'schizophrenia'

- a carer's journal

"Let's talk of reality. This seat is real. Imagine someone dead lying on it and that they have been killed by a knife. There is an atmosphere of evil in the room. The atmosphere is real. You can sense it. That atmosphere drips through the plug holes and through the drains into the rooms of the criminals in the prisons. They are evil and feed on this evil. Their madness is fed by it. They are mad. They are evil. The madness and evil are real."

It is difficult to find a response to such statements - genuinely felt. Then the discussions of the miracles he has performed, his ability to know the future, his ability to read our minds ...

By the end of the time we spent with him he had calmed.

His named nurse, an experienced and sensitive nurse, had been just outside throughout, he hadn't made a big deal about it ... just enough for us to know he was there if needed, but sensitive and understanding. He also made no issue about a colleague having been assaulted by Sam earlier ... though we continued to express our apologies and concern.

We were just setting off to visit Sam this afternoon when the phone rang.

It was the ward. Sam had attacked a female member of staff when he was being given his medication this morning. She'd had to go home. He was under observation so it was better that we postponed our visit.

In the evening Sam phoned. I asked him if anything had happened during the day. No, he answered. Had he already forgotten or did he not want to say?

We get close to despair sometimes.

The nurse who phoned assumed Sam would be fine once his medication had been increased. They have been increasing and changing his medication for the last ten years. Why do they assume they have the simple answers? If there were simple answers they would have been found and implemented by now.

We had a good visit with Sam on Saturday. He seemed calm and cheerful. He was keen to give us a picture he had painted a few days before. The only downside was the fact that a nurse had to supervise the visit. It is a while since they have done this. It is an indication of how unstable they think Sam is.

Sam's good humour then was in stark contrast to how he has seemed in phone calls and information from staff on either side of the visit. For a couple of days before and since then he has been angry and confused on the phone. A couple of times he has smashed the phone. He will ring up and start talking then ring off half way through then ring back a few minutes later. Yesterday he attacked a member of staff then was attacked by another patient. Today he rang me twice to tell me he could get me a free car then rang off quickly.

Sam rang earlier on Wednesday. He said he had found the answer ... the way forward. He told me he wanted to become a Conservative MP. He knew though that he would have to become bald first, he said.

I tried to joke with him about it in a lighthearted way but he was giggling manically and couldn't engage - then he put the phone down.

On Tuesday morning we rang the ward to see how Sam was. There had been an incident. He had thrown a cigarette at someone ... then someone had thrown a dustbin at him but that seems to have got lost in the later recountings of the incident!

Sam had only slept for an hour in the night. He hasn't been sleeping well at all it seems since he came off the Clozapine.

We discovered later that as a result of the incident Sam had been offered the choice of being restrained and injected with Haliperidol and Olanzapine or taking it orally. He took it orally.

We had asked to visit the ward round meeting that afternoon. The original plan had been to describe how well Sam was and question why his leave had been taken away. Now he is becoming so unwell that clearly wasn't possible. We waited outside with Sam. He had been with his advocate which was good - Sam asked him to come into the meeting too. Sam could only grin and laugh and talk in short phrases. It was difficult to have any conversation with him.

Soon we were invited into the meeting. It looked very high powered for a typical ward round. The pharmacist was there with a student. The ward manager and the assistant ward manager together with the psychologist were also in attendance. Sam wasn't able to take part properly. He just giggled, laughed and said yes. When he got fed up he went off to try to get a cigarette.

We tried to emphasise how well Sam was when he was off the medication ... but they just say this is because he still had some medication in his system. They believe the psychosis has come because it has now worn off. They don't recognise any concept of 'rebound psychosis'.

The weight problem - that Sam had put on at least thirty pounds in weight in a couple of months was regarded as an unavoidable consequence. The fact that the ward allow him to have several helpings at dinner time and then to order a take away pizza and burger does not seem to be recognised as a contributory factor. Surely the ward have some responsibility here?

If they can make him take his medication cannot they stop him ordering pizzas and burgers?

In the end we were with them trying to persuade Sam to take the Clozapine medication again. Given the fact that the pharmacist was there we were worried that they were planning to chose something else they could give Sam as a depot - an injection of medication that will last for a few weeks at a time. This is commonly used with patients who refuse their medication. Clozapine is not available in this form so it would mean a change to yet another medication.

Later we had a family meeting with Sam, the ward psychologist and Sam's psychologist from the Assertive Outreach Team. Sam doodled and giggled for most of the time - so we finished earlier than usual. We had been chatting before the meeting with the ward psychologist - but he seemed just as brainwashed by the approach to medication as the rest of them. There is no possible understanding amongst any of them that a patient might be able to be better without the medication if it was withdrawn properly; that is - very, very slowly.

Later that evening Sam phoned back and apologised. He was clearly feeling much better again. It was something of a relief to us.

But then in the morning he rang again just before lunchtime in an overexcited way to say he had been smoking a kilo of cannabis and was very high - then slammed the phone down.

In the afternoon he rang again to say he was feeling better again.

So some of the psychosis seems to be bursting through occasionally. I wonder if he will be able to hold it at bay. I fear that it may be rebound psychosis starting to appear.

I was up to visiting Sam on Sunday. I took him a book to read and some flowers. He had rung earlier and asked for these. This is the first time I can remember him asking for something to make his room attractive. Usually he refuses anything to brighten his room - to mark it as his. He wants to move out as soon as possible and not to recognise any of the wards as a home.

He was quieter today than he had been with Jane - but gain very well. He was keen give me a hug when I arrived and when I left and we talked sensibly and calmly for an hour. It is good to see him well - even if he is so dreadfully overweight after only a short time on that medication.

On the way out the nurse said that he hadn't slept the previous night. Sam had said he was tired. Perhaps that was the reason for his quietness.

Later that evening he rang in a more argumentative mood like the less well Sam. It was only when Jane was firm with him that he backed down and seemed more reasonable again which was positive.

Is this though the start of a relapse?

On Saturday Jane visited Sam with presents from our holiday. I was still in bed laid low by my tummy bug.

She said he was the best she has seen him for years. He was articulate, concerned, loving, sensible, understanding, reasonable ... in fact sane. So the best he has been for years is when he is off medication ... yet the nurse told Jane last night they had seen a marked deterioration.

Why the mismatch? When you talk to the nurses all they see is a problem because he is not taking his medication. They are not able to recognise that e is currently better without it. It is not part of their training or programmes. So it is wrong ... they cannot question the treatment. He my soon relapse again ... but the fact that he is at his best off medication should surely tell them something ... especially if a new relapse is rebound psychosis from coming off his medication too quickly.

The following day he rang us and spoke to Jane. He told her what a good mum she had been to him in supporting him and that she couldn't have done more. It was very moving to hear those words from him when he is so well.

We were away on holiday last week to a place exotic enough to give us both bad tummy problems! They are getting better now so I am sure we will survive.

When we arrived home on Friday Jane phoned the ward straight away. A break does us good in helping us to switch off but there are still times when we worry about Sam - probably Jane more than me. We were particularly worried this time as Sam had stopped taking his medication. There was potential for him to relapse and we did not know what the consequences of that would be.

When Jane phoned she was told that Sam was still not taking his medication so his leave had been cancelled. She said they had notes a marked deterioration in his mental health - that he was talking often of Kundalini and God. He was talking of Kundalini and God lots of the time while he was on the medication. So what had changed?