Friday, January 26, 2007

It's Jane's birthday tomorrow so Jane, Sam, Nell and myself are all going out together for a meal tonight. It must be the first time since ...

Well, a long time ago.

I remember once, just across the road from where we are going tonight, was immediately before ...

all sorts of problems.

I'm sure it will be fine tonight.

Fingers crossed.

Wednesday, January 24, 2007

On Thursday it was Sam's Mental Health Act tribunal - an appeal against him being detained. A very formal, legal process.

He'd found the short ward round difficult enough the day before.

He did well. Despite all the hanging around and he and I dashing out to an outside shed in the gales for him to have a cigarette.

Afterwards across the road to a pub for something to eat then on to a meeting - we'd managed to get Sam leave for it. Some really interesting people from the US talking about support systems they were developing for people diagnosed with Bi-polar Disorder. They had been diagnosed - and knew what worked. I'll link to their site soon when I get the energy. They had been delayed by the weather and were very late. As they arrived Sam jumped up and offered to make them a cup of tea. It was the most lively thing he did all day I think! But it just showed how his social skills are still there and can initiate him into normal social discourse. I can't happen the same on a hospital ward. Eventually Sam decided it was time to leave.

But the thing that really stuck in my memory from the whole day was when was asked about how hospital had helped him.

"It's made me, angry, upset, lonely and depressed."

Jane and I both had to hold back the tears.

Tuesday, January 23, 2007

Then Sam and I were dismissed. It was clear that neither Sam or the consultant were interested in the other things on my list at that meeting.

Sam asked in the meeting if we could go for a drive. I looked at my watch. I was supposed to be picking Jane up. Perhaps a walk to the shop to get some tobacco. Everyone looked at each other and agreed it was a good idea.

So we set off.

As far as the locked door.

No section 17 papers. They still have to be signed.

So we waited outside the room in the coridoor for nearly twenty minutes.

It had just been agreed.

Sam already had leave from his previous placement with the same psychiatrist.

But we have to wait in the coridoor.

Sam said,

"I'm frightened. Everybody is evil here."

I reassured Sam.

After a few moments he seemed more calm.

If I'd had chance to talk with him before the ward round meeting perhaps he would have been able to articulate his thoughts better. But they will have made judements from that meeting without any real unserstanding of his current state of mind. They're professionals. They know.

We went for a walk to buy some tobacco. We came eventually to a small local shop. It was virtually empty. They couldn't afford stock. We bought their last two packets of rolling tobacco. It semed even sadder than some of the places Sam has stayed. I'm sure the lighter they sold me as half used already.

We stopped for Sam to have a cigarette and strolled back in the increasing drizzle. There was no time for a hug as we said goodbye and I tried to give some extra tobacco and money to staff at the office. At least I was allowed in. At his previous ward this would all have to have taken place on the doorstep.

The nurse who showed us out was one who had spent a day at the house with us and Sam. He touched my arm as I left and he said goodbye. It was as if there was a real affection. I really think some of the staff there understand and want to help us make it work.

I really hope so.

Monday, January 22, 2007

I sorted various issues to do with leave and we chatted about how Sam was. I mentioned problems about him looking after his tobacco and money and his clothes - and that they had all gone mising at least once.

The ward doctor suggested - I'm sure kindly and helpfully - that perhaps Sam could sew his name into his clothes then they would be easily identifiable.

Sam was at his most articulate.

He looked across at her and eyeballed her before saying clearly,

"Thats just really stupid."

I tried to recover the situation as she did with other sugestions. But she'd tried to treat him like a three year old.

He might be mad but he's twenty seven. I'm sure at time's I might also treat him like a child - but he wasn't having a psychiatrist doing it.

I just hope he hasn't made an enemy.

- I'm sure she's trying to help ........

Sunday, January 21, 2007

Last Wednesday I waited for twenty minutes in the visitors' room until finally someone came to invite me to ward round. They came with Sam.

Sam was wearing a woolly hat on top of a bandana. He looked totally spaced out. I had no chance to talk with him or help to calm him as we were lead down to the meeting.

This was the first ward round since Sam had arrived. I don't know what he thought was going on. I didn't know all the people. I doubt that Sam did.

I asked to be introduced and we went round the table. I forgot immediately who everyone was and I doubt that Sam even started to remember. But it doesn't matter at such meetings. The only person who talks is the consultant. Everyone else knows their place. Except of course me and Sam.

The consultant started to ask Sam questions. He managed the occasional "yes" or "no" otherwise he was silent - even in response to direct questions. I stroked his back. Sam just stared straight ahead.

On what he wanted to do Sam could only come up with the response "climbing". It's all he wants to do.

So he came round to me - but seemed determined to get Sam to say it was okay for him to talk to me - even though Sam could only get out a few words. It's quite right not to speak over someone and to ensure that there is agreement about such sharing of information. I thought we'd got over that. Sam agreed how much he valued our support in a really genuine way when I put it to him. I just felt the consultant was looking for ways to exclude us. With a less close family he could have refused to speak to me at all.

If they ever try that ....

Though they did once.

Saturday, January 20, 2007

Jane couldn't get to the ward round on Wednesday so I went.

I rang in the morning with some trepidation but again was welcomed in such a friendly manner.

"Ward round? - You can attend? Oh good!" was the positive and friendly response. Not the - "Oh, I'm not sure about that," approach that we are used to.

So I got the time and turned up. it was a mixture of good and not so good. Everyone was trying hard - but sometimes it doesn't quite work. They can't all see it from someone else's point of view. And Sam - well he wasn't too good.

I drove around as I was a little early then parked and pressed the intercom buzzer. Soon I was let in and shown into the visitors room until they had finished "their bit" and were ready for me. You don't get let in to the proper ward round as a member of the team. They have a little window for you to show they are taking account of carers' views. I'd have loved a cup of tea but it wasn't offered.

Later standing outside the meeting room I heard their exclamations of appreciation on the arrival of their cups of tea as I was waiting with Sam for them to sign a piece of paper to allow us to walk down the road to the shop.

Friday, January 19, 2007

So I rang on Tuesday to find out if Sam had arrived. If things were okay. If, perhaps Jane could visit.

The response was immediately positive. Such a change from where he has been - though they are part of the same organisation and come under the same management structure.

They seemed pleased to hear my voice - like an old friend at the end of the phone. As we have met people again they have remembered us from when Sam was there before. they seem to care.

Why does that seem so different? That they should seem to care?

Jane did visit. And they did seem to care.

Sam wasn't too well - but he was coping.

Jane had a long chat with the assistant manager. She knew Sam well and was thoughtful and supportive. There was a ward round the next day - did Jane want to come?

On the previous ward we had been refused admission to the ward round - yet it was the same consultant!

Thursday, January 18, 2007

I'll start at the beginning of this week.

On Monday I received a phone call to say that Sam was going to be transferred to the rehab ward.

This was where he had started out in the summer. He was transferred there, closer to home, as he was doing well.

We were on holiday, change causes him stress which can set off psychosis.

He relapsed.

We worried it was also because we were not there. That he felt abandoned.

The ward tried but could not cope with him so he was transferrred to a low secure ward. he's been there since then.

Until ...


Sam was told on Monday. (Though forgot and didn't understand why he was packing his bags on Tuesday.)

We were told on Monday.

The Assertive Outreach team and his care co-ordinator were told on ...

Well they weren't told.

Sam's psychologist turned up to find Sam not there. They'd meant to tell them ...

It's good that Sam is moving but it just shows the general philosophy that they not only didn't inform us but it never even seemed appropriate that we might have anything to contribute to the decision about the timing of his move.

As always we're out of the loop. They are the professionals. What might we have to contribute?

Wednesday, January 17, 2007

Is it really over a week since I posted?

Doesn't time fly?!!

By coincidence I had a phone call from Sam's psychologist yesterday. He'd just visited Sam after having heard a radio snippet about the football article I mentioned in my last post.

So he's going to take Tom running each week.

Sounds really good.

It could be that getting Sam out of bed might be the main problem!

No - I really don't mean to be negative. I think it will be really good if he can get it going, and Sam sounds keen.

There's lots more news this week.

I'll try to publish it in bits perhaps. I might be able to cope with it better that way.

Monday, January 08, 2007

Football tackles schizophrenia and depression
- An article in today's Guardian newspaper.

Sam has always enjoyed a game of football - and the notion is just right.

Psychology graduate and schizophrenic Benedetto Quirino was pestered by voices in his head until he became a rightwinger for Dr Raffaeli. "When you run out on the pitch, the voices stop," he said. "Your opponent is no longer inside you, he has come out and you can dribble round him and beat him."

Game of footie anyone?

Saturday, January 06, 2007

Sam told me he'd had a "ward round" this week - meeting with the consultant psychiatrist.

He says he's been told he'll be moving back to the rehab ward in two weeks.

Nobody has mentioned it to us. Well what would you expect? So we've no idea whether Sam has got the wrong end of the stick or not.

So again we have to phone them to find out ...


Then ...

... yesterday the ward manager phoned me to check Sam was coming home this weekend. I'd forgotten to confirm the arrangements and they needed to order the medication.

So I asked him about Sam and the move and he confirmed - yes the plan was for Sam to move before the end of the month. Because of all the progress ....

But today Sam has been home and not at all well at times. I don't think they notice on the ward if it is not exhibited by bizarre behaviour.

Friday, January 05, 2007

The other day Sam was taken some distance on a trip to a special museum. It seems that three staff went with three patients. It's good that they are happy that Sam is well enough.

But Sam is insistent that when they got there they spent most of the time in the cafe.

"Oh, and we went in the shop. That was alright."

It's just mad really. Mad.

Thursday, January 04, 2007

Written last night:

We phoned tonight. Sam seems to have had a busy day but he had little to say about it. he was more interested in the fact that he was again out of tobacco even though he left with enough for the week or longer. He looses it and gives it away. Even at home he can lose it and have no idea where it is. In hospital someone will soon pick it up. But there seems to be no system to cope with this. There is an expectation that these poorly patients can look after this themselves. Sam doesn't seem able to. And who can we discuss this with? The staff there either don't understand or aren't interested or both. When one drops Sam off at the door it is impossible to have a discussion with a member of staff as they could be anyone and you don't know who they are often and are just standing in the cold outside the door. We've complained and complained and have got nowhere.

So Sam's without tobacco again tonight. Probably has been since I dropped him off two days ago - but it puts him in a difficult power relationship with other patients who are lending him cigarettes.

I'm just fed up with it all.

I'm tired and angry and just want to give someone a bollocking and make them sort it out but of course they won't.

And if we just put in another official complaint ...

They can do complaint investigations about specific incidents but when it comes down to their general attitude and incomptetence then where do they start? They were at a loss when we raised it. They wanted to know who, where, when, what - so they could give them a bollocking. But we said it wasn't individual incidents it was management who had created the system that allowed it to happen.

And if we complain formally even if it is upheld - all we will get is a letter saying our complaint is upheld (or not). Nothing will change.

How do we instigate change?

How de we ensure that Sam is getting the support to help him get better?

Tonight he just sounded as if he had given up again.

Wednesday, January 03, 2007

I've written tomorrow's post already. I'm feeling angry.

So while I'm in rant mode here's a good perspective on todays ludicrous announcement.

Happy New Year

I'm sorry it is so belated.

We had Sam home for two nights over the New Year. It went well but perhaps not as well as Christmas.

We planned a quiet New Year's celebrations - but this was even quieter when my mum and dad decided the weather was so bad they didn't want to come out. So we all popped round to them for a short visit.

By the time we got back Sam wasn't coping very well.

A game of cards was soon suspended then the conversation turned to me being an evil sinner and how he had never felt my love.

I think this sometimes hurts Jane more than me. It can be the other way round when he says horrible things about her. I made it clear it wasn't true then left the room to relieve the conflict.

Sam suddenly decided it was time for bed.

Jane and I celebrated the New Year with a glass of champagne and a kiss then stood outside watching fireworks all around. I can't remember the last time we celebrated the New Year alone. In the morning we'd had a text from Nell celebrating the New Year earlier in Australia.

Of course Sam reappeared some time later for a while - and for some supper. He was up and down for a while but ended up sleeping so soundly that we hardly saw him the next day before he was due back. I think I managed to drag him out for a short walk but it was not for long.

Back to hospital - for what?

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