'schizophrenia'

- a carer's journal

We picked Sam up for some leave for a birthday treat - a couple of days before his actual birthday. It only happened because two sympathetic staff were on duty.

In the car to start with I thought it would be a disaster. Sam was off the wall. His conversation was just completely confrontational and so difficult to address.

But we went into the countryside and found some climbing. Sam started to chat with a poor climber who was out of this depth with the climbing - never mind Sam's interventions and advice and attempts to show him how to do it wearing his trainers and then in bare feet.

Then we had a picnic which went well and a walk before going home for a cup of tea and birthday cake.

Before we departed for home another couple of climbers got out of their car. Sam recognised them as an old climbing friend and a famous climber who Sam had once known. At first I dismissed it and tried to move him on - but he was right. The friend came and chatted with Sam for some time - even though he was eager to get started before the rain came.

Sam chatted sensibly and talked of old friends they both knew. He was in the real world now. There was a purpose for it. On the ward it is easier to be ill.

Then we went home. I rang my parents who wanted to come round. We shared a cake and Sam blew out the candle and we sang "Happy Birthday". He even went for a bath and changed his clothes. Suddenly he wanted to be part of the "real world". There is no "real world" to want to be part of on the ward.

I had dreaded today and the possible sadness of confrontation with Sam while trying to celebrate his birthday - but it had gone fine. Better than fine.

We buzzed to be let in. And waited. The doors are locked and the intercom takes for ages to be answered. Eventually a crackly voice I could hardly hear. I shouted in to it to make myself heard. Eventually there was a buzz and I rushed to push open the door quickly before it was locked shut again.

Another couple were waiting in reception. We started to chat. You know ... the usual ... how long ... for what ...

The young woman sat there composed but angry and distressed as she told us.

They were visiting her brother. He had been detained there a couple of years ago but had had a relapse. He was living in sheltered accommodation. Twenty police officers had gone to his home as he was in danger to himself. They had just had permission to use tasers. So they tried it out on him. Perhaps we had seen it on the front page of the local paper?

An ill man - in no danger to anyone but himself - with twenty police officers in attendance - and they used a taser on him. Yet she still sat there dignified and controlled as we babbled of our own problems.

Then Sam was brought down to meet us. We introduced him to them and he shook their hands. A privilege for him to shake the hands of other families dealing with injustice for those they love who are being harmed just because they are ill.

And what do the ward staff know of all this I wonder ... ?

It was after Sam had been interviewed. He was upset and angry. We have no idea of what went on.

We calmed him and spent some time together. He even spoke to a Jean, a friend of Jane's, on her cellphone. The he started to get angry with us. First with Jane and then with me. He lifted his fist as if to strike me. I put up my hand. He started thumping my hand. It enable him to get rid of some of his frustration without actually harming me.

Soon after he asked to hug us both and said how much he loved us.

He is so confused.

In the afternoon he phoned.

"Im sorry Dad. Are you okay? Tell Mum I love her and say 'Hi' to Jean."

Sam was interviewed as part of the investigation the other day. He needed a "responsible adult" with him. We offered one of us to be there in that role. On the day we were told that he had preferred to have the advocate with him.

That would be fine - but he doesn't know the advocate. There are members of the ward staff who he is close to who would have been better to accompany him.

This is clearly political. The advocate was wheeled out at the last CPA meeting and sat between the consultant and Sam's named nurse. Her only contribution was to ask if Sam was "compliant" with medication - and when told "yes" said that he clearly liked it then. Afterwards she told Jane that she had only met Sam a couple of times and found him difficult to engage with.

Today Sam phoned me. He found it difficult to talk as he had the advocate at his elbow. He kept asking her if she wanted to talk to me but she clearly didn't. I supposed she was waiting for Sam so she could talk with him. Why this sudden interest? I encouraged Sam to talk to her and to close the conversation with me.

But afterwards I started to worry there is something going on. They don't like us having any power and infuence - find it difficult to cope with - and I feel the advocate is being used as a counter balance to us. I want Sam to have an advocate. I think it is a really important role. If he'd had a effective advocate in the past then perhaps it would have taken a weight off us - but now I feel she is being introduced to take a weight off them.

We have enough battles on witout them introducing this.

It has made me very depressed.

Sam has made an allegation against one of the professional team supporting him. It is of course nonsense. He likes to say things for effect. His notion of reality in any case is at its best totally inconsistent with that of most people.

When he was asked about the allegation he said it was a joke. But he was decreed not to have the mental capacity to withdraw the allegation, whilst he is regarded as having the mental capacity to make the allegation.

Who is most mad here?

Sam rang this morning. He said he was going to get a gun and shoot me dead.

Happy Fathers Day.

I have a lot of emails I haven't replied to - going back for quite a while now.

Thank you all for your supportive comments. Often they come from situations of similar distress with which I understand and empathise. I do so want to write back and offer support in return.

If you are waiting for a reply from me I will try to write soon.

Sam phoned early yesterday morning. Jane answered and heard the usual pips from the payphone with no money inserted. She phoned the ward to ask to be put through to the patients phone. First though when the nurse answered she asked how Sam was.

Then the diatribe started. This was the nurse who had been in charge the last time Sam had been beaten up on the ward. The nurse who had been on duty when Sam had been pinned down.

She just came out with how ill he was, how disruptive he was, how he was inappropriately placed, that he was likely to get beaten up again because he was in everybody else's face, that it was not surprising he had got beaten up before, and even more. Jane was just stunned. How do you respond to this? Until recently she was his named nurse!!!!!

Eventually she put Sam through. He'd been waiting on the corridor outside. Watching the nurse talking to Jane on the phone though the window.

Because nurses are on one side of the office window and patients on the other.

Jane didn't mention she had been talking to the nurse but Sam could see.

"Don't be friends with her mum," he said. "Just don't talk don't to her. I love you mum."

Then he put down the phone.

At lunchtime he phoned again. I answered this time. He sounded crazy. He made no sense. He was talking of dinner parties with friends many years ago and how they were the cause of his all his problems. I could sense he was angry and distressed in irrational ways. There was lots of noise in the background. The ward did not seem calm.

Someone walking past made a comment about him being on the phone to his mum and dad. Perhaps he is seen as a "mummy's boy" which is why sometimes he tries to be "tough" in untypical ways.

I tried to sooth and calm him - to get him to sit on the floor and settle a bit. At first I thought it had worked and he was calming but then he became angry again. He started shouting then I could hear him banging the phone against the wall. The phone went dead.

I sat for a while. I was disturbed by the conversation and the heightened tension on the ward. Often it can sound like that on an evening - but this was a Sunday lunchtime.

I phoned the ward. The first two times the phone was eventually answered then went dead. It was as if someone had put the phone down straight away to avoid answering. the third time it was answered.

She was upset - the patients phone was smashed with wires coming from it, they were trying to sort it - Sam was in his room - he was very disturbed - no I couldn't visit Sam, to try to calm him - there were safety issues ...

She seemed in a panic.

I was disturbed. I was worried she was trying to engineer a situation where Sam would get beaten up so he would get sent off the ward. She wanted rid of him. The ward didn't seem to be in control that afternoon. It was very upsetting. I insisted I wanted to visit.

Sam had been given additional medication - again - he had been medicated yesterday on return from his leave with us when this same member of staff as in charge.

She said I could phone later to see if it was possible. She was concerned about safety. I told her that I would take responsibility for my own safety and assured her that I was not going to hurt Sam.

But I know it was a difficult situation. I guess things were a bit out of hand on the ward. There is a new patient and Sam is not easy. The last thing they want is observers from outside ...

But we were worried about Sam and genuinely felt we could help calm him. It has happened on other wards before and de-escalated things.

Jane rang again later. No we couldn't visit. Out of the question.

So we went for a walk in the sunshine and had an ice-cream. I'd started aching all over again and Jen felt sick. The ice-creams helped us feel better for at least thiry seconds!

As agreed the ward phoned us at five. Sam was a little better but still "edgy". We think another member of staff had been brought in. That's good as the previous time Sam was assaulted by another patient and the time he was pinned down by staff was when this paricualr nurse was in charge. We don't have confidence in her ability to cope. We have also argued with senior management that the ward is under-staffed at times. So if they can bring in additional staff when there is a problem then that is good.

So how do we follow this up?

There are difficulties. Sam is not well. But if there is a member of staff in a responsible position who can not cope with Sam when she is on duty but is also antagonistic to him - then how should we respond to this?

We took Sam out yesterday - with two members of staff. So no pressure there then! Just nice and natural - an informal stroll!

Except Sam was clearly excitable. it went reasonably - except when Sam ran off down a bank towards a fishing pond to the astonishment and distress of one of our escorts. I'm not sure the fishermen were too pleased either - but Sam just wanted to run. Usually he has just twenty yards or so to pace on his corridor.

As we were going back Sam stated to get a bit bolshy. He was just exercising his power. He wanted another cigarette. He would return to the ward when he wanted rather than when the staff did. But somehow we felt responsible for getting him back.

Eventually he was safely back after at least a bit of fresh air and walk in the woods. But would these aspects of the walk go on his notes as "incidents" and affect future leave arrangements?

It so much depends on the experience and confidence of staff.

Sam's phoned lots this week. He's seemed uwell each time. This lunchtime he told me Jesus visited last night and that he was huge. After a few more words he slammed down the phone.

Then we spoke later and he was able to chat quite sensibly.

We hope to take him out again tomorrow.

At the last two CPA meetings I have tried to discuss Sam's engagement with activities planned on the ward. The usual that we get is that he refuses to to get involved, that he never gets up for the morning meeting so doesn't know what is going on and misses out, that he won't involve himself in any group work ...

So what is being done to engage him - is what I am trying to ask - but get no satisfactory answer.

A few weeks ago Sam rang in the morning quite early after breakfast. For once he was up and about. I asked about the morning planning meeting. It was on then. I encouraged him to go and he agreed. Later in the day he rang and told me he's been playing guitar because he'd gone to the meeting and found it was available.

It didn't take a lot of persuasion on my part - even though it was over the phone.

He got keen on the guitar sessions. He has been able to play a bit since he was a teenager. Staff wanted to encourage it and suggested we got him a guitar again.

Some time ago we'd taken in a guitar for him. It was an old one of Nell's and not particularly valuable. He smashed it to pieces.

He seemed more positive now so, encouraged by staff, we got him another. It is his birthday coming up soon so it was decided it could be an early birthday present from his Granny and Grandad.

They took it to him on Sunday afternoon. They were surprised to find him with a nurse, playing the ward guitar when they arrived. He seemed well and played for them and chatted in quite a together way.

Minutes after they left ...

... he smashed the new guitar against the wall and destroyed it.

The next day he rang and told me about it. But he couldn't explain. I still have no idea why he did it.

When we took Sam out at the weekend it went fine - but had it's moments!

Sam was peased to be out and enjoyed being in the woods near by. But he became funny with me a couple of times and with Jane once - so it was good to have someone else there to distract his thoughts in different directions and prevent an "incident".

It worked well.

When we got back to the hospital the nurse was as keen to stay outside for a while as Sam was. He was clearly just as reluctant to return to the ward ...

We still have no leave to take Sam out - even with a member of staff. We hoped that last week they might review it again and we could take Sam out accompanied by a member of staff. But when Jane rang - the consulatant was on holiday and nobody else was prepared to take responsibility. So Jane hit the roof. After all - if staff could take him out then could we not join in such an outing? But the nurse didn't understand - or chose not to - what Jane was arguing.

In the end it was arranged that we could go out with Sam and a nurse - the one who has been keen to get Sam out. However that was only after he nurse had to contact the consulatan during his holiday - which isn't going to endear him to us. Why do they make these things so complicated?

After the ward round meeting following Sam running away from us at the picnic his leave was suspended with us. I argued though for it to be maintained with ward staff and the Assertive Outreach Team. That was agreed. I didn't expect the ward staff to take him out though. They hardly ever had done before. I didn't expect them to start now after an "incident".

So it was a surprise to find that the next weekend ward staff had taken him out for a walk. A newly qualified nurse has been attached to Sam and recognises he needs to get out. He is confident in doing this having already built a relationship with him -and being able to run faster than we can!

He took Sam out again last weekend while we were away and everything has gone well.

If the staff take responsibility for taking him out more then we will feel it less. Though it is so much better to be out with Sam rather than just visiting him on the ward.