'schizophrenia'

- a carer's journal

Yesterday I drove across the country to visit in hospital the brother of a good friend. His brother was attacked some time ago and has been in a coma since.

He has been moved from hospital to hospital a couple of times recently as they have been concerned about lack of progress. It seems they have decided that he has made no progress and is in a persistent vegetative state. My friend is naturally upset at his brother being there alone. He is further upset by a phone call from the doctor to say his brother has a chest infection and that they do not intend to treat it - but just to give palliative care.

So I visited today.

He was asleep when I entered the room. I started to talk to him and he awoke. He opened both eyes wide and seemed to be aware of me. Then one eye drifted half closed and he seemed less aware of my conversation with him. I know from my friend that his brother likes classical music. He was in a private room - the last time I visited he was in a ward with five others. So I wondered if it might be possible for him to have a radio. I asked the nurse - expecting to be told it was not possible but she said it would be fine - except it would need to be checked for safety by their electricians.

So I went into town to buy him a radio and left it with the nurse who had said it would be fine. I also found the hospital chaplain's office and arranged for someone to visit again.

Then I drove home and phoned my friend.

We had a planned family meeting with Sam and his psychologist yesterday. We were keen to go ahead with it. It seemed important to go ahead with it while the incident was still live in all our minds.

There was confusion over the room and the psychologist and his colleague was late. A nurse showed Sam into the meeting room in the main hospital having escorted him from the PICU and asked us to phone her when we were finished. Then she left us alone with Sam. This was the first time he had seen his mother since he had attacked her and she left us lone in a room together without waiting to get any idea of the dynamic.

"So you're not dead then," said Sam.

Then he Hugged his mum and told her he was sorry. They stood hugging for ages. When eventually they stood apart Sam asked if he could hug me. So we hugged for a while too.

Then we all sat sown and wondered what to talk about. Sam made polite conversation about the view from the window. Making polite conversation?! That is huge progress on what has happened recently.

Soon the psychologist and his colleague arrived and we had a positive meeting.

We drove back with a beautiful autumnal sunset shining across the hills. Jane and I have both been feeling physically as well as emotionally down the last few days. Today will have helped to keep us going.

Yesterday morning Jane rang the ward manager to report the incident properly. We were worried about the consequences of such reporting. It just seems to up the stakes. It's not long ago that they were referring Sam to a forensic ward because he had slapped some nurses. More security would make him worse not better.

The manager seemed to understand this but started talking about the future and whether home might be better than supported housing.

Sam has just seriously assaulted his mother and the ward manager is asking what we might think about Sam coming home ...

It isn't good timing.

When I got home our friends were with Jane and she seemed well. We are lucky to have such kind friends. This one just happens to be a professional in the mental health services as well as knowing Sam. She is a good friend. She was reassuring and gave us good advice.

That evening there was a call from the ward. The nurse asked Jane if she was alright. We had said little to them so far so Sam must have told them more. Jane reassured him but gave few details of what had happened at this stage. It seems that Sam had been very agitated and angry on his return and had ripped his bedroom door off. Sam wanted to talk to her though and he put Sam on the phone.

Sam told Jane he loved her and was apologetic but still insisted he was angry because Jane had signed forms to have him locked away. This is something that never happened that he still believes and is at the root of some of his issues with Jane.

Jane did not sleep well. She kept seeing Sam's hands coming towards her. Each time she rolled over it hurt a different bruise on her head.

Yesterday Sam was excitable and unpredictable when Jane picked him up - he was also belligerent and verbally aggressive.

He calmed during the short time we had together and was fine when he returned.

Today he called a couple of times in the morning. The weather was fine and he was keen to go for a walk. He sounded positive and together.

When I picked him up he was quiet and vacant. He had just woken up. He talked of the effects of his medication then noticed an electricity pylon that looked like a cross and started to talk of religion. All the way home he kept changing his mind about what he wanted to do and was vague and contradictory.

He was fine at home for a while. He chatted with us both. He listened to some music with me. Then he wasn't sure where he'd left his cup of tea - it could have either been outside on the front step where he had been smoking - or upstairs where he had been chatting with his mum.

I didn't hear at first - or didn't understand. Jane was screaming from upstairs. I ran up. I realised it must be Sam. I called out to him. As I got to the top of the stairs he was coming out of the bedroom where Jane had been resting and reading the paper. His eyes were vacant and emotionless.

I went past him to find Jane sobbing. Sam had come at her with his hands as if to strangle her and as she protected herself with her hands he then started to beat her about the head.

I needed to see that Jane was okay - but also to know what Sam was likely to do next. I'm sure those decisions can never be right - but you do what you can at the time. I managed to get Sam into the living room and persuaded him to stay in there while I saw to Jane. I closed the door knowing I would hear it open if he left. Back upstairs with Jane, trying to ascertain how she was and to comfort her I soon heard the door open. I went down. Sam was smoking a cigarette on the front step. I went back up to Jane and kept checking that Sam was on the step. He stayed there smoking his cigarette.

Then suddenly he had gone. I ran out and after him going the wrong way at first then found him walking down the street. I ran softly so as not to disturb him before getting within calling distance and called in a friendly way for him to wait for me to catch up. He did and we walked on together as if going for a stroll. I manged to turn him round and we went back. He was talking kindly of Jane as we went got home so I thought it might be possible for him to apologise or something before I got him into the car and picked up his tobacco. We went in and Jane was still upset. I was holding Sam's hand as I led him in like a child. He suddenly turned and ran.

I got in the car and followed him at walking place round the corner. After a few hundred yards he slowed. I pulled alongside him and asked him to get in. To my surprise he did so.

I'd tried to ring some friends before I had to run after Sam. Eventually Jane managed to get in touch with someone and let me know they had set off.

So I took Sam back - trying partly to keep Sam calm whilst also trying to impress on him the seriousness of what he had done.

He was calm until we got to the electricity pylons shaped like a cross where he became excited and irrational again. I was worried for a while but managed to get him back safely.

Once he was inside I rang Jane to find out how she was and to let her know Sam was back safely.

Friends had already arrived to support Jane so I could relax a little. Throughout all this I had been amazed how calm I had been. I had even reflected throughout this time how unemotional I had seemed.

It was only now that I started to cry.

We can take Sam out today - but for just two hours. It is raining. Where do we take him. If we bring him home it is half an hour to get home and half an hour to take him back. That will leave an hour at home - half of which will be taken up with arguing about why we have to take him back.

Any other suggestions?

We'd been away for a few days so phoned as soon as we got back to see how Sam had been.

"There have been no incidents."

That seems to be what they always say at the moment when we ask how Sam is. "No incidents." Is that all they are interested in? Is that all they think we are interested in?

Sam phoned yesterday aftnoon and I spoke with him for a while. He seemed very well. He was lucid and calm.

I raise the issue of the assualt again. I suggested how important it was to apologise - or to tell other staff how sorry he was at what had happened.

I wasn't able to understand much of hat he said about it other than his mind had been in difficulties then. He said she had asked to look at his nipple. I reminded Sam of how he often hears us say things that we have not said. I assumed he thought she was making sexual advances towards him. He has often fantasised about female nurses doing this. He is a young man in his late twneties who is very confused and has not had sex for many years.

I mentioned it to Jane after I put down the phone.

"But she would have said that to him," said Jane!

Jane had earlier had a conversation with her about Sam's weight and the fact that she thought Sam had enlarged nipples - a side-effect of the medication. The nurse was being conscientious and trying to do her job properly.

How Sam interpreted this request had clearly been another matter altogether.

It's felt very flat yesterday ...

What Sam did - how it has been interpreted - not knowing how right or wrong that interpretation may be - where we go from here ...

We didn't want to phone the ward again. We spoke with a nurse on the ward the night before. We gave her a bit of a hard time which was unfair. It's not all her fault. But it is all so unfair. So yesterday we remained quiet ...

Except that we knew that Sam's care coordinator and consultant psychiatrist were visiting Sam. We hoped he'd get back to us but he didn't. So Jane rang at the end of the day to leave a message on his mobile phone. He was at home but answered it. he is very good. We are lucky. But he had little in the way of ressurance - also we are not sure how mugh the ward tell him - there are rivalries an suspicions between different agencies. The ward staff like to hold the power. That is why we knew Sam had been moved before he did - only because I'd happened to ring at the time Sam was being moved. A friend of Sam's knew because he'd happened to ring the ward before Sam's care coordinator did. So much for the Care Programme Approach and joined up thinking. So much for working in teams and "New Ways of Working in Mental Health".

So much for any sense of humanity.

Even Sam's RMO - his consulatant on the ward - but from outside the hospital - wasn't consulted. We would make a complaint again - but each time we do it gets worse for Sam. It is as if they have won - but this is not a game. It is about what is best for Sam.

Where next ... ?

We heard on Sunday night that Sam had assaulted a member of staff. Jane rang to ask how Sam was. He hadn't wanted to return to the ward from his leave. Jane had found it hard to get him from the car into the hospital.

As she was leaving, Sam's named nurse came to find her and asked for a chat. That was great as we hadn't met her before. She and Jane had a really useful discussion - and looked at Sam's drugs chart which raised issues about PRN medication (as required - at the discretion of the nursing staff on duty.) The named nurse was equally concerned about these issues.

Jane rang back later though to ask how Sam was - given that he had been a bit difficult during the day with us on his leave and had been reluctant to return to the ward. She was told that after the meeting with Jane, Sam's nurse had asked Sam if she could weigh him - as Sam's weight gain was one of the issues Jane had raised. Jane was told that when the nurse had tried to weigh Sam he had become violent and had pushed her down onto a chair.

By the following morning this had turned into a sexual assault. Sam had pushed her on her chest - so now rather than being pushed down on to a chair the assault was now being described as one where he had touched her breasts. This may or may not be true but the original description did not sound like a sexual assault. However that is now how it has been written up in the notes and why Sam has been transferred back to the PICU. We are worried that this en route to a forensic ward.

What are they trying to do to him? Is there nobody there who is interested in his health and helping him get out of there as opposed to managing his behaviour and keeping him quiet. He is angry at being locked up. This allegation about sexual assault seems designed to find ways of confining him rather than helping him get better.

Sam was moved back to the Psychiatric Intensive Care Unit (PICU) again this morning.

I only found out when I rang to ask to visit to take him in some tobacco as he had forgotten it yesterday. I had been talking to Sam's care coordinator earlier in the day. He had heard in a message from the ward that Sam had assaulted a female member of staff but nobody had mentioned that he was to be moved. Sam's consultant psychiatrist was not consulted either. It just happened as an administrative convenience.

That is how he ended up in the PICU in the first place.

Jane phoned yesterday evening to find out how he was. Because Jane had asked about his weight they had tried to weigh him. Sam objected. So they gave him more tranquilisers.

They gave him more than he has been prescribed.

I am so angry again ... many of Sam's symptoms are the side-efects of the medication he is being prescribed rather than of his illness. What on earth do they think they are doing?

Sam has been home on leave yesterday and today.

When I arrived to pick him up yesterday he was asleep. I was a bit annoyed as I had rang to say what time I was picking him up but this was not unusual.

Today I rang again to say when I would arrive. Again he was asleep. This time the nurse said that they had tried to wake him several times but he would not get up. I was asked to wait in the visitors' centre. I waited for at least twenty minutes until Sam was brought, bleary eyed, dressed in shorts with no underpants and a fleece jacket wearing nothing underneath.

Both days were mixed. Sam was very unpredictable. At times he was fine but he could suddenly turn very belligerent.

Today in particular was different. He didn't want to go back. Who can blame him. Jane was able though to chat with his named nurse from the new ward for the first time. She asked to look at his drug chart. It seems he is being given a medication to "help him sleep".

There are staff on all night. Why is it a problem that he can't sleep but not a problem that he cannot waken?

Sam was moved to a new ward - an acute wad on Sunday. it all happened very quickly. he seem to settle well and his previous named nurse has been trying to ensure continuity.

However on the new ward we seem to have built no relationships yet. It all seems very impersonal and we've not heard from his named nurse. Trying to get information from them is hard.

One evening Sam phoned sounding very high and saying someone had shared a small amount of skunk cannabis with him in the garden. he may have been confused if he was feeling high - or he might have been feeling high because he had smoked cannabis. Who knows. We told the ward bit there is little they could do. We had forgotten this problem on acute wards. Sam has been in more structured accommodation for so long.

Sam has phoned a few times on evenings and seemed very confused - but he went out with a member of staff for the morning and did very, very well. We also had a good family meeting with him and his psychologist earlier in the week.

So perhaps it is settling down time. Sam often finds such change difficult. He even said as much to me on the phone earlier this evening.

Sam came home overnight last week. I picked him up about four in the afternoon. He was asleep in his room.

He was coming home for his first overnight leave in over a year and they let him sleep all afternoon. Are they trying to make it difficult for us????

We have a bloke called Carl who is helping us - we got to know him through a colleague of Jane's. He has had mental health difficulties and is trying to get work skills and back into the system. He is a very nice bloke and about Sam's age. Sam can't quite work out who he is or why he has befriended him but is usually pleased to see him. We arranged for Carl to stay the night. It was very helpful. During the evening Sam was at several times antagonistic towards us but could divert his antagonism by going off to so something with Carl. Without Carl being there it would have been much more difficult. Though with us having put so much effort in to making it work the ward will think everything is fine. Perhaps we should just let it all go wrong!

Sam didn't get to sleep until four o'clock in the morning so we were pretty knackered. He was also difficult to wake up - but we managed it and he went back quite calmly.

We had him home again for a few hours the following day. That went well too. It was a busy day and Sam coped with it all - even thrived on it. Again it was difficult at times but it went well. Getting him back was hard work but otherwise it was fine.

Dropping him off Jane had a conversation in the rain by the gate with Sam's named nurse. It wasn't easy to listen or concentrate in such an environment. It seems Sam may be moved to the acute ward very soon. As we thought - the overnight leave was just a stepping stone for them. They didn't debrief us properly about how it went but as there wasn't a disaster - they regard it as a success and something else to tick off.

Lets hope the move goes well. I'm sure Sam will be pleased. It is progress towards a less constrained situation.

We had a phone call from the ward - often a worry!!!

They've had a review meeting and decided that Sam would benefit from overnight leave ...

Oh!

Well. Yes. Of course. We'd love to have him home overnight.

But ...

They hadn't really asked us.

I think they are just ticking a box. The nurse phoned after the ward round - they want it to have taken place before the next ward round. I think then if it has gone well they will decide he can move on. If he is well enough to cope with overnight leave they will decide he is well enough to move to a less intensive ward. However the test isn't so much about whether Sam is well enough to cope with overnight leave - it is whether we are well enough to cope with overnight leave.

Nell is coming home for the weekend so will be here - and we've just arranged for another friend who has been supporting Sam recently to stay over. So there is lots of cover. I wonder if they have any idea ... ?