'schizophrenia'

- a carer's journal

When we arrived to see Sam yesterday he seemed a bit cross or frustrated. He looked as if he could easily become irritated or surly. There was little in the way of friendly greeting from him. We had hoped to take him for a short walk with a nurse. He was eager to get out as soon as possible.

Once we did and he'd had a couple of cigarettes he began to relax and become more chatty and friendly.

It must be so difficult being cooped up on the ward for most of the time. There is little to do on there. Anyone couped up in such a place with another dozen or so young men would soon get angry and frustrated. I would send anyone mad. But if you are already mad and mixed with other mad men then ...

Interestingly the nurse accompanying us was saying almost exactly the same thing.

Sam has spoken on the phone a few times saying how much he enjoyed his birthday and his presents.

One present from a friend was a poster that she knew Sam would like. He has never before in any of his hospital rooms wanted to decorate it or put anything in it to make it nicer or more homely. It is as if he refuses to accept that hospital rooms are in any way his - that he wants no part of it - that he intends to move out as soon as possible. Making it nice would imply he wanted to stay there.

Well he put up the poster on the wall and a picture of his young cousin wishing him "happy birthday". He also displayed his birthday cards around the room.

I hope this acceptance and more positive attitude to the hospital ward is constructive.

It is so annoying when the media news is all about sun and heatwaves because it is hot in London - whilst elsewhere we are getting showers of rain and murky cloud and mist.

It was raining this morning. That shouldn't matter. Such a small thing. Except that it is Sam's 30th birthday today and we had got him some leave. Most days he is lucky to get a walk round the hospital grounds with a nurse. Today we had managed to arrange for four hours leave accompanied by a nurse to have a picnic at a local beauty spot that Sam likes. Sam's first extended leave for ages ... for a picnic ... on his birthday ... and it was raining!

But the rain stopped - and the sun even made a very brief appearance as we were eating our picnic together. Sam loved it. He liked his presents and just enjoyed being out. I began to panic slightly when he started to talk of how he could jump into the river as we were standing on a bridge - and the wicked gleam in his eye accompanied by a rather worrying grin as he edged closer to the river as we walked back to the car ... !

But he was returned safely back to the ward without his usual reluctance with thanks for a nice day.

Lets hope the success of today leads to more planned leave.

It was Sam's "Managers' Hearing" on Friday - a kind of appeals tribunal against his detention. Of course it was not found in his favour but he coped with it very well. This time I didn't go - just Jane attended. I think sometimes we can build the tension when we are both there.

On Saturday we managed to arrange to go for a short walk with Sam. It took some organising but was sorted eventually. Sam was fine when we arrived but when we went for the walk he seemed more pensive as if he was having some troubling thoughts. He discussed some of these with us as we walked. I think he had partly been disturbed by a new client on the ward - someone straight from the prison system. But Sam thought he was settling.

By the end of the walk Sam had calmed and seemed settled.

Tomorrow is his birthday. We have managed to get him leave to take him for a picnic at a local beauty spot with a nurse from the ward.

Must dash now to wrap his presents and prepare the picnic!

He was angry on Wednesday. The day before, at the ward round meeting, the psychiatrist had shown him his care co-ordinator's report for the Mangers' Hearing tomorrow.

A Mangers' Hearing is one of the appeal mechanisms to get out of hospital when detained. It was through one that we - unusually - managed to get Sam out (is it really five years ago now?) to go to France.

Sam was angry because he said his care co-ordinator had lied. He had described again the time when Sam had a serious road accident. It is often used as an example of why Sam is at risk. It was before his first detention in hospital almost ten years ago. Its relevance now seems low - its inclusion just lazy reporting of Sam's current state. Sam may also be right. He probably gt hit by the car because it was a dark night, he was wearing dark clothing and he was drunk. But it gets dragged up again and again because he was seriously injurred. He has done more stupid things and more dangerous ones as a result of his psychosis. If they were emphasised more then Sam might have to reflect rather than turn to anger as a response.

As we talked and explained he calmed and seemed to understand.

We also had to explain that he was unlikely to get out tomorrow - that he needs another strategy - but I think he knows that anyway.

We had seen Sam last Wednesday for the family meting. To start of with Sam was surly and uncommunicative - but for the second half of the meeting - after he had been out for a cigarette - he was very sociable and much more rational.

So we were surprised and disappointed to find him really surly and antagonistic when we visited him on Saturday. Conversation was difficult. He seemed to be trying to pick arguments with us when he talked at all. Then he told us that he was finding our presence really oppressive. he said he loved us but we were creating a strong feeling of anxiety in his chest that he could not understand or control. We suggested we should leave but he asked us not to.

"No, I'll go for a cigarette and perhaps I'll feel better."

So he went for a cigarette but on his turn things continued as before ... so we left saddened and disappointed. The staff said how well he was doing - because he is calm on the ward ... but his mental state is still very, very confused.

Currently I normally take Sam eight 12.5 gram packs of tobacco each Saturday. The notion is that there is one a day and a spare one. That seems to have been working out okay recently. Then last week he asked if we could take some more in when we were joining him for a meeting on the Wednesday. So I took in four more packs. On Friday there was an urgent call. Please could we take some more tobacco in for Sam.

He has been smoking a bit more recently but it does seem to be getting out of hand. Yes he will be bored ... but perhaps he shouldn't be if there were more activities available. He has few pleasures - but smoking is a danger to his health yet it is a nurse ringing me asking to take it in. His increased weight gain is a risk to his health - but again it is a nurse asking me to give him some more money to buy take-away food from the pizza and burger bar.

Smoking tobacco also works against the effects of the anti-psychotic medication. Perhaps that is another reason that many psychiatric patients smoke - to alleviate the affects of their medication. When smoking has been banned on some wards they have had to reduce the medication as a result.

We had to go away to visit relatives for a funeral at the beginning of the week. On our return we got a call to say Sam was out of tobacco. He should have had plenty but it seemed it kept getting put in the washing machine with his clothes.

At least he had clean clothes we thought.

Then we had another call to ask if we could take him some more trousers as he had none left that would fit him. As they are prescribing the medication that is making him so fat perhaps they should be providing the larger trousers!

I was a little annoyed because as well as having taken him in plenty of tobaco at the weekend I had also taken him in some more trousers and some shorts but ...

Yes, you've guessed it. The new trousers and shorts were in the washing machine too!

On Saturday I went to visit Sam. When I arrived he was laying on the settee. The weather was hot and he must have just come in from outside. He was wearing shorts and nothing else He looked so fat and bloated that it was a shock to me to see him like that. He has put on so much weight in just a few weeks.

During the week he had sounded quite well on the phone. So I was surprised at how excitable he appeared. However we had a good chat and enjoyed each other's company for an hour. But I went away saddened that he seemed to be making less progress than I had imagined

"Let's talk of reality. This seat is real. Imagine someone dead lying on it and that they have been killed by a knife. There is an atmosphere of evil in the room. The atmosphere is real. You can sense it. That atmosphere drips through the plug holes and through the drains into the rooms of the criminals in the prisons. They are evil and feed on this evil. Their madness is fed by it. They are mad. They are evil. The madness and evil are real."

It is difficult to find a response to such statements - genuinely felt. Then the discussions of the miracles he has performed, his ability to know the future, his ability to read our minds ...

By the end of the time we spent with him he had calmed.

His named nurse, an experienced and sensitive nurse, had been just outside throughout, he hadn't made a big deal about it ... just enough for us to know he was there if needed, but sensitive and understanding. He also made no issue about a colleague having been assaulted by Sam earlier ... though we continued to express our apologies and concern.

We were just setting off to visit Sam this afternoon when the phone rang.

It was the ward. Sam had attacked a female member of staff when he was being given his medication this morning. She'd had to go home. He was under observation so it was better that we postponed our visit.

In the evening Sam phoned. I asked him if anything had happened during the day. No, he answered. Had he already forgotten or did he not want to say?

We get close to despair sometimes.

The nurse who phoned assumed Sam would be fine once his medication had been increased. They have been increasing and changing his medication for the last ten years. Why do they assume they have the simple answers? If there were simple answers they would have been found and implemented by now.

We had a good visit with Sam on Saturday. He seemed calm and cheerful. He was keen to give us a picture he had painted a few days before. The only downside was the fact that a nurse had to supervise the visit. It is a while since they have done this. It is an indication of how unstable they think Sam is.

Sam's good humour then was in stark contrast to how he has seemed in phone calls and information from staff on either side of the visit. For a couple of days before and since then he has been angry and confused on the phone. A couple of times he has smashed the phone. He will ring up and start talking then ring off half way through then ring back a few minutes later. Yesterday he attacked a member of staff then was attacked by another patient. Today he rang me twice to tell me he could get me a free car then rang off quickly.

Sam rang earlier on Wednesday. He said he had found the answer ... the way forward. He told me he wanted to become a Conservative MP. He knew though that he would have to become bald first, he said.

I tried to joke with him about it in a lighthearted way but he was giggling manically and couldn't engage - then he put the phone down.

On Tuesday morning we rang the ward to see how Sam was. There had been an incident. He had thrown a cigarette at someone ... then someone had thrown a dustbin at him but that seems to have got lost in the later recountings of the incident!

Sam had only slept for an hour in the night. He hasn't been sleeping well at all it seems since he came off the Clozapine.

We discovered later that as a result of the incident Sam had been offered the choice of being restrained and injected with Haliperidol and Olanzapine or taking it orally. He took it orally.

We had asked to visit the ward round meeting that afternoon. The original plan had been to describe how well Sam was and question why his leave had been taken away. Now he is becoming so unwell that clearly wasn't possible. We waited outside with Sam. He had been with his advocate which was good - Sam asked him to come into the meeting too. Sam could only grin and laugh and talk in short phrases. It was difficult to have any conversation with him.

Soon we were invited into the meeting. It looked very high powered for a typical ward round. The pharmacist was there with a student. The ward manager and the assistant ward manager together with the psychologist were also in attendance. Sam wasn't able to take part properly. He just giggled, laughed and said yes. When he got fed up he went off to try to get a cigarette.

We tried to emphasise how well Sam was when he was off the medication ... but they just say this is because he still had some medication in his system. They believe the psychosis has come because it has now worn off. They don't recognise any concept of 'rebound psychosis'.

The weight problem - that Sam had put on at least thirty pounds in weight in a couple of months was regarded as an unavoidable consequence. The fact that the ward allow him to have several helpings at dinner time and then to order a take away pizza and burger does not seem to be recognised as a contributory factor. Surely the ward have some responsibility here?

If they can make him take his medication cannot they stop him ordering pizzas and burgers?

In the end we were with them trying to persuade Sam to take the Clozapine medication again. Given the fact that the pharmacist was there we were worried that they were planning to chose something else they could give Sam as a depot - an injection of medication that will last for a few weeks at a time. This is commonly used with patients who refuse their medication. Clozapine is not available in this form so it would mean a change to yet another medication.

Later we had a family meeting with Sam, the ward psychologist and Sam's psychologist from the Assertive Outreach Team. Sam doodled and giggled for most of the time - so we finished earlier than usual. We had been chatting before the meeting with the ward psychologist - but he seemed just as brainwashed by the approach to medication as the rest of them. There is no possible understanding amongst any of them that a patient might be able to be better without the medication if it was withdrawn properly; that is - very, very slowly.

Later that evening Sam phoned back and apologised. He was clearly feeling much better again. It was something of a relief to us.

But then in the morning he rang again just before lunchtime in an overexcited way to say he had been smoking a kilo of cannabis and was very high - then slammed the phone down.

In the afternoon he rang again to say he was feeling better again.

So some of the psychosis seems to be bursting through occasionally. I wonder if he will be able to hold it at bay. I fear that it may be rebound psychosis starting to appear.

I was up to visiting Sam on Sunday. I took him a book to read and some flowers. He had rung earlier and asked for these. This is the first time I can remember him asking for something to make his room attractive. Usually he refuses anything to brighten his room - to mark it as his. He wants to move out as soon as possible and not to recognise any of the wards as a home.

He was quieter today than he had been with Jane - but gain very well. He was keen give me a hug when I arrived and when I left and we talked sensibly and calmly for an hour. It is good to see him well - even if he is so dreadfully overweight after only a short time on that medication.

On the way out the nurse said that he hadn't slept the previous night. Sam had said he was tired. Perhaps that was the reason for his quietness.

Later that evening he rang in a more argumentative mood like the less well Sam. It was only when Jane was firm with him that he backed down and seemed more reasonable again which was positive.

Is this though the start of a relapse?

On Saturday Jane visited Sam with presents from our holiday. I was still in bed laid low by my tummy bug.

She said he was the best she has seen him for years. He was articulate, concerned, loving, sensible, understanding, reasonable ... in fact sane. So the best he has been for years is when he is off medication ... yet the nurse told Jane last night they had seen a marked deterioration.

Why the mismatch? When you talk to the nurses all they see is a problem because he is not taking his medication. They are not able to recognise that e is currently better without it. It is not part of their training or programmes. So it is wrong ... they cannot question the treatment. He my soon relapse again ... but the fact that he is at his best off medication should surely tell them something ... especially if a new relapse is rebound psychosis from coming off his medication too quickly.

The following day he rang us and spoke to Jane. He told her what a good mum she had been to him in supporting him and that she couldn't have done more. It was very moving to hear those words from him when he is so well.

We were away on holiday last week to a place exotic enough to give us both bad tummy problems! They are getting better now so I am sure we will survive.

When we arrived home on Friday Jane phoned the ward straight away. A break does us good in helping us to switch off but there are still times when we worry about Sam - probably Jane more than me. We were particularly worried this time as Sam had stopped taking his medication. There was potential for him to relapse and we did not know what the consequences of that would be.

When Jane phoned she was told that Sam was still not taking his medication so his leave had been cancelled. She said they had notes a marked deterioration in his mental health - that he was talking often of Kundalini and God. He was talking of Kundalini and God lots of the time while he was on the medication. So what had changed?

Sam rang this lunchtime. He had seen the doctor yesterday and was meeting him again today. Sam had been talking to him about Kundalini. Please would I search for "kundalini", "schizophrenia" and "misdiagnosis" on the internet and print it out for him. Sam had done this with a nurse yesterday but the paperwork had "gone missing".

So I did this in time for a later meeting with Sam and his psychologist this afternoon. I arrived early and was chatting with Sam when a nurse came for him ... it was time for his medication.

"No - I'm not taking my medication."

I was surprised. I had no idea of this. I tried to reason with Sam. He said he hadn't taken it for three days, that he had been misdiagnosed - he had kundalini not schizophrenia - and that he had no intention of taking it.

Later when Sam's psychologist arrived he went to check with the ward staff. It seems that Sam did take his dose last night. This is important as he is on Clozaril. There are strict monitoring requirements with this medication and if he is off it for 48 hours then it will have to be reintroduced again from scratch. Also the rebound effects of coming off Clozaril suddenly are said to be severe.

We discussed this with Sam and also just the strategic approach of keeping in with the hospital staff so he could get out sooner. But he was not convinced. The arguments just seemed to wash all over him. He was articulate himself but did not seem in the mood to take on board any of our arguments.

But he may have forgotten all this by bed time and take his medication again then ... who knows?

But it does raise one of the points we made about it being a bad idea for him to be put on this medication ... that when he became well he would not want to take it!

I went to see the doctor today.

I had booked to see her nearly a fortnight ago - this was the first appointment available. She is part time and very popular as she listens well. You can get to see other doctors in the practice the same day. Also she knows about my illness and Sam.

Jane and I had seen her before Christmas about possible support - to prevent us having nervous breakdowns again rather than waiting until it happens. But of course there is nothing available. I knew this. We'd talked on the phone ... but she suggested I still went in to see her today.

I was disappointed. I didn't expect her to pull any special support out of a hat but ... well was surprised she understood less than I had imagined. I tried to explain that I wasn't suffering from stress but that something had made me ill so I could no longer cope with stress. I mentioned the time more than twenty years ago when I was sat in a room two doors away talking to a doctor who told me my wife as going to die when I had two young children and a stressful job. I went in to work every day then. Before I became ill I had a responsible job where I was given the stressful tasks because I was good at them and thrived on stress. I am not suffering from stress - I am ill - but it may be stress in the end that made me ill.

I had hoped she would understand .. but she was busy and knew there was nothing she could do for me ... so we moved on to the nuts and bolts where she might be able to help keep my creaking body going for a bit longer.

When Sam phoned on Friday he seemed amazingly well. He was keen to tell us of having been out and gone to a meditation class followed by a recovery group. He had pleased himself with how he had been able to concentrate and take part. He often finds group situations difficult. He was clearly pleased with how it had gone and was eager to share it with us.

So we were looking forward to going out on a walk with him on Saturday.

We had to wait a while when we arrived until a nurse was available to go out with us. During that time Sam was friendly and seemed quite well - apart from some inappropriate grinning that implied here were other things going on in his mind.

The walk started fine but Sam soon became broody and slightly surly. Soon he was becoming antagonistic, saying he didn't want to be in hospital at all and venting his anger at being locked up. He got a light for a cigarette from the nurse then started chain smoking for the rest of the walk. I was worried that we would have trouble getting him back but eventually he was persuaded to return.

As we got closer to the hospital again Sam cheered a little and apologised to me. He explained that sometimes he just got upset. It is understandable. I'd be pretty fed up at having been locked up for so long.

I was exhausted on our return but probably more from the emotional energy than from the walking

We were able to go out for a short walk with Sam on Saturday. But this comprised of going for a walk to the shop a hundred yards down the hill to buy him a sandwich as he'd woken up late and missed his lunch. By the time he had eaten it sitting on a patch of grass near by and walked back up the hill he was exhausted and asked to go back inside. We went in and chatted for a while but he said he was tired and wanted to go back to bed. He also said he had a slight pain in his chest. We told the nurse of this and he asked for a doctor to check Sam. So it is good they are taking potential heart problems seriously.

I woke up feeling dreadful. Well I often do in the mornings. But on this particular morning I didn't seem to be able to pull myself out of it. I remained tired and dizzy and aching. I found it difficult to think positively and was perhaps worried about the rest of the day though it wasn't in the forefront of my mind.

We had a meeting with Sam and his psychologist in the afternoon - part of a planned series. We were also going to take him for a walk beforehand - and meet with his named nurse afterwards to discuss his weight gain and diet.

I am finding myself feeling stressed more easily recently and perhaps each of these would be enough for me. Maybe the thought of all three had got on top of me. Though I feel very bad about this. I want to be there for Sam and feel guilty that I can't cope.

On the way in we bumped into a young man dressed smartly in a very snappy suit. It was Sam's psychiatrist. He recognised us and stopped for a few words - asking when he might phone us to discuss Sam's progress. We were in an "air lock" where it was not possible for doors at both ends to be opened at the same time. The nurse taking us in commented on how we were made to wait until the psychiatrist was let out at the other end even though we had been at our door waiting!

Sam was fine - but I was a bit disappointed given all we had heard of his improvements. Perhaps I was hoping for too much.

I got home tired but fairly positive and pleased I had managed the afternoon well. There was a message on the answerphone from my dad asking for more help in programming his new TV equipment. I had planned this as one of my alcohol-free days but on my return I poured us both a glass of wine!

We returned from a few days away over Easter. We were visiting Sam's sister Nell. It was great to meet up with her again and catch up.

When we got back Sam phoned. He was so very well. He talked of how he was getting better and coming out of a strange place he had been in. He said he was still having "special thoughts" but that he was in control of them now and recognised normality.

His grandparents had visited him over the weekend. At the end my dad was in tears. Sam said it was probably because he had seemed so well. We know that is the case. My dad lights a candle and prays for Sam every day.

I woke up from a dream about Sam in the middle of the night recently.

I dreamed that they had decided he was well enough to move to another ward - but not to the "step-down" ward attached to where he is now. It was as if he was being pushed off to yet another hospital but nobody would explain what was going on or whether he would keep his psychiatrist or what the rationale was. We were being kept out of the loop again.

It was just a dream.

I hope.

I've not been feeling too well since before Christmas. My ME symptoms coming back and some of my anxiety and depression. I know I have been finding difficult situations harder to cope with.

I've also been finding it harder with Sam. I think I'm frightened of the responsibility of him getting better. I know that it is harder when he is well than when he is ill. It is when he is becoming independent that things can go badly wrong. Perhaps I am scared by the responsibility. I'm not sure if I am strong enough for another time round.

That's another reason I'm cross with myself for being unwell now - so I get more depressed and get into a downward spiral.

Though I am working hard at keeping positive and trying to do things. It is important to keep up with positive attitudes and feelings. I am trying hard.

Before Easter staff were saying how well Sam was - what an improvement he had made.

He was putting on weight and was sleeping most of the day but when he was awake they were very pleased with him.

He was more amenable and presented himself well ... but in conversation with us he was talking of God's voice inside his head telling him to do things. But he probably didn't want to talk of these things with staff.

We should be pleased he seems better but there is a nagging worry that they will change some of the surface issues leaving much of his psychosis untouched and declare him better. Then we feel as if we are harping about things and being over-critical.

Sam phoned last night after ten. He wanted us to order him a pizza. He'd no money left. We left him £20 on Saturday but that had gone. He was hungry. He needed something savoury. We hadn't left him enough money. He was angry.

He isn't eating meals on the ward because he is usually asleep. He isn't causing problems because he is sleepy and acquiescent. He is putting on a huge amount of weight but nobody notices or cares ... because they think he is getting so much better.

But nobody is listening to him - when he talks to us all the underlying symptoms are still there.

We have a close friend whose daughter is diagnosed with schizophrenia. (In fact we have a few similar friends now!)

This friend had not seen her daughter for eight years. The professionals would not pass on any news because of "confidentiality" as her daughter said she did not want to be in contact.

Just recently for complex reasons her daughter has had to come off her medication. Having done so she asked to see her parents. She said that all this time she believed that they were possessed by aliens and were not themselves so she would not meet them. That is despite the fact she was regarded by the professionals as being stable on medication.

It is only when she has come off her medication that she has recognised her delusions and wanted to see her parents again.

The most lucid that we have seen Sam in recent years was for a brief period when he was off his medication when we were in France before the rebound psychosis set in.

It is as if the medication actually causes many of the symptoms. A psychiatrist we once knew would never talk of this medication as "antipsychotics" as he knew they weren't but instead insisted on calling them "neuroleptics".

I've been away for a week - some rest and recouperation!

But on my return there were good reports about Sam. They said how well he was. They seemed to be excited by it. So we were looking forward to seing him.

We thought the new medication must have been kicking in - well it was making him fat so perhaps it was also making him better.

Part of us was perhaps worried that they would see it as the magic cure ... after so many years! Whereas we are left with the long term view and have seen too many false dawns.

Do we then come over as too negative?

It was three o'clock. Sam, had just got up - we were left waiting while they gave him his meds ... I am sure that must have been outside the window they were prescribed for.

He was drinking some tea and a huge piece of chocolate cake. That will be good for his weight.

He looked even heavier than last time I had seen him just over a week before. This sudden and huge weight gain is not goo - but seems not to have been noted by staff.

Sam started fine but soon became truculent. We were all living in a war zone. That was reality. We were suffering from delusions if we denied it. Jane and I were mad ...

and so it went on.

As he became more angry we decided to leave.

We felt as if it was us that had sparked him becoming unwell ... but there were clearly underlying symptoms. However perhaps the staff having seen him more positive and behaving more sociably felt this was progress without having much idea of what the underlying thought processes are.

At the weekend Jane saw Sam on Friday and I saw him on Saturday. We had both last seen him the previous Saturday.

In those few days we were both astounded by how much weight he had put on. At least half a stone and probably more. He could not fasten his trousers and his face was puffy.

We each mentioned it to staff but they made light of it. They had not noticed. Well .. he eats a lot ... was their attitude. But the change in medication has increased his appetite. His named nurse lends him money for take-away pizzas. They think he is not well enough now to discuss healthy diet - they will wait until the medication has started to work on his mental state first.

We have been waiting for that for the last ten years.

In any case - by then if his metabolism has changed and he has put on a huge amount of weight the damage will have been done.

His current medication has previously affected his heart so that is being monitored carefully. Increase in weight can affect the heart. So is it not a good idea to monitor that?

They were not even weighing him before this week since we have asked. Where psychotropic medication is associated with serious weight gain surely this should be monitored. This is a hospital yet there seems to be little concern about serious weight gain - and we have found this on most of the psychiatric wards where Sam has been based.

It seems that serious weight gain is regarded as an acceptable consequence of trying to treat psychotic symptoms. So if he dies early from a heart attack or gets diabetes that is okay.

It is too close to the old joke about the treatment being a success but the patient died.

When Jane visited Sam last Friday he was in great form. He seemed really well and was discussing things he had been doing during the week in a positive way. He was friendly with her and things went swimmingly.

So I was surprised and disappointed on Saturday when I found Sam again antagonistic and angry with me. He was calm and not threatening but he was not well. He had seen me often on the television and knew I was evil. But each time I suggested I should go and come another time when he was feeling more positive he asked me to stay.

I stayed for a while but decided not to overdo it.

Later that evening Sam phoned me and apologised. He seemed to have got over whatever was troubling him.

I'm sorry I haven't written for a while ... I seem to have fallen into a stupour! Though I have also been less well. Since before Christmas my ME symptoms have recurred a little more strongly and more often. That in itself becomes depressing and I am in danger of getting into a downward spiral - though I am trying hard to not let that happen.

More tomorrow.

I promise.

In fact I will write it now ...

Sam called last night. Several times. He wanted us to call the olice for him. The emergency services number does not work on the ward payphone. I wonder what other payphones this number is disabled from?

He thought another patient had threatened his life. It was no good talking to staff -they would do nothing. He sounded very confused and mixed up and angry with us. We tried to calm him down and got him to talk to the nurse in charge.

I think our last call from him was about half past midnight. It was to tell us that at least his Granny and Grandad had been understanding and supportive when he had also called them twice - whereas we didn't seem to care!

Sam has kept telephoning recently - at about seven in the morning on Saturday and Sunday did not glean the most wakeful responses from us. Sometimes he has been quite calm and settled - but at others he has been very troubled and even antagonistic.

It has just reinforced to us how changeable Sam is.