'schizophrenia'

- a carer's journal

Not sure where it came from ... the anger and frustration. It just boiled over.

Nothing has happened in particular ... perhaps that is the reason. We asked for a meeting last week to try to sort out these things but nothing changes ... they just seem to become more embedded.

Jane rang yesterday to try to sort out seeing Sam this weekend and taking him out again. They would try to organise it and get in touch ... but nobody did. So Jane rang again today and asked the same ... the same response. Nothing had been done.

Sam had written nothing in his planner so nothing would happen. Sam will never write anything in his planner. His plan is to leave. That's it. Full stop. Leave. He doesn't want to be there. Writing in his planner would be an acceptance that he was ill, that he should be there. He believes he is well, that he is being held against his will - which is the case. So why would he want to fill in a planner? That would be an acceptance that he was ill.

So he doesn't.

So he does nothing.

So he sinks further and further into illness.

So I rant and rage and want to stop being reasonable but to rant and rage once more against them ... but that would bring their fury down on Sam once again.

I have said this to them and they look shocked. Surely not? But when we have complained before ...

... some responses have been catastrophic for many people.

"Don't mess with us," it seems to say.

I think I'm ready to mess with them again though.

I've been feeling a bit down physically and emotionally for the last few days. Part of it was trying to do too much gardening! But part of it too was perhaps trying to sort some things out with the ward and Sam's psychiatrist.

I woke today feeling dizzy and weak. I felt anxious and couldn't discover a reason. Jane wondered if I was worried about taking Sam out today. Perhaps it was but know I wasn't fully aware of it.

In the end the afternoon went great. We had chances to chat with Sam's named nurse and Sam really enjoyed an extended trip into the countryside to visit some of his climbing haunts.

Though when we returned he rushed off. It was far more important to get back before dinner had disappeared than to say goodbye properly.

Well we had a meeting with the consultant psychiatrist and the deputy ward manager.

They seemed to have got the message. The psychiatrist collected us from reception rather than an underling. We were very honoured!!! We were spared ward round also and had a meeting just with the two of them.

We said what we wanted and they seemed to take it on board. But will it make any difference? I wonder ...

Sam came in for part of it and was totally bonkers. He's been much better recently but it does the psychiatrist no harm to see him like that when he is trying to say how effective the "anti-psychotic" medication is being. At one time he was very antagonistic towards the doctor and turned to me and quietly said, "Can I hit him Dad?" I was proud of myself for telling him, "No"!

It was interesting that Sam had also been taken out for an extended leave that morning by ward staff for the first time since ... well, I can't remember. It was a nice walk in a country area. Coincidence?

We discussed Sam's possible move to a more open ward, what they seem to call a "step down" ward. His current ward is very secure and we feel this contributes to him being unwell. The psychiatrist explained that the new ward was turning into more of a rehab ward and was getting more staff. In the afternoon we discovered that it is getting more staff because it is going to be another "locked down" ward like where he is now.

Do they think we are stupid?

Perhaps it is best not to answer that!

We have tried and tried to discuss the fact that Sam has not been getting leave despite agreements and recommendations at ward round meetings. Jane has spoken again and again on the phone requesting a meeting and certain information. Then this week I get a phone call from a nurse who says that at our request he has been asked to set up a MDT meeting - multi-disciplinary team, I discover! Though I just hear "disciplinary meeting" and wonder what is going on!!!!

So he arranged for us to go to ward round again. We don't want to go to ward round again. That is the point. We keep going to ward round and everyone is very nice and agrees on what should happen but then none of it turns into reality.

What is it about the health service that nobody understands that plans are supposed to inform action rather than being just nice pieces of paper to file away?

So we will go to ward round and then are hoping for a proper meting to thrash things out. We don't want to do it in ward round but if that is all they give us then it will have to do ...

Watch this space!

We'd tried to arrange some longer leave for Sam with us on Saturday ... but it wasn't possible. Perhaps next week ...

It turned out to be Eid at the weekend so perhaps that was part of the reason. While we were sitting waiting to go out with Sam on Sunday a Muslim nurse from the ward arrived in his best clothes with a large beautifully decorated display of Asian sweets to take onto the ward. He gave us a beaming greeting as he arrived.

We had a nice walk with Sam - he was quiet but seemed quite well.

But we have been reflecting on the lack of communcation and the lack of action in carrying out agreements on leave and other things. We have asked so many times recently for a discussion about this ...

Jane rang yesterday to see if we could arrange to take Sam out this weekend for an extended visit with a member of staff. But no - despite Sam having been told that he can have such visits, when it comes to arranging it there are always problems.

Jane asked further about Sam's activities and even the nurse she as talking to was surprised to find that Sam had done nothing this week. And so it goes on.

Sam rang yesterday morning. Could we go for a walk in the countryside. He'd talked with the doctor the day before who said he could. Would I pick him up now?

I explained that these things needed organising. I encouraged him to talk to the staff and ask when he might go out.

"Can't you ring and ask?"

It was almost plaintive. Clearly he feels his words have little effect.

He complained that his agreed leave was not written into his weekly plan - that we have only just discovered exists. He was upset that other leave he has been promissed had been deleted from it. I said I would ring and ask about it as well as arranging for him to come out with us for the weekend.

"No Dad. Please don't do that. They will hate me for it. Just ask about us going out."

Is he really so frightened of them? is that what our actions do? Create anger towards Sam because we are trying to get them to do heir jobs? Sometimes it seems as if it is so much easier for them to sit in the office than to take a patent on a planned excursion.

It has to be said also that whenever we have complained it has rebounded on us. So maybe Sam is right. Yet again we should just leave it.

But I am the one who is getting really angry again now ...

I have been for the last few weeks and it is affecting my own health again.

When I saw Sam on Saturday he talked of being high and smoking crack in the garden that morning. He may have been high but I think it was his psychosis rather than drug taking. But it is worrying to hear him talk of drugs again. The conversation flowed gently with no real meaning for most of the hour I spent with him. He was friendly and sent a hug for his mum who was unwell.

On the way out I felt I wanted to talk to the nurse about the mention of drugs and the fact I am concerned about his psychosis that seems almost unrecognised on the ward. But we started talking in a lighthearted way about clothes and ward dress codes and other things. So that for me to have suddenly got serious would have been such a change of track to give more importance to my few casual words than they deserved.

So I said nothing and worried again all the way home.

Sam phoned last night ... he's been phoning quite often recently. But in the call he mentioned something that implied drug taking on the ward.

He has been less well for the last few weeks. In that time he has mentioned things that might have implied drug taking a few times. On one occasion he was quite open about it ... but we weren't sure whether that was because drug taking had caused psychosis or that his psychosis made him believe he was taking drugs. It genuinely is a problem.

But he has deteriorated ... and at the last planning meeting the ward manager said there has been cannabis on the ward.

On Sunday Sam phoned again and mentioned drugs. I tried to ask him about it in a sensitive way ... he impressed on me that he wasn't ill ... I tried to explain that if ward staff saw behaviour related to drugs they would interpret it as him being poorly. I tried to keep it all very low key.

But he soon got angry. After a while he started to bang the phone on the wall again.

The call ended with me listening to the sound of the phone scratching against the wall as it swung from side to side.

I decided to call the ward and try to report my worries to a member of staff. I didn't want to complain ... just let them know my concerns in case they weren't aware of such possibilities at the moment or could possibly reassure me. I was answered by a member of staff who I had never spoken to before, perhaps "bank staff" - on call for the evening.

Her English was not good and she did not seem clear about what I was tyring to say. It was "busy" on the ward and the nurse in charge could not come to the phone. That's fine I answered but if she could just make a note of what I had said and then I would call in the morning. Just a moment she answered, she would see if the nurse in charge could come to the phone. But of course she couldn't ... so we went through a rigmarole again of what she should write down and for whom.

I just hope my message hasn't got garbled into a major complaint by the morning.

Nell was coming home for the weekend on Friday. So Sam phoned every half hour to ask if she was back yet and could he speak with her. Of course she missed a train and had to go straight on to a meeting ... so Sam got quite agitated about her not being there.

I was worried about how Saturday might go. We hoped Sam might be allowed home ... it was planned but depended on his state of mind and allocation of the minibus! I was worried that if he was cross about not being able to speak to Nell and if this exhibited itself in negative behaviour then the Saturday visit might not happen. It seemed quite tentative as it was.

Anyway, in the end Saturday morning went fine. Sam came home, was well and seemed to get on with Nell. We went for a walk and drank tea and listened to music and sat outside smoking cigarettes and even had a quick game of chess. Nell even accused me of sexism for not having encouraged her into chess as I had Sam! I'm sure it was because she was less interested but ... !

So it all went fine!

Sam has phoned a few times recently. Each time he has seemed very "elated". That's code word for "bonkers"! It has been difficult to have a sensible conversation or for him to even be able to answer a question. What has worried me though is that in recent weeks nobody seems to have noticed. Everyone keeps saying how "well" Sam is doing. How they are keen for him to move on. We are keen too ... but little seems to be happening.

I usually sleep soundly but lay awake one night this week creating arguments in my head with his psychiatrist and the ward manager.

Sam phoned a couple of times today in the same manner. Then we tried phoning the ward to have another go at getting him some leave this weekend. But guess what?

They have noticed too that he is "elated" at the moment. They are surprised as he is taking his medication! Jane explained to them that he has been taking his medication for the last eight years for the most part but after going onto new medication he soon gets poorly again. They don't seem to have any comprehension of this. Do they think that on previous wards he was allowed not to take his medication?

So it was agreed he may be able to come home on Saturday morning from 10.00 to 12.00 depending on how he "presents". At that time in the morning he will be fast asleep so I'm not sure how they will gauge it. Either they'll say he is fine or they will say they could not wake him.

We'll see ... !