'schizophrenia'

- a carer's journal

Friday - a brief "blip". Sam went out with Jane to a social event. Maybe a bit too much for him. He began to seem a bit confused but was fine a few hours later.

Though I noticed some scratches on his legs and hands. How had he got them?

"Oh, must have been climbing the tree last night ..."

(When he has a blip on the ward he goes out and climbs the tree. They don't like it - but at least that's how they know he's having a "blip"!)

So he's had two in two nights ...

We always tell them when there have been any blips at home. Doesn't seem to work both ways.

Saturday What happened on Saturday????

Not a lot but Sam was in a really good mod. His depression seemed to have lifted and he was in good form. He was able to explain the events of the tribunal and a phone conversation from his Care Co-ordinator to his Granny and Grandad in clear detail. Better than me!

Later some old friends came round for a drink and Sam managed great. He really enjoyed the evening.

Today (Sunday) We went out for a country walk. I've not been well physically over the weekend but managed this. Jane chose somewhere really nice. Lovely views and flowers and ... well, just nice! The tea-room near by was full but that worked out well as we then stopped off at another tea-room with the most stupendous views. I had tea and carrot cake. (My favourite.) Sam had hot chocolate and sticky-toffee pudding with ice cream. Is he really taking seriously loosing weight ... ????

But later I managed to beat him at chess. That's one win each and one draw I think this weekend. (Secretly I think he might have beaten me twice but I'm not sure so I'm keeping that quiet.) The fact that he is able to play a decent game of chess at all is amazing.

His "Named Nurse" reckons she can play chess but hasn't played Sam yet.

I hope he gives her a good beating!!!!!

I've had some links recently from this weblog.

I'm going to quote a little from the last two days posts as it sounds very much how Sam has been recently and it maybe might help us understand what it's like to be inside his head.

Thoughts

Feel incredibly depressed at the moment, at limits edge. My day started with thoughts of the previous post, to then get ready for a appiontment in the clinic across the road, to meet my new key worker. I was surprised when i stepped out the door, it was just emptiness with a little anxiety, somthing i havent felt in a long time. Got in the car, drove acros the road, and went in the clinic. Sat down the waiting room, and the denseness of the world, this time slowly, crept back up on me, making me supersensitive to the thoughts and intentions of Them. This kept up a steady pace, until it became unbearable, and my thoughts turned melancholy as i were trying to fix my attention on them. But even so, it wasnt the worst i have experienced.


Thoughts

I am now experienceing what it is like back at those times of fresh schizophrenic breakdown. I have just had a smoke, after something unimaginably stifiling and humiliating, and have been able to look through and experience a clean window back to those times. The stifling black cloud of depression had settled on me, macking my moves in absolute improvisation, so u decided to have a smoke and then watch the said film, which was hero, one that at that time i used to watch alot, and I remembered a kind of euphoria i used to go in to when i wasnt in the ebsolute opposite, its a euphoria of inthemomentness and of freshness (still dont know wether ive reading reading this out over typeing it - even this), whereas the other was a absolute hell of inthemomentness.

Thank you Golyadkin.

Jane contacted Sam's care co-ordinator yesterday to tell her about the events of the weekend.

It wouldn't have been fair to anyone for her to find out first at the meeting today. She seemed quite shocked.

Doesn't anyone know Sam yet? These things happen. I guess they are always likely to but thankfully they are becoming rarer and rarer.

She hinted that there could be problems at the meeting today. It is at the local rehab ward to plan his move there. Or not as the case may be ...

Second thoughts?

Because he can behave impulsively against his best interests?

But he's always done that.

Especially at times of transition.

It's what he does.

They're worried of course because he was found climbing on a rock face, stuck, crying and Nell helped him down.

I'd have been more worried about him trying to cross the road. If he'd got hit by a car he could easily have been killed. Falling off a rock he would most likely have had a few scrapes and bruises. At the worst a broken bone.

I think sometimes they are more obsessed about climbing than Sam is.

So why might they decide to change their mind? Because he's poorly? But that's why he needs support. There seem to be so many institutions that only want people who don't present any problems. If they didn't present any problems they wouldn't need to be in hospital.

Sam's psychologist rang this morning. He'd spoken to Sam. He wanted my version of what had happened. He sounded very serious. The augurs did not seem good for this afternoon.

So each time the phone rang this afternoon we worried if it was the message. To say they'd changed their minds. That they didn't want him. That it was too much of a risk.

So lets lock him up for ever. Never mind that he is likely to be let off his section if they don't take him. Then what will be the risk assessment for him?

But nobody phoned. It was just my imagining.

Until this evening.

Sam phoned.

He said he was very depressed.

Oh - had he heard anything.

Yes, he'd heard from his care co-ordinator. She'd phoned him.

And ...

He was to visit the rehab ward maybe next week to work towards his admission.

... Phew!

They'll still take him!

I bet it was a difficult meeting.

But at least they are still going to take him and they are aware that things can still go wrong. But we'll get through it.

I hope!!!

Sam's positive about going. He wants to. His depression is just constant at the moment. The way the chemicals are going through his body combined with being locked up and that sense of helplessness at watching his youth disappear not to mention the thoughts in his head that keep telling him how bad he is ...

There's still a way to go.

But at least the immediate possible crisis seems to have been averted.

For now at least.

It was late before Sam was up and about yesterday but he was calm.

Nell had offered to stay with Sam while we went to a concert.

Sam should have been coming too.

So kind of Nell, but we dithered, then in the end Sam seemed well so we went. It was only down the road and we had mobile phones with us.

We enjoyed the concert, a few drinks and the company of friends before we left early.

Sam and Nell were snuggled on the sofa, watching Big Brother.

They'd played cards. I could see the score sheet. It was pretty even. The night before Sam had struggled to play "Snap".

Jane went to bed but Sam and I stayed up to watch a film.

We enjoyed the film, a thriller.

Sam was able to concentrate and even discuss it afterwards. He seemed well again Even cheerful.

In the morning he took a while to get going as usual but seemed very much back to normal.

Jane phoned the ward to let them know about the events over the weekend. It seemed silly to hide it. If Sam had other problems during the week they should know.

But taking him back, when she arrived with Sam there was a reception committee and a proper meeting with the psychiatrist, key nurse, occupational therapist. All there to tell Sam what a naughty boy he had been. Under the circumstances he coped well really. It just wasn't what he needed. We'd already done that in spades!!!!

I guess they had to feel they'd done it as well. To show they'd fulfilled their responsibilities.

But tomorrow there is a meeting to plan Sam's return to the local rehab ward. What would they think of events?

We tried to contact Sam's care co-ordinator who kindly phoned late tonight But we are so worried that in being honest we've made more of this little blip than is necessary.

Everyone is afraid.

They don't want to take him if he is going to mess up.

Of course they don't.

But if he had no problems then why would they need to take him anyway?

Surely they are there to help him with his problems?

Isn't that the point?

It was just one spliff.

But so much harm.

We don't know how much yet.

He went for a walk on Friday after he had got back home. Over the last few weeks we have taken to letting him go for this short walk. It has always gone successfully and after all he has a half hour unaccompanied leave each day from the ward.

He's got a mobile phone now. He texted us to say he was going a bit further for a run. We thought this positive. Then a little later to say he was still running. Then nothing and no reply to our messages and calls so we went looking. I thought he would be in the pub but of course he wasn't. We looked further afield.

I was fed up. We seem to have done this so often. What was this about? The decision for him to move closer had been agreed by the tribunal who had put pressure on for it to be expedited. But things always seem to go wrong at times of change. He was also supposed to be meeting a friend the next day. Sometimes little worries can have a big impact on Sam.

Eventually Nell found him climbing on some rocks near by. He was frightened and not at all well.

Jane came out and she and Nell got Sam home and gave him a bath. It was sorting his clothes that Jane found a small plastic envelope containing cannabis.

We discovered later he's got the bus into town and back and had bought the cannabis in a pub before smoking some of it near the rocks. He can't have had a lot as it was a small packet and there was quite a bit left. But that small amount had a big impact.

Sam was competely out of it and stayed that way.

On choosing a cup of tea:

"I'm not happy about being eaten in a fridge."

When I went to chat with him outside where he was smoking a cigarette:

"This is important. I want to be taken to a church NOW!"

Later chatting in the living room:

"I think I'm enlightened."

When he started telling me about the power of my thoughts and how I should be living my life I retreated behind the newspaper. I'd had enough of this.

Maybe after a sleep he'd be better in the morning.

But of course he didn't sleep.

Not at all.

All night he remained awake. Jane, Nell and I stayed with him in turns.

I was sleeping at six thirty when I heard him singing from the front doorstep on the top of his voice. A nice early morning call for the neighbours. Jane came back to bed exhausted and I went down for my shift.

Surely he would get tired soon?

He he stayed awake all day with strange plans and ideas coursing through his brain and sometimes spilling out.

By late afternoon he was able to reflect on what was going on and realise it was not good but there was still no way he could control it.

Early evening he finally went to bed. He's been there since - nearly 21 hours - apart from occasional cigarettes, food, medication and the bathroom.

A little while ago I spoke with him and tried to coax him outside for some fresh air.

"I'm so scared," he told me.

"Scared of the thoughts in your head or the fact that you are having those thoughts," I asked?

"The thoughts are very frightening, but yes I'm scared that I am still having them."

Shortly after he went back to bed.

::::::::::::::::::::::::;

Yesterday evening I was totally drained. Emotionally and physically. I could feel my ME symptoms returning with a vengeance and I was easily upset - just thinking of Sam and Nell.

How I coped when I had day after day of this in France a year ago I just cannot imagine.

I was thinking of it recently with the Cannes Film Festival being on the news. We were there with Sam just a year ago. We returned to Cannes looking for him when he disappeared and people were so kind.

So very kind.

I rang to see how Sam was and again he's down but he's not had a any apparent psychotic episodes.

He kept ringing later about his mobile phone. His uncle gave him an old one and a card he'd got from someone else but we've had problems topping it up. He'd been trying to phone a friend who may be visiting this Saturday which is good.

Today he phoned to say he'd had a good day. Been to the gym and that had helped. If only they would encourage him to go more often. Though we later found he'd also been to the pub and had three pints of beer so maybe that had worked better than the gym!

Sam was very depressed this weekend. He was debilitated by it. He tried - but found it so hard.

Today we went back to the ward for his Mental Health Act Tribunal.

It was a difficult one. The sensible plan is for him to move soon to a local rehabilitation ward. But his case for release was strong. The doctor and nurse found it hard to say he needed to be detained for his own safety which was what was required.

When Sam spoke I was moved. He talked of the support from his parents and his gratitude for it.

When It was my turn to speak I was almost too moved to do so but I was told later that I had spoken well and movingly. Both Sam and I criticised the psychiatrist. We felt in the end he had made a fool of himself.

We had to wait a while for a decision. It wasn't a typical statement. Instead they said they recommended a move to the local ward. They expected it to be completed in six weeks and to be informed of this. If it was not sorted by then they would reconvene and consider Sam's case again.

Afterwards tough Sam walked to the main door looking as if he wanted to go straight out.

"I'm feeling really poorly dad, can I come home tonight?"

The psychiatrist had gone on to another hospital. Sam's nurse said they would try to get to him to sign the forms - but it would take forever.

I wasn't keen to drive all the way back tomorrow anyway. We decided Sam would be okay.

There were traffic jams on the motorway and a junction closed so we were very late home.

Nell had cooked us a lovely meal. A delightful surprise. It was so tasty.

Then we phoned Sam.

He was not well. Had been trying to get out all evening. They managed to get him to the phone. He seemed to calm a little while we talked.

Jane phoned a little later. It seems he had improved while we wee talking with him but as soon as we went off the phone he collapsed into tears.

They would get him to phone again if it might help.

Waiting ...

We're all tired after getting up early to drive for an hour and a half to get Sam back to the ward for the Mental Health Review tribunal psychiatrist to see him at 10.00 this morning. Then we got to drive all the way back.

Whilst Sam was with the psychiatrist Jane and I went for a coffee. The only place we could find open was a pub. There were so many people drinking at 10.30 in the morning! And I had thought the introduction of 24 hour drinks licenses would encourage late night drinking rather than early morning drinking!

We drove back through nice countryside rather than the motorway though views were spoiled by drizzle and mist. We stopped at an old country pub for lunch.

Sam said he didn't feel well. He was tired but he was also very depressed. We've seen little of him today.

In many ways we're more worried at the moment about his depression than his psychosis but wonder to what extent his health care professionals are aware.

Tomorrow is his Mental Health Act tribunal.

I'll tell you know how it goes.

When I picked Sam up to day he seemed in fine form.

He was instigating conversation, joking - just seeming relaxed.

That was good as he'd just had a meeting with his psychiatrist. His section is up for renewal. On arrival the nurse had informed me that he had renewed Sam's section to detain him for a further six months.

Sam told me that the meeting with the psychiaeist had only been for a few minutes. He'd asked Sam why he'd climbed the tree last week. (When Sam had one of his 'blips'!)

Sam told him,

"because it was there"!!!

Probably not the best answer.

I asked Sam what had caused it and he gave me a long thoughtful response describing his state of mind in some detail.

"Did you say any of this to the doctor, Sam?"

No - of course not.

:::::::::::::;

I've just beaten him at chess. We were sitting outside in the late afternoon air.

He beat me three times last weekend. But this time I'd had nothing to drink and he was on his third glass of wine!

He's just gone for a short walk. He's been gone a little while now. I'm sure he will come back soon ...

The psychiatrist did phone back.

We spoke for nearly an hour I guess.

She wanted to know, she wanted to understand, she wanted to help Sam.

It may not happen ...

... but I believe she had goodwill in her heart.

So I tried to say what needed saying - but I guess I forgot lots.

It may have influenced her decision.

It may not.

She said she wouldn't be making hasty decisions. She worked with a team. She would have to discuss with others. That's good.

So I wasn't expecting to hear more today.

Then later Sam's care co-ordinator rang.

She'd met with the psychiatrist and the rest of the team in the afternoon.

In principle it had been agreed that Sam would transfer to the local rehab ward.

In principal.

We don't know when. When it is properly planned I guess which is how it should be.

Later Jane managed to get through to Sam.

He'd been wakened and kept going in the morning so now he just needed to sleep. He tried to sound interested in the one thing he was currently hoping for ...

... but just at the moment he needed to sleep.

It's an awful lot of medication he's on.

When I spoke with Sam's named nurse yesterday she was so negative.

"Attempted absconsions", "refusing medication", "non cooperation", "not taking up activities offered", and so on.

Part of the negativity was probably caused by the mindset of writing a report for Sam's tribunal next Monday. She has to come up with all the arguments for why he shouldn't be released from his section. She see is seeing all the concerns and choosing negative language to describe them.

If this is what she has been saying to the psychiatrist who visited Sam last week to assess him for a possible transfer ...

I'm worried Sam will just give up and go into a downward spiral if the move does not happen. Or he could get angry and run off.

So this morning I rang the psychiatrist who will make the decision about the potential move. Sam spends nearly as much time with us each week as at the hospital. We engage with him for more of that time than staff on the ward do. Wouldn't it be sensible for her to talk with us as well as part of her assessment? Or is that just too much like common sense?

I explained this to the secretary and she promised to pass it on.

I wonder if we will hear from her?

It's been a nice weekend with Sam. On Saturday he helped me in the garden and did some heavy work that I'm not up to. Today we had a lovely walk in the sunshine sheltered from the strong wind by the trees and the valley.

Then the long drive to drop him off.

His named nurse asked to chat and we went to a private room for a while.

Lots of complications about seeing the doctor - his section will shortly be due for renewal again - and the Mental Health Act Tribunal psychiatrist before the tribunal on Monday. But she was suddenly telling me about stuff we hadn't heard before. How often he had "tried to abscond", that he wasn't taking up activities offered when Sam was telling us that nothing was offered.

So I talked with Sam and tried to sort it. There are still differences of opinion so as I left a more junior member of staff was going through Sam's notes to get the detail. It's important as this is being used at Sam's tribunal and for decisions about possible moves. The likelihood of a transfer looks much less likely now.

Sam had come into the room defiant - wanting to know what was being discussed without him. His eyes though looked large as if he could tip over. At the end when we were left alone he crumpled a little.

"When I look well dad, I'm not really. My stomach is churning and I feel sick inside. My body aches and I just can't do things when they want me too."

So it goes down as having "refused" an activity.

Then I drove back again, exhausted.

The future suddenly seems more bleak again.

Sam seemed to have got the message from the psychiatrist that she wasn't making any decision yet.

When Jane picked him up on Friday she spoke with the ward manager. She hadn't been on duty when Sam met with the psychiatrist but Sam's key nurse had satin on the meeting. The notes were sought out.

Sam had "admitted" that he didn't take his medication when at home it said. What Sam had actually said was that once he had forgotten one afternoon dose. He's actually better at remembering it than we are. The only other thing she said was that the psychiatrist had said the new placement would not be appropriate for Sam. This certainly wasn't what he had heard.

Jane tried to phone the psychiatrist.

She doesn't work Fridays.

Nice for some.

She phoned Sam's care co-ordinator and left a message.

We were a bit upset about it on Saturday morning. Or at least I was. Trying to work out what was for the best. What if Sam doesn't get into the local rehab ward?

It is his tribunal - his appeal against being detained under the Mental Health Act legislation - coming up a week on Monday.

Does this mean we change our view?

But we still know nothing yet.

We got a text then from Sam's care co-ordinator.

She is out of the country until Wednesday on leave. She'd also tried to get in touch with the psychiatrist without success. She was surprised to hear there might be a negative response from the psychiatrist and did say to text her while she is away. That's very good of her.

I started to write her an email for her return. I don't know if I'll send it. It was probably more for me than for her!

Jane has texted her back.

Now Jane seems to be coming down with flu even though she his supposed to be dashing all over the country this week.

Meanwhile Sam is just staying very calm about everything.

On Friday Jane was talking with him about it all and getting upset. He was the one who supported and calmed her.

But the professionals are scared.

It's to do with "risk assessment".

He has put himself in danger in the past.

Nobody wants the responsibility if he gets killed whilst in their care.

So does he have to be locked up forever?

We'll fight to have him home again rather than this - though just from my own responses on Saturday I know how fragile I am and am worried about the efects on me.

But I thrived in France so maybe it can work ...

Jane phoned this morning and they said Sam was fine. He'd had a good night - said to staff he's "slept like a log". When he's disturbed he's pacing the floor all night.

Later a call from his care co-ordinator. She's had a blow out on the motorway and wouldn't be able to make the meeting. The psychiatrist was still going - but she had other meetings and wouldn't be able to bring Sam back.

I phoned Sam after the meeting. He was positive, well, able to discuss really sensibly.

He said the psychiatrist had been cautious about the possible move. She didn't want to make any promises and said in any case not to expect it to happen quickly.

Why must everything take such an age?

He discussed kundalini with her.

He also tried to explain his blip the previous night.

He said it was like a river. A river of rushing thoughts going past. That he was able to stand on the bank and watch them going past and remain sane. But sometimes. Just sometimes. The thoughts swept him away. But he could get out again soon.

He was disappointed not to be coming home today. I couldn't collect him as I had no car. "This evening?"

"No, Sam."

I was tired.

"In the morning."

I realised though that I was missing him too, not having seen him last weekend.

So sorry - a few people have wondered if everything was okay.

I'd written a post explaining we were going away for a week but somehow it got saved as draft rather than posted.

Anyway - we had a great, restful time.

We'd arranged for Sam's uncle to take him for a walk on the weekend we would normally have had him with us. That went great. We even got a text message from Sam on the phone his uncle gave him saying what a good time he'd had. When we got back on Monday we phoned Sam. He was so sensible and in good humour. He'd been swimming during the day and said it was his best day for ages.

Tomorrow a psychiatrist is visiting him with Sam's care co-ordinator to decide about his possible return to a rehab ward closer to us.

So it was upsetting when Sam phoned just a little while ago. He couldn't articulate. He was not at all well and he knew it. It could have been brought on by the stress of knowing he has an assessment tomorrow. Recently he has recovered from such blips in a few hours.

I do hope he is okay again tomorrow.

It is so important