

Once the psychotic stage of the illness has died away it is easy to think that the person will get better, no one is ready for the negative symptoms which never go. It is heartbreaking to watch someone you love, someone who once had so much potential being content with sitting in a room, smoking all day.

Simon lives by himself in a small flat. He has a daughter and a community nurse who see him once a week, but he would not survive without me doing what the community fails to do. At times I feel resentful of the way it has changed my life. But Simon has lost more than me - he has lost everything.

The public perception of schizophrenia is appalling. The only thing they know is what hits the headlines. They are not aware of the crippling negative symptoms, of all the sufferers sitting at home, struggling to cope with the basics of life. They are no harm to anyone.

Simon lives the life of an old man. A typical day for him is so isolated. He has spent the last two days in bed.

If he wakes up and it is a good day for him, he will go to the local shop to buy a paper. He has got to be really well to cook. If I nag him enough he might do some housework, otherwise he reads, watches television and smokes until he goes to bed - and that's a good day.

I take Simon out, but it's becoming ridiculous for an elderly mother to take her 42 year old son to a motorcycle rally. It is so awkward, he resents it and so do I.

None of Simon's friends stayed around once he was diagnosed. They all disappeared. Its sad because people are only aware of their own fears. I do what I can for Simon, but I can't do everything. One day he will be all on his own unless his daughter grows up to understand.

She is five and knows that 'Daddy has bad days.' At the moment she is happy to sit on his lap and make a fuss of him, but Simon looks different, he is terribly overweight and lethargic. I worry about what will happen when she becomes more aware. I hope that she grows up to understand and respect the way her father is.

The rest of the family try to understand. I have a daughter who lives in London, she has three children. The London grandchildren have so much, any extras for Simon and his daughter come from what we can find in our pensions.

In the last year Simon has developed chest problems. He is a chronic smoker and has a bad diet. Simon's body can't make antibodies anymore, he has to have an infusion every month.

However, if we look for progress it is there. Simon bought a new telephone and without any trouble programmed 12 numbers into it. That must have taken a lot of concentration.

People see Simon as lazy, someone who has let himself go. Few appreciate the courage it takes him to get out of bed in the morning."

Pauline Arksey