'schizophrenia'

- a carer's journal

After our walk wit Sam yesterday he was chatting with me. He explained that he'd gone a bit quiet on the walk because there was more difficult stuff going on in his head.

So although he's really well - he still has symptoms. The progress, I think, is that he recognises these occurrences as being unhelpful and has ways of controlling them.

He rang this morning though to say he'd had a bit of a relapse in the evening. Another patient had been sounding off and then another had been talking with him about some emotional things - then he'd had some kind of episode.

staff had given him some Lorazipan. He'd been given this one day last week when he was finding things difficult.

Often anti-depressants like this have been more helpful to Sam than anti-pscychotics. They are addictive though.

We chatted and discussed the positive nature of having the additional medication as required rather than just every day. He was really able to discus all this sensibly this morning.

Later in the day he was given some notes probably from a ward round that was discussed with him. His activities are being restricted a little because it is felt that too much stimulation can trigger his symptoms.

That of course is right - but we feel it is the emotional stimulation from the other patients rather than the stimulation from going to the gym and the pool.

But what about visits from us and his grandparents and showing him pictures of his new nephew ...

???

Jen drove us to see Sam today. In the rain. Through the traffic jams.

We were late - but it worked out ok.

We'd taken my mum and dad. They'd been asking for ages but we'd kept putting them off. Sam wasn't well and it could be distressing and the journey ..

But things seemed ok this weekend.

We had lunch with Sam. Afterwards Sam left us to take something back to his room. My dad started to say something about Sam then just crumpled. He was in tears

He was in tears because he had not seen Sam so well for ...

Well ...

Just ages ...

We'd told him Sam was well. But to see it. Believe it?

Sam still has a long way to go - but this is another measure for us of how far he has already gone.

All my posts recently start "Sam phoned."

But he did.

With him being so far away that's the main contact we have at the moment - though we'll visit again tomorrow. we're taking my mum and dad. They haven't seen him for months. It didn't seem sensible to subject them to the long journey on oaccasions when Sam has been unwell enough to distress them. So it's a measure of his improvement that we're taking them tomorrow.

Sam talked of trying to get himself better, of concentrating on that, he emphasised it. he talked of conciously trying not to get involved in others problems as he realised this could bring him down.

The fact both that he wants to get better and is really trying hard to look at his actions to do so is great.

Sam rang this morning to say he was packing.

He'd been told he could move down to the more open ward. It seems that somone there has had a relepse and is being moved to the more secure ward - so they're doing a swap. It's sad for the other patient but fortunate for Sam.

He sounded sensible and positive.

When Sam phoned today he was much more upbeat.

"When I woke up this morning I was really down but I had some ...
"What's it called ... ?
"CPA, CPN ... ?"

"CBT?" I suggested.

"No. Lorazipam. That's it."

yesterday when I'd been talking with him I'd suggested he talked with staff about how he was feeling but that they might prescribe him some more antidepressants. Then he was adamant that medication was not the answer. Maybe today it was. But to be fair he had been moved down to the less secure ward all day. He just has to sleep on the secure ward. So they do seem to be looking at both aspects.

It was so good to hear him so well.

It is interesting as well the number of times that anti-depressants have helped him as opposed to anti-psychotics.

Sam phoned this afternoon - very down.

He should have moved on by now. Of course he's down.

But when I tried to talk with him about it, he described what a doctor had said to him ages ago about this stage.

That often when psychotic patients begin to get better they can become depressed. There is a loss to get over. The loss of their psychosis - that has been so close to them.

We drove down to the CPA meeting with Sam's new care co-ordinator. She's the team leader. Maybe nobody else would work with us! I'm sure that's not true but sometimes one begins to wonder ...

We've only had one brief telephone conversation since she took over, since we got back from holiday, since she got back from holiday, since Sam was sectioned again, since Sam got send to the private secure unit as the ward couldn't hold him. That conversation had been a bit strained. We'd imagined a gulf between us.

But she was as nice as pie and seemed to have similar views to us as to the way forward.

The meeting went well.

Not like a CPA meeting at all. Only the ward doctor plus us and Sam. Normally there would be reports, loads of people there and someone taking notes. Clearly this bit of the private sector isn't like that! Or perhaps it was just this doctors informal style. It suited Sam anyway. He hates big meetings with people talking about him, judging him, as if he wasn't there.

This is the first doctor we have met who really seems to understand Sam. He's clearly spent time getting to know him and has made some insightful judgments. His proposals were also in line with our suggestions. We all think a rehab ward would be a good next move. We'd had one in mind and it had been discussed on the way down. But the doctor recommended a slightly more structured one. Part of the private sector - so it all depends if we can get the funding. So that will be investigated.

It was also agreed Sam should go back to the more open ward as soon as possible.

He's still not been moved back though and being on the secure ward is making him poorly again.

And if he gets more poorly they won't move him off the secure ward.

There's a noisy and violent patient who has changed the whole dynamics of the ward. Staff aren't coping and are stressed and have no time to talk in a relaxed fashion with other patients.

We visited on Sunday. As Sam left the ward he gave out a huge sigh of relief to be off the ward. We had lunch, a long walk round the grounds, a cup of tea at the cafe. As it got to the time to return to the ward Sam became withdrawn and started to chain-smoke. I hadn't seen him like this since he was on the secure ward before we went to France.

He's ringing all the time. He sounds reasonable but the pressures are getting him down. We've tried phoning to try to get him moved to the more open ward - but no beds is the excuse. At least they agreed to let Sam spend some time down there during the day. But today he says there were lots of new people down there. So why couldn't Sam have been moved there before? I guess these new patients bring new income with them. At over five hundred pounds a day they're not going to turn it down so that Sam can be moved. They've got his money already.

Sam phoned this evening. We talked about the CPA meeting tomorow. About hopes and dreams and all that stuff.

And I found myself trying to hold back some tears.

I don't know what and how much I'm feeling until it comes out at such times.

Sam phoned this morning.

He wanted to explain about what had happened. He seemed fine again. Better than when we had seen him on Sunday.

This afternoon he phoned again after he had spoken with the doctor. He was so mature and sensible.

The young doctor said he had enjoyed talking with Sam as he was able to articulate things that he had previously only read about in text books.

Sam seemed so well yesterday.

Today had gone well too. He'd been to the gym again - and the swimming pool. But later he'd had to go to a different ward as there had been a flood on his own ward. Not sure what kind of ward but apparently a little more lively! Maybe he'd been disturbed by this but he returned to his own block for dinner but then ran off. Maybe twice it seems. Climbing trees in the grounds. But he came back okay.

So he was moved back to the intensive care ward overnight. Perhaps tomorrow he can go back to the less secure ward. Perhaps.

Jane got a call from the ward to let us know all this. Well at least that's good I thought. But Jane said the nurse who phoned her had called because she had been told too by Sam's named nurse who happened to be on duty when he was moved. "You'd better phone his mum." Because Jane had told her about previous complaints from us elsewhere. You shouldn't need that reputation. We should be told anyway.

It could be good this has happened as it will remind them how changeable and volatile Sam can be.

But it's yet another setback when we were feeling so hopeful yesterday.

Are others so volatile? How does this fit in to future plans. "Future plans"??? What might they be.

I started ranting about it tonight as Jane tried to calm me.

It's usually the other way round.

Maybe I've got a lot of anger about all this to get rid of yet. We discussed that when I saw my psychiatrist and Occupational Therapist at the Chronic Fatigue Clinic last week.

I'll try to get back to that.

By the way - I forgot to tell you.

He's really well at the moment.

No - really, really well.

Ok - a little quiet but he knows himself how well he is and how he can put all the other stuff in perspective.

There's a meeting on Thursday where future possibilities will no doubt be discussed.

But Sam's so changeable ...

But there are so many positive possibilities again at the moment - and of course worrying scenarios.

Things have often gone so badly wrong in the past.

Fingers crossed.

Well that wasn't too hard was it?

I was finding it hard to write a proper post. (Writers' Block?)

Maybe it's not having written one for some time and having lots of things to catch up with - but maybe little to say. So I just wrote about today and not the other things I felt I needed to. It's not a historical record for heaven's sake - it's just a blog.

So if I don't catch up with the other stuff - well I guess you won't even notice!

We visited Sam today. We were able to have lunch with him in the hospital dining room. Being a private hospital it was actually very civilised.

Then we were allowed to walk round the grounds with him - past the golf course, the old chapel and the croquet green! The grounds are really beautiful.

I used to go to school next door. We knew then that there was a psychiatric hospital over the fence - though we probably called it "the loony-bin" or something similar. We were frightened by older pupils by threats to throw us over the fence where we would be at the mercy of the "nutters". If only we had known what a beautiful and civilised place existed over the fence - though it may have been very different forty years ago.

Many years before that a famous English poet was incarcerated there.

We finished with a cup of tea outside a cafe in the grounds. Most of the customers were patients many of whom had nurses accompanying them who looked more like bouncers. Though most of the nurses on Sam's ward seem to be attractive young women with tattoos. (Is that a contradiction? Perhaps just showing my age and prejudices.)

We were in trouble for being late back - though we had been given no timescale. They'd begun to wonder if we'd helped him abscond.

I know I promised ...

but maybe tomorrow.

OK?

I'd meant to write some more today ...

... to bring you up to date.

But ...

all I could find were ...s

I'll try again tomorrow.

Promise

Back from visiting Nell.

Nearly over the jet-lag!

It was lovely to see Nell again - we've not seen her for six months and won't see her again for another six months.

When we got home she already had her photos of us with her on her weblog for us to see and then a bunch of flowers arrived from her thanking us for going out to see her.

She's a gem!

I'll write more soon.