'schizophrenia'

- a carer's journal

I've won my first literary award!!!!

No it wasn't for the writing in this blog. I notice this has come as no surprise to you! (Though I have had two requests to reprint parts of the blog in books and a request to translate it into French for a Belgian blog - none yet come to fruition as far as I'm aware. Oh, I forgot, I also once got listed in the Guardian newspapers top blogs list.)

No this was something totally different.

Last week we went to an evening to see John Hegley. He's a performance poet/comedian. We've seen him a couple of times and enjoyed the evening. Well this time during the interval the audience were requested to write poems about our home town and hand them in. He would choose a few to sing and give a prize for the best.

Well, I wrote a four line ditty which almost scanned and was vaguely in the style of some of his.

Guess what? He got a shortlist of three which he put to the audience and mine won! Maybe it was my recognition of audience and purpose. So I had to go to the front and get presented with a copy of his most recent book of poems which he later signed for me.

I was really embarrassed as my effort genuinely wasn't very good and he had read out some quite good ones from others.

Whatever - it's always nice to receive praise and recognition, even if it is a tad undeserved.

I drove to see Sam yesterday.

Jane had been depressed after seeing Sam on Monday and the negative experience with the consultant.

She had been interviewed for a very responsible job as a carer representative last week. If she had got it she would have had considerable influence in the region. She did so well and got very close but was pipped at the post. Having worked so hard for it she was pleased to have done well - but as the days go by she is more disappointed at not having got it. (The money would have been handy too!) This together with Sam's sudden decline have made it difficult for her at the moment.

We got a phone call from the ward manager this morning. She spoke with Jane about the meeting on Monday and about their perceptions of Sam. They had been equally shocked when they saw him at the meeting. They got him to agree to a drugs test (negative) and have put him back on velotabs (tablets that dissolve in the mouth and are more difficult to save and spit out.) So it does seem they are taking it seriously.

When I got to the ward at first I couldn't get in. There was nobody in the office answering the intercom. Eventually I was met by a new and friendly student.

Sam and I went out into the garden. We played basketball for ages. It was fun. I realised how unfit I was and soon became tired. I got a few baskets though and could remember some of my skills even though it is thirty five years since I last played a proper game!

When Sam was ten we were playing about with a basketball on a small pitch by some flats near a harbour in a fishing village in Northern Spain. As I jumped and leaped I hurt my back as my spine stretched and then trapped a nerve as I came down. I was in some pain - but all that was forgotten a minute later. Sam got bitten by a dog on the harbour and we were rushing about trying to decide what to do. We were worried about rabies and went to the police station. We didn't know the Spanish for rabies. Nobody spoke English. Eventually a policeman in his carpet slippers was found who had clearly been disturbed from his siesta. He and another policeman (in uniform) with Sam and I went off in a police car to try and find the owner of the dog. The police car had a bullet hole in the corner of the windscreen! Eventually we found a dog that looked a bit like the one which had bit Sam. The owner was instructed to bring the anti-rabies injection certificate to the police station the next day and that was an end of it. As they were showing no real concern we decided there was probably little to worry about.

But Sam had already been overnight in a French hospital that holiday!

Don't ask! There isn't time here. I'll tell you another day.

Anyway after our messing about with the basketball we sat and talked. I tried to draw Sam out about his thoughts but it was maybe half an hour before I came to realise quite how poorly he had become.

I can't reproduce the conversation. I wish I had a tape recorder. But he was talking of passing through barriers between space and time, of the "void", of energy and his control of it.

It became clear in summary that he thought he was controlling thoughts of other patients, they came through his mind and he processed them; he had special powers, if he stopped controlling the muddled thoughts in his mind an aircraft could fall from the sky; he again believed in aliens and had experience of them. It is ages since he last believed in aliens.

Only last week he was as well as me. Probably better in many ways.

I enjoyed our chat though. We laughed. He wasn't manic or apparently outwardly confused. He keeps his thoughts to himself. He hasn't shared any of these thoughts with staff because, "they wouldn't understand." I'm sure he's right.

As I left I asked to speak to a nurse. After a short wait a nurse I didn't know showed me into a small interview room. She was nice and friendly but I hadn't met her before. She had been off last week she said and clearly didn't know Sam. I tried to repeat the kind of things Sam had been saying to me as I know they would not be aware.

She listened politely. She said little. She took no notes. Was I just being humoured? Would any of this find its way into Sam's notes.

I have no idea.

I was shown out. An Asian couple had been visiting a patient and were shown out at the same time. I've rarely seen other visitors there.

In the car park a pretty young woman in a small car smiled and waved as she drove off. It was the student nurse who had welcomed me on arrival.

I went to a creative writing course yesterday.

I keep planning to get involved in different activities. I've been taking more photographs, starting a photography weblog and developing my web designing skills - but these are all solitary activities.

I keep meaning to get involved in more group type activities - where I have to relate to others. I'm worried I am becoming too solitary and afraid of meeting with new people and groups. I sometimes find this stressful.

I have planned to go on some photography courses or to join the local yoga group. But somehow I have never found quite the right time.

Jane came across a creative writing course. It is for people who have mental health problems but one can self-refer rather than it having to come via your doctor. I don't really understand it all but Jane set it up and today was my first day.

I'd been feeling a bit delicate that morning but was still interested in going - though a little worried.

Of course I got lost and arrived ten minutes late and nobody at the community centre had any idea which room it was in. So I arrived a little flustered.

There was just Brian, the tutor, and Jules. I had met Brian before and he knew I was coming so that was okay. I sat down and was introduced to Jules. She seemed shy, had a mass of curly hair and looked out at me from below it in what I think was a welcoming way.

I shook her soft hand gently.

The ground rules were described and an activity introduced.

I went into a kind of panic. I suppose I knew I would have to write - but I hadn't really thought about it. I'd taken a bit of recent writing but no blank paper. Jules looked to be using some sheets torn from Brian's shorthand pad. I didn't dare to ask for some too. I used the reverse side of the work I had printed off to bring.

We had to write about a recently overheard conversation.

I looked at my blank sheet of paper. I looked and I looked.

I tried so hard to remember a recent conversation. My mind was as blank as the sheet of paper in front of me. Brian and Jules were scribbling on their paper.

I looked again at my blank sheet of paper.

It was still blank.

My mind was still blank.

What should I do?

I could do nothing, just sit there, explain I couldn't remember a single conversation recently - never mind the nuances we were being requested to include.

I could start to cry. That didn't seem a helpful response, but at times seemed the only option.

I could walk out. Nobody had made me go there. I hadn't even paid. There was no compulsion to be there.

Or I could write.

I chose to write.

I remembered a brief conversation at the bar in the pub last night. It was the first time we had been in ages. I so rarely meet other people. I described the situation rather than the words. I couldn't remember the words. We were supposed to be writing about the words. Not just the words but the pauses, the accents, the dialect. I couldn't even remember the words.

I wrote. I finished on time. It was like a classroom. I suppose it was a classroom. At the top of Brian's notes it said "lesson plan" and the date. I was back in school. I used to be a teacher. Now I was back in school.

We were asked to read what we had written. Jules' was brilliant. It was her kids talking, arguing. It was so fresh. It was speech. No need for description. The speech said it all.

I was overwhelmed.

Brian and I both complimented Jules on this brilliant piece of writing. She had composed this in five minutes.

I now had to share mine.

They were both very polite.

We went on to various other tasks.

Brian was kind and supportive - but I still found it hard.

But finding things hard is okay. In my previous work everything was hard but I coped. I coped with it well. I didn't just cope - I sorted it. I thrived on the problem solving. I found solutions to difficult problems. Working with difficult problems was what made work interesting and satisfying. It was why I turned up every day.

It's my inability now to cope with problems that might bring about stress that distresses me so much.

We wrote about riddles and spells. We read and discussed poems.

Then Brian asked us to write a modern version of a fairy tale. We had ten minutes.

Have a try.

I dare you!!!

Brian mentioned a few fairy stories. Without that my mind would have gone blank again. The first he mentioned was 'Goldilocks and the Three Bears'.

That decided me. We had ten minutes. I wrote the following:

Once upon a time there was an addict called Frances.

Frances needed a fix.

Frances always needed a fix.

She needed fifty quid.

She needed fifty quid now.

She passed the empty house.

She'd passed it empty several days running.

They must be on holiday. She'd break in. She could easily nick something worth fifty quid, then go for her fix.

She returned the next day. It was easy. And the next. She came back every day. Then she'd go back and shoot up in the bedroom.

It was such a comfy bed.

Saturday the Brunos returned. It was clear straight away from the smashed kitchen window that there had been a break in. They began to look at the damage and to see what was missing.

"My bedroom telly has gone," wailed little Robert.

"My computer's gone too," yelled his sister Sally.

"The bastards have taken the new stereo," bemoaned their father, Jack.

There was a scream from upstairs. Joan, their mum, was sobbing as Jack rushed to her side.

"Is she dead?" she whispered as they looked down onto a grey-faced young woman, her face framed by a tangle of lank, unkempt, blond hair staring, eyes wide open, into nothingness.


Well - it was just a try. Only ten minutes. Though I might work on it!

Jane went to the ward round at the hospital yesterday. The ward round is where the consultant talks to the ward staff and occasionally the patient (but very rarely carers) about current progress and ways forward.

I didn't feel up to it. Sometimes it helps me to keep a distance. I also feel we are sometimes more effective individually rather than together.

We had discussed the issues the night before and I made lots of notes for Jane to take.

Of course when she arrived there everything had changed. Well - not everything, just Sam. Sam seemed very confused and irrational. The way forward was to become a drugs dealer, get arrested and then go to jail to help people there. This was such an obvious solution to him. All of our thoughts, built on his current progress, went out of the window.

Nothing Jane said to Sam could get him from this frame of mind. Any previous insight and rationality seemed to have gone.

Jane and Sam were shown into the room for the meeting. They waited and waited. Eventually the consultant arrived and asked if they would leave for a moment.

They were sent to an adjacent room and stayed there talking until they were called in.

Jane felt intimidated by the consultant. He was clear where he wanted her to sit. He dominated her by his presence cutting out her view of other people at the meeting. Jane supposed she was part of the meeting and made a point of introducing herself to everyone there.

The consultant said, "I understand you want to speak with me. What issues do you want to raise?"

There weren't issues as such. We just wanted to be part of the discussion. To contribute our input and be part of the process. Clearly the consultant had a different view.

Meanwhile Sam refused to sit down. He wandered around the room. From the tray on the table with tea and coffee he picked up a pint bottle of milk. Jane said, "Sam! Shouldn't you ask if you can have that milk?"

"It's okay," someone said.

Sam drank the whole bottle of milk from the bottle.

The consultant again demanded from Jane to know what were the issues. He sat forward in front of her blocking her view of others at the meeting and invading her personal space.

Jane tried to respond. By now she was upset and confused. She had arrived with a clear purpose and notes to support her but Sam's change of demeanor changed all that. She felt lost and threatened but tried so hard to make a case for them to include our views in decisions. After a while she was dismissed perfunctorily. Nobody else had spoken.

She felt lost and hurt and ignored. Yet again the carer's view was regarded as unimportant.

The worying thing was that nobody else seemed to have noticed the change in Sam.

She spent a little more time with Sam and then had the long drive home through the rush hour traffic.

I had dinner ready on her return.

And we talked.

The Royal College of Psychiatrists have designated their annual campaign for this year as: "Partners in Care". The website looks to have some interesting links.

I've seen little publicity though about this support for carers.

Jane and I both cried again last night.

Not for long.

And I can't remember why now.

There's just so much going on that is worrying me. The complexities of Sam's current situation, Nell's exams and her worries about them, Jane's application for a new job and her worries about Sam and his care, possible conflicts between ourselves and mental health professionals, my parents moving house and all the complexities and worries of that (in their eighties they've been living in a caravan for the last few weeks), my own state of health - the fact I seem to be getting more poorly again at the moment when I so want to be feeling better.

It just all kind of came to a head when I no longer had the strength to support Jane in what she is doing. I so want to but my reserves just ran out. When I was first poorly I began to learn to put myself first at times. I realised I had become poorly because I was always putting everyone and everything else first and forgetting myself. I'm worried I have got back into that state again.

But I don't know a way out.

Forget madness. Let's talk about music.

Sam and I have similar tastes in music. Well, except I have yet to acquire a taste for "drum and bass" music which Sam likes. It's not so much music but an assault on all your senses best appreciated when intoxicated by a mix of alcohol and drugs in the early hours of the morning dancing in a sweaty club. Not that I've tried. Maybe Sam did more often than was good for him.

Apart from that Sam and I both like Miles Davis. He has also acquired my enjoyment of Van Morrison and of Bob Marley.

The down side of this is that he often "borrows" my tapes and cds. A couple of Bob Marley ones disappeared again some months ago. I was particularly annoyed as I had already replaced them once. I decided to treat myself and when I was ordering a book from Amazon recently added Marley's 'Legend' and 'Natty Dread' which put the total over that where I could get free postage.

I'd missed having these two records. They have memories. I once had them copied onto each side of an audio cassette for the car. When the children were little we used to go camping in France for the summer with friends. Our friends have a daughter, now grown up, called Emma who has Downs syndrome. Emma is great. She is a good friend. She used to come back with us in the car from the beach covered in sand. We'd wind down the windows to let out the heat, Emma would jump into the back seat and shout "Marley on!". I'd push in the Bob Marley tape and we'd play it loud as we drove back to the campsite singing along.

I was disappointed that 'Legend' had been full price but when it arrived it turned out to be a new double cd version. On arrival I quickly put the original cd on. Except, of course, it wasn't original but had been 're-mastered'- whatever that means. It was of course better - cleaner, each instrument individually noticeable. But it wasn't as I remembered it. I was at first disappointed. I liked the mushy sound of the original unremastered version. However I'm sure I will get used to it. I then put on Natty Dread. I was full of dread as this also said it had been remastered. However it sounded great. Perhaps I was beginning to get used to the remastering effects now. I then put on the second of the Legend cds. This was a collection of remixes from the nineteen eighties. I was expecting not to like them but some of the tracks are excellent and I hadn't heard any of them before.

So I've been listening to lots of Bob Marley the last few days - but I promise I've not been smoking any ganja!

"Marley on!"

I've been busy yesterday and today designing another weblog.

(I hope you're not going to get jealous!)

It's a photography one. I have a photography website as well that is in desperate need of refurbishment. I hope though that I might be able to keep up better with a photography journal where I can just add things as and when I can rather than worrying about redesigning a whole web site.

It's good to have a weblog that is about positive things to counteract all the other side that I chanel into here.

If you are really intrested email me. You never know I may give you a peek.

What a beautiful sunny day it's been again today.

It made me more depressed that I wasn't physically well enough to go out and enjoy it. I won't go on about it but I've been feeling down about feeling so physically exhausted today. Maybe I tried to do a little too much yesterday when the weather was good.

On Saturday we met Nell and visited Sam together. He was pleased to see Nell and seemed in good humour. He still seemed well though and could clearly choose whether to be well or poorly. If he gets bored he might choose to be poorly to relieve the tedium.

Jane was appalled by the lack of activities - given the cost of the place (not that we're paying!) She spoke with one of the nurses who seemed somewhat chastened. We're invited to the ward round the week after next. I think words will be said.

Jane had texted a friend of Sam's who lives near the new hospital. Sam phoned us last night to say the friend had visited. We were all touched.

Nell stayed the weekend and left this morning. It was lovely to see her. She is in the middle of her final university examinations and is felling under some pressure. I was worried about her when she phoned last week so it was great to see her and to be able to offer some little support. We took her out for a meal on Saturday evening. She seemed to enjoy it and I know we did.

I hope she is feeling better after her last exam later this week.

At the moment I'm probably worrying more about her than Sam.

We visited Sam on his new ward yesterday. The place seemed nice enough and the staff friendly.

Their security is much higher than on his previous wards. More locked doors and a very high security fence in the grounds.

We sat outside. The views of the garden would have been lovely if one wasn't looking through a fine mesh fence.

Sam seems happy about it. But he is so well at the moment. There seemed to be little going on. There were lots of staff but they seemed to be 'minding' rather than encouraging any purposeful activities. Sam seems to need a lot of sleep but otherwise I worry he is soon going to get very bored there. The literature about the place promises so much. Lets hope it lives up to it.

We had asked to speak with staff but only got an embarrassed chat with his named nurse in a busy office.

I came away saddened and a little depressed.

While he is so well I just wish he was back on the rehab ward that he had to leave.

Earlier this evening I lay on the settee by the window. I was sipping a glass of white wine and listening to the Archers on the radio. As I looked out of the window I saw three swifts wheeling around so gracefully in the sky.

It's the first time I've seen them this year.

I love sitting out on our back veranda on summer evenings watching them swoop across the sky hunting for insects.

I hope it means summer is coming.

Perhaps it is a good omen.

We got a phone call from the hospital yesterday. There was a problem with transport to take Sam to his new hospital. The transfer might have to be delayed - unless, possibly, maybe, one of us could take Sam????

Of course we said yes.

Jane went. It was a journey of a couple of hours so I guess we'll be making that quite regularly now. A nurse had to go as well because of all the paperwork with Sam being on a section.

There is a patient there who Sam knows. They used to get up to mischief together (smoking cannabis) on the first ward where Sam was placed. He was at the same school as Sam but a couple of years younger so he kind of looks up to Sam as one of the 'big boys'!

He was standing on the drive waiting for Sam.

I do hope they aren't going to get up to mischief together here.

Sam seemed to settle well and the staff were really friendly. It was good for Jane to be able to go with him. She is happier having seen where he is.

I rang to apologise today.

I'm not sure if I needed to but I felt I wanted to.

I found out when talking with Sam yesterday that he had refused his medication in the morning before he saw his psychologist. His description of his discussion with the psychologist still suggests that the psychologist was negative about the move to another hospital and about him being sectioned at all. I still find that very unhelpful. It's important the professionals are all singing from the same song sheet - but there is clearly a difference of opinion between the hospital team and the assertive outreach team. This isn't helpful

However it probably also wasn't helpful for me to be phoning the psychologists manager and letting off steam before I had all the facts. I guess my judgment is not too good at the moment. I don't want to fall out with the guy. He's the one Sam trusts the most and the only professional who I think really understands a lot of the stuff going on in Sam's head.

In the evening I had a long talk with Sam. He's also been chatting with his mum during the day. I think I managed to persuade him again to continue taking his medication for the time being.

He was talking again of being misdiagnosed. That he'd had a Kundalini experience so he wasn't schizophrenic. I went through the negative and dangerous experiences he'd had as well. He was very thoughtful and really seemed to be trying to take on board all that I was saying.

We really have an amazing relationship. Not just me and Sam but Jen as well. Because of all we have gone through together we are closer to Sam than we ever would have been without all of this. Sadly for most families it can drive them apart.

I'm just so angry.

I really can't believe a professional could behave so thoughtlessly.

Let me start at the beginning.

Sam is due to go to the new hospital tomorrow. It's a 'high dependency unit'. He'll get additional care in a situation where he will be free form street drugs for up to six months. It's a nice place and the staff are friendly.

Sam has been really positive about it. He decided he wanted to go and therefore would not appeal against his section.

Today Sam received a visit from the psychologist from the Assertive Outreach Team. Sam has a lot of time for him. He has had problems of his own in the past and has come through them successfully. This has gained Sam's respect. Sam listens to what the guy says and takes note of it. Well he talked with Sam today and got on to the political aspects of sectioning and individual liberties. This was taking away Sam's freedom. Lot's of people had got better without medication.

So Sam has now decided he does not want to go to the new hospital. He is going to appeal. He is going to stop taking his medication.

Does this psychologist recognise what harm he has done? He may have different views on the appropriateness of current decisions taken about Sam. But that discussion should be within the team not directly with Sam once decisions had been made. If he'd bothered to turn up for the ward round meetings he could have put forward his views and possibly influenced the decisions made. At the moment though he has no other practical alternatives for Sam's future care that would not put him in severe danger.

Can you see the steam coming out of my ears?

Jane is with Sam now trying to talk all this through with him again. I've just spoken with the Assertive Outreach manager on the phone. I tried hard to remain calm and polite and it hasn't got the growing anxiety and rage out of my system.

Each day recently I've been waking up dizzy and with aches and pains. It takes me till lunchtime to get going. I was beginning to feel reasonable today and now this has brought all my symptoms back with a fury.

The sun is shining outside. Perhaps I can manage a short walk. I need to be calm for when Jane and Sam come back. We managed to arrange a few hours leave for him today as we won't see as much of him when he goes away tomorrow.

I'll let you know how it all goes later.

Georgina Wakefield has kindly sent me a copy of her book, Schizophrenia: a mothers story. It is a very moving account of herself and her son told in poetry and prose.

Many of you may find the poetry most moving but for me it was some of the prose. Georgina wrote that she finds it easier to write in verse. Maybe her struggles with the prose give it more power for me.

I wrote earlier about how well Sam is at the moment. But he has been here before. Like the weather his health can change so quickly. Georgina writes,
"I think it is the sheer relentlessness of schizophrenia that is the worst part of all. It is almost cunning in the way it lulls you into a false sense of security, only to be followed time and again by bitter disappointment when the monster decides to rear it's ugly head again."

Like me Georgina has found it therapeutic to write of her experiences and hopes it will provide an insight for others. The more I read it the more parallels I can find with Sam. It is a powerful and moving account. I am sure it may stimulate some of my ramblings in this journal.

Thank you Georgie for sharing your experiences, thoughts and emotions with us.

When I visited Sam yesterday the sun was shining.

We walked round the grounds chatting about this and that. Sam commented on the beauty of the cherry blossom, on the green of the fresh spring leaves contrasting against threatening dark grey storm clouds in the distance.

Usually if I pointed such things out to Sam I would be lucky to get a grunt. He had been only interested in things inside his own head.

We even discussed the possible limits of scientific knowledge and the empirical status of religious experience. (Sam was studying Philosophy at university!)

It's great to see him looking outwards, appreciating life, self aware but realistic about the future.

It is raining again today. But when Sam phoned his is demeanour still sounded to be sunny.

Sorry.

I've not been writing for a few days.

I've been just so tired. Aching and tired.

I felt a bit better this afternoon. I'd missed the sunshine yesterday and took advantage of it this afternoon instead. I mowed the lawn again. How exciting! But it was nice to be outside in the spring sunshine and to have achieved something small.

We had a phone call from the ward manager at the private hospital on Thursday evening. They have accepted Sam. It also seems that there have been verbal assurances about the funding so all looks set for Sam to transfer there some time later this week.

He seems quite positive about it.

He is so well at the moment though. On Friday I visited him and he was chatting very positively. He seemed to have a real insight into his condition. He was able to laugh and joke.

The recovery of his sense of humour was like refinding his personality.

Yesterday Jane was out all day and I was supposed to be visiting. I was feeling so down I just forgot. I felt so guilty when I realised. But its okay to put myself first.

Jane visited today and Sam seemed great again. He's talking of the future in such sensible terms. He phoned Nell about her exams on Jane's mobile and chatted for ages. It is good for her to be able to hear him well rather than just hearing it second hand from us.

Nell phoned again this evening. The pressure of revising for her finals at university is getting to her a bit. It's so important that we give time to her as well.