'schizophrenia'

- a carer's journal

At breakfast on two mornings when we were away last weekend we were with the same family. On the second morning they shared with us the fact that they were carers. They had started out giving respite for families with children who had learning difficulties. This had then expanded.

Now they were caring full time for a young adult with severe learning difficulties. Of course they had their brushes too with bureaucracy. How can so many obstacles be put in the way of such caring people? The professionals so often seem to have no empathy with those who carry out the care on a day to day basis. I was so moved by the difficulties this very sensible couple had with the system.

They were away for the weekend as a present from the parents of another young person they had cared for.

At least somebody appreciated them.

The weekend before we went away was just after the decision that leave was cancelled with us. I'd managed to persuade them to keep the facility for Sam to have leave with ward staff and with Assertive Outreach - that this leave shouldn't be changed. I emphasised the problem seemed to be between Sam and us and that was accepted. They like to blame us!

But I didn't expect that ward staff would take Sam out. It had happened rarely in the past and they are so risk averse. But we discovered that they did take Sam out at the weekend and have done a couple more times since. One of the nurses seems keen to get Sam out. Perhaps if we are not able to take Sam out that is encouraging some of the staff who realise he needs to experience the outdoors.

We've just had a well earned weekend away in a European city. Jane has been working very hard recently and it is good to get away from the worries for a short while.

The first evening we found ourself eating a meal outside a tourist restaurant and got chatting with the people near by. It was only just before they were about to leave that conversation turned to families ...

So Sam got mentioned. The faces of the couple opposite clouded. They had a son detained in hospital with mental health problems too. This was their chance also to get away from it all for the weekend.

There was suddenly a deeper connection. There was an empathy. We each could recognise what the others had been going through. I could see an anguish in their faces that probably reflected that in ours. We wanted to hug each other. But being British we managed with handshakes and looks that meant so very much.

Yesterday we were chatting with a lovely four year old boy. He had decided that it must all be his fault. He must have put all those nasty voices in him mum's head. Otherwise how could they have got there?

I think we reassured him in the end. The logic of it was strange as he has so many magical places he visits as part of his childs view of the world.

Just like adults diagnosed as psychotic really.

This morning we had a phone call from a friend who lives near by. She had come to this area to escape what she felt was the awful mental health system in another large city.

Her daughter has had mental health problems for a long time and has been hospitalised on many occasions - but the daughter has a four year old son which complicates it too. I think they came here because they were frightened of the child being taken into Local Authority care.

For the last couple of years things have been going quite well. But this morning the daughter had a relapse. She was hearing her mum say hurtful things in her head and attacked her violently in front of her child. Later she was also angry with the child. Her mum phoned us for help and advice. Of course there are no emergency services at the weekend other than calling the police or going to the local hospital Accident and Emergency services. We went round to her house and our presence helped to calm the situation. The daughter agreed to go to her flat which she rarely uses and to leave her son staying with his gran.

Our friend was relieved and very thankful though we did little. I found it moving and upsetting. We understand because Sam can behave in such ways but I find it hard to cope with the emotional intensity of it I think - and the reminders of Sam's illness. Her emotional thanks to us reminded me of becoming similarly emotional at the kindness of others.

I suppose though it was good to be a "helper" rather than a "helped" for a change - even if I found it just as draining!

I went to ward round yesterday as arranged t three o'clock. Ward round would take place at three thirty I was then told.

I was shown in to a room and Sam was brought to me. We chatted a bit. He found it hard to stay on the same subject. He kept giggling. He couldn't answer questions.

Then suddenly they appeared. The consultant psychiatrist, his ward doctor and Sam's new named nurse.

I talked of what had happened on Friday and how it had come about. I tried to involve Sam but he couldn't keep on the subject. his answers were about something totally different. he ended up only able to giggle and not talk at all. He kept leaving and returning. This is how the doctors see him. They don't see how well he can be at times when out with us. I tried to say some of this but all I got back was negativity.

We think Sam has been better for the last few weeks but the named nurse was so very negative. They had seen no improvement, she said. His inappropriate sexual behaviour had increased. He would not join in with activities. They were a rehabilitation ward and could not meet his needs. They thought the family work and psychological therapy was counter productive as he was not ready for it.

I had to walk away in the middle of writing this - I was so angry reminding myself of her negativity.

The psychiatrist stepped in and pointed out that Sam's clinical psychologist had experience of working with patients with Sam's level of illness. In the main I found him supportive - but they were trying to put it back into my court as to what happens next. They seem to have given up.

I was angry and firm but got nowhere. I pointed out that the ward was advertised as for "complex needs" patients and that all wards should be rehabilitation wards.

He will get no more leave with us for the moment - not even with staff accompanying us. The named nurse made it clear that many staff felt it was unsafe to take Sam out and it shouldn't be down to who happens to be on duty. So he is clearly unlikely to be taken out by staff on their own. However members of the Assertive Outreach team can still take him out - as long as the ward staff agree. So that could still be an issue.

The consultant psychiatrist showed me out past the seven locked doors. He is trying to be human and reasonable. There are few psychiatrists who would lower themselves to do so - even most of the nurses always try to get an ancillary staff to show us out as they see it as beneath them.

At the end I was drained. I slept soundly and had difficulty wakening this morning. When I did my aches and pains had returned.

What happened on Friday just takes us back to square one with Sam's leave.

We had been fighting so long to get his leave back after the events before Christmas. At last we got leave with him on our own again and ...

it all goes wrong.

So what next?

Did Sam not realise the effect his actions would have? I believe not. He had certain imperatives going through his mind and just acted upon them. If he had been susceptible to reason then he wouldn't have gone off.

But his actions had a huge impact on so many other people. He came back safely of his own volition - but after so much trouble for so many people. If we don't recognise this as well then the professionals will think we are living in cloud cuckoo land.

However it is still the case that keeping Sam locked on a corridor with only short cigarette breaks in an outdoor cage as outdoor experience contributes to his mental illness. So where do we go from here?

I spoke with Sam's psychologist from the Assertive Outreach team today. He wants to keep taking Sam out. I'm going to ward round tomorrow so I can pass on his views.

Nobody on the ward has asked us what actually happened on Friday. I am only involved in discussions about his leave at ward round tomorrow because I "suggested" it might be helpful for me to be there. Perhaps they see it as so clear cut without even needing to know what happened.

On Friday walking through the woods the bluebells looked beautiful. They really did carpet the floor. I've never seen so much blue in a woodland. There was a strong scent from them too. It would have been a lovely experience if I had not been worried about Sam.

We'd gone to a beauty spot for a picnic. Sam seemed really well again. Everything was going fine at first. It was great for him to be able to stroll off on his own a little way where we could see him and sit quietly having a cigarette watching the river slip past and the ducks swimming.

Then after the picnic he was chatting with me as we stood on the rocks on the edge of the river. Without warning he suddenly started being antagonistic towards me. He seemed angry with me, annoyed. Then he started asking me the same question over and over. "What was mum doing when I was at university?" Over and over. No answer satisfied him. He got angry that I could not tell him what he wanted to know. He knew things had gone wrong for him at that time. It was when he became ill. He was blaming his mum in some way. Over and over he asked the question.

"What was mum doing when I was at university?"

What was the right answer? What did he want me to say? He was getting more and more angry. This was important to him. He was angry with me for not answering him. I tried to move him back towards the car. I signalled to Jane that we needed to go quickly. We tried to entice him into the car. But he just glared at us.

Then he set off. He walked at first, determined. As we followed he set a faster pace across the grass, up a bank and towards the road. I went back for the car as Jane followed. But he was soon across the road and running across a field towards some woods in the distance. He soon outpaced us.

He was gone. Out of sight.

We tried to find a way to the other side of the wood by car but weren't sure of the layout. We went to one of the information centres. It is art of a large estate. In a short while we were in two four wheel drive trucks with staff from the estate heading towards the woods, another truck going round to the other side.

I think that was when the tears first came, though I was soon able to hide them. It wasn't that I was frightened for Sam - or even the worry of how this would put back again all the work we had been doing to get him more leave. No - it was just this act of kindness by the estate staff in taking it all so seriously and wanting to help us find Sam.

I was walking through the woods with one of the foresters. Jane was with the visitor manager. They were both great and very supportive. The young woman with Jane had no experience of mental illness but was able to empathise immediately with Jane and with Sam. If only we could get a farmhouse out there, she said. It was such a close community. If Sam went missing people would look out for him. What she was suggesting was like what we had tried to set up in France three years ago.

Soon we had searched all the woods. He wasn't there. No sign of him. We'd looked across the fields on the other side of the woods and no sign. The guy in the other truck said he'd head over that way in the truck just in case. The woman with Jane could see that the sheep had not been disturbed so doubted he'd head in that direction.

We knew it was time to phone the police. We'd done our best to find him. He is legally detained. He was in breach of his section. It was a legal thing as well as a safety one.

So soon we were sat in a meeting room at the estate office filling out a 20 page booklet of information to the police constable most of which was information I'd already provided on the phone. They had a "farm watch" scheme though and all local farmers had already been circulated with his description as had 40 estate workers. There was talk of getting the police helicopter out and dogs being brought from the other side of the county. A police sergeant also joined us for a while. They were taking it all very seriously.

Sam can have no idea of the amount of disruption he causes.

When it happens in the city we often feel it is just logged but little action is taken. Here in a rural community the response was so different.

I began to feel guilty myself for being part of setting all this off. There will come a stage where people will think that Sam getting some leave from hospital and the contribution of this to his mental health is not worth all the problems that result when he goes off like this.

We could hear comments on the police radio of all that was going on as we finished completing the forms. Then we decided to walk back to where we had been with Sam - just in case he had decided to return. The scenery was still as beautiful as before and it helped to calm us as we discussed it all. I noticed a police car going in the same direction. Perhaps looking for Sam.

Then we got two phone calls. Sam had been found safely. He was with the policeman back at the estate office.

We struggled back up the hill to find him. The police car we had seen had been going to pick up Sam. He had gone back to where we had the picnic. We weren't there so he found some staff and announced, "My name's Sam. I'm a schizophrenic."

He always denies that he is a "schizophrenic" - except for when it gets him a lift home.

I think what happened on Wednesday had an impact on yesterday's events.

We'd had one of our regular family meetings with Sam his psychologist, nurse and care coordinator. Sam was really well and contributed must better than previously. Usually he keeps wandering out at first and then returns, the length of time he stays in the room growing each time. On Wednesday he stayed throughout. But about half way through he started to give Jane a hard time. He went on and on about a time she had been unwell and the pressure that put on him. He was so articulate during this part - more so than at any other time during the meeting.

There is clearly lots here that it is good to explore in a supported atmosphere. There was nothing Sam hasn't said to us before but it was good he felt able to discuss it in that context.

But he has a confusion and ambivalence towards us. He is searching too for a reason he is incarcerated and at times we get the blame - "why did you lock me up .. ?" - everything was alright from his point of view until then. Not that we did lock him up.

So we think it is good that in the family meetings these things can be raised. But I suppose we also need to recognise it might have consequences. As happened yesterday.

The bluebells carpeting the woods looked so beautiful today I could appreciate their beauty though my tears.

I'll explain soon ...

I was anxious yesterday about Sam coming home. I was looking forward to seeing him and him coming home very much. But I was still anxious.

It was the first time since before Christmas that he had been home without an escort. We'd argued strongly that we didn't need an escort. Many of the escorts had said that they were not needed. But ...

I suppose it had built in to a kind of support that I had come to rely on. It wasn't the practical things - as many of them did very little. No, it was being able to give up some of the responsibility. If something went wrong then it wasn't wholly my fault. I know it wasn't anyway - but I tend to take such responsibilities on and worry about what might go wrong.

So yesterday morning I suppose all that was affecting my emotions even though I wasn't articulating it in my thoughts.

Sam didn't help when we picked him up. After less than a minute in the car he announced,

"I don't want to go back."

I know he doesn't.

But might he be determined enough today without an escort to run off or just refuse to go back? So I started worrying again - even more.

It was a warm and bright day. We picked Sam up before lunch and had a calm time in the garden just chatting and smoking, kicking a ball around and just being together. Sam decided he was hungry so we had lunch. He listened to some music inside - but needed to smoke a lot. On the ward he is allowed out just once an hour for a cigarette. So at home he makes the most of his freedom to smoke. We'd planned to go for a walk after lunch but Sam seemed happy in the garden or inside just chatting. The chatting was sometimes difficult with complex thoughts that didn't follow on so one was never sure what we were talking about.

Then Sam started to become more agitated. He became confrontational and aggressive with me. I withdrew and Jane tried to calm him with some music. He was very unpredictable and we were now both worried about taking him out. Jane came up with the great idea of going for a drive. Sam often likes this. We drove to one of his favourite places through attractive countryside before returning to the hospital.

He calmed in the car and Jane and I both thought of the similarities of when he was a baby and we quietened his crying through drives in the car - and even as he got older he would sleep in the car on long journeys. Interestingly Sam's care coordinator often takes him out for a drive.

So we got him back safely.

It turned out that Sam had hardly slept the night before.

His medication was reduced very slightly after the CPA meeting on Wednesday. We think this is a good thing but others seem unaware of the effects even small reductions can have on Sam and how long it can take to get over. To them it seems such a small change and inconsequential but we know how such things affect Sam. I'm sure that is one of the causes of his sleeplessness and mental state on Saturday and will last for some weeks. They will assure us that any effects will be a few days at most.

Watch this space ...