'schizophrenia'

- a carer's journal

If all goes according to plan we will be away on holiday for a couple of weeks.

The rest and relaxation will do us both good.

Regular readers though will know that something always goes wrong when we are away on holiday. Watch this space!

I'd not been looking forward to Sam's next leave. After his violence to me on the last visit and him running away the visit before, I was frightened by the whole thing - especially just before we were due to go on holiday. But Jane knew it was right for Sam. She rightly always puts him first.

I was agitated trying to get to sleep the night before and had to go downstairs to calm myself. Eventually I slept but in the morning I was anxious. When I got up I could feel a sore throat coming on and aching limbs. I was sure I was getting a cold. In the afternoon when Sam was with us my cold symptoms had gone but I felt as if I was going to be sick.

In the morning Jane had arranged for Sam's care co-ordinator to visit, just before Sam was due back, to give us some extra support. That worked fine - apart from Sam deciding he needed a bath five minutes before we were due to leave.

In fact in the end it all worked out fine.

What could I have been worried about?

His visit home was nice - but difficult - for me at any rate. I'm frightened all the time of what might happen - and I am distressed by his state. They think he is getting better even though his thoughts are so confused and he is hard to understand because his speech has become slurred by the medication.

He could not settle but kept moving from one thing to another.

He would light a cigarette then half way through roll another and light it - discarding the first. He went to rest in his bed then came down within seconds for a "smoke break".

"We'll ring James and I'll go on the run," he said. He is desperate to be out of there. I am sure a large part of his current distress ("illness") is that he is locked up against his will.

He believed they were going to lobotomise him. He was genuinely frightened. Where has that come from?

We tried to go for a drive before it was time to go back to make the departure and leaving home more gradual. But we had to stop for a cigarette where he appeared to want to run off - but which we managed to turn in into a race to the car. He was also slightly violent towards me three times on the way back. Once he was finally safely back I was drained. But at least I could relax then. Meanwhile Sam was back inside having to cope with his detention.

We picked Sam up from the ward and took him to the car. He looked pleased to see us but frightened and edgy.

He sank into the back seat.

"Normality," he sighed.

We'd had good reports from some friends who had visited Sam recently. They had been told he had been difficult earlier in the day but with them he was fine. He opened up and was outgoing and cheerful. We'd hoped to visit him that day on our way home but were delayed in a traffic jam.

The next day when we visited Sam he was introverted - and unable to communicate. The only comprehensible statement we got from him was "I am Jesus". It was all so depressing again.

He had smashed the computer sometime earlier. The staff were aware of that but not his current mental state. They only go by behaviour. If he is not being violent then they think he is okay. It might be that when he is being violent he is being rational. How else can he protest against being detained?

We were told today that he'd had a good day - but that he had been urinating on his clothes in his bedroom. Is that another protest? The IRA detainees started a "dirty protest" against their detention.

The next day I had to drive just a mile or so to the post office in the morning. It was raining hard. I was nervous as I got into the car.

Of course it was fine.

Later in the day I had to drive a longer journey to pick up relatives from the airport. Again I was nervous. Again it was fine.

The next day we drove home. There was an accident on the motorway. A fatality. The motorway was closed. It took us three hours before we were back on our way. Later we met torrential rain and I found myself heading into the spray between two large trucks and cautiously retreated.

We got home safely after an eight hour journey just before midnight.

We'd half planned to pop in to see Sam on the way home!

I had a fitful nights sleep. I would doze for about thirty minutes and then waken, thinking of Sam, of letters I might write to complain or to explain, recent events drifting through my mind incoherently.

I woke from three nightmares. Each was different - but each had the same subject and ending. I was in a car, driving too fast - recklessly so. I was out of control. The car left the road at extreme speed. Then I woke up, frightened, knowing what would have happened next.

When I woke in the morning it was a few moments before I remembered the nightmares and realised they were dreams and not reality.

I'm not one for looking for meanings from dreams - but to have had almost the same one, with the same awful conclusion, three times in one night. It left me feeling frightened, delicate and unsure.

Jane rang the ward to speak to Sam. We'd had a missed call from him on our phone when we were out.

The nurse who answered the phone was the one who had seemed angry with us when showing us out one day. I had become worried that he may have started persecuting Sam.

He apologised.

He had been tired that day after a long shift, he said. Since then he was the one who had been trying to get Sam out on leave. He recognised the need for it.

I was glad now that our response to him had been measured. It would have been so easy to have been angry with him - and indeed away from the situation I had been. It is hard but I believe we have to find that gentle approach and to believe it will win in the end. Otherwise whatever happens to Sam I know I will have lost.

I need to channel the anger.

I know it is destructive. It eats away at the soul and leads one to hurt others rather than to create solutions.

The night I lay awake wailing I knew it then. That anger would not provide the solutions - but that we needed to find a gentle and kind way. Conflict had made me ill. There had to be a better way.

I was awake during the night thinking of Sam - his slurred speech from the medication, my fears he had been assaulted by a member of staff, my anger that another professional had been suspended from a joke of Sam's but that this possible offence would probably never be investigated, the ways that Sam being pinned down and injected was being used as a punishment not a treatment. I was angry again with no clear view of where to go next. When we had complained before about nurses then things had got worse.

In the end we rang the Assertive Outreach Team. One of them was visiting that day to take Sam out as the ward staff wouldn't. It is a huge nonsense. He asked Sam about the incident I was worried about and got nothing clear from him. At least Sam had been given the opportunity to talk about it. Later Jane was able to talk with the consultant psychiatrist from the Assertive Outreach Team. It is clear they share our concerns. I hope they may begin to take a lead on some of them.

Sam is alleged to have assaulted staff since he has been on this ward.

He has never done this before - though they have been desperately scouring his records to try to prove that he has.

Any assault is unacceptable but these seem to have been relatively minor.

As a result he has been pinned down on each occasion by a minimum of three staff and injected with a sedative. I question whether this was ever necessary to restrain him - but rather a punishment for bad behaviour.

Sam spoke with me on the phone the other day about such an incident. He wasn't criticising the nurse - but it seemed he was implying the nurse had assaulted him though it was not clear how. This is the same nurse who a little while ago was complaining to us angrily that Sam had assaulted him - and also said things would be better without others interfering but rather letting nursing staff get on with it.

Sam said that another patient had said to him regarding what had happened, referring to the member of staff, that,

"He shouldn't have done that to you."

Sam's medication has been changed. He has been transferred to a "typical" rather than an "atypical" anti-psychotic. It is one of the older style anti-psychotics. It is recommended that this medication should be taken in as small a dose as possible for as short a term as possible. Sam has been prescribed a large dose by injection as a long term medication. There is no other plan.

When we talk to Sam now his speech is slurred. He is difficult to understand. He drools.

This is what they regard as making him better.

One of the long term effects of this medication can often be tardive dyskinesia.

"Tardive dyskinesia is characterized by repetitive, involuntary, purposeless movements. Features of the disorder may include grimacing, tongue protrusion, lip smacking, puckering and pursing of the lips, and rapid eye blinking. Rapid movements of the arms, legs, and trunk may also occur. Impaired movements of the fingers may appear as though the patient is playing an invisible guitar or piano."

Tardive dyskinesia is irreversible.

Before the planning meeting we had given Sam a plain notebook and a pen. So he sat there at the start with his notepad on his knee, pen in hand looking every inch the professional. He started writing the names of all those present at the top. He asked the name of the student doctor and wrote that as well.

It was great - he was giving himself power - making it clear he was just as important as everyone else there.

He intervened in interesting ways at different times during the meeting. Once he crossed the small room to the psychiatrist and touched him gently on the shoulder.

"Just pretend you are not a psychiatrist," he said. "Let's imagine we're not in a hospital but we are all outside in the real world. Then we can have a proper discussion."

Oh - if only!!!!!

Sam was asked if he as religious and said not but later tried to lead us all in singing a gospel song about Jesus - heaven only knows where he learned that!

He then seemed confused as if the meeting was his drama workshop and started a vocal activity before looking straight at the psychiatrist and requiring him to continue. Sam's psychologist gently reminded Sam that this wasn't a drama workshop.

For all the good it was doing it might as well have been - in fact a drama workshop might have been more effective for all of us.

I've just been so very angry. I was angry over what has been going on over the last few weeks. Then ... I can't believe it can get worse ... but it seems to. Perhaps not worse - just more that is just as bad. If I find it hard to cope - how must it be for Sam?

Some things are so positive - some good and kind and caring people who want to help us. But there are some in the system whose actions and attitudes I find it difficult to find words to describe. They are not used to being challenged. When we do then they seek revenge. It makes it harder to even challenge when the consequences can not just affect Sam but other kind supporters also.

Sometimes even writing about it becomes too difficult.

So I haven't.

But I plan to tonight and to schedule some posts over the next few days.

They had prescribed Sam haliperidol when he was admitted to the new ward - and more to be injected when needed. As this seemed to be most days, he was receiving the maximum recommended dose of olanzapine and that of haliperidol each day. We felt that the haliperidol was making him agitated and could have been part of the cause of his problems.

They may eventually have felt the same. We were pleased when we heard they were discontinuing the haliperidol. The less good news is that they have replaced it with clopixol - another older drug. But as he still has the haliperidol available when needed he could be administered three anti-psychotics each day as well as a benzodiazapine and a mood stabiliser. There is no research evidence for the effects of such combinations. It is all trial and error.

On a positive note he does seem more "subdued". For "subdued" though read "doped up"!! At least he hasn't hit anyone recently as far as we are aware.

We are returning home briefly from our break away for a meeting on Monday.

After our meal last night I could not sleep at first. Then I was surprised to hear myself start to wail. It was a loud long moaning wail. It just went on and on so loud. It turned to a kind of keening. So much pent up emotion - anger and despair just coming out in a long low moan. There were some sobs too but few tears. Just that long, noisy, despairing wail.

I tried to articulate my distress but there are no longer any words.

I've been less well again myself recently. I sometimes wonder how much longer I can keep this up. But somehow we always manage to.

We're away for a few days staying with Jane's brother and his wife. We went out with them last night for a meal to celebrate our wedding anniversary.

The last time we saw Sam the nurse showing us out mumbled about people interfering and how much better it would be if it was all left to the nursing staff. Staff he has been assaulting. Staff who pin him down and inject him. Before we left for our break Jane spoke to a nurse on the phone. Don't worry, she said, I promise he will be safe here.

I think it was she who phoned me last night when we were in the restaurant. Sam had gone over the fence that afternoon. They had decided not to try to pull him down. Then of course they cannot get out. The key to the fence gate has to be fetched from inside and takes for ever to undo - or one has to go through the whole hospital with its locked doors to get out.

So by the time they went after him he was already long gone.

This was the middle of the evening so he had by now been missing for a while. The police had a helicopter out searching neighbouring fields with heat seeking cameras.

At least he might have a few hours of freedom. He would probably come to little harm in that rural area.

As soon as I got back to the table in the restaurant my phone went again.

The police had found him. He was safe.

I had mentioned a few times on the new ward that there was no information for families. I was trying to be helpful. I did not point it out in a complaining way - but in an effort to explain how useful it would be and that few families might have our knowledge of the system - and that having to ring the ward from the gate in the high wire fence rather than going to the main reception, after parking in the disabled spaces round the back was not the most obvious way to gain entry.

Eventually we got the promised carers' leaflet that I have been previously told did not exist yet by those planning to work on it. It turned out to be the patients leaflet with a glossy cover stapled to the top saying "carers information".

Do they think we are stupid or what?

When Jane talked with the ward manager she suggested we take Sam out for leave. This seemed to make no sense as they had stopped taking him out for security reasons. Was she just trying to placate us or set us up? I was worried about taking him out.

On the last ward recently leave was escorted and worked well when it had been carefuly planned. That worked well. Jane was keen to try again - to show leave was helpful to Sam.

So we took a friend with us.

On arrival ... there had been incidents in the morning ... so it was not possible to take Sam out. Of course we understood ... but when Jane phoned only a little earlier of course it was fine! So our friend had made a wasted journey. Even more she had to put up with Sam abusing her - as he has few who he has power over at the moment - feeling subject to power from others.

The nurse in charge took some time to talk with us which was good.

When Sam came in to the room he was angry and beligerent. It took a while for him to settle. By the end of the hour he had become calm and was able to explain with some articulacy how difficult it was living in such an eclosed environment.

Eventually we were shown out through the locked gates. It was a member of staff who Sam had hit that morning. He'd already been hit by Sam before. He let us know - and also that he had informed the police. He didn't go to work to be assaulted.

Of course not. We were apologetic and trying to be understanding.

Then he started a diatribe about people interfering in the work of nursing staff. It should all be left to them without outside interference. I asked if he was referring to us.

He refused to answer.

Yet again it seemed as if we were getting the blame.

It continues to get worse ...

It started well. We had a really useful meeting with Sam's care co-ordinator. He came round to the house and we discussed recent events and current issues. At the end he even rang the ward to check on Sam's current medication as ward staff had refused to tell us. Of course it had been increased. We were all disappointed but not surprised to find Sam had been prescribed a large dose of haliperidol on top of the maximum recommended dose of olanzapine he was already on. Sam's care co-ordinator was concerned as he did not like the drug. On it many patients exhibited symptoms of agitation which could be misinterpreted. We've just heard from a friend who was working on the ward earlier in the week. Sam was exhibiting exactly those symptoms then.

But there is worse.

Jane phoned the psychiatrist. He was not available but to his credit at least he did phone back. However he was unable to listen and kept interrupting. I could hear the conversation and realised Jane's temper was rising as he was so dismissive and rude to her. So I took over briefly. Then he at least stopped interrupting as I explained our concerns. I passed him back to Jane. It was not long before he again cut her off. He was silent for a while to simulate listening but made no attempt at communication. Though we gleaned one piece of information.

It seems that Sam has attached three members of staff. Nobody has told us this. We have spoken to three nurses in the last 24 hours - including one who was attacked and nobody has mentioned it. Jane phoned the ward manager to find out this information. But it was like drawing blood from a stone to get that and had no defense for her staff that they had not told is this when we had asked how things were going.

Sam is usually a mild and gentle person. This anger and violence has come about recently.

It was only at the end of Jane's conversation with the ward manager - where we had complained about poor communications - that she mentioned that two nurses had made complaints to the police about Sam's assaults. No assault is excusable. However we are worried that it is part of a ploy to get him moved to a yet more secure ward - a forensic setting. As we understand it he has to have a criminal record to get referred.

Each time he moves to a more secure ward he deteriorates.

If they want to make Sam even more aggressive then such a move will certainly help.

Yet they said we could take him out for leave. I think we are being set up.

So he was transferred.

Nobody who knew Sam was consulted. His care co-ordinator was not consulted. It was just stitched up between one hospital and another. The whole arrangement seemed to be for their joint convenience rather than Sam's needs.There was no planning meeting between the professionals involved - just one hospital phoning another to arrange the transfer of a piece of merchandise.

That may seem to strong - but it is true.

Recently after Sam had gone over the fence I stooped at the hospital on my way past to ask to speak to the clinical manager who was covering for the ward manager who had moved on. She was too busy to see me and discuss my concerns as she would be in a "sales meeting" for the next ninety minutes. A "sales meeting"? What are they selling? I thought it was hospital beds but it is now clear it is patients.

The new ward has reasonable facilities and is well staffed. They were keen to get Sam involved and doing things - though they seem to have a very behaviouristic approach.

But just before Sam was moved he was prescribed lorazipam twice a day. This had been available as needed and had been useful in that way. However now he was taking it twice a day the effectiveness would be reduced - and as it is addictive there is another problem being created. On admission to the ward he was also prescribed haliperidol. So he is now on the maximum recommended dose of Olanzapine - and anti-psychotic and the maximum recommended dose of Haliperidol - another anti-psychotic. There is no recommendation for dosage for combinations as this is not researched. We thought we had been successful in getting Sam off unregulated combinations of anti-psychotics but they insist on continuing with such games. As well as these and the benzodiazapine - Lorazipam - he is also on a "mood stabilizer" - sodium valroate.

But on this combination of drugs - he seems to be getting worse not better.