'schizophrenia'

- a carer's journal

There was a moving article in the Guardian earlier this wek about a young man who could so easily have been Sam ...


"We couldn't just turn him away"

On Sunday morning Jane and I discussed Christmas and how that will work out with Sam.

We haven't even got a few hours leave again yet, never mind a weekend or even longer over Christmas. Then there are the complications fitting in my elderly parents, the visit from my brother and young family from abroad and my sister. It's also the first time for three years that Nell has been home with us at Christmas.

Planning for it seems so hard and is making me anxious and irritable with Jane.

I visited Sam in the afternoon and I was dreading it a bit as I had become so anxious - but he was quite well again and we had a nice chat. So it still seems positive for us to ask for his leave to be reinstated.

Jane visited Sam on Saturday.

She was so thrilled with how well he was that she got him to phone me and talk with me so I could hear him.

"Would you like a drink mum?"

He even managed his social skills as well.

These windows of sanity keep bringing hope.

I saw Sam on Tuesday. I'd had a call on Monday to say he had run out of tobacco even though Jane had been there the day before and nobody thought to say to her.

When I arrived on the ward there was just a crowd of anxious young men hanging about in the corridor waiting for the time when they would be allowed out for a cigarette. It was the only topic of conversation. I assumed the time was imminent but it was half an hour before it took place - the in between time taken up by patients banging on the office door asking if it was time yet.

Sam was agitated by the need for a cigarette and by the demeanour of the other patients.

A young female student nurse stood by worried that she was about to be sent out alone with them. Her voice sounded frail and frightened when she said to the nurse in charge that she wasn't supposed to - but a burly staff nurse eventually took them off with her in tow.

So that was the end of my visit. Now is there anyone else left who can let me out through the seven locked doors ... ?

We'd been busy today with other things.

But Jane visited Sam in the afternoon whilst I held the fort.

Suddenly he wanted to talk about issues just before he became ill.

"Why did you hate me then ... ?"

The fact that such a conversation could take place seemed progress currently.

Jane had to return to help holding the fort.

"Don't leave me now. This is important. I want to talk about it. I need to know ..."

So Jane said she would visit again tomorrow. But in amongst this rationality was so much that was irrational. But if we do not support the rational thoughts by responding positively then we are encouraging the irrational.

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Then Jane asked about the clothes of Sam that she was supposed to be taking home. They were in store. Because his clothes were being put into black bin-liners he assumed he was going home. Jane went onto his room. The few things he had left he had packed into his bag so he could leave. There was nothing left in his wardrobe.

He couldn't understand why he wasn't going home.

He said "they" had put his clothes into the bin liners. He wasn't well enough to help, he'd said. But he'd remade his bed on his own. He was keen to tell her that. He wanted Jane to say "well done."

I had a call from Sam's named nurse this morning. They were sorting his clothes, making sure he got them washed regularly, ensuring he had a bath each day. This all sounded very good.

Not just Sam it seems - but everyone. They were starting with Sam because he needed this input most I thought.

I wondered what had brought this on. Then I remembered - they have a new ward manager. New brooms ...

But this is good. I hope it applies to other aspects of the provision as well.

I went to see Sam on Sunday.

As I was standing in the cold waiting to be let in I couls see another patient in reception. He was half sat, half laying on a sofa crying. His father was with him looking serious and worried and trying to reaasure him.

By the time I was let in they had gone.

Sam was quiet. His care co-ordinator had visited him in the morning. I suppose this was as a result of the incident the day before with the psychologist. Sam doesn't usually get a visit from Assertive Outreach on a Sunday morning.

Suddenly though Sam looked at me very seriously and said he would hit me if I messed with his mind. He meant it and I had to reassure him.

The threat of violence is so very out of character and is very disturbing.

Jane got a call yesterday morning from Sam's psychologist. He's been to see Sam the day before and Sam had tried to hit him. He and Sam have a very good relationship. This is out of character for Sam and deeply worrying.

Jane saw Sam in the afternoon. He seemed pleased to see her and the time went fairly well. Jane phoned the psychologist while she was there so that Sam was able to talk to him on the phone which mended bridges a bit I think.

We invited ourselves to the ward round at Sam's hospital today. They were going to discuss Sam's leave arrangements given what we had told them about the weekend so it seemed sensible to be there - and on this ward that seems to be no problem.

We were lucky that a nurse who knows Sam well was there.

Last weekend after Sam's actions I felt I couldn't do it any more. I wanted to take him straight back. Then we managed and kept him longer and ...

Prior to the meeting I'd decided I could cope with him coming home again. It's so good for him to be out ...

I'm also not sure there was any real danger to him or me.

But Jane spoke on the phone to Sam's psychologist earlier today. He is concerned too. he said we should share the information about Sam having hit me as well. Perhaps it would be best for Sam to know that actions have consequences and for him to have leave cancelled for a bit. Jane went along with this. In the past I've been against this kind of response as his actions weren't rational in the first place. This kind of behaviourist control only works if the subject is rational. But I went along with it. We spoil Sam. Why shouldn't we? But there must come a stage when we've been hurt that he needs to know this is for real.

I was relieved at this really - but so sorry for Sam.

So at the ward round that was agreed. We argued for staff to take him out more but they are clearly not keen either.

It went a little better than the CPA meeting a few weeks ago but there is still a gulf between us and the consultant psychiatrist - especially on medication. However he seems keen to defer to us. That's positive in some ways but I'd also like someone who has the strength of conviction to insist o what he knows is right - perhaps he is just prepared to give way when he doubts he is right. That must be most of the time for a psychiatrist.

He doesn't believe in the concept of "Rebound Psychosis". If anyone has any references to peer-reviewed articles or research I would be grateful for them.

But it is time for the less than good news.

When I picked Sam up from the ward he seemed reasonable to star with but soon conversation was difficult. He was intent on telling us of his thoughts and ideas but was unable to answer simple questions. He got more and more intense with his statements and questions.

I was perhaps too forceful in my response. I wanted him to get back in control again so that he could enjoy meeting his sister later. But that was perhaps the factor that was stopping his rationality. He suddenly announced he was going to commit suicide and ran off.

Close to us there is an old quarry. He was scrambling to the top as I arrived there.

He sat cross legged on the edge of a rock that was nearly thirty feet high. He said he was going to roll forward and fall off. I tried to talk with him. But he had been unable to talk with me all the time he had been home. In desperation I called the emergency services on my mobile phone.

"Emergency. Which service do you require?"

I don't know. What service do you require when your mentally ill son is sitting on the top of a high rock threatening to fall off?

"Police."

Hoping it wouldn't be the ambulance service soon. Perhaps I was being optimistic.

I explained and gave details and Sam started to come down. I think for him he realised I'd for once not called his bluff. I was no longer confident enough that day that he was bluffing. It was for real now. But Sam hadn't been for real. He was playing. But in his state of mind there is such a fine line. One day he will step over it.

I stayed on the phone with the police telephonist until Sam was safely down.

"Don't hesitate to call back if you have any further problem ..."

Sam and I walked back along the path towards home. Suddenly I felt a hard blow on the top of my head. I collapsed almost to the ground and swore as I did so. He'd hit me.

"What the ..."

As I got to my feet I found myself looking into the shocked eyes of a woman walking her dog in the opposite direction. She rushed past.

We walked on and met Jane. We got into the car with my intention being that we took Sam straight back to hospital and report back to staff.

Then we realised Nell was expecting a lift - and perhaps we could fit that in as Sam was calming ...

In the end we spent the afternoon with Sam as described yesterday. When we returned we asked to speak to staff with Sam.

I asked Sam to describe the afternoon - including the events on the rock.

There will clearly be repercussions from this - not least to our own emotional stability.

As we were driving back Sam asked Jane, "Where does Zoe live?"

Zoe is a friend a little younger than Sam who has Down's Syndrome.

"She lives at home with her mum and dad."

"They didn't put her into a mental home."

Sam knows how to pull the heart strings.

First the good news.

Nell was home for the weekend. I picked her and Jane up from the station in a nearby town. We went for a lovely meal in a Japanese restaurant and shared a bottle of wine as we caught up on each other's news.

The next day I picked up Sam. He was looking forward to seeing Nell again. Later in the afternoon we picked up Nell from a friend's house and took her to watch another friend playing hockey. We left her there. She was going on with more friends to a birthday party.

Sam and Jane and I walked along the river. It was a lovely day and the reflections of the autumn leaves in the water were beautiful. I wished I'd taken my camera. A kingfisher flew past - a flash of blue. It alighted on a branch for a few moments then flew back past us again. It's years since I last saw a kingfisher.

On Sunday we dropped Nell at a pub to meet some friends for lunch and went for a walk in a park across the road. There were such a variety of people there enjoying the autumn sunshine. In he cafe we met an old work colleague and her partner who we hadn't seen for ages. Talk eventually turned to mental health issues and they shared some intense experiences of their own. It's surprising how so many people are affected by these issues - but it is so rarely shared with others.

It's been a difficult weekend.

Some good ...

... some bad.

I'll start with the good. Tomorrow perhaps.