'schizophrenia'

- a carer's journal

Sam described yesterday how he needed to have hope. He had to be optimistic, to believe he was going to get better ...

... otherwise he knew he would descend into total madness.

When Sam phoned early this evening he sounded a little quiet, unsure, lacking in confidence.

He'd had a "blip" again yesterday. Rushing thoughts, confusion ...

"How did this manifest itself Sam?" - ie had he absconded, burned the place down, been rude to matron!

It seems he had gone over the wall but been brought back soon after.

It had all left him very frightened though.

I tried to encourage him to see it as progress that he could have a blip that only lasted twelve hours, recover from it and recognise what had happened - as real progress. Once upon a time such a blip could have lasted for days, weeks or months - and for him to have no understanding of it. But it frightens him when this happens now he is getting better.

"Can I come home tomorrow? I feel much more secure at home."

Well we'll see. Need to find out the ward's version of events and whether they're letting him out this weekend at all.

On phoning them there seems to be no problem. They didn't notice he was poorly. They thought it was a problem about someone stealing his tobacco ...

So ...

???

Jane was going to visit Sam's ward yesterday with Sam's local Care Co-ordinator. So Sam had an extra night at home staying over on Sunday night as well.

He had to get up early but managed that with no problem and was bright and alert. On the drive down he sat in the front with the care coordinator and was able to talk articulately about the current situation, plans for the future and what had happened when he had to be found at the pub last week.

On the ward Sam's care co-ordinator met with Sam's new Key Nurse - who seemed to know very little. She asked to see records and meet with the assistant psychologist and the occupational therapist.

She was appalled by what she saw and heard. There were clearly not plans or activities organised for Sam and nobody seemed aware of how he was or what should be happening. She couldn't believe it when Jane told her how much worse it had been last year in the secure rehab ward where Sam was placed then!

So she is going to get Sam moved soon if at all possible to a rehab ward nearer home. Sam's been there before. It was good. But he needs to get off his section first as this ward will not take him while he is still sectioned.

The bad news though was that the psychiatrist who lied to us when we met him before Christmas is now working for them full time. Perhaps we should have sent that letter of complaint after all.

The Mental Health system is often described as the Cinderella of the National Health Service - but I liked this quote from Mick Fury on the Carers' Forum:

"I don't agree that MH is the Cinderella of the NHS. Cinderella got her
man in the end. MH is more like the Ugly Sisters, unwanted and
despised."

Jane picked Sam up today - he's home for the weekend.

Sam and I went for a short walk this afternoon near some of his old climbing haunts and looked at how hard it all was.

Later we had a cuddle on the sofa and talked about ...

... stuff.

In the evening we went to a friends house for dinner - which was great and Sam enjoyed it. Then asked to go home as he was tired.

Maybe partly because of the extra glasses of red wine he had sneaked today when he thought nobody was looking.

I spoke to Sam on the phone this lunchtime. He was fine. No idea what had happened yesterday or why. He'd just had these funny thoughts in his head again that he couldn't control. He knew now it wasn't sensible and couldn't understand why he'd done it. It was good to hear him sounding so sensible. There was no point in having a go at him - as he knew it all.

So I rang the ward staff. They were "in handover". You need to know that ward staff on any psychiatric ward are always "in handover". If they are talking to each other it means they don't need to talk to patients or carers. Could she phone back ... ?

An hour or so later she did. I haven't spoken to Sam's new Key Nurse before. She was a little more formal and distant that the others there. I wanted to ask about Sam's leave at the weekend. She had told Jane yesterday that it was cancelled but after a discussion with Jane that it might be reviewed. We want them to avoid a punitive approach to canceling leave.

So I said I understood she was "unsure" about Sam's leave at the weekend.

"No." She wasn't at all unsure. The leave had been cancelled. But if Sam remained well up and until Saturday morning it could be reinstated.

This all seemed very negative. To say that if Sam remained well of course he could continue with his leave would have been a much more positive and helpful way of saying exactly the same thing.

Do we have to train all the staff we come across in public relations - or even just common courtesy and humanity?

A phone call this afternoon. Sam had taken his half hour unaccompanied leave as usual. This has been going well for the last week or so since it was allowed.

But today he had not returned. They went out to look for him. It's easier than calling the police. They just come round with forms for you to fill in that take at least an hour. It keeps them off the streets and away from having to actually do something rather than report and record it. Meanwhile the staff can't look for Sam because they are so busy helping the police be busy at not looking for Sam.

So they just had a look and found him in the pub.

Seven pints of beer they reckon he'd had.

I'm not sure who was counting. Was this Sam's estimate or had they interviewed the barmaid?

And where had the money come from ... ?

We leave money for Sam in the office and have had a long conversation with Sam's associate nurse about reasons why we try not to give Sam access to significant amounts of money. But on Monday Jane forgot to leave some money for Sam so that he could buy tobacco etc. So Jane rang and explained and it was agreed we'd send a note in the post to the office for them to look after with a card for Sam to explain.

But maybe the money went straight to Sam? I don't know but it seems likely.

His leave this weekend is in doubt as a result of today. Sam has a new key nurse who also is a new senior member of staff and she seems to be trying to emphasise disciplinary issues - as opposed to care issues, despite the fact I think she is in charge of "care" or suchlike.

Jane's out all day tomorrow so I'm going to try to phone to sort it. If I can think what to say, keep a straight face and just not get into a state about it all or forget what I'm supposed to be saying. I'm going to try to write myself some notes.

But when we are saying Sam has a better understanding of his current situation and what he needs to do and then this happens again ...

... it doesn't help. But that's what it's like. All the time.

Sam's key nurse was passing those kind of judgments today. It doesn't help.

Not at all.

Sam returned to the ward today pleased about his new stereo that he took with him.

He'd chosen it himself from a comparison magazine he bought last weekend. I'd found a store that stocked it and bought it for him (from his money) during the week. We enjoyed setting it up and getting it working and comparing it with mine.

He seemed dead chuffed (Yorkshire for "He was quite pleased"!)

He also went with Jane to a meeting with other service users and professionals today. He didn't contribute to the discussions but he coped really well with the situation. He introduced himself with confidence as a "service user".

He popped out for a couple of ciggies and chatted with various contributors to the meeting out of the session. It's just good to be able to cope in such social contexts - where he knows he is not going to be judged as a "service user" but also is able to cope with chatting with people who will listen and understand.

He slept in the car all the way back to hospital. Maybe not just the effects of the medication - but also the little beer and wine he shared with us and friends the night before. But again - he enjoyed the social situation.

If you are going to be "normal" you've got to practice it sometimes.

I picked Sam up again on Saturday. He has leave overnight every weekend now. Unfortunately I was a bit late as there had been problems with the car. He seems quite well if a little quiet. He volunteered the fact that he had felt less well on Wednesday - what he described as racing thoughts. So he took himself to bed and when he woke up felt better again. Though the experience had left him depressed. He so wants to be better now.

He also recounted what another patient had said about the doctor. After a meeting with the doctor he was leaving. When the he thought the patient was out of earshot the doctor had said, "Right! Lets get out of this madhouse."

Tom was clearly shocked that the psychiatrist could treat his patients with such disrespect.

Me - I'm sadly no longer shocked by such attitudes from the psychiatric profession.

A new Yahoo group has been set up that aims to be for:

"for support and information sharing to unpaid carers (family, friends or relatives) who provide care and support to people who have a mental health problem, carers support/development workers, mental health organisation/charities anyone else who has an interest in this area.

Offering support, better comminication and the sharing of information including events in your area that could be publicised via the forum."

I am not a member but I understand that it already has a very lively and active message board. You may need to join to view or take part.

However I guess that many of the issues that I raise are being discussed there.

I was really not at all well for most of last week. The remnants of the cold I couldn't shake off on top of the ME symptoms - then I had a bad ME attack which laid me low for a couple of days. It was worrying as Sam had something special on at the weekend.

It was a friend's wedding. Sam had been at school with him. Had traveled the world with him before university, climbing. The friend had visited him in hospital and introduced his girlfriend. He was so kind in inviting Sam to the wedding. He was keen for Sam to be well enough to attend.

Sam desperately wanted to go as well. Since he'd been well it all seemed possible. We'd arranged leave, booked a hotel, confirmed our attendance - and then I get poorly.

I dragged myself out of bed early on the Saturday morning. As the day went on I managed fine. Sam was ready when we picked him up and quickly got changed.

He seemed well and the day went well too. He clearly enjoyed seeing his friend getting married and was relaxed at the reception. As the day went on though it all got a bit much for him. At the best man's speech he was quite distressed. Partly it was listening to him talk about events regarding Sam and the groom's round the world trip. Sam had met the best man half way across the world.

It must be difficult to think back to those happy times and see his friends moving on in their lives whilst life is just passing Sam by.

We persuaded Sam to leave soon after and went back to the hotel. It took some efforts to keep him calm until it was time for medication and bed. But it was all managed and Sam went to bed but took hours to get to sleep. His head was still buzzing.

In the morning when he awoke he said, "I wasn't too well last night, was I?"

It showed he was well again - and showed how well he was that he was able to recognise his little blip the evening before.

But he'd done it. Gone to his friend's wedding and enjoyed it.

We had a lovely time with Sam over the New Year. He was quiet but seemed to enjoy spending time with us and his Granny and Grandad. No big parties - but a drink at the pub with his Aunt and her friend and nice time with family mainly.

He was sad to be gong back though - just doesn't want to be there really.

We'd talked lots about his section coming to an end soon. What might happen. The implications ...

So today Jane rang to find out what was going on.

The consultant renewed his section on 19th December at a ward round. But we met him on 23rd and he talked of "If I decide to renew his section."

Sam knew nothing of it. Sam's nurse new nothing of it. Sam's care coordinator knew nothing of it. We knew nothing of it.

And on 23rd he didn't see fit to tell us.

Who are these people who think they can behave like this with responsibilities for other peoples freedom?

Sam's home over the New Year. He's doing well and it's all going fine. I'm still full of cold and aches and pains but am about to try to drag myself outside with Sam for a short while. I just wish I was feeling better and able to get out more to enjoy this time with Sam.

Wishing all readers a very Happy New Year with best wishes for 2006.