'schizophrenia'

- a carer's journal

Jane and I both woke with colds yesterday morning.

Sam was complaining of a cold at the weekend so I guess we have caught it from him.

We visited him on the ward for a family meeting with his psychologist and care co-ordinator. Sam didn't want to get out of bed. He was full of cold. So we left him and chatted. If it is a family meeting then I suppose that is for us as well?

When I picked Sam up the nurse in charge queried that there was just me and not both me and Jane to collect Sam. he said the section 17 leave specified both of us. I'm sure that isn't right. We usually just have one of us to pick him up. Why need three of us together in the car? Eventually he was placated and we set off. Sam myself and a female nurse I hadn't met before. She didn't say much and I chatted more with Sam than her in the car.

When we got home Sam wanted a cigarette straight away as is usually the case. Normally the member of staff sits outside with me and Sam. But she took herself in to the warm and sat there. We had a cup of tea and then Sam wanted another cigarette. So I went out with him again. When we came back in she was asleep on the sofa.

It was good that Sam hadn't needed more support than just me at that time.

I don't think she engaged with Sam at all all the time we were out. I know sometimes it can be good to merge into the background so that the family can get on together but she blended well enough to be invisible - until the chocolate biscuits came out! I now I said, "Help yourself" - but really ...

She was struggling to keep up on a short incline when we went for a walk. Then back at the house she sat there painting her fingernails.

To cap it all - when they got back to the hospital driven by Jane, searching for her fob to operate the locks to get back in, she managed to set off her personal alarm screeching loudly in the car. Jane was not amused!

Especially as when chatting with Jane she had earlier said,

"I like an easy life me."

I rang on Saturday morning to make arrangements for some leave this afternoon. I was told Sam had been awake all night - so it all depended on whether he was still awake and what he was like then.

I rang again half an hour before the agreed time - he was still awake and someone would come out with him.

So I picked him up and he seemed reasonable. We had quite a pleasant time. I'd bought him some new clothes as an Easter present rather than just the chocolate - his clothes all seem to disappear into the wash on the ward and he just wears what is left over. They fit and he seemed pleased with them.

We went for a walk past some rocks where he used to climb. Of course he had to have a go - getting his new clothes dirty! I was worried as he started to go too high but came back down when asked. We went on to see my mum and dad. They were pleased as it was a while since they had seen Sam.

It was going fine but he seemed a little distracted and insisted on going outside for a cigarette. I and the nurse went with him. He was fine at first but started to become distracted and a little argumentative. He started to walk around then went a bit further from the door. I could tell something was up and said as much to the nurse - then Sam was off running.

Not fast and determined as if he had a purpose and was trying to escape - but in a rather distracted and purposeless way - just needing to be away from us. The nurse was speedier than me and Sam came back with him. He didn't want to go back inside the house but I managed to persuade him into my dad's car and we took him back to the ward. On the way in he started swinging on the awning and being a little argumentative - but he made no attempt to escape. He'd lost his tobacco so I went to buy him some more.

Jane went on to the ward with him. He soon calmed and said himself that he didn't understand what had happened.

We were worried they might not allow him leave today but Jane managed to persuade the nurse in charge this morning. I'm going to pick him up in a minute. Fingers crossed!

I rang on Saturday to see how Sam was and to make arrangements to take him out. I had difficulties getting through - and then they were going to ring me back. Eventually someone came on and said that Sam hadn't gone to bed until 3.45 in the morning, had got up early and had just gone back to sleep. I could visit him at 4.00.

When I arrived at 4.00 - unable at first to get into the hospital as the intercom on the door was broken as was the phone on Sam's ward - I was told he was still asleep but they were sure he would get up for me.

He did but was sleepy and more interested in getting a cigarette than meeting with me.

He woke gradually during the hour and we chatted. Then it was time for another cigarette break before tea and I left.

Sam rang me late as I was going to bed, then again at 2.30 in the morning, yet again at 7.30 in the morning. He hadn't slept. It didn't sound like good news regarding going out later in the day. I spoke to the nurse in charge when Sam phoned at 7.30. She described him as very manic but he sounded calm when we spoke.

I rang again after lunch to see how he was and what might be arranged. He'd got up for lunch and they said he would stay up if he knew I was coming - but there was no member of staff to come out with us.

So I visited again with the same problems again of getting in. Soon after I arrived there was a cigarette break. Sam asked me to come out with him. I had to promise the nurse in charge that I appreciated the danger and absolved her of any responsibility before I was allowed out. Half a dozen young men, a female nursing assistant, Sam and I went through the locked doors and downstairs out into the small yard surrounded by a ten foot high wire fence. They queued to light their cigarettes from the lighter built in to the outside wall then stood apart smoking their cigarettes.

They smoked the cigarettes quickly and huddled back inside the door waiting for the nursing assistant to come and open the other doors. Sam sat and leisurely finished his cigarette. As soon as it was finished we were rushed back inside. We had been outside for barely five minutes. This, once an hour, is the only outside exercise that Sam gets when we do not take him out. Nobody else seems to think there is a problem with this.

The other quiet, withdrawn young men didn't look ill as much as institutionalised.

Sam and I spent another hour until the next cigarette break in a room together chatting. Sam was tired and a lot of the time was me trying to keep him awake. perhaps if he stayed awake until the next meal time and a bit longer then he might sleep later that night. Our conversation slipped in and out of silence, nonsense and some genuine insight. He talked of evil and suicide and killing for a brief period - but then that was gone as soon as it had arrived. It is always worrying when he talks like that though.

Then I left. Leaving Sam to cope with another night on the ward while I could go home.

When we were with Sam on Wednesday - I just wanted to give him a hug.

There seemed nothing more I could do.

Then as I left he gave me a hug.

I felt so positive that the meeting had gone well and he had improved during the time we were there.

That evening he phoned. All he could do was laugh ....

I woke this morning with aches an pains in my muscles again. They are always there a bit, especially in the morning, but this morning seemed more severe than usual. I also felt rather down. There seemed no reason for this but I found myself short tempered and without any patience. What was this all about? I've been so much better recently.

In the afternoon we had another of our family meetings on the ward with Sam and some of his professionals. I can't think I had been worried about that. Perhaps I was remembering the last meeting I'd had on the ward with the ward manager and consultant psychiatrist following the incident last week.

Sam seemed quite unwell. He refused to recognise me at first. I was a little shocked. The weekend had gone so well. But he had phoned on Tuesday morning saying he hadn't slept all night. His psychologist had taken him out that day and had a difficult time with him - worrying he might run away at one time.

We heard that he had been given Lorazipam as prn last night. So clearly he had been unwell then too.

But he had been so well at the weekend. What had gone wrong?

Sam kept walking in and out of the room. e would stop for a few moments and then walk off again saying he needed a cigarette - but he would not be allowed out for a cigarette break for at least half an hour. Occasionally he would tease us by starting a few lines of a conversation before walking up and down the corridor again.

In the end his stays in the room became longer. After his cigarette he sat down and started talking. We had a reasonable discussion though some of what he was saying was hard to understand. He would occasionally stand up and wander around the room or go down the corridor again in case there might be a cigarette break or get himself a cup of tea. But the longer it went on the longer he stayed in the room. It was as if he wanted to be there and appreciated the opportunity to talk with us all about things important to him. By the end he was confident and articulate.

As we left the young man who claimed he didn't know who I was as I arrived gave me a hug and said his farewells in a smiling, sensible and happy way. He was transformed from the very ill young man we had met a couple of hours earlier.

We've only had a couple of these family meetings but they seem to have gone well. I'm very hopeful for them.

And guess what?

Afterwards I felt much better.

We took Sam out twice at the weekend with a member of staff. It poured with rain on Saturday when we got out and we ended up in a cafe. But this was good. Sam was again modelling social behavior - sat round a table chatting over a cup of tea.

On Sunday it turned into a pleasant if slightly blustery afternoon. It was an enjoyable walk followed by another cup of tea sat outside a cafe in the country park.

The more this works successfully the more staff can see that Sam can make progress. It argues strongly against the long list of misdemeanours that his named nurse had been going through at the CPA meeting last week.

A member of staff took Sam out to the shop on Friday. I think the tide may be turning.

Later on Wednesday ...

I was drained from the mornings meeting and from trying to feed back to Jane whose mobile phone kept cutting out while on the train.

Then I got another call from the RMO (psychiatrist). He'd asked a colleague to see Sam and give a second opinion. Fine I said. He described this colleague's approach very positively. Then he described this colleagues diagnosis. I recognised him then straight away. He has become notorious in the area for diagnosing many patients on the ward in the same idiosyncratic and very unusual way. So guess what? Yes - he diagnosed Sam in just the same way which is clearly nonsense. I hit the roof and he backtracked quickly.

I then managed a proper phone conversation with Jane and went through it all over again. (The next day she was talking with another psychiatrist about this at an event. She was asked if it was a private hospital - which it is. Jane was told that a psychiatrist had been struck off for something similar in a different part of the country. I just wonder if drugs companies are doing secret trials using a well known medication and trialling it on schizophrenia under the guise of this unusual diagnosis.)

By the end of the afternoon I was totally exhausted, both physically and emotionally. In the evening I found myself close to tears listening to "The Archers" (a radio soap opera) and also an emotional afternoon radio play the next afternoon.

I went to the meeting on Wednesday about Sam having been pinned down. I felt quite confident at my ability to go. There was a time when I would have been in a total panic at the idea - so it is a measure of the improvements in my own confidence and mental health recently.

Though when I got there I started to wobble. At the start of the meeting I explained that I might get emotional because of my own health problems - partly caused by Sam's. But once we got going I was on a roll. Perhaps too much so! Maybe I became over-assertive. (Is that code for angry? - I hope not!)

I was pleased when I found I was meeting with the ward manager as well as the RMO (Psychiatrist). It is the ward manager who is responsible for the actions of the staff - though the RMO might be responsible for the prescribing of the additional medication, from the phone information provided by ward staff.

I was treated properly. The situation was described to me clearly. My concerns were listened to.

I made my points strongly. That we were worried that the escalation recently wasn't to do with Sam's state of health but to do with staff's attitude to Sam.

I picked the ward manager up on some of the language she used - pointing out that it was more to do with control than care. She didn't like that. She is more enlightened than most - but the language reflects underlying attitudes. There are few nurses who do not fall into the use of this language. It is the norm. It takes a conscious effort to move in to the language of care and respect for patients. It should not be the case for nurses.

I think we parted on good terms. I hope so. We want to be able to continue to work in partnership with them and I hope I made that clear as well as raising some other points.

We were worried they wanted to be rid of Sam. They tried to reassure them that was not the case. I assured them we were not keen to move Sam because despite my criticisms during the meeting there are some very good staff there with good attitudes. Continuity is important.

Sam phoned this afternoon.

He unded very well. Articulate and expressing himself calmly and logically.

He explained how last night he had been imagining himself playing when a child at his grandma's house. He'd been dressing up. He'd put a sheet over himself to dress up on the ward.

Then he explained he'd been pinned down and by two men he didn't know and injected. He slept afterwards and was fine this morning but his arms hurt where he had been held.

Jane phoned the ward and spoke to the nurse in charge. She said Sam had been very lively in the evening and had refused to go to bed. (When Jen phoned yesterday afternoon she was told that Sam was asleep after having been out with his psychologist from the Assertive Outreach Team.) She put it that he wasn't "complying with ward policies" relating to bed time. He was running up and down the coridoor. Doors to all shared rooms are locked at night so there was nowhere else for him to go. He accepted some Lorazepam but continued to be lively. So he was "held down" and injected with more Lorazepam.

I don't know all the details yet but I believe there was more they could have done to settle Sam.

We were hoping to speak to the ward manager but eventually the Psychiatrist phoned. He has arranged a meeting with me tomorrow - Jane is working. He is also talking of changing Sam's medication to an older one which possibly has more side-effects.

Towards the end of Sam's visit Jen chatted with the member of staff acompanying Sam.

He admitted he felt out of place and said he couldn't see any need for a staff escort. So he would be feeding that view back.

I wonder if it will make any difference?

We took Sam out again yesterday.

The nurse had come out with us the week before last. He is very dour, quite reticent, more than restrained. I think he felt uncomfortable - as if he were intruding somehow. That's understandable beause in a way he is. But we always try to involve the staff as part of the experience. It's just daft them walking near by pretending not to be there. It is also a good chance for them to see what Sam is like off the ward - how he interacts with his family and in an outdoor situation.

Sam wasn't brilliant but he did well. He was having some ordinary conversations. We wet to an area where he used to like climbing and bouldering. He started talking with a climber about a route - is it a 5C asked Sam? The climber looked it up in his book. No - a 5B. Not far out. Sam pointed out the difficult bit at the top. The climber thanked him. Then we went on. Normal social intercourse. You don't get to practice that in the same way on a psychiatric ward whatever therapies they put in place.

Then we went home for a while - drank tea - smoked cigarettes - listened to music - while Sam lounged comfortably on the sofa.

Towards the end Sam asked if he had to go back. He was really lucid - just talked of how awful it was for him. The nurse just had to sit and and listen without comment.

And then we went back.

I'm still upset about what Sam said yesterday.

It is bad enough that they don't want him on the ward - that they think he is too much trouble. It is supposed to be a "complex needs" ward but his named nurse said they cannot deal with him because he has complex needs. They don't want to do the job they are being paid for. It makes me mad.

But then ...

For Sam to pick up that he is not wanted there. That is unforgivable.

Where to go next ... ?