'schizophrenia'

- a carer's journal

Sam phoned late tonight.

He sounded so well.

I could tell straight away.

I tried to talk with him to find out if it was likely the staff had noticed. But there seemed to have been little intereaction. He still has all his outside access banned and is getting very bored.

I was surprised to hear him so well. Last week he’d been quite poorly. I visited him on Sunday. Jane’s away so I had to do all the driving. It was three hours driving down and the motorway was busy on the way back so took four hours. Seven hours driving for an hour and a bit with Sam.

We were locked in the tiny visitors’ cell for that hour but managed to have a laugh. Except he couldn’t help but get cross with me for not believing he could communicate telepathically. He demonstrated by copying what I was saying a second after I was saying it. So I did the same to him. Then he just believed I was telepathic too. I promised to email a friend to find out if he had communicated with her telepathically. I haven’t done yet.

Maybe I’ve broken too many promises.

He rang again a couple of nights ago and just seemed off the wall.

Then tonight …

… he seemed fine!

Why?

Has anybody noticed how rational he is at the moment? Is this just for tonight? Will he seem well tomorrow?

Is anybody going to get back to us with a date for the CPA meeting they’re trying to arrange? Have Assertive Outreach got back to the hospital with agreed dates? Is it going to have to be up to us to sort it again?

I think I’ve just had enough really.

Sorry.

Friday we’re out of here. Off to see Nell. It’s her birthday today.

It will be so lovely to see her again.

Sam?
- not so good.

Me?
- not too brilliant either.

But
- I wanted to give you a link.

I was showing Jane today my attempt at developing a "My Yahoo" page. (If anyone can tell me how to get my atom RSS feed from my blog to work I will be eternally grateful!) There was a link to Wikipedia - the online encyclopedia.

"What's that," she enquired.

I tried to explain then illustrated by typing in "schizophrenia". I've only just skimmed the results but it seemed a really good summary so I'm linking to it here and on the sidebar. I'd be interested in any comments people have on the results. But the great thing about Wikipedia is that if it's wrong you can change it! (Or so I understand.)

I’ve not posted for a while.

It’s kind of a relief really. Just kind of cutting myself off from it. I haven’t seen Sam for ten or eleven days. There’ve been developments but I’ve been pushing them back in my mind.

He was moved back to the intensive care ward as he wasn’t so well. Promised he’d move back soon as he seemed okay. But from day to day he hasn’t moved back. Because he’s not quite as well as they had thought. Just talking on the phone – that glimpse of a really well Sam has just receded a little.

Jane visited him yesterday on the way to some work so someone else was paying for hotel and mileage. We’d had visitors all weekend and Sam’s uncle and aunt went with Jane on their way home. That had all gone well. But …

… Sam phoned this morning and didn’t mention it. He’d forgotten. After Jane left yesterday he was being taken to the more open ward for a while. As they passed the main doors he made a run for it. Sprinted for a few hundred yards and then hid in some bushes. He can’t remember how he was found and brought back.

“I just went mad,” he said when he phoned tonight. Nobody from the ward had told us about it.

But he likes it on the ward. He can have telepathic conversations with all the other patients. He can’t with the rest of us. Well, not conversations we’ll admit to!

I’ve been concentrating on our daughter Nell. She’s on her round the world tour. It’s her birthday at the end of the week. We’ve decided to travel out to Asia to see her for a week. She’s entitled to some love and time from us as well.

So we decided overnight and had our jabs and booked the flights the next day

It will be lovely to see her.

Well he was doing well ...

... and he did go swimming and to the gym - twice

... and this morning he sounded so well and sensible and even knew his timetable for the day and sent me his love as I was out and asked Jane how she was

... and this afternoon was transferred back to the intensive care ward as he had deteriorated this afternoon, was clearly upset and was banging his head against the door.

But on the positive side - at least they rang to tell us. They also said they'd transfer him back as soon as possible. It seems good that they have the capability to move him to where he will benefit best, have good resources and kind staff. We're hoping it is just a brief setback - but maybe it's good for them as well so they don't think that sorting Sam out is just so easy!

It was becoming a worry that he would get better quickly, be discharged and then go downhill equally as quickly.

We've always said that each team seem to need to see everything for themselves so maybe it's good that they can now see deterioration and recognise the complexities.

Maybe he'll be in the swimming pool again soon.

Sam's doing so well they are already talking of moving him to an open ward.

We spoke on the phone today and he may be going swimming, going to the gym, doing all sorts.

He sounded so well.

I wonder though if his care coordinator back here has any idea what's going on? All of a sudden they'll say he's ready for discharge and there'll be yet another panic meeting about what to do with him.

I'm not sure we're on too good terms with his new care coordinator so we're unsure how to play it.

However, it's good news that Sam's doing so well.

He often changes so quickly.

But he can change both ways so quickly.

Sam seemed quite well when we saw him today and the staff on the new ward were very friendly. We were even allowed to wander around the ward with Sam - a first!

He seemed very cheerful. A might too cheerful. I wonder if it's the effect of the benzodiapines or the prozac?

He talked of being able to read minds, of being telepathic. But of course he wasn't going to say any of that to the doctor. They would think him crazy and he wanted to get out of there.

See? I told you he wasn't mad!

He also said that he knew Descartes was wrong. There was no such thing as "self" so "I think therefore I am" didn't make sense.

"There are lots of selves," he said. "That is the nature of schizophrenia."

"How about 'We think therefore we are'?" I suggested.

Sam smiled.

Sam phoned yesterday with news that he was being transferred to a new ward - that afternoon. He was rational and seemed pleased by the news. He had also been told he was going to get CBT - Cognitive Behavioural Therapy.

I've heard psychologists claim that there is research to show that CBT is more effective than medication in the treatment of schizophrenia. I feel though that it is probably of most use with patients who have embedded irrational beliefs. Sam's change from day to day!

As I've been writing this I've had a call from the ward. Sam had asked if I could call back. He was just so rational and sensible. He said he'd had his best day for ages. Someone had taken him for a walk in the grounds and another member of staff had played snooker with him. He's got on with her really well, he said. Mmmmmm!

It was lovely to hear him so well. I don't think I have heard him talking so rationally and sensibly since he first went into the secure unit over a year ago.

Let's hope we can build on this.

We're visiting tomorrow - though not until later in the afternoon as someone else was already booked in. This ward also does not seem able to cope with more than one set of visitors at a time. When you're traveling long distances it can make it very hard.

We're looking forward to seeing him tomorrow. Let's hope he remains as well as today.

We finally got a call from the doctor following further requests today.

It was at about 6.30 when we'd given up again. From background noises he may have been phoning from home - but then I used to have lots of evening phone calls to make when I was working (and arriving home after 6.30).

He spoke to Jane and she found his attitude reassuring. He was the junior doctor - and from certain things he said perhaps not yet fully qualified. But at least he was prepared to listen and explain.

It was interesting though that his training seemed to be almost totally related to an approach emphasising medication. That has been born out by his actions.

It's possible Sam may be transferred to another unit this weekend. A 'high observation unit' - whatever that is. But it means he would have more access to the outdoors and possibly the gym and swimming pool.

That would be great

- if they can get him out of bed!

I've not felt at all well this week. Tired, lethargic, no energy. Driving to see Sam on Sunday seemed to have exhausted me. This morning despite having slept for nine hours I had to be woken and just couldn't move my aching limbs. It was such a job to sit up.

Earlier in the week Jane had spoken with the manager of the Assertive Outreach Team. She's taken over as Sam's care co-ordinator. She'd just got back from holiday and had been away when Sam was moved to his current hospital. She seemed to think it was longer term and that they would have little involvement before his discharge. She seemed to want to distance themselves from Sam - or maybe us.

Sam is now on a large cocktail of medication again. He is sedated - so they think he is presenting better. In reality his state of mind is hidden by the sedation and they have no idea how he is. The consultant got back from holiday this week. Jane phoned today to ask to speak with him and despite assurances he has not got back to us. The ward doctor has failed to get back to us three times since Sam's admission. The only time we have managed to speak to a doctor was at Sam's admission.

Jane rang Sam this evening but the staff didn't want to disturb him. He was sleeping. The nurse said he'd slept a lot today. And yesterday. And the day before.

I was sitting drinking coffee after dinner. I just found I wanted to cry. I hadn't realised I was so upset. It's the powerlessness. I want to meet the Assertive Outreach Team Leader, the consultant, the ward doctor. I want to shout and rage at them. To ask where is the continuity? What is the long term plan? What is the thinking behind his current medication? Is anyone thinking, talking, planning at all?

But I couldn't - so I sat there, morose. I poured a glass of red wine (I'm sure it's good for me but I'm not so sure about the next two.) Then Jane and I played a game of cards (crib).

She won.

Damn!

...................

I'm finding writing the blog harder at the moment. So forgive me if I post less regularly. I don't want it just to become a chore.

Late last night Sam rang late.

"Just to say I love you and goodnight ..."

He's been ringing lots - but less recently. Probably because they've increased his medication. Additional benzodiazapines and now we understand Prozac. But his consultant is on holiday so this is all on the ward doctor's say - not that he will return our calls. The original plan was to reduce his medication but in ten days that plan has been stood on its head.

The staff say he's more settled now - spending more time sleeping in his room.

By "settled" they mean "sedated". Underneath it all the psychosis is still there - he's just less hyper and causing them less trouble.

He rang late one evening during the week taking of suicide and depression. Nobody on the ward was aware. But the've put him on Prozac which has caused many young men inexplicably to have committed suicide.

We visited him today - about three hours each way on the motorway. It would be much longer if it were not a Sunday. We arrived at two o'clock in the afternoon. We'd had to book our time of arrival. There's just one bare room to meet in. We and he are not allowed anywhere else together. He seemed good. Calm, able to talk and even a very short game of cards.

He went for a cigarette and when he returned just stared at me, unable to converse.

The doctor is back tomorrow and will see him. Perhaps we can begin to ask some more questions then ...

... if we have any energy left any more.

One day soon there's the danger it will all run out.