'schizophrenia'

- a carer's journal

On Wednesday Sam phoned three times. He was very difficult to make sense of. He was talking of hearing sounds, being enlightened, his need for me to understand him when he was making little sense. It was difficult.

We were away for a few days then when we returned late and tired yesterday evening rang the ward to see how he was and to arrange to take him out today.

We were able to speak with Sam again. If anything he seemed more confused and manic. He was threatening death again.

Jane asked the nurse how he had been.

"Oh, very well."

"Very well?"

"Yes, no incidents."

It seems, as in many places, that as long as he doesn't cause any trouble they are happy and think he's fine - however psychotic he may be.

I think taking him out today could be difficult - but perhaps the space and outdoors might help.

When we dropped Sam back on Sunday he'd been a little manic on returning. It seems that this continued on the ward for a while. He annoyed another patient. That patient assaulted Sam.

Sam knows this patient well. It is the third ward they have been on together. A few years ago though he beat Sam quite badly so he needed medical treatment and the police were involved. This time was not so serious fortunately.

I was tired after taking Sam out on Saturday then woke in the morning feeling rotten. I ached and could feel my ME symptoms returning which made me depressed.

We had a rush of visitors before lunch but it helped me feel better I think. We were in a rush then to pick Sam up after lunch. We went to an old Hall not to far from where Sam's hospital is. There are extensive grounds and trails to walk along. Sam had been there before from his previous ward. He had been taken there as part of his rehabilitation - helping out with conservation work.

Sam remembered it and found a small pond hidden away where we sat quietly together for a while. There was a shop where we encouraged Sam to buy a card and present for Nell's birthday. We went for a walk and he tried to explain a bit about the hedge-laying he had done having looked together at a hedge. Then we went to the cafe and sat outside for a cup of tea. After that we had a stroll round the garden before we drove back. We all seemed to have enjoyed it. It was relaxing and fun.

In the car though Sam became quite excitable and a little manic. The day before he had become a little more strange just before he was due back. I suppose the stress of returning to his incarceration got to him. These walks this weekend were the first time he had been outside for so long for a couple of months. When we got back to the hospital we had to sit in reception for a while until someone came down from the ward to collect him. He just sat there and didn't want to go. It's hard because if he balks at returning they are less likely to let him out regularly. But it is a measure of still having some spirit that he doesn't want to go back there.

We took Sam out for a walk today - Jane and I.

It was his first time out though since we took him out last weekend. I'm sure when the psychiatrist writes up leave he expects it to happen. I wonder how many of them actually ask how often patients are really taken out?

We'll take Sam out again tomorrow. I wonder if the next time after that when he goes out will be when we take him again?

Jane managed to get to the ward round meeting to discuss more leave for Sam.

She chatted with Sam for a while first and he seemed able to concentrate. He later talked almost rationally at the meeting - to which he wouldn't have been invited if Jane hadn't invited him in. It demonstrated to the psychiatrist how much better he was than the last time he's seen him.

To be fair the psychiatriest was very positive and eager to listen.

The bottom line is that we think we've got up to two hours three times a week accompanied leave with Sam.

We took Sam out for a walk today - with two staff walking two paces behind!

When we first arrived on the ward I wasn't sure it was a good idea. sam seemed very high - as if he was on drugs. The pupils of his eyes were huge and he met us with such excitement.

As details were arranged he calmed down a bit - though I was tempted to point his state out to staff who seemed totally unaware. perhaps he's like this with them most of the time.

When we got outside he strode ahead as we struggled to keep up. We had only half an hour so perhaps speed was of the essence. We had been told there was a patch of grass a few hundred yards down the road. There was a seat there to sit. We crossed the road and found it.

Sam stood in the middle of the small field - a soccer pitch - and stretched and breathed in the air and looked at the views all around. it was on high ground and ahead were views across to hills and moorland. He suddenly seemed more relaxed.

We walked cross the soccer pitch to find a style on the far corner. Over it was a path leading to some woods.

Sam strode on. It was lovely in the woods. A bit like the countryside nearer home. The staff commented to each other how they could take others on that walk - previously unknown to them but discovered by us on our first trip out from there!

Soon we had to turn round but did so in a circuitous route that required a scramble. But all went well.

Then Sam asked to chat with me and we sat on the bench by the soccer pitch and he chatted to me seriously about things that were important to him but would have seemd nonsense to most people. I listened and tried to make sensible replies. he was out of tobacco so we bought some cigarettes from a shop we passed on the way back.

He was calm and himself again now. His eyes and demeanot was normal. The walk had done it's trick. the staff with us could see that. We were long past the half hour but they prolonged it outside the door as they could see how much help it was for Sam.

Then we said our goodbyes and went shopping.

Well - he got his leave today.

And we got a phone call to tell us about it. So that's an improvement in communications.

He didn't run off so it is seen as a success.

To be repeated we hope.

Jane phoned the ward to try and sort out about getting some leave for Sam.

After several long conversations and calls back it seems that Sam will be allowed three half hour sessions a week accompanied by two members of staff.

That is assuming there are two members of staff available. Today there were only "bank" staff on so he couldn't go. Tomorrow he will be taken into the grounds (i.e. the car park!) If he doesn't run for it they may take him to a small patch of grass down the road.

Organising this took so much time and energy. It shouldn't be down to us anyway.

We're trying to have a planning meeting organise as it is not clear if there is any medium/long term plan. it's as if he has been just left there and forgotten.

Yesterday we visited Sam.

Of course we had to wait for ages in reception after we were finally allowed in. There is nobody on reception at the weekend so the nearest ward answers the intercom from the door. Except of course that the intercom was not working. Someone must have seen us through the video camera looking slightly more mad than the patients. Then we were instructed to sit down while Sam's ward was contacted - another ten minute wait.

When we got to see Sam he was hiding under a cap with a wooly hat on top again. However we had brought him a French climbing magazine. This immediately caught his attention and brought him to life. He flipped through the photographs and talked with us about them. Then he rushed off to get two more magazines from his room to illustrate some of the points he was trying to make. It didn't all make sense but he was focssing on something outside what was going on in his head in a lively and articulate way.

Then he said, "Can I show you some of my art work?"

"Please!"

So he rushed off and came back with a pile of pastel drawings that he was eager to talk with us about.

In a while he went outside for a cigarette - they are allowed outside once an hour for a cigarette. He wanted us to come with him but that wasn't allowed.

When he came back his mood had changed a little. He found it harder to concentrate and his conversation was more confrontational and made less sense.

He'd concentrated for a good time so we decided it was time to go.

I counted the locks again.

There are definately seven.

On the way back through France we stopped in a cathedral town. It was a famous cathedral ad we visited it. By the door was a scruffily dressed man sat on the steps. He was talking to mimself his fingers shuffling around. beside him was a bag, a multi-pack of supermarket brand beer, a bottle opener, a pear, a radio playing and an empty cap.

As we left Jane was upset at this por mad man being ignored by everyone in this symbol of power and charity.

Later that evening we passed another church as a beggar stood straight and proud by the door with one hand behind his back, the other cupped in front of him, empty it seemed, as well dressed worshipers came out from Mass. There seemed little charity there either. Later we saw him with a small group of homeless men with bottles and cans of drink.

Sam has a fascination with living on the streets. Before - or perhaps when - he first became ill he would wander the streets at night and seek them out. He isn't at all streetwise though. The times he has been on the streets he has had all his few belongings taken.

Yesterday Jane went to the ward round as arranged to discus possible leave for Sam. She got there early to chat with Sam first. But the ward round had taken place this morning as the doctor had a legal hearing in the afternoon. It was known Jane wanted to attend and could have gone this morning if they had contacted her. It was decided that leave would be decided when we were all there. We could have been today if we had been informed. So Sam remains incarcerated with no real outdoor exercise.

Sam seemed a lot better today than yesterday and Jane had a long conversation with him. She even managed to raise some serious issues with him that would have been impossible yesterday.

Sam made her a cup of tea and remembered she liked it weak. It's good when he can focus on other people rather than just what is happening in his own mind.

We stopped off to see Sam on the way back home yesterday. He was quiet, withdrawn. He was wearing thick jumpers with a jacket covered by a padded coat. On his head he had a woolen hat on top of a peaked cap.

He came out of himself a little while we were there but not a lot.

He looked so pale and drawn.

He hasn't been out except into the courtyard for a cigarette for over five weeks.

We talked about trying to get him some leave and meeting with the doctor at the ward round the following day.

We set off home to unpack feeling rather down.

Later Sam phoned. His psychologist had visited. He'd done some meditation. Now he felt better. So could he pack his bags and come home with us tomorrow please?

He still doesn't get it.

Jane asked him if he'd eaten all the chocolate we'd left him.

"No. I gave it to the aliens.

"Are there a lot of aliens?"

"No - just one in my room."

"Has he eaten all the chocolate?"

Sam chuckled, "No there's some left."