'schizophrenia'

- a carer's journal

Christmas went very well. Last year Sam disappeared the day we brought him home for Christmas. The year before it was the day we were supposed to take him back. This year there were no disappearing tricks.

I don't think I could have coped with it - I found it difficult enough the previous times. Apart from the emotional energy I've been feeling physically so tired again and just don't know how I'd have managed the rushing around trying to track him down.

But it has been fine. Better than fine. Really good.

When I picked Sam up last week he told me he had been crying. He was worried about how he would cope with relatives and friends over Christmas. He too wanted so much for it to go well.

I tried to reassure him but he became quiet in the car.

He did cope. He did much better than that.

He tried to be sociable - to act as "normal" people do. Okay much of what he said might have seemed nonsense to those listening but he was trying. He was trying so hard. The small party at a friend's house on Christmas Eve (why would anyone want to create left-overs the day before Christmas?) became a little too much for him so he announced it was time to go - so we did - then later that evening he settled and was fine again. He's coped with it all and enjoyed it.

Best of all he coped with going back.

Can you imagine? Christmas with close relatives and friends then being incarcerated again?

The next day - yesterday - a friend from his time at university who has also spent time in psychiatric hospital came to visit Sam. We went out for lunch. Sam was quiet. He often is but this also reminds him of what might have been, of what he is missing out on through being ill. It was good to see them walking together. Sam may have been quiet but he was out of hospital walking with a friend. Perhaps not happy but ...

... closer to normalcy.

I do hope you have all had a good Christmas - though I know it has been difficult for some of my readers.

This year it went well for us. At least Sam didn't disappear whilst with us - which is an improvement on the last two years. In fact it has been good. I'll say more later.

I got a Christmas present from Nell which was Alan Bennett's "Untold Stories".

It was only on starting to read it that I found the first chapter to be about his mother's admission to a psychiatric ward. He thinks it may have improved by now but sadly it has not.

In France last year Sam admonished us for ever allowing him to be admitted to a pychiatric ward. He sees it as when things started to go wrong.

Alan Bennett writes of seeing his mother in a psychiatric ward for the first time as follows:

"... Yet the change was so dramatic, the obliteration of her usual self so utter and complete, that to restore her even to an appearance of normality now seemed beyond hope. She was mad because she looked mad.

"Dad sat down by the bed and took her hand.

"'What have you done to me Walt?' she said.

"'Nay, Lil,' he said, and kissed her hand. 'Nay, love.'"

And then I cried.

I'm steeling myself to read the rest.

Christmas has often been a difficult time with Sam.

Last year he went missing on Christmas Eve I think - or maybe the day before.

A friend of Nell's saw him in a pub and we found him walking home from there throwing up in the street.

The year before he couldn't face going back to hospital and ran away on Boxing Day. He slept out that night in a back street behind Pizza Hut burning boxes to try to keep warm. The next day he got on a train and ended up back nearer to his hospital and got picked up by the police.

This year ...

... is going to be fine!

"I'm trying to be sane," he said.

He's trying so hard.

I picked up Sam this afternoon.

We have negotiated leave for him over Christmas until Wednesday.

When I picked him up Sam told me he had been tearful. He was emotional about spending time with family and friends over Christmas.

This evening he has been going in and out of psychosis - but he is trying to hold it together. I have a premonition that it couod be a good Christmas but ...

... we'll see!

I picked Sam up this evening (15 Dec - finishing this post later ...) for overnight leave.

He hadn't got back from his visit to the rehab ward so I sat in reception rather than waiting in the cold drizzle in the car park. In ten or fifteen minutes Sam was back with a friendly member of staff who then left me outside in the cold and drizzle while she took Sam in to sort out his medication and sign him out.

and

and

and ...

eventually Sam came out and we had an overnight where Sam was quite poorly that evening but much better the next day.

Just up and down

it's how it is

but I'm writing this later now - I'm afraid after a few days away.

I hope Sam's fine when I see him tomorrow.

Two recent Google enquiries that found there way here:

what are the proper steps to have my parent admitted to a psych unit

and

what's a good christmas present for a schizophrenic sister?

Any answers?

I still haven't managed to go round to our friends to apologise and say thank you yet.

On Monday Sam felt unable to join us at the table except for a few minutes. Jane scalded her hand badly and was in pain with it soaking in a bowl of iced water most of the evening - and me?

I was just knackered (technical term meaning very, very tired!)

I remember snapping at someone at some stage. I can't even remember who now.

But Nell kept it going - and our dear friends.

It was nice really.

In the end I had to throw our friends out as they were insisting on tackling the mountain of washing up!

It's good to have some friends who understand.

Few do.

We had a special dinner party last night for Nell as she is going to be away from Christmas again this year. Some old friends came round and we'd got extra leave for Sam.

It was late when I got back with Sam and we'd picked Nell up from work on the way.

Jane had tried to start sorting out the Christmas tree that Nell had bought with Sam at the weekend. It was now in a pot and only slightly wobbly.

By the time I had carried it through to the living room it was even more wonky!

Sam was disconcerted by the whole thing.

"Shall we just leave it as it is? I think that's fine."

To

"Let's just take it back outside."

The boxes of trimmings from the attic:

"I'll help you put them back."

Sam clearly isn't in a Christmas mood yet. I suppose any change can be hard.

Sam was looking rticularly mournful yesterday. I eventually tried to get him to talk about it.

"It's becuse I keep going mad."

"How often is that Sam?"

"I go mad every day."

In a way though it is a sign of progress, that he can see that osme of the tie he is not mad and not only recognises his madness but doesn't want to be there. It's what the professionals call "insight".

But it is so hard and so dpressing for Sam. Often it is much easier to be poorly than to be well.

There has been so much on the media about the number of people killed by people diagnosed with schizophrenia. Less about how many more kill themselves or are killed through their own madness.

So much less.

Lots about how important it is that they kep taking their medication.

Nothing about the fadt that when they stop taking medication there is a rebound psychosis efect that makes them "mad". It is the withdrawal from the medication that causes the problem. if they weren't on the medication in the first place there would be no withdrawal. Psychiatry has caused this problem. If a patient shows symptoms then the medication is increased - up and up and up ...

... so that if they come off suddenly the reaction is all the greater.

But the solution is seen to be make them take their medication. it has become a mantra. it is seen as the sole purpose of carers and mental health professionals in the community.

Why has no action been taken on research that shows there are better and more effective avenues of support than medication.

It couldn't be anything to do with those oh so powerful drugs companies could it????

Nell took Sam back on Sunday evening. Two came to the door to collect Sam. One was a small nurse - the other looked like a bouncer.

Sam was ignored. Nell was rudely asked,

"Has he been alright theis weekend?"

Yes, he's been fine."

"Right."

And with no more ado he was bundled inside.

Somebody has clearly read Sam's notes about his aggression!

It was intresting though that Nell straight away commented on the rudeness of the staff - so it's not just us.

Sam was home Monday night - a special and additional midweek overnight leave that we'd managed to get agreed. Though after it has been agreed nothing was written up so it took several more days of discussions to get it finalised.

A party.

(We didn't tell them that. An event I think we said.)

A party by a local mental health campaigning group. Sam was with friends. He was so well. He really seemed to enjoy himself. And if he was a little bit mad - well don't we all go a little bit mad at parties?

He seemed fine again the next morning - until in the afternoon taking him back to detention ...

Detention because he is ill.

There must be a better system.

Sam tore a cigarette paper into strips then held them together like a flower.

"I just went into the void."

"Recently Sam?"

"No, some time ago. Have you done that?"

"No, Sam."

He's not been too good this weekend. They have reduced one of his antipsychotics down to zero so he is now only on one anti-psychotic which is much better. BUT - they have reduced it too quickly. Of course we know nothing - they are the professionals.

"I see peoples deaths all the time. I've just seen your death."

"That must be really worrying Sam."

"No. It's just cool."

At the CPA meeting on Thursday I had taken issue with a care plan that related to Sam's violent and aggressive history! (???)

A few months ago when in one of his manic states he pushed a very large member of staff out of his way in his attempt to climb the fence. The member of staff said he had hurt his back and had a day off which has to lead to innumerable reports (as I know from my own past as a manager, if a member of staff has to take time off work as a result of an incident at work. )

So Sam now has a history of aggression that requires a care plan.

My points were noted but it seems that Sam's notes are unlikely to be amended.

But then that very evening - after we had been shopping with Sam and on for a meal when he had been so well - there had been an "incident".

"Incident" is any psychiatric ward's labeling of anything at all out of the ordinary and lead to lots more paperwork which ensures staff have no time to spend with patients. However "incidents" are definitely to be avoided as they label patients very negatively.

Well I got a phone call the following day. There had been an "incident". We had forgotten to take Sam's cigarette lighter off him before he returned to the ward where they are banned. This is the second time we have done this. We are very bad carers.

Unfortunately on this occasion Sam was seen lighting up in the corridor. Staff confronted him and the story is that Sam, threatened to thump a member of staff. So Sam was "restrained". You may not know what "restrained" means in practice. It sounds so reasonable.

If a patient appears unreasonable or fractious a personal alarm is set off and staff come running from all over the hospital. I'm not sure about this hospital but I have seen it elsewhere. I have seen a middle aged woman being rude to a nurse and the alarm being set off. Of course she became immediately compliant. It's the power!

Once when Sam was very ill I was taking him back on to the ward and he made some martial arts poses as if he was going to hit me. Behind me someone set off an alarm and people came running in from all over. I held out my arms to give Sam a hug. Fortunately Sam responded and gave me a hug back, it's difficult to justify restraining someone for hugging their dad so all the staff slunk back to proper work.

Once before Sam was "restrained" for refusing to return to the ward and waving a crutch at a member of staff. (He had a broken leg at the time.) Four members of staff landed on him, dragged him to his room, held him down (the smallest nurse sitting on his leg totally against all such rules) and injected him with a tranquiliser. Because he refused to return to the ward and waved his crutch at a nurse.

But on this occasion Sam was "restrained" for lighting a cigarette in the wrong place.

I spoke to Sam about it yesterday. He says he didn't threaten staff but was attacked by aggressive staff. Who to believe?

I want to get the ward manager to talk to Sam about it and get his story. Otherwise the notion that he is an aggressive patient will just grow and grow. Perhaps it will anyway.

After the meeting on Thursday we went to Tesco's with Sam and had a cup of tea in their cafe. Sam was subdued but he'd come round a bit.

I reminded him of a theory I'd ventured during the meeting that he needed more sleep and if he was woken eack morning he might get more manic and sleep less the following evening rather than more ...

"Was that right Sam - or was it bollocks?"

"It was bollocks!"

And we both fell about lughing. It's the first time I'd seen Sam laughing so naturally for a while.

We decided many of my other comments were bollocks too! Then we went to try to find Sam some slippers and new trainers. Sadly in Tescos they only seemed to have pink, glittery little girls' ones. Sam wasn't to be persuaded! So we walked into town - well Jane and I walked across the pedestrian crossings whilst Sam leaped over the barriers and rushed betwen the cars. Then we found a clothes shop with a few men's shoes - and piles of slippers!

There were some lovely suede and leather ones and sheepskin ones - just so nice. So Sam chose instead some blue ones with an image of Homer Simpson drinking beer on them at only twice the price of the really classy sheepskin ones. He even queued up to pay and walked down the road looking for somewhere we could look for trainers. We found a designer men's shop which had some ludicrously expensive shoes and specially designed trainers. But Sam picked out some that looked really good and weren't too expensive.

"Can I have these in a size 9?" he called to the assistant confidently.

Soon the assistant returned.

"I've only go them in a size 10 - or these white ones in a size 9."

Sam tried on the size 10s.

Thank goodness.

He was wearing socks today!

He slipped one on.

"That fits fine. I'll have them!"

We persuaded him to try on the other one and fasten the laces and even stand and walk about a bit to make sure they didn't slip off - but they seemed okay and he was determined. So we bought them.

Then strolled through the dusk to the car and on to a pub for an early evening meal.

Sam suddenly became alive and talked about his experiences. We talked of how it was sometimes difficult to talk honestly about this as some took it as evidence of madness whereas it was really evidence of him getting better.

"They write down 'shows insight'," joked Sam showing his knowledge of the jargon and how it is used by the professionals.

Just "bollocks!" we agreed.

We will be monitoring whether plans agreed for Sam yesterday take effect. But why should it be up to us?

Who should be monitoring the Health Services expenditure of £600 a day for each patient? How do they know if it is effective?

Private psychiatric hospitals are making millions. Toms psychiatrist is also a director of the hospital. He's taking his cut alongside his fees - not to mention his NHS salary.

The whole set-up stinks.