'schizophrenia'

- a carer's journal

We had hoped we might have been able to go for a walk around the grounds with Sam and a couple of staff when we visited today. Jane had rung to try to arrange it yesterday. But just before we were due to set off we received a phone call from Sam's named nurse, J.

As well as smashing his guitar on Thursday evening, on Friday evening Sam had slapped J's face and later thumped him in the stomach. He was unable to explain why he had acted in this way. He denied he had done it and claimed the mark left on J's face was a birth mark.

So of course his leave has been cancelled again.

It is lucky in a way - though not for him - that it was J. J is very experienced and genuinely wanted to try to understand why Sam had acted in this way so reacted to it all very calmly and properly.

The phone conversation though was very positive and both J and Jane said how useful they had found it.

Sam was quiet but fine when we visited. A bit distant perhaps. Friendly to start with but became more distant as we chatted. He mentioned slapping J but could not explain why - other than he was angry at being detained.

He seems angry too at seeing us get older. Perhaps it reminds him of having lost his youth in hospital. We have noticed too how he is aging more quickly - lines around his eyes and so on. No doubt effects of the medication. We worry the internal effects may well be the same.

When we have spoken to Sam on the phone this week he has just seemed so very rational and sensible. It is good that he seems to be settling again. Jane reminded him that we were visiting tomorrow and would bring him some tablature for his guitar.

"Don't bother," he said.

"Why not?"

"I've smashed the guitar."

That's third now, I think. Or is it the fourth?

But the monetary value of it is only the same as the cost of less than two weeks of his tobacco consumption at the moment. If he is getting pleasure from it - and even from smashing it in frustration and anger at times - perhaps we should regard it as a disposable resource.

Jane decided she wanted to go to ward round meeting. She had rung the day before to say she was coming and arranged to be there at two. It has been made clear that we are welcome.

Then at about half past eleven this morning Jane picked up a message from our phone that the meeting was this morning as the consultant had another appointment this afternoon. He would have to leave by ten past twelve.

As it takes us at least twenty minutes to get there, depending on traffic, I revved up the car while Jane grabbed her coat and tied her shoe laces. Twenty minutes later I was pulling up outside as Jane was phoning to say we had arrived.

Sam was really calm. He was great with Jane and was polite in the meeting and quite positive. Until ...

the doctor spoke of him getting a second opinion from another psychiatrist.

Sam cannot accept that one psychiatrist should offer an opinion on his mental health never mind two! So he became angry and started swearing at the doctor. It doesn't help him get his home leave back ...

but he never has been good at playing the game.

Later in the corridor with Jane he was looking over his shoulder and calling out aggressively to the doctor.

He calmed down with Jane and went into the activity room to show Jane a painting he had done of a blue face.

"It helps me to paint in blue when I am angry."

Then he played his guitar for Jane - it is kept in that room for him. Even she could tell it was out of tune. After a chat with the occupational therapist it was agreed that I would pop in later and tune it for him and bring tobacco - he has run out again already.

Then he went to sit with Jane in the dining area. They sat on a couple of easy chairs at the side. In the middle are large table and seats units made from heavy metal with the four seats and the central table all welded together. We had been sitting on one with Sam at the weekend when Sam had begun to get a little aggressive and I had been worried as it was difficult to escape easily from it when sitting in it. Well Sam got angry again with Jane talking about the doctor and stood up - then lifted and threw the heavy table unit against the wall before storming out.

Jane knocked on the office door as she felt someone should know about it. Nobody made a fuss but the unit was lifted back into position. On other wards they might have been setting off alarms and people running down corridors. Sam has been pinned down and injected for far less. But here it was just matter of fact. Everyone was calm and the situation did not escalate. The occupational therapist joked with Jane about it saying that she had been surprised they were not bolted to the floor - so it had clearly happened before. Jane waited there on her own while Sam had a cigarette.

The ward manager wandered past and popped in to chat with Jane. "I'm worried about you being in here on your own," she said and took Jane to the quiet room where we often meet Sam - much further away from the office if there was a problem! There though she chatted with Jane and made a point again of saying how she has two adolescent sons and that if either of them had to be admitted to a psychiatric ward then she would be on the phone every day. She emphasised that she thought Jane was restrained and would be justified in making even more of a fuss about things. This was all from nowhere ... she has spoken similarly after Jane has had to complain to her but now it was just one mum talking to another about distress for one's children and how to deal with it.

Sam came back in and said to Jane, "We don't argue really do we mum? We're just saying the same thing really."

I was sitting in the car reading the paper I had walked down the road to buy. I hadn't planned to go today. It is just too much for me at the moment. Jane rang and I went to pick her up. I had planned that we might then pop to the pub down the road for lunch as it was getting late and I guessed Jane might appreciate it. But she explained we needed to get tobacco and then tune Sam's guitar. So we went to the shop and came back and waited in reception ... and waited in reception ... and waited in reception. Jane told me of the morning and as she started to talk of the conversation with the ward manager I had to hold back the tears. It is always human kindness that does it to me. Eventually we got in.

Sam was great. He seemed pleased to see me. The activity room was opened and I looked at Sam's picture and tuned his guitar. I started to remind him of some basic chords. A few more patients came in to listen and watch. Soon the nurse came in and explained it would be easier for staff management if we went to the quiet room while we tuned the guitar and then returned it to a member of staff. But he did it very nicely.

Sam had remembered some chords and was beginning to enjoy making music. It is good for him to have something to focus on outside his head. I promised to find him some tablature to take in though I know he will have difficulty in concentrating to follow it. But it was a good session.

Then Jane and I went for a late lunch - and a beer!

This evening we have both been drained and exhausted.

Sam phoned just now. He was clearly very over-excited and irrational.

He mentioned his named nurse J who was in the office writing things down.

Alarm bells rang in my head straight away. A senior nurse, in the office, writing things down - and a very excitable and lively Sam wo saw this as being significant. This sounded like an "incident". From previous occasions Sam knows that a nurse writing notes after he has one something stupid can have consequences.

I tried to get him to tell me what he thought J might be writing down. He was in such a state that it was difficult to get anything sensible out of him but it was clear he had been racially abusive to someone who had become very upset. Sam mentioned the words he had used. I hope it was only verbal abuse and nothing more.

I suppose we had better ring J in a while to find out what he has had to write down and hope that Sam has settled a bit.

We visited Sam today and he seemed in good humour. He talked about irrational things in the most rational way.

It was just towards the end that he seemed unable to keep it under control much longer. He started staring at me strangely and telling Jane she was ill. So we decided to leave while the mood as still quite light.

Last week Sam asked if he could have a guitar. He has been enjoying using a mock guitar with a computer game on the ward which has probably got him interested again.

In the past he has smashed up two guitars he has had on the ward - one within hours of him getting it. But they are only cheap acoustic ones. He spends more on tobacco in a fortnight so it is no big deal.

Jane rang the ward to ask if we could bring one in ... it would have to be discussed at ward round. I suppose the strings are potentially dangerous items.

Well at ward round it was agreed that he could have one so yesterday Jane took it in - of course with some more tobacco! Sam was thrilled to see it. He spent half an hour concentrating on trying to play it with her. She had been told that he had been not at all himself and very rude with staff on the ward that morning but now he was so settled. It is good to have something for him to focus on outside of his own head.

The phone rang again this morning. Jane answered it.

"Hello Mum, can I speak to Dad?"

"He's in the the shower Sam. Can I give him a message?"

"Just tell him 'Thank you'."

"Thank you for what?"

"For everything."

The phone rang.

"Hello?"

There was a clunk as someone put money into a payphone.

"Dad?"

"Hello Sam." It was unusual for him to have the change for the phone. Usually there was silence and we rang him back.

"I've been locked up with mad people for over eight years. What have you done to help?"

"But Sam we have tried to ..."

There was a click as he put down the phone.

Sam seemed very well when we spoke to him on the phone this morning and when we visited him this afternoon.

But we were told that last night he had smashed his CD player and had urinated on his bed.

Jane decided to attend the ward round meeting earlier this week. We had been to the planning meeting only a couple of weeks earlier. But of course, yet again, things change so quickly that there is a need for a short term response and the longer term plan can be quickly forgotten.

We wanted to emphasise our thanks to the staff for the fact that they were still being positive with Sam and with us while things have been difficult. Also we wanted to suggest that there needed to be a major input of some sort in terms of psychological and therapeutic support to try to get Sam over this blip.

They started though by trying very hard to reassure Jane that they had no intentions of trying to move Sam elsewhere. Jane must have mentioned this. It is a real fear. It has happened everywhere else. They are so used to "improvement" in their behavioural sense with the possibility of patients moving on. When an initial improvement leads ultimately to further decline they are at a loss and eager to move him on before it becomes apparent or because they do not know want to do next. Sam is now on a forensic ward. Where does he go from here if they can't cope?

But only a few weeks ago on Christmas Day Sam and the family enjoyed a lovely day together. So it can go well for him and us. How do we get back on the upward spiral?

So they were trying hard to reassure Jane of this. Then they started to talk of medication.

They see a need for change. They do not understand him. He seems to be outside their experience. Usually on Clozapine patients do so well ...

Sam has been there for eighteen months now. This is the second time he has been on Clozapine. Both times he has been taken to hospital with physical health concerns.

So what do they propose now?

More psychological and therapeutic support?

No ...

... an additional anti-psychotic as well as the Clozapine! Amisulparide. I haven't even Googed it yet - or any evidence of its efficacy combined with Clozapine. But haven't they got it yet? Sam as been on so many combinations of anti-psychotics and other medications and none of them have been the long term answer. Any idea that they will suddenly find the magic combination seems doomed to failure. As a psychiatrist once made the mistake of saying to us as they tried a new combination, "It's just a game."

Jane did very well at keeping her temper ... or so she tells me! I think she may have done so. Because the consultant also talked very genuinely about wanting a second opinion as this was out of his experience.

A previous consultant at a different hospital a couple of years ago had suggested the same ... but they moved Sam on before it could happen.Then we were recommended a name. He had agreed to be involved. So Jane recommended him this week and it seemed to be taken seriously.

Whilst in many ways it is very bad news that Sam continues to be so troubled, it is perhaps good news that it is recognised that what we have said continues to be true and that they are open about looking at different approaches.

Of course also after all this in the meeting there was not time to discuss our view that there needed to be an emphasis on psychological approaches. There are occupational therapists and a psychologist attached to the ward. Why are they marginalised?

So it was left vague ... additional medication ... a second opinion ...

In it all Sam calls on the phone ... very positive to us at the moment ... but in a world of his own.

On the phone on Saturday Sam had seemed very well when he called up a couple of times. Much better than we have heard him for ages which contrasts with his recent behaviour. That boded well for our visit in the afternoon.

The visit started well - though we now have a staff member standing just outside the door again. It became noisy outside - people talking loudly to be heard above the vacuum cleaner that was getting close. The door was left open - "for our safety". Sam has always hated the sound of a vacuum cleaner. I wonder if it sets off difficulties in his mind? I know often myself I find too much noise stressful.

But Sam suddenly changed. He started talking with us aggressively about illnesses and weaknesses of our own. Why had we become ill and weak? We were getting old - but that was in the mind and we should not succumb. He became aggressive and I was concerned he might become violent. The staff member outside was chatting with another patient. I could have called him but it did not become necessary. I said to Sam that we had shopping to do and ought to go - but he pleaded for five minutes more to finish the conversation. Then he started to harangue us again. Soon we found a break to leave. Sam didn't seem sorry to see us go. He was angry with us for getting old and weak (not our perceptions of ourself except on bad days!) Much of our weakness is caused by our reaction to Sam's own distress and containment - but also much of our strength.