'schizophrenia'

- a carer's journal

It was Jane's idea.

Sam's cousin was visiting this weekend. She is a talented musician. Jane suggested she bring her violin and take it when she visited Sam and play for him - and others who want to listen.

She thought it a good idea and it happened.

After a while Sam asked,

"Can we have some quiet now."

Later his aunt asked him what he had thought of the music.

He said,

"There was magic in that room."

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

There was magic of different sorts in different rooms during the visit.

Jane got into Sam's room where the curtains were drawn dark.

It smelled.

A pile of wet and dirty clothes were laid on top of his clean duvet cover on the floor.

A single sheet only half covered the bed.

All his clothes were in bags from his move from his previous room. He had been moved closer to the office he easier to observe when he was on one to one watch twenty four hours a day.

The last time Jane visited she noticed the armchair outside his room with a magazine stuffed down the side. The nurse observing him had clearly had time to read but not help or encourage him to unpack. He had no toothbrush, toothpaste or shower gell unpacked so he hadn't brushed his teeth or been properly washed for at least a fortnight.

She took it up with his named nurse, the deputy ward manager in the office.

She was apologetic.

There was no way to defend the indefensible.

Jane was wild.

This was one of the issues we had raised in our formal complaint. Nothing had improved though we'd developed some confidence in his new named nurse.

The nurse wanted to know what we were going to do. Jane said she wasn't going to make a formal complaint now but if it wasn't sorted by the next time she visited she would be doing. The nurse was clearly very scared. Jane made it clear it wasn't just Sam she was talking about.

"What about all those other clients who don't have family coming and trying to help them?"

While Jane spent some more time with Sam the named nurse cleaned and sorted his room. That wasn't the point. Whose reponsibility was it to help Sam do it? As the assistant ward manager she has some responsibility to ensure those systems are in place.

Jane just went for her at the end.

"This place is crap," she shouted as she walked out.

"It's the worst place he's been in.

"It's crap!"

Nell had gone back in with her to have a go as well. She didn't want it to seem to be just Jane ranting. Sam's cousin's and aunt all recognised the appalling nature of the place and the lack of any engagement by staff.

Prisoners are allowed a better environment.

They'd had to push hard to be allowed outside to play basketball with Sam. It was the one time he came alive during the visit. But when they had to leave there was nobody available to stay out with Sam. They had to help get dinner ready.

So much money is being poured into this place and for what???????

We'd just sent a positive email to Sam's care coordinator saying we thought they were trying to work as a team and to give them a chance.

Can we retract it only a few days later?

Sam's cousin's and aunt were shocked by what they had seen and so saddened to see the Sam they loved so confused. It was reassuring though to know that it wasn't just us.

While all this was happening I was at home, resting.

(Well actually I did get a meal for six ready that was very much appreciated - just in case you thought I was doing nothing to support this weekend.) :)

I had another of my ME attacks last night. That's two in as many weeks which is not normal for me.

I'm still in my dressing gown and feeling pretty groggy. We've got relatives staying for the weekend so it's all a bit embarrassing really.

I saw a psychiatrist on Thursday from the Chronic fatigue Clinic.

I felt quite well when I went in but an hour and forty minutes later at the end of the "assessment" was really drained. I've tried to keep going though and maybe my bodies telling me to slow down again. So back to bed in a second.

Sam phoned a little while ago.

He needed to phone the Dali Lama. He'd had an appointment with him and Paul McCartney some time ago some time ago but neither had turned up.

The last couple of days I've been really tired - still recovering from my ME recurrence. I didn't want to get out of bed this morning but we had a meeting at sam's hospital. I'd gone to bed at eleven last night and I was still tired at nine this morning as I dragged myself up.

The meeting went really well.

Sam's new consultant had invited us to attend any ward round that we want. I think he's frightened of us now that there has been a complaint and they are looking carefully at ways to improve communications.

So we both went to today's. It was the first we've been invited to and Sam is so poorly.

It was good.

They were working as a team.

Previously the consultant held forth and everyone else sat in silence. Here nurses and Occupational Therapy staff knew that their input was valued.

We felt that our feelings were valued as well. And Sam was treated with respect by everyone, even when he behaved in unconventional ways and was critical of the process.

He wandered in and out. He commented on the strangeness of having a group of people in a meeting the function of which was to talk about him. He emphasised the fact that he believed himself to be totally sane. Towards the end he suddenly came to life talking about climbing.

This as the first time I've heard mental health professionals recognising that what could be partly causing his illness is his confinement. It's there to keep him safe but if it makes him poorly it puts him in danger.

We may have the start of a dialogue here.

Afterwards we kicked a ball around in the yard. Another patient joined us. They were having fun. The staff observed through the window probably thinking we were as mad as the patients.

But if you'd seen Jane trying to kick the ball past Sam wearing her long scarf and that silly hat - well you might have thought so too!!!!!!!

I saw Sam on Saturday.

When I arrived I asked to go out into the courtyard with him. They weren't sure, but after some consultations it was agreed. One of the problems was that a member of staff would have to accompany us. It was cold. He'd have to put his coat on.

We went out and kicked a ball around.

This was great.

What has Sam got to say about his current life?

There's not a lot goes on - so it's that one way forced discussions that you get in hospitals and prisons but nowhere else.

It's better just to kick a ball around.

Sam loved it.

His face lit up - and his feet had remembered all those little dribbling tricks from when he was a young teenager playing football at school.

After a while we left it and just walked back and forth across the courtyard chatting about this and that but without the pressure of facing each other in a closed room.

Sam got fed up and decided to climb up the basketball post. The burly nurse wrapped tightly in his coat started to march towards us. Clearly not allowed. After all Sam might have got to the top and dived headfirst to the ground in an attempt to kill himself.

The male nurse looked like a bouncer. No smile. Just someone doing his job - not allowed.

Sam calls them bouncers. The male nurses and security staff.

It's not a prison but Sam has fewer rights than a prisoner.

In a prison he would be allowed out for fresh air every day.

Here they are grateful that we have suggested it as a good idea!

Sam's care co-ordinator rang from the Assertive Outreach team on Thursday.

He didn't really have anything to say - he was just trying to keep in touch and be supportive.

That would have been okay except he didn't seem to know anything about Sam's current condition. He didn't know about Jane's conversations with the psychologist in his team who felt the current hospital was all wrong for Sam. He didn't know Sam was on a twenty four hour, one to one watch.

They keep on telling us how they work as a team and most of the day they seem to be in hand-over meetings to ensure they all know what's going on but he seemed to know nothing.

He's only supposed to be co-ordinating all of this.

Look.

None of this is meant to be fair.

It's just my perception of everything.

All right?

When Jane saw Sam the other day he was clearly not at all well.

The new ward doctor seemed young, approachable, slightly trendy and very nice. He'd listened and spent a lot of time with Jane.

But towards the end of the meeting he pointed out that we had to recognise that Sam could get worse rather than better.

It wasn't what Jane needed to hear that day.

Not at all.

It was what finally brought her to tears.

She rang me from the car as she was about to set off.

I hoped she would get back safely.

When she did she had composed herself and after a short nap and something to eat was able to go out to meet friends whilst I composed a message for here not knowing the electricity was about to fail ...

Last night I was writing a wonderful post on here - really I was! How could you doubt it?

And then ...
- guess what???

We had a power cut.

It was really windy and suddenly all the lights, computer, everything went off.

Where was the nearest torch? Well it wouldn't have batteries in it that worked anyway. So I crept in the pitch black through three rooms, searched by touch in a drawer and eventually found a box of matches. Fortunately we have lots of candles around so the rest was not too difficult.

I then had a romantic candlelit evening alone (sigh!), apart from a bottle of red wine, reading a novel sent to me by it's author - a reader of this blog!

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

So can I make the rewrite as good as the original?

Well there's only one way to find out ...

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


Jane went to the hospital to see Sam yesterday and to talk with the ward doctor and Sam's named nurse. She had to stop off in town first for a meeting which was interrupted by loads of phone calls so that was all a bit of a disaster.

I got a phone call from a Jane at the petrol (gasoline - I do attempt to be bilingual on occasions) service station just before the motorway (freeway????)

Where was the handle you had to pull to open the bonnet (hood - look I give up now, you Yanks will just have to work it out for yourself) of the car because I was the one who found it last time we couldn't find it because they hide it away so it's impossible to find and I'm not there now to find it and she needs to fill the windscreen wash reservoir because it's empty and the windscreen is dirty and she can't see out and we've run out of fluid and she's just bought some but if she can't even get the bonnet open and even when she can how is she going to get it in when it always spills all over when she does it which is why we keep that funnel at home especially for that and her meeting was interrupted by all these phone calls from Sam's psychologist and from work except she hadn't got the calls at first because I'd put her mobile phone onto silent for her last night so it didn't go off at a meeting she was going to except it was the wrong week so nobody was there and when she tried to change it back so it rang it just kept turning off because the way I'd showed her how to do it didn't work so she'd had to ring Nell at work who'd carefully and patiently explained to her exactly how to do it which worked easily and which was different from the way I'd told her so I'd obviously told her wrong but at least Nell knew what she was doing and how was she going to talk to the doctor and the named nurse when she was in such a state and as I wasn't there she was going to ask this taxi driver how to open the bonnet because at least he was there ...

I only discovered later that Jane had tried to ask three friends separately to accompany her.

But not me.

But then recently I've been as much use as ...
... well fill in your own favourite phrase or saying.

I've spent more time in bed than out of it since I last posted.

It's my ME symptoms again. It really is just like flu. Sunday I was confused in the way that you are with a high temperature even though my temperature was only slightly raised. All the other symptoms were there in my body - all the tingling and aches and pains in the muscles. I've been fuzzy in my head - but without the severe headaches that accompany flu. I even have that sensation of my skin being tight and stretched across my face.

I can feel myself getting little better again now, and I guess it's no big deal compared to what many people have to put up with every day. I sometimes feel a wimp and foolish going on about it. It does get depressing though - and Jane reckons it is depression that causes it.

She's worried about Sam and needs my support and I'm just mooching around looking fed up which she can do without.

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

We then had some more worrying news about Sam today.

The staff on the ward are very worried about him. Worried enough to put him on a one to one watch 24 hours a day. He'll even have someone sat outside his open bedroom door while he sleeps.

At least they are keeping a close eye on him and have recognised how poorly he is. Following the change in consultant they aren't just pumping him full of yet more drugs to try to control it.

We believe that it is probably withdrawal symptoms from the Clonazapam as this is being reduced. He should never have been on it for so long with little or no reason. Something similar happened to him some years ago at home when he came of Lorazapam.

I'm on my way to bed.

Just back from seeing Sam with Nell.

Fortunately she drove. Coming back I fell asleep. I've not been too good for a few days and this evening when I climbed out of the car none of my muscles seemed to want to respond.

I had a nice evening out last night - a birthday party for a friend. maybe the alcohol kept me going and I'm paying the price now.

Anyway - must go.

Sam was not at all well.

On Thursday Jane rang the ward.

We haven't really talked to anyone from the ward for a while - and if the local Assertive Outreach team think Sam is really poorly after one visit what do the ward staff think. They haven't told us this.

We haven't spoken with Sam's named nurse since before Christmas. Jane rang to find out when she was next in duty.

She's quit.

She was off sick for five weeks and they received her letter of resignation a few days ago.

Makes you wonder!

I feel sorry for her too. It's as if that place is destroying the lives of people who work there as well as the patients.

Jane spoke with the ward manager. They're clearly worried about Sam - but haven't told us and clearly have no idea of why he might be getting more poorly again. She did say that the new ward doctor - associated with the change of consultant - has seen a lot of Sam recently.

Jane asked if he would phone us.

He did later.

Jane was very reassured. She felt he was already beginning to understand Sam in a way that the previous ward manager had not. Between them they have begun to wonder whether Sam may be avoiding taking some of his medication - perhaps keeping it under his tongue and spitting it out later. He has done this before. Some of his medication is supplied in velotabs - they dissolve in the mouth and are more difficult to spit out. But it seems that not all of his medication is available in this way.

I had a call from Sam's care coordinator on Wednesday.

He's been to see Sam together with Sam's psychologist.

They were both shocked at how poorly Sam seemed.

I guess hearing it from us isn't enough. They have to see it for themselves.

Always, all professionals.

They have to see it for themselves.

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

So they are now thinking about alternatives ...

... but what.

The frying pan or the fire?

When I was talking with Sam on the phone the other night he kept moving between rationality and incomprehensible philosophical discussions about some of his obsessions.

I challenged him about this.

At times I believe he can choose whether to be rational or not, whether to be "sane" or "mad".

He once talked of waking up each morning and having to make such a decision.

Sometimes it's easier to inhabit the "mad" world. Especially if you are living on a psychiatric ward.

The other evening he seemed to sometimes find it easier to move into irrationality to avoid answering some deliberately challenging questions I was asking him.

I suppose I was stung by his remarks again about being "put into a mental home".

I challenged him about whether he was doing all he could do to get better rather than finding others to blame for his present situation.

A few months ago I met an amazing young woman. She was very attractive and had a stiking individual style. She was self confident in discussion and in the way she presented herself. She was training to be a psychologist. She was jointly running a training session for mental health professionals.

She had been sectioned on a number of occasions. She'd been diagnosed with schizophrenia. She had self harmed for a number of years. I could see the scars on her arms. She described being just a drooling wreck in hospital where she had got worse and worse.

Until one day she had some self-awareness where she could see herself as she was and decided she had to get better.

It was a long journey and there were many setbacks. But with the caring help of sympathetic professionals and a caring, non-judgemental mother, she became well enough to start post-graduate studies.

What struck me was the decision she had to make to get better. She had to want to be sane.

It's probably a stupidly simplistic analogy but I can remember giving up smoking twenty five years ago. I'd found it hard to give up smoking - because I didn't really want to. I'd tried lots of times but ...

Soon after Sam was born I did give up smoking. It was easy. I wanted to. So I did.

If Sam is going to get better, first he has to want to get better.

"Why did you put me in a mental home?" asked Sam when he phoned last night.

"Everything was alright until then."

This has been a recurring theme in recent conversations with him.

We can only agree that it hasn't worked.

He's still not well.

Would he be any better if he had never been sectioned?

Been back a short while from visiting Sam today so I'm a bit tired.

Jane's been with Nell today in town in the sales so she's even more tired!!!!!

So no sympathy for me - but I'm sitting here typing whilst Jane is getting us something to eat.

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

Just eaten and done the washing up - so completely lost my train of thought.

Sam seemed well.

Quiet - but no statements that were particularly psychotic.

Lots of time contemplating inner thoughts and occasional inappropriate smiles and expressions at what was going on in his head - but otherwise really sane.

We started in the pub for lunch and that went well.

I'd almost put off going as the winds were so strong and I have to take an exposed route alongside high lorries (trucks for any American readers :) ) I'd laid in bed listening to the angry winds swirling around the house and became frightened by the sound of slates falling from the roof and having listened to the weather warnings advising against unnecessary journeys I decided to go tomorrow.

But when I got up it sounded calmer - so I went, even though it wasn't calm on the motorway!

At least it was fairly quiet as everyone else had heeded the warnings.

As Jane wasn't with us, although I no longer smoke (since soon after Sam was born) I suggested we sat in the smoking area. Then at least I didn't have to supervise Sam going out for his cigarette.

He chose a window seat. The sun had come out and we sat in direct sunlight, warm and cosy. The coins in my pocket warmed so much that they felt quite hot when I went to the bar.

By the end of the meal I decided Sam seemed quite well and suggested we went for a walk as the sun was still shining strongly.

We had a lovely walk and then Sam spied some rocks. It was a small quarry and he was determined to climb.

Climbing isn't just a physical activity.

It's a mental activity also.

It is all about problem solving.

Not just one but lots of problems that need to be solved and put into order - kind of like a crossword puzzle.

I'm no good at crosswords either.

But I watched Sam looking at the rock for holds, puzzling where to put his fingers, toes, knees, any part of his body available to give him security and leverage to move to a new position where all those positions needed to be worked out again.

But if that didn't work then he had to revise the previous position again.

You can't do that if you're mad.

Perhaps I'm wrong.

Maybe you can only do that if you're mad!!!

Later as we were walking away Sam put an arm round me and kissed me on the cheek.

It is the first time he has shown me an impulsive act of affection for some time.

I looked at him and he beamed at me.

Earlier we had been sitting quietly between his climbs. He looked at me and said,
"Why was I put into a mental home?"
It was difficult to find a true answer.
"I was happy before then. Now it's all gone wrong."

And ...

Well...

I find it hard to disagree.

He didn't want to return.

We walked through a lovely village I'd not seen before but without the time to appreciate it as I worried about getting Sam back and he worried about returning. He suddenly turned in a different direction and I worried he was going to run off again.

Back to the car.

Driving back the sunshine was behind us and a new black cloud rose ahead.

Back to the hospital.

Well - I don't need to spell out the allusion.

Back to the ward.

Except they wouldn't let us in.

Someone was kicking off on the ward and there was nobody to come to the door. But Sam didn't turn away again. He just put back on his "poorly" face to fit in with his companions on the ward until her was let in and I set off for home.

Jane visited the hospital today to discuss the complaint.

The initial investigation had been completed. Jane took an advocate with her who works at the hospital and who shares most of our concerns as she sees the same problems day in and day out.

There was a lot of nit picking about individual facts and if the consultant has said something is the case that we know not to be so it seems it is not possible to question his word.

By implication though the truthfulness of our statements is being questioned.

Overall though Jane felt there was some success. We're not trying to get anyone into trouble. We just want to improve things.

A couple of things are being put into place already.

Carers who want it will receive a weekly phone call from the named nurse to keep up to date. At least monthly there will be a meeting with the consultant or ward doctor or at least a phone conversation. This isn't just for us but will be offered to all carers.

It's not enough.

It shouldn't have to be formalised.

If the system was working properly and carers interests and needs were being taken into account such meetings and conversations would be happening as a natural process.

But it is maybe one small success and improvement.

Well done Jane.

You've probably all taken down your Christmas decorations long ago.

We always wait until twelfth night.

I always wanted to make Christmas last as long as possible.

It's a time of sparkle and magic. I can't understand wanting to discard it sooner than necessary.

I've often thought that I would like to have a twelfth night party each year to enjoy that length of time with others - but it has never been practicable.

Why is it strange to want Christmas to last later when it now seems the done thing to start it sooner and sooner, which I hate?

So I've been spending most of today taking down the tree decorations, Christmas cards, the holly and ivy and mistletoe (the mistletoe never seems to work as efficiently these days - perhaps it's my age!)

It's so sad.

The house looks so bare.

So I've been spreading flowers and flowering plants around and trying to make everywhere look nice.

Jane has been at meetings and Nell has been home from work poorly with a cold that has lasted for weeks. So I've been doing it on my own - so not everything is tidied away yet.

I've found myself drained and aching again. Maybe I'm just sad for the loss of Christmas but I found myself losing patience with Jane. Maybe it was the additional factor of the bank statement arriving this morning.

Anyone need any odd jobs doing?????????

Today ...

... well, today I've done very little.

I got up early though.

Well, okay - it was half past eight. I know that is a lie in for most of you. It used to be for me. But I had to drag myself out of bed even though I had slept for nearly nine hours.

Once I got going I was okay. I dropped Jane at the station and then took my car to get a new exhaust. It was guaranteed for two years which is far longer than the car will last (but I would have said that two years ago!)

Then I've been on the computer most of the day designing a website as a present for some friends who have let us use their family house in the country on lots of occasions without any charge. They let it out during the summer so I'm designing a website advertising it as some kind of recompense.

It's good to be creative. It helps me feel useful. That and my photography help me feel I still have something to contribute.

Since I gave up work there is a huge gap.

It's not the space in the day. It is more about esteem and creativity and satisfaction in a job well done - and being held in esteem by colleagues for doing a good job. Which all adds up to self esteem I suppose.

It's important.

Then just as Jane and Nell returned Sam phoned. He seemed just a little better than the day before.

Then Jane showed me her shopping!!!

I was worried how we were going to afford our Visa bill this month after Christmas - but now I know how much money Jane has saved by buying all these clothes at reduced prices, well .............................

;)

We've rushed between us to get Nell something to eat before she goes back to work at the local pub, having been working in an office all day, whilst Jane was busy showing us her shopping.

Then eaten ourselves in amongst messengering my brother and his wife who are half way across the world, before the phone started ringing again with more discussions, arrangements and ...

... well I've just managed to get on here to finish this having done the washing up and made a cup of tea.

Almost time for a glass of wine I think. ;)

No posts since New Year's Day???

I've been checking in case one got lost somewhere - but no, I haven't posted since then.

That hangover must have been worse than I thought!

Sam spoke to Jane on the phone last night and with me today.

He's talking of death - the smell of death, having died and come alive - and lots more to do with violence. He phoned to say someone on the ward had a gun and was going to kill him then called back to say he'd been put into solitary now so it was ok.

We spent four hours with him at the weekend. Despite Sam having absconded on Boxing Day the new consultant hasn't cut his leave. In fact he's extended it in the way we had requested. The four hours with parents is now agreed as a weekly event.

However Sam seems less than well now. The four hours on Sunday were quite difficult. Sam had difficulty in talking with us. His ideas were confused. We felt we had to keep an eye on him constantly.

On the way back into the ward nobody answered when Jane buzzed the intercom. So Sam said, "Let's not bother." and started to wander off. He was only returned with some difficulty.

We've only discovered by accident that his Clozepam is being gradually reduced - it was only given him when his behaviour was particularly difficult when he had to be taken off Clozaril. But coming off this can be difficult. Another carer we know has been looking into this and says it must be done very slowly as it can cause psychosis - especially in conjunction with other antipsychotics.

Sam's on such a cocktail of drugs that reducing them must be good - but maybe he is going to have to suffer in the meantime.

But nobody at the hospital has discussed any of this with us.

Is is so unreasonable to expect that there should be some communication?

Given that we have an official complaint in at the moment that is about communication you would think they would be trying harder to look at this with us, if only to cover their own backs.

OUCH!!!!!!!!

My head!

I thought champagne wasn't supposed to give you a headache.

Perhaps there is still a limit on how much of it you can drink.

I was worried I wasn't going to enjoy our party last night. Late afternoon I became so tired I just couldn't keep going. It felt a little like one of the 'dos' I get sometimes where I just have to go to bed and end up with those awful flu type symptoms.

I slept for a couple of hours and then tried to get up. I still felt dizzy and had wobbly legs but as the evening went on and people started to arrive I began to feel better.

Maybe the champagne helped!

I had a great evening in the end. The party was good fun.

I hope you had a lovely evening last night.

Very best wishes to you all for 2005.

- Mike xxxx