'schizophrenia'

- a carer's journal

Sam's nurse from the rehab ward phoned tonight. He's on lates. He'd been on leave and didn't know what was happening to Sam.

I couldn't remember when we'd last spoken or the proper sequence of events. Eventually I managed to put it together for him.

He wasn't aware even if Sam had been sectioned. I went through the events of the last few days. He really wanted to know. He was concerned about Sam and about us. He called me by my first name - none of that Mr Xxxx crap.

It was as if we were friends talking of a loved one.

I had a phone call from Sam's psychologist this morning. He is from the Assertive Outreach Team. This team works with clients who are difficult to engage. He is a really interesting guy who has spent some time with Sam and is trying to help Sam cope with his thoughts and delusions using his own resources. Sam has time for him as when he was younger he also went through and recovered from an episode of psychosis. He's been there. He understands.

I think he is unhappy about Sam's move to the private hospital. He was critical of the staff on his previous rehab ward for not having got him more engaged in practical and purposeful activities. He worries that they used too much of a 'medical' approach and that the approach in the new setting will again be too 'medical'.

Sam's care co-ordinator was a member of the Assertive Outreach team. He is suddenly not going to be available for a few weeks. He was supportive of current developments. The psychologist may be taking over from him temporarily. I do agree with him about much he says and we understand more of what thoughts Sam has than any of the other professionals working with him - and are actually interested.

There seems to be a divide between supporters of the 'medical' approach rather than the 'recovery' model. This divide, suspicion and rivalry leads to conflict and jealousies. Neither is right. Surely we need to take what works for each individual from both approaches?

I do know that Sam needs to be safe and that I could not condone him going into a flat in our neighbouring city whilst well meaning professionals talked with him about coping with his voices and positive approaches once a week, if they didn't have an emergency on to cope with instead - until Sam became that emergency. Sorry, that's very cynical. I don't mean that. I just need him safe. He can't be wrapped in cotton wool - but at the moment the risks are too great.
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I saw Sam this afternoon. He seemed remarkably well mentally.

Other than when he was walking down the corridor with me and mentioned this special enlightenment that had hit him during the afternoon. He described it in a way I couldn't understand.

"So that shows I'm getting better."

Right. (?!)

As he continued to chat he was perfectly well. He even talked of going back to university. He feels the 'sane' part of him is no longer depressed so he is happy to be there.

So a sane young man may be being admitted to a secure ward within the next few days.

Mad isn't it?

Sam has been referred to a private hospital in a town some distance from here.

We're very positive about it. The approach and facilities look ideal. He will get therapeutic care, a good staffing ratio, a variety of activities and facilities - all in a secure setting. Ideally we would have liked him to stay on the rehab ward with a change of medication. But as that is no longer possible we think this is a good move forward. We hated the thought he would go back onto one of the acute wards that has already failed him several times.

He was visited today to be assessed. We asked to meet the staff to put our view of Sam's history and current needs. They were really nice and friendly. I got a little emotional again when talking of our hopes for Sam.

I think they are happy to accept him but this needs to be confirmed by their consultant psychiatrist. The funding also needs to be agreed. The National Health Service fundholders have to be assured that there is not alternative NHS provision and that this provision is necessary. The fact that Sam's consultant appears to be chasing this up rather than a staff nurse or social worker - as is most often the case - seems to be strongly in his favour.

We hope we will hear the outcome by the end of the week.

I'll keep you posted.

Can I have a moan?

Please?

If you don't want to listen just scroll down to the row of dots below. Thats the great thing about the blog - you can read just what you want to. If we were in the room together you would soon find the need to leave or to tell me to just take a grip and stop feeling so sorry for myself.

I drove back from the conference on Friday and that was fine. But as soon as we got back I felt exhausted. We had a meal and I fell asleep on the settee in front of the television. Jane woke me and suggested I went to bed.

I slept through and couldn't get up the following morning. It was a beautiful sunny day. It would have been great to go out for a walk, to enjoy the sunshine but I had neither the strength nor energy. I pottered around for most of the day taking frequent rests. I ached, my muscles pained me, I felt dizzy.

I was feeling really sorry for myself that having felt poorly the previous weekend here I was feeling so down again.

It is depressing.

I want to be well.

I worried that I was getting really poorly again. I'm usually much beter than this. It reminded me of when I first got poorly. I had started to feel that I was at least a lot better than then. I just don't want to be poorly.

I sometimes feel that if I just pulled myself together and got on with things I would feel better and be able to get on with my life. Of course as soon as I try it just doesn't work and I make myself even more tired.

Today though I was determined. It was such a lovely day. The weeping cherry in the garden is in full blossom. It would be lovely to sit out on the bench and look at it. The lawn was such a mess. It hasn't been mown this year. I wanted to do it but felt so tired.

I did it in bits. I kept resting and got it done.

I sat in the sunshine, drank a glass of wine and looked at the lovely cherry blossom.

Of course, this evening I am exhausted again but at least tomorow I can sit out and look at the cherry blossom again.
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I also found time to visit Sam this afternoon.

He seemed well and was able to talk articulately about his current illness. As long as he doesnt think about things he is fine. But there are thoughts that he knows are disturbing. He can choose to be sane or insane - I'm using his words. If he decides to be sane he feels nothing, he is blank. However if he chooses to be insane at least he can feel. He talked of the effects of having been poorly for over four years.

On Tuesday he will get an assessment visit from the hospital to which he has been referred. We hope they will accept him as at least it is a move on which could perhaps help him. Where he is at the moment is just another time round that circle of care and illness that goes on and on.
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There was an article in the paper today saying that people with schizophrenia relapsed more often if they had negative attitudes from their parents. This effect was claimed to be greater than not taking medication. I don't believe this but there were no references to check. Even if there are sources to back it up this kind of thing is so hurtful to carers. It was written with no understanding or compassion for what carers of young people with schizophrenia are going through.

It made me so angry.

The summer before last Sam had a very bad accident. He stepped out in front of a car at night wearing black to try to flag it down.

He ended up with a badly broken leg and severe injuries to his other knee.

We were on holiday. When we got back I visited the hospital to see Sam and asked to speak to the doctor. The doctor took me to a private room where he went into detail about the nature of Sam's injuries and likely prognosis. I went back to Sam's bedside and we chatted some more.

The combination of the drugs he had received and the trauma of the event had pushed him over into being very psychotic again.

The doctor came over and asked me if I would like to see the X-rays. I went with him to have a look.

At no time did the doctor ask Sam if it was okay for him to talk with me about his injuries.

A few weeks later Sam was sectioned for the first time.

We were of course keen to talk to nurses and doctors about his treatment and care. They were reluctant. They kept referring to 'confidentiality'. On each occasion they made a point of seeking out Sam to ask if it was okay to speak to us.

This is typical in discussions with mental health professionals in the UK.

I see no reason why confidentiality should be any more of an issue in discussions with families about mental health than about any other area of health.

The reason is often claimed to be because there is a reference to confidentiality in the Mental Health Act . In paragraph 132 there is a sentence that encourages the sharing of information "except where the patient otherwise requests".

It is this little phrase that has led to so many problems. I know two mothers who no longer have any contact with, or even knowledge of, their daughters because of mental health staff's interpretation of confidentiality regulations. They have even had official complaints not considered because of patient confidentiality even when the complaints were solely to do with the actions of professionals.

I get very cross about this.

Yesterday we went to a conference in a town some distance from us. It was about "Carers and Confidentiality in Mental Health".

It was brilliant.

It is always good to meet other carers and we met some new friends there. There were also a number of professionals and the mix helped constructive discussions. I know that many professionals had their eyes opened by being there.

Good practice was agreed and it is hoped that some documentation can be produced to help influence policy makers.

There was a great mix of activities on the day. Excellent speakers, presentations and workshops. There was also a play written and performed by sisters of a person with mental health problems. It was very moving and raised all the issues.

We came away refreshed. It was a good day.

I'm so tired now so please forgive me.

There is so much about today I would like to tell you but I know I don't have the strength now.

Sam was sectioned this evening. We were there.

He was transferred to an acute ward last night. They couldn't get the required people together to section him yesterday afternoon. We got a phone call as we were driving over to see Sam this evening. It was the "approved social worker". She was responsible for organising and agreeing the sectioning process. She was due to arrive at the hospital at the same time as us. We offered to defer - but no, she said it was fine.

We parked the car having searched the car park for spaces, paid our fee and looked for the ward. The corridoor seemed a mile long. We then went up a floor and followed the corridoor back a floor higher.

Eventually we met with Sam and chatted. He was open about lots of his current problems - but at least was lively and able to talk in a way that had been impossible for the last few days.

We were allowed to attend the assessment meeting with doctors and the social worker. We tried hard to remain silent and let the professionals do their job. However the temptation to help them out by prompting Sam into talking about certain things was irresistible.

He talked with them differently than he had done with us. He is so clever at this. He is brighter than most of the professionals that deal with him. This can though lead him to a certain arrogance that can let him come unstuck when he then begins to reveal many of his symptoms.

The professionals were again very nice with him - though Sam put them properly in their place a couple of times.

He had talked with us before, during and after the assessment meeting of his depression being caused by his rational mind trying to control his difficult thoughts. He sees his depression as illness rather than his psychosis.

The section was agreed.

Sam had expected this and had agreed it was right before the event. But when he came back in after leaving for a cigarette and was told - he was angry. Not aggressively so. But cold and sad.

Why was he being told what he could and couldn't think? He was being detained because of his thoughts. This wasn't just.

He was referring to the first time he had been sectioned. This brought it all back. He soon calmed down.

What had made him angry was talking with a fellow patient in the smoking room. He had got on with him earlier in the day. They had been on the same level. Now he was talking nonsense. What he said made no sense. Sam had been operating on the same plane as us, his doctors and social worker for a couple of hours. He'd had to work in 'rational' mode. Suddenly the 'mode' of a patient just hadn't made sense. He was angry. He felt more connection with the patient than with us. That was his real mode. He was angry with us for having made him doubt it.

That made parting hard. He was still angry.

Then he softened. He kissed his mother and gave her a cuddle. He and I kissed and squeezed too. We chatted in the corridor.

As we left he seemed so well.

Another roller-coaster today.

I'll give you the edited highlights.

I had to get up early. Well, okay, early for me. I know you were probably all at work while I was in the shower trying to wake up. I felt a little dizzy and disoriented but otherwise not too bad. Jane had to travel to another town for meetings at work today. I drove to the hospital to meet with Sam's nurse and ward manager before the ward round with Sam's consultant psychiatrist. Jane had long talks with the ward manager yesterday so I wasn't sure if there was much left to say.

There was.

Last night there had been a problem. In the afternoon Sam had gone out drinking with a female client on the ward. She must have been paying as Sam has no money. In the evening they went out again. A cleaner on the ward had seen them in the pub all over each other.

When they came back to the ward they were drunk. They were obnoxious. They annoyed other residents. They were pushing them around and making a nuisance of themselves. They refused for ages to go to bed.

Later Sam was found not to be in his room and was discovered in the female clients room. They are both adults but she is very vulnerable. There was no suggestion that anything had not been consensual but - it is against the rules. They have to consider the needs of all clients.

It was made clear to me that, given Sam's behaviour on Monday and then last night, it was considered the ward was no longer an appropriate placement. They had to think of Sam's safety and that of others.

It is such a shame as we had thought discussions today could be so positive. Sam had agreed to a change in medication. Together with the support from the excellent staff I almost felt optimistic. But all my hopes had been dashed.

To go back to an acute ward now would be just going back to where we were two years ago except the problems now being engrained. He will not be safer on an acute ward as that is where he has often got more poorly in the past with access to cannabis and little theraputic care.

It was agreed that a secure ward would be best if one could be found and if Sam could be sectioned. His symptoms are currently not 'florid' enough for him to be easily sectioned. But he is in a bad way. He is desperate to find experiences to make him 'feel' again. He could easily kill himself. The police had said that on Monday evening he could easily have been killed as he kept running out in front of cars. Eighteen months ago he was nearly killed by a car. He says that is the last time he was able to feel anything.

Sam seems resigned. No anger. No frustration. "Whatever you think best."

I've rarely seen him so down, so blank. The doctors thought it was because of the news about being sectioned but Jane said he was just like this yesterday.

He cannot be admitted to a Health Authority secure ward as locally they are all 'forensic' - i.e. full of axe murderers, and they don't want to mix such patients. There are possible private clinics but funding then becomes an issue. We have agreed where the most appropriate place will be - but it depends if they have a place, if Sam can be sectioned and if the funding can be secured.

In the meantime tonight he has been transferrred to a local acute ward. There wasn't a place this morning but one has come available during the day. I think his consultant may have pulled some strings - it is another of her wards.

Fortunately it is not the hospital he has already been in several times. We still have an outstanding official complaint against that hospital which is unresolved over six months later.

I've coped quite well today. The bits that have been emotional for me have been when people have been kind - which was most of the time on the ward. All the staff have been brilliant. As well as me being in tears that Sam could no longer remain there I could tell the staff were upset too. Even the consultant and the doctor seemed visibly moved. The consultant, who I have sometimes thought of as being a bit of a cold fish, was so nice with Sam. She could almost have been his mother.

I'm in tears again writing this now.

Some friends phoned this evening.

They were just back from France. Were we up to receiving guests?

We had just been discussing how tired we were. What problems we each had tomorrow. How we planned to tidy up and go to bed early.

"Of course! We'd love to see you!"

And, naturally, we did. It was lovely to see friends, look at photographs, chat, share some wine and coffee.

It reminds you of the world outside.

Tomorrow will look after itself.

By this morning it had all got to Jane. The theft of the money, the risk he had put himself in again, the emotional turmoil that goes through any mother's mind when her son is poorly and in danger.

She spent an hour and a half on the phone to the ward manager. The ward staff are just so brilliant to give us all this time. I know she must have a million and one things to do managing the ward and coping with all her other responsibilities but there was never a moment when she was trying to get off the line.

Jane went to see Sam.

She needed to raise the issue of the theft, to find out how Sam was and to discuss ways forward.

Sam was very blank. He said he had stolen the money from Jane's purse on Sunday evening before she took him back. He wanted to be found out. He wanted to feel guilty. He had no feelings. He wanted to do something that would make him feel again.

He hadn't had feelings since his bad accident over eighteen months ago, he said. That's why he kept going awol, why he kept getting arrested by the police. He wanted it to bring it home to him what he was doing. But he still felt nothing.

Jane was in tears and he knew she was upset. But he still could feel nothing.

There have been views recently about a change in medication. Jane used this as a way in to raising it again. Any discussions with Sam about medication are difficult as he does not want to be on medication at all. He agreed in principle for a change to Clozapine.

Staff were very positive and began to put certain things in process straight away. It has potentially serious side effects and regular monitoring is essential. The rigour of the monitoring though makes it a comparatively safe drug.

There was need for a change. Sam was beginning to move backwards not forwards. We just hope that he will continue to agree to the change in medication and that it will be effective.

Despite what happened yesterday it is making me a little more optimistic again.

I had so much I wanted to write but couldn't find the time and energy to do it.

There is so much I want to tell you.

I had been writing yesterday and then gave up. I intended to finish it today. I haven't. So I've published the draft first section below with yesterday's date. I've no idea if it makes any sense.

Sam really has seemed well over the weekend.

Or so Jane tells me. I slept for most of the weekend. Today I've felt a little better but a short walk to post some letters exhausted me.

We went to a meeting this evening. Lots of carers. Lots of problems. Few solutions. I was one of the ones trying to be constructive, to provide a light towards people finding their own solutions. I felt I had helped a bit although it tired me out quickly.

We stopped for a drink on the way home, for a chat, time to try and discuss our own problems.

We returned home and checked the answerphone. Please would we telephone the ward?

Not to worry. Sam had gone missing - but had returned.

It seems he had stolen £20 from us at the weekend without our noticing. He went into town and bought cannabis and alcohol. The police stopped him as he was dancing in the road, in danger of getting knocked down by traffic.

He had a stick and was attacking a bush with it before rushing out into the road again. He kept rushing out into the road as the policemen were trying to talk with him. They arrested him for his own safety and took him to the cells. Sam has got too used to arrest and police cells now.

His address is part of his safety mechanism. Once the police know he is a patient in a psychiatric hospital he gets looked after kindly - well mostly (I'll tell you of the other times later). He was clearly not safe to be sent home by public transport so they took him back.

Sam has found the police to be a good taxi service. Very cheap as long as he does not mind sometimes being transported tied by the wrists with plastic tape cutting into his skin.

Ward staff say he is fine. He seems calm. He slept on his return then got up and ate and has now gone back to his room.

There is a meeting planned for Wednesday. The issues were complicated already. Now? Well???

I don't know. I really don't.

Sam often messes up like this when he seems to be well or getting better. There seems to be no rationale. Maybe he doesn't want to get better. Or could it be that he is frightened of getting better?

Often I have become angry after these episodes. Tonight I have taken it in my stride.

Maybe I am just too tired to do anything else.

Sam's has stayed over last night. It wasn't really planned - but it's easier in many ways. He seemed well. It was me that was poorly again.

I started with flu like symptoms on Friday evening. This was a shame as we'd splashed out on a visit to the theatre. After a meal and glass of wine I had difficulty in staying awake during the first act. It was a good play though and I'm pleased we went.

By the morning I was feeling dreadful. What was worst was that although it felt like a virus - it wasn't. It was just the recurrent symptoms that I get. Some call it ME or Chronic Fatigue Syndrome. I remember when it was first discussed in this country the tabloid newspapers dubbed it "Yuppie Flu". But that is just what it is like. I have felt for two days just as if I had flu.

What is most depressing - which then helps create the symptoms - is that it comes out of the blue. I'm tryintg so hard to be well, to cope, to create a new live for me - never mind Sam - and then a wave of tiredeness, aches, pains, debilitation, mild fever, dehydration just wipes me out.

It is so dificult to plan for the future. I want to be in bed now but I'm trying to fight it.

It was great to have a day in bed yesterday. I went to bed Friday evening, slept most of Saturday and still managed to sleep overnight. Today I have been pottering about but feel ready for bed again.

Jane has enjoyed the conversations she has had with Sam. He has seemed well but has taken to his bed often to cope with the thins going on in his head.

She talked of things with Sam that are going on in her life at the moment and Sam was supportive. He was mature and understanding in his comments.

But later he ...

I've lost this paragraph.

I had the words in my head.

I know this happens to all of us but ...

I read an article recently about how cortisol created in the bodyby stress causes short term memory loss. This is a big problem for me at the moment

Can you help?

I had a discussion with Barry Tebb recently by email and telephone. He has a grant from the Scarman Trust to produce a book for Leeds Social and Mental Health Trust. This will be an anthology of mental health carers memoirs to be distributed free across the UK by carers networks.

If you have anything to contribute or can suggest other sources please will you email Barry at: sixtiespress@blueyonder.co.uk

Thanks

Sorry if you've been looking out for new posts unsuccessfully recently.

I'll blame Nell who has been busy online researching for her latest essay. But to be fair - it's down to me. If it becomes a job rather than a therapy - then I can't cope with writing the blog really.

I've lots to say at the moment - not about Sam but other things. Where to start?

I did say I will write about confidentiality. I will soon. I promise.

We think Sam's illness was triggered by use of cannabis.

Despite that I actually believe street drugs should be legalised. Then the situation can be dealt with as a social and medical problem rather than a criminal one. Sam was once arrested and taken into custody from an acute ward while he was sectioned.

There has been a lot about the connection between cannabis and schizophrenia in the UK media over the last few months. This is because cannabis has been reclassified as regarding its legal status. It is still illegal - but much less seriously so.

There is a good site to visit if this has been an issue for you. Other parents with an interest in this area would love to share experiences and views. It's at:
schizophrenia and cannabis. Do contribute your own experiences.

This article from the UK Times newspaper gives a very good account of the issues. If you have time please do read it - especially if a young person you know smokes cannabis excessively or takes cannabis and is beginning to have worrying symptoms.

We've had a great day today with Sam.

He went for a walk this morning and this afternoon. Though when I saw him returning from his walk this afternoon he had that look. You know? If you don't - then you don't have a son with schizophrenia.

I was distracted in the late afternoon by trying to sort out some really major issues for my parents. When I got back Sam had booked a table at our local restaurant where we planned to go tonight. He showered and changed. He chatted with us walking there and back and throughout the evening. He could do small talk. He was the perfect companion. (Well, almost.)

On the way back he talked of having gone awol and how much he enjoyed the freedom and meeting new people. I tried to be positive and explain that we wanted the freedom for him all the time.

We do.

The only downside was when he mentioned again about being able to see into the future. I changed the subject. He still recognised his different realities and found our reality so difficult because of the pain and suffering that he found there. Not for himself - but for others.

In the evening we watched television and played cards and chatted.

Sam was great. He was (dare I say it?) normal.

It was great having an evening with him and Nell together that went so well.

Jane was excited today. She has had the details of a new job sent to her. It is working in the mental health field in relation to carers. She probably has little chance of getting it but is so excited by the prospect. It is great to see her so positive. It has really perked her up. If she was to get the job there would be no stopping her!
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We picked Sam up from the ward after lunch. He is staying with us over Easter until Tuesday. In the car he talked of having woken up with a profound experience of being possessed by a powerful force. He'd had it once before sitting on the step when he was first poorly at university. It had frightened him, leaving a sense of panic but he was feeling okay again now.

Later at home Jane asked him about it again. Had he talked with ward staff about it? No? Why not?

"Because of the void."

Jane asked him to explain.

"Basically," he said, "there is nothing there. Just a void."

"In your head?"

"Yes"

"In the world outside?"

"Yes."

Jane couldn't understand. She asked him to explain. He dashed to the computer and typed 'void' and 'Buddhism' into Google. He rushed back with a printout of the first result. It included the following:
"Form is emptiness; emptiness also is form. Emptiness is no other than form; form is no other than emptiness. In the same way, feeling, perception, formation, and consciousness are emptiness. Thus, Shariputra, all dharmas are emptiness. There are no characteristics. There is no birth and no cessation. There is no impurity and no purity. There is no decrease and no increase. Therefore, Shariputra, in emptiness, there is no form, no feeling, no perception, no formation, no consciousness; no eye, no ear, no nose, no tongue, no body, no mind; no appearance, no sound, no smell, no taste, no touch, no dharmas, no eye dhatu up to no mind dhatu, no dhatu of dharmas, no mind consciousness dhatu; no ignorance, no end of ignorance up to no old age and death, no end of old age and death; no suffering, no origin of suffering, no cessation of suffering, no path, no wisdom, no attainment, and no non-attainment."

I mean no disrespect to Buddhists when I say that I don't understand any of this. However I can understand it can be an aid to meditation and to trying to see the world we inhabit in a different way. However Sam talks like this lots of the time. It is the world he inhabits. For him it is the real world.

He got cross when Jane didn't understand.

"You're like the doctors. You don't understand. That's why I don't tell them anything of this."

When Sam talked more of the void he explained that if there was nothing there then there was no point in anything. This was leading into more worrying directions especially when he kept reiterating this point.

I joined in and talked with him of the different realities in his head and the need for him also to work hard at that reality that involved interaction with friends and family and ward staff. He understood this.

"But that's what I've been trying to do for the last few years. I keep pretending. But it's just pretending."

He said that the world that we inhabit was not nice. Everyone was always fighting and arguing and judging each other.

"I know I'm different from everyone else. I'm living on a different plane and just feel nothing is there. It's not an unpleasant feeling."

"What do you feel," asked Jane.

"I feel frightened. It's kind of scary."
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Sam's sister Nell is home from university at the moment. She is off out with friends tonight. Several arrived earlier. Sam was eager to chat with one of them when she arrived. She is attractive and maybe she can persuade him of the delights of being in this reality than the one that is a void.

Others arrived and suddenly the house was full of young women, dressed for a night out. Mobile phones had been going all afternoon. Plans were constantly changed and suddenly Nell was preparing a snack for her friends at the same time as Jane was preparing dinner for herself, me and Sam. This was further complicated by Sam deciding he was vegetarian half way through the preparation. (Usually he is the greatest meat eater whilst Nell is vegetarian!) It all worked out in the end and Nell and friends disappeared in a blaze of long legs, bare midriffs and layers of make-up. I'm sure Sam would have loved to have been joining them. But he needs to decide which reality he wants to be in.

He seemed withdrawn after they left with all their enthusiastic life and vigour. Not just withdrawn. His body language was that of when he is poorly. He had a glazed almost zombie look on his face. He later perked up a bit, played cards with Jane and then settled down to watch television with us.
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This evening we were watching a drama on television. Sam suddenly claimed that he knew what was going to happen next on the programme all the time. We suggested he might have seen it before. It was a repeat.

"No. I can see what is about to happen."

Sam has often in the past claimed to be able to see a short distance into the future.

"Just then! I knew what she was going to say!"

For Sam, that proved it.
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We allowed him a single glass of wine. A little later he was writhing on the floor doing some kind of exercise and waving his cigarette lighter above him. Soon after that he was laying stretched out on the sofa with his eyes staring wide open totally still. I motioned to Jane and she touched Sam and said something. He came round and then slept for a while before watching the rest of the programme. He seemed fine later.
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I'm describing today not as an extreme - but just as a typical day when Sam is actually quite well.

It is disturbing that he is on his maximum medication, that he seems still quite poorly and that we're not sure - even with a good medical team - that the mental health staff observe anything of these experiences that we see when he is at home.

I've just been trying to do some tidying up of the links and to add a few more general ones - including some that link to me.

I have fewer visitors from the UK than from elsewhere and would like to increase my hits from the UK. If any of you can suggest places to put my links or can spread the word - I would be very grateful.

Sam came home to stay overnight on Saturday.

We were having a small party for our French friends and thought it might be nice for Sam to join in. The ulterior motive was that we could both have a drink and not have to worry about driving Sam back.

When I picked him up he looked great. He was wearing his glasses, which I thought he had lost. He looks kind of intelligent and distinguished in them. They certainly helped him look better.

Maybe it is also a good sign that he is looking at the world outside as well as the world inside his head.

Sam was in the room as I was having discussions with our visitors. I tried to draw him in to the conversation. Although he seems well he was incapable of discussing any of the issues we were talking about - social and political - in a meaningful way. I'm not surprised by that but it was a measure that although he is seeming well he is so far away from that intelligent, articulate young man who was studying for a degree only a few years ago. I wonder if we shall ever see him again.

I enjoyed the party. Sometimes I am stressed by the thought of having to meet lots of people but it went well and fuelled by a couple of glasses of wine I really enjoyed chatting with people I hadn't seen in a long while. A couple who are keen semi-professional photographers admired some of my work which made my day! I took a few snaps of them to show off the flexibility of my new camera and they were eager for me to send them copies.

Sam joined in a few conversations. I heard him answer when asked what he was doing now, "Oh, I live in a mental home." To give them their due they didn't blanche or back away but I think it was the end of the conversation.

Sam then got into conversation with another young man who lives locally - the son of a friend. He is a Buddhist with which Sam has some sympathies. But this guy describes it almost as one would a cult and talks of teachings in a monotone speaking a remembered script. I find this disturbing. Although young with a small child he is separated from his partner and seems in some ways dysfunctional. They were able to converse for ages. He thought Sam seemed the best he had ever seen him.

Sam slept a lot on Sunday but was able to visit friends and put on a positive front and also coped with a large gathering for dinner.

On Monday our friends left. I was - and am - totally exhausted. I think that being so busy together with the stress of the last few weeks has just taken its toll on me physically and emotionally. On Monday evening I just couldn't cope with a conversation with jane about a meeting she was to attend today. She was very understanding but sometimes finds it difficult to accept me not being fully well.

I think I just need to look for some more space again.

On Wednesday Jane phoned the ward. The ward manager was really positive. Sam seemed well. Much more like his old self. She didn't know how to put it but . . .
well, he just looked like Sam.

When Sam is really poorly, he does look different. His body language and facial expressions really are unusual. You can tell straight away.

He had told her he was no longer living in the spirit world.

Thursday I picked Sam up to help my parents move house. I hoped he could help with some of the lifting. He seemed fine and was keen to stay for dinner to meet some friends we have staying from France.

He seemed a bit vague but okay.

I didn't know I was angry about his adventure at the weekend when he had gone awol from the ward, smoked cannabis and been picked up by the police.

It was only when I found myself having a go at him in the car. Why had he gone off without telling anyone? Why had he done this to worry us when we were away? Why had he taken cannabis again?

There were no answers but I was saddened by my own reaction - though in some ways I think it is reasonable. He needs to know the effect his actions have on other people. But then he is also ill. His actions are not necessarily rational.

When we stopped in the car to drop off some belongings at my parents temporary accommodation Sam sat in the car staring - as if in a dream world.

I waited a while and then asked what he was thinking. He said he had been confused. He thought his granny and grandad were going into a care home.

We had discussed very clearly what really was happening so he would understand.

Later I had a chat with him. For ages I have wished I had a tape recorder to remind me of his words. Later I can never remember. There were two main things he said that I was trying to keep in my mind but they have gone.

I don't know if it is my own short-term memory problems or just the fact that much of what he says makes so little logical sense and is so confused that although it can be fascinating at the time it is impossible to recall.

I do remember a discussion about Sam's ability to control other people's thoughts. It became an intellectual discussion about the effects any of our thoughts can have on others. Clearly anyone's thoughts and moods can effect others but Sam has a belief in an underlying causal effect between his thoughts and other events. The more poorly he is the more overt he is about this relationship. He refused to accept that his thoughts could not directly affect my thoughts.

My French friend rescued me. He took Sam for a walk while I prepared a meal and then beat him at chess. Sam was surprised - and a little upset by this!

Today I have been busy entertaining our friends and helping move my parents.

My parents are in their eighties. The removals firm was an hour and a half late, the new owners could not be allowed in to the house because the cheque hadn't cleared, the burglar alarm went off and wouldn't stop - eventually fusing the house electricity, their car - laden with all the last minute things that hadn't already been taken - broke down, there was a message from the house builders that their new apartment wouldn't be ready for a further four weeks and they forgot the kettle and the milk!

And I think I've got problems!!!