Tuesday, August 31, 2004

Sam phoned today and spoke to Jane.

Jane called me and asked me to speak with him.

She was worried he might have been smoking cannabis. He was belligerent and irrational.

He said he had got five pounds from the safe. That he had given it to James who now has leave to buy some cannabis. He said he had done it in an obvious way in the hope that they would be spotted as he had thought cannabis would be bad for James. Now he had changed his mind. Cannabis was the way forward. It would help open his mind to clarity and enlightenment. James had been unable to buy cannabis and had given the money back. Sam assured us both that he had not taken cannabis.

This was all very worrying. Sam has been fairly well for the last few days. But now he sounded confused and totally lacking any insight again.

Jane phoned the ward and passed on the content of our conversations.

Sunday, August 29, 2004

Staying with my sister - my brother and his wife also visited from abroad. We had a lovely day out together, walking by the river in the sunshine, seeing the sights and so on. Late afternoon we stopped for a drink at a lovely old pub at the riverside.

We had a couple of drinks and chatted and laughed about this and that. I see little of my sister and even less of my brother and his wife so I decided to just give them a few more details to bring them up to date about Sam.

I tried to explain about changes in Sam and also about the changes in medication and so on. They started to put to me lots of things I know myself. About medication not being the full answer, etc, etc.

I found myself on the defensive.

I'd just been trying to explain but suddenly I was in a deep discussion. Almost an argument.

They love Sam too. They are concerned. They needed to express their concern.

I recognised that this is what I do with Jane all the time. I try to listen and soak up her emotion.

I realised that I wasn't going to be able to cope with the current discussion. I was trying to almost defend the present situation as we have such responsibiity for it whilst being as critical as them of all that is going on.

I tried to explain that I needed to change subject. That I didn't have the resources to continue.

Then I found myself sobbing.

I was sitting outside the pub on the riverbank surrounded by people enjoying the late afternoon sun and the views and I started to cry.

It wasn't just tears but huge sobs that I couldn't control.

My sister came round to comfort me and my brother looked on in shocked concern. He hasn't seen me like that and I'm his big brother.

I've no idea if others around noticed and what they thought. I didn't much care to be honest.

Soon I was under control and we carried on as if nothing had happened.

Friday, August 27, 2004

I'm staying over with my sister for a few days. It's good to have a bit of a break.

Jane phoned. She had spoken with Sam on the phone. He seemed really well. He was also talking lots about what he had been doing in occupational therapy and positive and interesting conversations with staff.

It was good to hear that he had been talking so positively as he had been getting so depressed about being there and the thought of being detained for an extended period.

Tuesday, August 24, 2004

The phone rang again - nobody there.

It was Sam again. He rings from the payphone without any money and we phone back.

We always phone back.

I'd been busy. I was really tired. I couldn't face calling back. Please would Jane do it - and of course she did.

Sam was upset.

He'd had a meeting with the ward doctor. I'd taked with Sam the other day about him discussing his issues with the staff. I was trying to get him to take control and not be passive but also to explain to the staff what it was like from his point of view.

Of course Sam felt he was dismissed. Everything he tried to explain was described as a delusion to be cured by yet more medication.

He was really upset.

We were too.

We try so hard to listen to Sam and treat his views with respect whilst challenging those that are clearly deluded in a way that at least recognises that they are real experiences for him. Staff just don't seem able to do this.

He phoned again a little later. There was some kind of social activity on the ward. Althought not his scene he was trying to be positive and take part.

He's working so hard at this he just deserves to get better.

Saturday, August 21, 2004

Drove over to see Sam today.

Mixed feelings. Our recent telephone exchanges hadn't been good.

His initial reaction was a little confrontational but mixed up with attitudes to staff. I think it was mainly frustration.

We soon got into a really positive discussion which lasted, with short breaks to get lights for his cigarettes, for over an hour and a half.

We both enjoyed our conversation.

I found myself talking about the history of Sam's illness and he was able to engage with it. It helped put our recommendations to the forthcoming tribunal into a perspective - and Sam was able to understand.

I was able to get him to begin to think about the long term perspective - rather than just needing to be out now, which is so understandable.

He's aware that he's had several major relapses and that he has been diagnosed now for over four years. He's able to compare himself with his psychologist who was only ill for a year with no relapses. Like us he is aware of the fact that he might always be ill or have the potential to become so.

He bemoaned the lack of possibility of talking to staff like he was talking to me. They treated him as a patient rather than as a human being. That didn't mean they weren't kind and respectful - but the respect didn't extend to listening to him as if what he said made sense. They were used to assuming that what patients said was nonsense.

Also he knew that being around others with mental health problems was bad for him. Staff didn't talk to him as an equal and he couldn't ignore his fellow patients. But when talking with other patients on the ward he found he slipped into the worlds in which they existed. He was being psychotic because he lived in a psychotic world.

Thursday, August 19, 2004

Sam has appealed against his section and we thought a tribunal hearing would be happening soon. It turns out that it is a managers' hearing rather than a tribunal. The effect is the same but the bureaucracy different. A tribunal is chaired by a lawyer and also has a psychiatrist and a lay member. The managers' hearings, I think, are mainly lay members.

We met with Sam's key worker this morning who wanted to canvas our views. He needs to write a report for the hearing.

We know Sam needs to be safe and that the plan was for him to be in hospital for a long enough period for him to become stable enough to perhaps stay well on a more permanent basis. However as time goes on and different medications show their limitations I worry that his illness may become more permanent. In which case having him incarcerated in that place just seems like cruelty. He spoke to Jane on the phone last night saying how much he wanted to be out of there. So we said that we felt Sam needed to continue to be in a secure ward but that there needed to be much more psycho-social intervention such as direct one to ones with therapists and psychologists.

Later Sam phoned. He seemed well. He got leave during the week to go round the grounds with a member of staff. However it hasn't happened yet. He remains caged. He is only buoyed by the expectation that he will be released on his appeal in a couple of weeks. I tried to suggest that it might not be that straightforward. He was distraught.

How could we tell his key worker he shouldn't be released? He would have to stay in hospital for ever. He was beginning to see himself like other patients there who have long term serious problems that Sam can recognise. He sees himself as different which I think is a good sign. We see him as different too as he can often be so aware of his condition - whilst at the same time being so unaware. He can't see that he doesn't yet have the stability and the skills to move straight out into the community on his own and remain safe.

It's very distressing to hear him so desperate to get out of there and recognising that in many ways he is right. It would drive anyone mad to placed in such a situation yet that's where society puts mad people. There must be another way.

This depressed me so much.


Late evening he phoned again.

Nothing to say.

But needed some support, companionship - love, maybe.

We chatted aimlessly then he said in the autumn he was going to Amsterdam with a friend.

"And what will you do there?"

"Oh, have a great big spliff," he answered.

So I had a go at him. I was tired and just felt I it was important. He's been moaning on to me in the afternoon about maybe not getting out. He'd been saying he didn't need cannabis any more. I emphasised his own responsibility. How could he be safely let out if straight away he was going to do things that in the past had made him poorly? That had led to him being arrested or readmitted to hospital? He'd been playing on my emotions this afternoon but now he was not prepared to recognise the effects of his own actions and what he needed to do to stay well.

It may not have done him a lot of good but I needed to say it. He listened and recognised it as hard advice that he had to hear.

Whether he will take any notice of it though -

who can tell?

Wednesday, August 18, 2004

The UK Cannabis Internet Activists website has published a revised version of a UK government booklet for young people aged 13 to 16. The original government leaflet was seen as being ineffective in getting over the message that cannabis can have serious health problems - including serious mental health problems for those susceptible to schizophrenia.

The UKCIA version takes seriously these issues and presents them more effectively to young people. You can find a copy here.

So thanks to those people who have been campaigning about these issues with UK cannabis organisations.

Tuesday, August 17, 2004

Jane went to see Sam today. He seems to be making good progress though he is still obsessed by his Reiki parctitioner.

Jane got to talk with the ward sister and she says that Sam has been on new mediation - Quetiapine - for over a week.

But I phoned twice last week to ask about this and Jane phoned a couple of days ago and we were told that no decisions had been made yetbecause of his heart condition.

Why the crossed messages? I always tend to go with cock-up theories, rather than conspirathy theories as I never feel they are clever enough to create a conspiracy.

But again it makes me wonder what on earth they talk about at these interminable uninterupterable handover meetings if nobody knows even what medication that he is on!

Jane suggested that Sam might like a shower or a bath. he seemed to take the idea positively and asked staff for a towel and for the bathroom to be unlocked. he phoned later and Jane asked him if he had enjoyed his bath.

"Yes. But the trouble is, then you notice how much everybody smells," he replied!!!!!

Saturday, August 14, 2004

Sam rang three times yesterday.

The first time he was moaning that he wanted to leave the hospital, that doctors just said he was mad and didn't listen to him, that the nurses didn't understand him.

Some of this is partly true but I had a bit of a go at him. That he was there for his safety because he was still not well enough to be safe. That he should make more of an effort to talk and explain with the doctors and nurses, that he should ask about activities and make it clear he was well enough and keen to get involved.

I was fairly forceful in what I said. Sam listened and agreed that some of my points were fair.

Some time later he rang again. He wanted to go back to university and study psychology. He wanted to become a psychologist so he could use his insights to help others. He wished he'd kept a diary to use as he went on to further study and future work.

I was really positive. Some of the things he was saying were a bit off the wall but he was now planning positively, thinking about the future.

Perhaps it wasn't too late to start a diary. I had thought that when I started this one!

Later he rang yet again. He'd written a report for Assertive Outreach about the last few weeks from his perpsective.

I feel my response to him on his first phone call happened to work. The trouble is that he really doesn't have this kind of exchange with staff on the ward.

Thursday, August 12, 2004

I drove over to see Sam with Nell the other day.

She was a little nervous, I think. I's a while since she has seen him.

We also didn't know what state his face would be in following his beating.

On the way we stopped off at a closing down sale for something expensive that Nell really needs.
They had closed down!

After that we found ourselves following a wedding party on the motorway. There was a vintage car with the bride and groom in the back. The hood was down and they were facing backwards - towards us. The bride was sipping from a glass of champagne. As we passed she raised the glass to us with a beaming smile. We smiled and waved back.

Sam's face wasn't too bad. the nurse said his eye had opened today and he looked a lot better. His face was bruised and he had stitches above and to the right of his eye. It could have been worse and I guess it probably looked so a few days ago.

The police had given the other patient a sever caution and have left the assault on file so it could be reconsidered. I feel it is inappropriate to arrest a person with a psychiatric condition so severe that they are detained on an intensive care ward. If they were able to make rational decisions all the time they would not be there. But as the nurse said that does not mean they cannot sometimes make rational decisions. Also if they know they can get away with anything - there is a temptation that they will try to do so. This is a difficult area.

We met some other parents for the first time. Their son had been transferred there in handcuffs from a local prison. He had been due to be discharged from prison two days later. They had been able to get no information from the prison authorities as to why an earlier discharge date had been delayed - other than "behaviourable problems".

Nobody told them he was ill.

They have had to travel across the country to visit him and have no support.

They want him home.

They want to look after him.

They are loving parents desperate to do the best for their son but with nobody trying to explain to them or offer help and support.

Sunday, August 08, 2004

Sam phoned again last night.

He told me about the altercation. The guy concerned had attacked a woman patient last week and Sam was angry about it so I think he was goading this bloke. Would he dare hit Sam or did he only attack women?

Although Sam is big he is not a fighter. The guy went for him and gave him a beating.

Sam was feeling very sorry for himself and in pain.

He said he was very depressed but hadn't talked to staff. I told him he must do so.

He also said he'd been interviewed by the police. The whole incident was on video.

I rang the ward to find out about the police - was Sam being charged? - and also to let them know about his depression. They were in hand over. I've no idea what they find to talk to each other about in hand over. If they talked to the patients as much as they talk to each other that might make sense. Someone would call me back. They didn't.

I phoned again this morning and the ward manager answered. She's very nice and we had a good chat.

Sam isn't being charged. The police were called on his behalf as it was felt the reaction was inappropriate to Sam's initiation of it. She said Sam was difficult to communicate with. They had to keep seeking him out to check on how he was. he was refusing analgesics even though he was clearly in pain.

At least I felt I was talking to someone who was trying to understand how we might be feeling about all this.

Friday, August 06, 2004

When Sam phoned the other day he talked of feeling violent.

Well yesterday he hit someone.

This happened once before on an acute ward.

Sam is a kind and gentle person. In the past he has always run away from trouble. It is not like him to be violent. He is having so much trouble coming to terms with his growing prceptions of his illness and his confinement that it has come out in this way again.

Anyway, having hit someone he of course then got beat up. Suppposedly he had also been staring directly at this person during the day. Sam does that when he feels he has some mental connection. It is part of his psychosis.

Sam was taken to casualty. No broken bones but six stitches above his eye.

Tuesday, August 03, 2004

I've been phoning the ward.

Eventually they got back to me.

I wanted to find out if there had ben any changes to Sam's medication.

I wanted to tell them about the phone calls from Sam.

I wanted to know if the ecg test he said he'd had yesterday had been okay.

After two days of messages they got back to me.

He saw the heart consultant yesterday, not an ecg. No problems but an ecg is planned. No change in medication. Not until they are really sure about the heart condition. Yes they know he is obsessed with his Reiki practitioner.


Sunday, August 01, 2004

Sam phoned four times today.

He's become obsessed with a woman he used to go to for Reiki sessions. He's sure they're in love. He wants me to ring her and ask her to visit. He's only ever met her a few times.

We also talked of other things. As Sam is beginning to get a little better it's possible to have a conversation. Also he is recognising that some of his thoughts and experiences are problematic. I often wish at these times that I had a tape recorder. I made a few notes though as we talked.

They're just fragments.

He was angry and upset,
his mind so complicated,
his body messed up as well,
not normal any more.

He was feeling violent - not like Sam.

He was

Mum looks after me
but I need to be free.

If I am caged up
I have violent urges
and I'm nasty to people.

A spider crawling on me
so prefect I didn't want to do anything wrong
then a bird cried out
I didn't want to do anything to spoil it.

I was so happy with the spider
loving it so much
- ridiculous.

Someone was in the room
I thought it was Jack the Ripper
I thought I was the Messiah
I thought I was on the radio
But I know I'm not
I just want to be normal
I don't want the responsibility of being the Messiah.

Sam talked of whether these were delusions or visions and I tried to enter into a discussion with him about the difference but he didn't want to engage. Then he said:

"So am I the Messiah?"

"No," I answered.

"Good," he replied.

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