Wednesday, March 31, 2004

When we arrived back on Monday we phoned and Sam seemed fine.

Tuesday I did various jobs and then popped over to see Sam about six.

I met a nurse at the ward. His first words were to ask how I was. It felt genuine and very thoughtful.

Sam had gone for a walk. A doctor had seen him first and felt confident that he was okay to go out on his own. Sam had been asked to get back by six. It was about that time now.

I left him some tobacco and said I'd have a look out for him. I drove to his usual spots for a walk but didn't see him. I was worried he might have gone off again. He could be on a train to anywhere.

I drove home and helped Jane prepare dinner. I got a phone call from the ward. Sam had arrived back. They are so kind. The nurse I had seen on the ward had been confident about Sam going out for the walk but, without showing it, had realised that I would be concerned. So as soon as Sam returned he phoned me.

It is thoughtfulness like that which helps keep us almost sane.


Today Jane phoned the ward to see how things were. The ward manager was so positive. Sam had said he was no longer in the spirit world and all those things he had said about seeing dead bodies up in the hills - well people must have just misinterpreted him!

His body language was different. She found it difficult to explain but he suddenly looked like Sam again. You could see it in his eyes. Last week he had just looked like someone very poorly. We can recognise Sam's state of health by looking at him. It is great to know that there are others who are also getting to know him so well.

Tuesday, March 30, 2004

Having made the decision to go away for the weekend I straight away felt better.

However just before we left we discovered Sam hadn't taken his additional medication.

I wanted to rush up there and persuade him. We can't be there for him all the time but it brought back the guilt of going away at a time of possible crisis.

I tried hard to put it out of my mind. We were going away.

We met my sister on the Thursday evening, had a meal and a few beers. It was good to be away.

Friday I went into London. Some time during the afternoon I started to ponder things and became a bit emotional. I went to St Paul's Cathedral. I'm not religious but I've always liked St Paul's. It seemed a good place to sit and think calmly, to gather strength.

Outside and inside was covered by scaffolding for repairs. Evensong was due and parts were closed off and people waiting and chatting elsewhere. There was no atmosphere of calm.

I left.

I walked across the millennium bridge towards Tate Modern.

The light on the river from the sun beginning to get lower in the sky was striking. I walked to the centre and looked at the light playing on the waves then looked the other way to the view of Tower Bridge. I'd been there earlier in the day looking across to the Tower of London.

Although the bridge was busy with people passing both ways I felt more at peace there than I had In St Pauls.

I walked along the embankment watching cormorants on the river.

I came to Somerset House and went through the main doors. A right turn and then a left takes one up a wonderful rough hewn staircase. Two stories up and one can exit into the courtyard.

Eleven rows of five water jets form a simple fountain. The complexity is provided by the computerised system that changes the height of each jet creating fascinating patterns of water and sound.

I sat on a chair at an empty table from the now closed cafe and watched the patterns.

Someone walked by, looked at me and said,
"Now there's a happy man."

If only he knew! Though I was pleased I obviously looked contented. It was what I had been searching for.

Another man played about leaping over the jets when they were low. Inevitably he got caught out and a jet of water caught him between the legs - to much hilarity from his companions.

Across the road I strolled past theatres lit up ready for their evening audience. Bars were beginning to fill up with their after-work clientele. Two strange looking men wearing fur coats and hats on such a mild evening climbed into a taxi.

The taxis were clustering in herds as they careered down the wide streets making crossing almost impossible.

Eventually I arrived at Covent Garden.

A busker outside with electric guitar had an audience of one. This was an unkempt man dancing with a half empty bottle of wine waving in his hand.

Inside the basement courtyard a classical quintet played Mozart. Someone came around with the hat and relieved me of a pound. They switched to Ravel which was less successful and I moved on.

I met up with Jane and my sister in law, Sarah, who by coincidence was also in London on a course. A couple of Sarah's friends joined us.

I was feeling nervous about meeting new people. Just my anxiety coming back - but they were gentle and kind. I worried about timing the meeting up with my sister. Suddenly it was getting complicated and I began to panic.

We went across the road for a pizza as I tried desperately to try to contact my sister to arrange things. I knew we had to meet other friends soon.

The pizza was great - helped by the accompanying wine. The conversation flowed and I began to relax into the conversation as long as I knew I could opt in and out.

It worked out fine. My sister was just late enough so we had almost finished and were at just the right time to meet her friends.

We walked across town together and met yet more friends in a city pub. It was full of people enjoying their Friday evening in the city before returning home to the suburbs.

I was worried about having to meet and be friendly with yet more new people.

It was fine. A couple of beers on top of the wine got my tongue moving and I found myself in friendly but vociferous argument with new friends.

We eventually found our way home by train and taxi.

It had been a good evening. In the end I found a space for myself that didn't include worries of Sam churning around.

. . . . . .

The next day we had coffee and cake for a late breakfast in Starbucks at a local Borders bookshop. We had a lovely lunch together before getting the ferry across to Woolwich. There's something special about a ferry - even if it is only across a river. It's like going on holiday. The ferry was old, with character, lots of mahogany paneling and seats and even sliding doors to close off smoking from non-smoking areas.

We did some shopping and came home for a quiet evening in.

We phoned for a take-away curry and put on a video.

Jane phoned to check on Sam.

He had left the ward in the afternoon and had not returned. They were concerned.

We ate the delicious curry and tried to concentrate on the video.

It was about a gangster who had depression. He cried at the television adverts. They had done their research right. I've done that.

Eventually we had a telephone call from my parents. They understood Sam had been picked up by the police and was safe. They were giving him a cup of coffee. It makes a change. On other occasions he has been violently restrained and hadcuffed.

When he was finally returned to the ward we were able to talk with him by phone. Putting all the bits and pieces together he had got on a train with no money to the nearest town, gone to the bank and withdrawn £5.40. We had just drawn out most of his money so that he wouldn't have access to it. But even with this small amount he had managed to buy some cannabis. He had then gone on by train - again without a ticket - to another city where a friend lives. Sam didn't have his address or phone number.

He met some people on the train and got off at an intermediate station with them.

He got chatting with some people in the road and they obviously became concerned. They must have asked him where he was from and then called the police.

Sam jumped out at the police from behind a bush - just like he did with us to surprise us, playing games as a child. We asked him why the police were looking for him. He said they were looking for someone wearing an orange jacket.

Which of course was true.

Eventually an ambulance was dispatched to take him back to the ward some fourty miles away.

. . . . . .

I was tearful at the video, but all the stuff about Sam got to me.

But what made me tearful, as always, were the descriptions of kindness by people. The couple who had phoned the police. The police that had made him a coffee and who had stayed past their clocking-off time to wait for the ambulance.

There is something so wonderfully moving about simple acts of kindness.

Wednesday, March 24, 2004

I went to Sam's ward round this morning.

"Ward rounds" on psychiatric wards are very different from those on other wards. You have this vision in the UK of the consultant going round the beds with a retinue of flunkeys looking at the notes, checking the broken bones, operation scars, healing of infections, progress in readjusting after an operation and so on.

On many ward rounds on psychiatric wards a consultant may never see a patient. He/she just sits in an office and discusses with nursing staff who effectively make decisions as they have such influence over the consultant. I was once told by a ward manager, "We make the decisions - we tell the consultant."

Today's was better. On this ward patients/clients are often involved directly. There are serious problems at the moment with Sam and it was suggested we might like to attend. Jane couldn't come because of another meeting so I went.

I arrived at the appointed time and was shown to the room.

"Would I mind just waiting for two minutes?"

Well - yes actually, but I was polite and said, "Of course not."

Ten minutes later I was still pacing the floor of the corridor outside.

I could hear voices inside but not what they were saying.

Eventually I was invited in. They weren’t sure if Sam was with me and so the delay as they wanted to get up to date first. I was asked to contribute. My views were the same as those of the staff, which was a good start.

Sam has been exhibiting seriously worrying psychotic symptoms over the last two or three weeks even though he is now on the highest doses of medication. He still refuses though Deprocate, a mood stabiliser, that they seem keen to give him.

I'd seen him yesterday. He was looking forward to today when he was going to negotiate coming off all his medication.

He has rarely needed it more.

The consultant explained that she would try to section him again if he refused his medication.

We discussed the implications. We still have an outstanding formal complaint against an acute ward in the most local hospital. They hoped Sam could stay on this ward on a section as long as he was cooperative and agreed to take his medication. If not he would go to the acute ward at a different local hospital where there would be continuity with this consultant. This ward staff are being very supportive. They are not staffed to support acute patients but they recognise that if they can cope it is in Sam's best interests and our wishes that he stay there.

We were agreed. Sam was sent for.

He started very articulate and sane. He wanted to reduce his medication. He had good arguments. To any passing person he would seem to have a very good argument. As the discussion went on he opened up about what was going on in his mind. There were different realities. Why couldn't he be allowed to live in those different realities? He experienced joy. He had visited Nirvana. Who were we to insist on medication to dull his brain and prevent these experiences?

He was articulate and clear. Until I asked him about the times when he was like this and had put himself in extreme danger.

He talked of when he had fallen from a two-story building and was comparatively unharmed. Anyone else in the room would have been crippled but he was special.

This shocked and worried the consultant who recognised even more clearly the need for him to take his medication.

Sam agreed reluctantly to continue with his present medication but refused point blank to take the additional Deprocate despite my pleas that he recognise professional staff were offering him advice in his best interests.

At times I was still proud of his ability whilst so ill to be able to out-argue these very clever, highly paid people - whilst I was horrified by the implications.

Meanwhile he was climbing all over his chair and unable to keep still. At times he wood stare fixedly at the consultant or myself. He would go into long pauses.

"Sam! Talk to me. Answer what I said."

"I was busy writing down all you said in my mind," he replied.

At the start of the meeting he seemed relatively okay.

The meeting was scheduled for fifteen minutes. We had used that before Sam arrived. It was indicated we should finish now. It was an hour and a half from the start.

I walked out with Sam and tried to chat lightly.

He said he was fine. No, the meeting had been no problem.

I had a go at him about the medication. I was forceful but calm.

He suddenly relented for no obvious reason. Yes of course he would take the medication. Including Deprocate - the "mood enhancer" that he had been so obdurate about.

We chatted in the outside quadrangle while he had a couple of cigarettes.

We lightened up but I asked him what had been going on in his head whilst he stared at people in the meeting.

"I can see through people. I can see into their minds. Mostly there's not much there. Though I pretend there is!"

We laughed and laughed.

He was probably serious but he saw he humour in it and could share it with me.

It was a kind of bonding.

We saw the staff returning to the ward from the meeting.

Sam went and told them he would take the medication.

They were surprised but pleased. At least I think they were pleased. The consultant psychiatrist had spent at least an hour trying to persuade him to accept the additional medication to no effect. I'd done it in five minutes. They like to be the powerful ones. I don't want to get on the wrong side of her.

I popped out to buy Sam tobacco and then returned home.

On my return I tried to fill Jane in on all that had transpired.

As I tried to explain I suddenly realised how tired, drained and confused I was. I went and got a glass of wine. Not a good idea.

I'd held myself together in the earlier meeting apart from once where I had come close to tears. I stopped talking and few noticed but the nurse opposite had looked at me with compassion in her eyes.

Now I found it difficult to string a sentence together. I was emotional and confused. I couldn't remember what had happened or had been said in the right order.

I eventually got it out in a vague semblance of actuality.

We are supposed to be going away for the weekend. Jane is speaking at a major national conference. It's a real feather in her cap to be recognised as a "national expert". I've been there before but am so far away from it now. I know though how much it means to her and contributes to her own self image, which in turn leads to her ability to cope and lead all this with Sam. She is a tower of strength and yesterday was at a local high-powered meeting, putting forward the views and concerns of carers so powerfully. If we cannot sort it for Sam at least we might be able to improve the system for others.

I was worried about going away. The next few days are going to be so difficult. I wanted to be there for Sam. So often it has be the other way round where I have said we must find time for ourselves and Jane had insisted on concentrating on Sam.

In the end Jane got upset as well. She needed me to support her on this conference. Suddenly it was me that was torn. It wasn't that I needed to be there for Sam. In the end I had no reserves left for anyone. I just needed some space to be on my own.

Our emotional discussions were interrupted by my parents’ arrival. They are in their eighties and - partly at our instigation - are moving to a more suitable house. There is a problem and they will have to move out before their new accommodation is ready. They will be living in a caravan. We haven't offered to put them up.

There is no way I can cope with all this and my parents living with us at the same time. I can't even get the spare bedroom clean enough for some friends visiting for the weekend!

The diversion helped calm the atmosphere. We talked about carpets.

Jane phoned the ward. They agreed it would be good for us to go away for the weekend. We needed it. There was nothing more we needed to do - though I know there is.

Sam's my son.

So we're off for the weekend tomorrow.

I'll let you know what transpires when we get back. I need to warn you. When we've been away before disaster has invariably ensued!!!!!!!

Monday, March 22, 2004

I had been writing about the first time Sam was sectioned. I want to publish it here soon.

Jane asked to see it.

She was in tears. It was when she felt it went all wrong. Until then Sam had been with us. Although we had virtually no support we were in control. It was our love that was helping Sam progress.

Once he was sectioned all the control was passed over to the professionals, It didn't work out.

There were very many good, kind and honest people who worked with Sam and were trying to do a good job and genuinely cared.

But there were others who were cynical, abusive, rude, nasty and ...

... well, I could go on. I may do another day.

Because I have lost much of my emotional strength I have come to rely on Jane - even though she suffered a breakdown a number of years ago. I worry so much about her getting ill again as I know I can no longer cope myself and could not again help her get better as well as Sam.

We both started today not at all well.

It is the worry for the future. Sam was doing so well on this ward since leaving the acute ward. We really felt this was what he needed to make a recovery. We believed if he kept taking his medication and kept away from cannabis then he would become well enough to make rational decisions for the future.

This relapse without any obvious cause is a bit of a blow.

Today confirmed it a little.

I visited Sam late afternoon. He had seen the doctor this morning. He told her he didn't want to take the medication and refused - again - the new medication she wants him to take to stabalise his mood. We are also a little dubious about this.

He told me the doctor had said to him at the beginning of the meeting that she was his enemy. He refused to believe that he could have been mistaken. After this she "went a bit weird". He didn't want to discuss the issues.

His clinical psychologist from the assertive outreach team had visited him this afternoon. Sam has some time for him - but he didn't talk with him of the things he has been talking to us about. He only discussed his desire to come off his medication.

I'm not sure what the psychiatrist and psychologist have said to him but Sam thinks it will all be sorted at the "ward round" on Wednesday when the consultant will discuss progress with Sam and ward staff. I think we may need to attend the ward round then.

We had hoped to go away on Thursday for the weekend. I worry we may need to revise our plans.

I went for a short walk with Sam. On the way back he asked for money to buy some beers. I refused. We have agreed an arrangement.

"But it's my money. You have no right!"

"That's right but I'm not prepared to argue. You know we've agreed this!"

"Can I come home for the evening?"


Why should I feel guilty at wanting some time for myself?

Jane and I have discussed lots of this tonight. If Sam had been here we wouldn't have been able to. We deserve some time for ourselves anyway.

Why do I feel so guilty about this?

Partly because some carers cannot get any respite. They care twenty four hours a day.


Last week I met a couple I know quite well. They are in their eighties. A lovely unassuming couple. Their son cannot leave the house because of his paranoia. They are worried he could commit suicide. He cannot be left alone for the shortest of times. They would like a break. Just a few days. They haven't been on holiday for years. But who could look after their son while they were away? There were no ideas of any use. I wanted to say I would stay over for the period - but I can't even cope here.

When they can no longer cope he will need to be looked after by an expensive and inefficient care system. Some financial investment now to give them a break will help them cope longer.

Sunday, March 21, 2004

After a difficult day yesterday Sam stayed over.

Today seemed fine.

It was mother's day. I'd even managed to get Sam to buy a card yesterday and write it. A beautiful bouquet of flowers arrived from Nell. My mum and dad came for lunch and we had a lovely time. Sam played chess with my dad. He played well and won. He knew he had played well.

In the afternoon he went to bed. His medication makes him tired but often he will take to his bed to try to control the thoughts and troubles that are busy in his head.

He came down in the evening for some supper. All was fine until just before he was due to be taken back to the ward.

He told Jane he was not going to take his medication tonight. She tried to reason with him to no avail. It seemed as if there was a voice telling him not to take his medication.

She came to me and I tried. I reasoned and cajoled. Sam said he was well. There was no reason for him to take his medication. It wasn't voices telling him not to take it - it was his stomache that was telling him.

I came back to the trust thing again. He had to trust we were advising him in his best interests. In the end he relented. He would take his medication tonight as a sudden halt would be harmful to anyone taking such powerful medication. He needed to discuss it with his doctor tomorrow. He agreed to return and take his medication and we both got ready to go with him.

In the car as I was locking the house he became angry with Jane. He was shouting and furious. He had so much anger he needed to release. Jane was frightened. There have been just a couple of times when he has been violent.

He was talking of the spirit world. Didn't she realise that he could die at any time? He had to send his soul to the spirit world for conditioning. He calmed a little. I held his hand as we drove back. Shortly he said, "It's okay, I'm better now," and removed his hand.

He was quiet.

As we got out of the car he said, "Remember the game we are playing is that I've got schizophrenia. Don't mention the spirit world. - Okay?"

It was as if he wanted to keep those thoughts to himself. They weren't to be shared with others. But it means that the ward staff are not really aware of these thoughts that trouble him.

On the ward he took his medication and went to his room.

We came home and I poured a glass of wine. One too many.

I'd not been feeling well today - all week really. I'd managed tonight but I'm worried about the continual effect of this on my and Jane's health.

Saturday, March 20, 2004

I'm not sure where to start really.

We had a great night out last night. A concert locally. We met friends there, a few glasses of wine and just an evening not thinking about Sam

Except five minutes before we were due to leave Sam phoned. Could he come home tonight? No? Why not? Going out?

I'd already arranged that I would pick him up this afternoon. He was okay about it there was no problem.

But last night was nice. I'd not been feeling well recently but meeting friends and enjoying the music had perked me up.

Today an hour before I was due to pick up Sam he rang. I felt annoyed to be reminded. I'm determined to be in charge of my own life. Otherwise I will never get better.

Nell phoned. She'd sent Jane some flowers for Mother's Day but not to tell her. She wanted the phone number of Sam's ward to tell him to get something. I said not to worry, I'd be picking up Sam, I'd sort it.

The weather was too bad to go for a walk but Sam helped me with some tasks I could not have managed without him. It was great to be able to offer sincere thanks for his help.

He's been fairly quiet but when we have got into conversation it has been a little disconcerting. When he was reminded of a friend a huge energy force had emerged. At a visit to a drop in centre last week he had seen a ghost. He talked of when he "went mad last week". He clearly recognises something had gone wrong but when we try to discuss it the issue for him was that "they" were trying to section him.

He had given up smoking yesterday. He sold his tobacco and with the proceeds, went to the local pub and drank a couple of pints of beer. I don't blame him. I would do the same but alcohol is not suiting him at the moment - especially with the increase in dosage of his medication.

I said he could not drink at home but that became an issue. He decided he was smoking again so we went out to buy some tobacco.

In all, the evening went okay but I was finding it hard. I've not been feeling too strong the last couple of weeks. I found it hard being here with Sam. I think it must be the constant change. I can't cope with the change from him being really well to being really poorly to being in that in-between stage again. He's clearly not well and I'm just worn out by the effort of supporting him in this stage.

Jane took him back this evening.

The phone rang before her return.

Sam had burst into tears in the car. He started talking about an episode when he was four. He had disappeared on a walk. Jane and her friend had been distraught. Sam eventually reappeared getting out of a man's car who had found him and returned him. It seemed strange at the time but Sam seemed okay and unharmed.

He was suddenly now talking about it again. What had happened? Had he been raped? Why had the man taken him away and returned him? Sam didn't know the answers but was suddenly full of the questions.

He wanted to come home tonight.

The staff were great. Of course. No problem. He was given his medication and Jane was given more for the morning.

I've made his bed.

He's playing cards with Jane now next door. He's calm and happy.

I remember him when he was a happy four year old running through the woods with excitement and enthusiasm.

Thursday, March 18, 2004

I've received a couple of emails that have compared the kind of care and support that we have received with what pertains in their own countries.

One correspondent from the US paints the following picture:
"In the US we apparently do not have 'sectioning' like in Britain. Here the only way to get treatment is to commit a crime and be jailed. Over 1/3 of all people in prison here are on anti-psychotic drugs. Not necessarily the right one. The prison mental health system is based on compliance, not treatment."

This is very different from the situation described by a couple in Canada. Their son who has schizophrenia is seen by the psychiatrist twice a week. They (the carers) get to see the psychiatrist every two weeks "...which gives him the opportunity to see our son from a different perspective and also allows us to participate in a supporting role in a meaningful manner." They also see another psychiatrist every two weeks to help them develop coping strategies. They are kept fully up to date on new medications and their side effects. "Without this support I have no idea how we would have coped."

I popped in to see Sam this afternoon. I thought he might need some tobacco. Also it has been the last two Thursdays that problems have arisen.

Sam was dazed. He had been sleeping. He went into the cold outside in bare feet to smoke a cigarette. He said little but kept looking at me strangely with sidelong glances. I didn't stay long.

We should have had a meeting with Sam's nursing staff yesterday but the ward manager was ill so it was postponed. As I was leaving today I bumped into Sam's key nurse. He stopped to chat for a bit though there wasn't much to report. He is very supportive.

Monday, March 15, 2004

I hope this journal isn't too self-indulgent, just me whining on.

I'm sure you'll tell me if it is - or maybe you will just go elsewhere!

Whatever my worries and problems they are nothing compared to Sam's and others who have serious mental health problems. A few people with such problems have emailed me. Thank you for your messages - you know I have replied.

By chance I came across this journal by a young man with schizophrenia. I haven't had chance to look at it all properly yet but it seems a great site with photographs and music.

I was very moved to read much of it, for instance:
"I want a friend and a hug and I haven't had either in a very long time. I lay down face first on the floor but the carpet doesn't hug me back."

We try to give Sam hugs and love and to be his friend as well as his parents, however difficult things get. Perhaps especially when everything gets difficult.

Sam came home yesterday for a few hours.

He said he had placed his hands on the head of another patient on the ward. She had been worried and sad but Sam's actions made her happy again.

When we arrived home he asked me to sit down and he placed his hands on my head. He was trying to relieve my stress, to make me happy using his special powers. After a little while I moved away. I didn't want to be cooperating with this.

"How do you feel now?"

"Fine. I'm fine."

We went for a walk. Sam was fairly quiet but we were able to chat a bit. I tried to be light and joke a bit. Occasionally he would give me strange looks and smile. I worried he was hearing my thoughts in his head. That is something he often claims.

We'd invited some friends round for dinner. Sam had suggested it so we went ahead. It was a lovely evening and Sam clearly enjoyed the company.

Jane and Miranda drove Sam back. I chatted with Graham about Sam, about the worry of him not getting better, about their emotions on the birth of their daughter with special needs. (She is a good friend. Sam loves her dearly.)

I found I was crying. My emotions are still so close to the surface. Though of course I didn't sob and wail. Men don't do that do we? I controlled myself and we continued our conversation until Jane and Miranda returned.

We finished the wine and chatted.

It had been a nice evening. I left the washing up for the morning!

Saturday, March 13, 2004

Sam has been calm and cooperative since Thursday. They have been able to keep him on the ward which is a relief to us.

Jane went to visit him this afternoon. I was relieved when she suggested she went alone if I didn't want to go.

Just as she was leaving some friends phoned. Did I want to go for a walk? Of course - what a nice thought.

We set off for some nearby countryside and headed for the top of the hill. All around we could see clouds and rain passing but we miraculously stayed dry. Whilst we walked and watched the weather I talked.

It just poured out. I went over the week before that they already knew and then brought them up to date with recent events. I talked of my fears that with this relapse Sam was now in danger of his illness becoming chronic, that our hope that he might recover was being dashed.

Once small doses of Olanzapine had magic effects on making him well. Now a maximum dose was not controlling his symptoms.

"I'm so sorry," I said. "I didn't mean to go on and on."

"That's okay. It's why we invited you for the walk. We thought you might want to talk."

It's great to have such good friends. They've known Sam since he was born. Their own son is Sam's age. Their daughter has some special needs so they can empathise with us over many things.

When Jane came back she talked of how Sam seemed. All the time I was listening, even though most of what she had to say was positive, I became sad. I was thinking of Sam when he was little. When he seemed so special. He still is, but our hopes and dreams have been destroyed. He had so much potential.

It is hard to cope with the loss of hopes and dreams when one still has hopes and dreams for someone one loves.

Thursday, March 11, 2004

I got a phone call this morning form a nurse on Sam's ward.

He had refused his medication again last night. He refused it again this morning. A nurse had spent a lot of time talking with him. He said he had been misdiagnosed. He did not have schizophrenia. He'd had a 'kundalini' experience. He wasn't ill- he was special. He had started to become agitated and angry.

I agreed to visit him straight away.

I met the nurse and we went in to the office where she started to explain. Soon, as if by magic, Sam appeared at the door. Perhaps he does have special perceptive powers! Or maybe another patient said, "Sam, your dad's here!"

Sam joined us and sat in a corner. I suggested he sat closer and joined us. He was disheveled. His hair was greasy. He hadn't shaved for days. His eyes were staring. He was hunched in a crouched posture. He was looking around warily. Around his eyes his face was red and there were bags beneath them. As always he was wearing his dirty coat. He had no socks.

He wanted to look on the internet to find out about 'kundalini'. We persuaded him to sit down and talk about it. He described the previous night having seen several of the staff die difficult an painful deaths. He could see into the future. The future, the past and the present were all one. He found this morning so difficult when people he had seen die the night before were there telling him what to do. He kept grinning inappropriately and looking around the room as if things were there. He would pause as if listening to someone and occasionally go off into a long silence as he concentrated on things in his head.

Eventually I managed to get him to agree to take his medication. It was important for him to take his medication while he discussed these matters with staff. It was okay for him to have different experiences and hear voices - the issue was if he could keep himself safe and I reminded him of past exploits.

Whilst he was in agreement the nurse scurried off to get his prescription whilst I tried to maintain a positive tone. This was difficult as a train of people managed now to get into the office whilst the nurse was absent - to put a name on the wall - in red, not blue, felt tip - to empty the bin, to have a sandwich.

Sam took his medication without a problem.

We talked some more and then Sam went for a rest. I discussed with the nurse the possibilities.

I would like him to stay on the ward - but it is not an acute ward. Sam was presenting as very acutely ill. He would be safer there. We have an outstanding formal complaint against the most likely acute ward. I don't think they would want Sam or us! These were decisions to be made later. The doctors would need to be involved.

I left thanking the nurse for her time and compassion.

Later that afternoon I returned with Jane. We had a pre-arranged meeting with the ward manger. She had been busy and had yet to grab her lunch. She begged five minutes to have a cup of tea while we chatted with Sam. She made Jane a cup of tea also. Sam was very much as he had been that morning. He was uncommunicative and uncooperative but still seemed eager to join the meeting.

We discussed what had caused Sam's sudden decline. The ward still suspected cannabis use. Sam, though had refused to give a urine sample. Cannabis can be detected for up to a fortnight in the system. I persuaded Sam that to to give a sample would be a good idea. We went off to find a sample jar. This gave Jane some time to talk with the ward manager alone. After Sam gave the sample we went outside for him to have a cigarette.

Whilst we were there he talked of leaving Sam behind. He was now another person. He could read people's minds, he could control their minds. Music was talking to him. People in the television room had all been giggling at him. He had turned one of them into the Buddha.

When another patient came out I slipped inside. Soon Sam came back and joined us.

It was so clear her was unwell but he listened calmly as we talked about it. The wad manager was skilled in talking to him and asking gentle questions.

He agreed to continue taking his medication. He agreed to stay on the ward and not leave unaccompanied. He could change his mind though in five minutes.

The ward manager had to decide if she could safely keep him on the ward or whether he needed a change of medication. A doctor had seen Sam and they would be in touch with the consultant. It might be that Sam would have to be transferred to an acute ward - if only there was a bed available. There was worry about cover over the weekend if things started to go wrong.

She decided to put off a decision until the morning.

I felt I had coped well with today. I must have been in "coping" mood. Jane felt tired and drawn after it all.

The worry for me was that if Sam is still getting poorly when he is on the maximum dose of his anti-psychotic medication, then is his illness becoming chronic? Might he never get better?

Wednesday, March 10, 2004

Writing a weblog can have some interesting and unexpected outcomes.

I was really pleased to be included yesterday in the Guardian Weblog list of "best links from around the web". (Thank you Jane!)

But even more fascinatingly - I have been linked from an Iranian website (written in Persian) and have already had about three hundred hits to this site today.

I wonder what they are making of it? Do email me and let me know!

Tuesday, March 09, 2004

It was good to have a day yesterday where I didn't see Sam and just tried to have some time to myself. Although mornings are not good for me after breakfast rather than showering I got my gym bag and decided to set off to the gym to shower there.

I haven't been in the cv room there for months though I used to go three times a week. I've started to try to go for an occasional swim. I can then feel justified in relaxing in the jaccusi, sauna and steam room. It was those I was going for as I felt dizzy and my muscles ached but I wanted to get out and do something relaxing for me.

I managed a few lengths and enjoyed the other facilities. It was good to be out of the house. Sometimes after a swim when I've not been so good I can feel quite exhausted. But today I felt okay.

Later in the day for no apparent reason something triggered an anxiety attack the like of which I can't remember. I fought to manage dinner and went straight to bed, eventually to sleep.

Today was better. I enjoyed a walk on the moors this morning and felt fit and strong. I just so didn't want to return home to thoughts about Sam.

Sometimes though I find myself worrying about all sorts of inconsequential things and building them into a mountain. I'm sure it is all trying do divert my anxiety from worries about Sam.

I went to visit Sam this afternoon to take him some tobacco. As I turned the top of the road I saw a young man, somewhat haggard, sitting on a bench, smoking a cigarette. There was something about his posture, even sitting that immediately made me realise it was Sam.

I stopped and he got into the car. He was tired. He wanted to go to bed. He was monosyllabic, uncommunicative, tense almost comatose.

We went into the village and I bought tobacco.

On the ward he suddenly said, "Fancy a game of snooker?"

We went to the games room and he played snooker like a bad pool player. He still beat me easily - even though we didn't keep score. He livened up as we began to play. We almost had a conversation.

"I enjoyed that, want to play another?"

We played again and the conversation didn't exactly flow but we were able to exchange a few jokes and comments. The yoga teacher passed through and we chatted. As I described the way yoga had helped Sam in the past he became quite animated and talked in a mature, sensible and constructive way.

The difference with his earlier self was so striking.

Later he told me that he had been in a bad way when I first met him as he had troubling thoughts in his head. He talked also of not being able to stop laughing inside. His hand WAS laughter. When he had conversations with people he could see a different and special person that was not the one who was talking to him. He kept smiling and grinning in inappropriate ways.

I wonder what monitoring is taking place on the ward?

The laughter will be described as a "mood-swing". They want to prescribe a "mood stabiliser" on top of the antipsychotics.

We are wary of this but don't want to antagonise the staff. We want him to be able to stay there.

I made an appointment to see the ward manager on Thursday. She is nice. She is friendly and kind. But ultimately she is a professional who has reformed that ward into a really good one - but by the use of a philosophy of programmed techniques and medication.

It may not be our philosophy - but the care is the best there is that we have found.

I feel a lot better today.

Sunday, March 07, 2004

I'm still feeling very delicate today.

My muscles ache and I'm easily brought to tears. I just need to look after myself for a few days.

However next week could be difficult. The ward Sam is on are bound to be reassessing his place there. They are not set up to deal with acute patients but the acute wards are full and he is not poorly enough to go there anyway. Not that we would in any case want him too. The fact that there is nowhere better for him to go is not the ward's responsibility. That will be a problem for his social worker. We will press hard for the ward to keep him. It will take energy and determination. I rely so much on Jane now to sort these things where once I would have been in my element.

We believe that Sam's problems were at least triggered by cannabis use and have been made worse at times by cannabis use. However Sam finds cannabis helps him. I don't know whether it is the calming effect when his head is buzzing with thoughts he can't control or whether he actively likes the psychotic thoughts that are created. It can be more fun than the boring "reality" the rest of us inhabit.

There has been a lot of discussion about this in the UK media recently because of a change in the legal classification of cannabis. Posession is now a much less serious offence.

I had a really supportive and very interesting email from L. L has heard voices since she was young and has been on various different medications. However she finds that cannabis actively helps her. I hope she will not mind me quoting some of her email:

" i have found this (cannabis) to be the number one miracle drug. i have been on a dozen to twenty psych drugs in my life. i have been extremely lucky. i still hear the voices everyday. they still keep me up at nite with their bickering, tempting, fighting, tortuous fucking voices. dope is the only thing that i have found that made the voices be quiet for a little while. the other, manufactured drugs were horrid. the side effects unacceptable."

L is coping through cannabis use. Everyone is different. Good luck L.

Saturday, March 06, 2004

At the carers' break weekend we were reminded of the fat that in the UK 48% of carers of people with mental health problems end up with mental health problems themselves.

I am one of these casualties.

I have always been a strong person. I cope. I'm the one that others turn to when they have problems. I have helped other people going through crises through stress at work and home.

For example when Sam and Nell were young children I was told that Jane was going to die from breast cancer. It didn't happen but at the time it was true. I was then headteacher (principal) of an inner-city primary school. I still managed to go in to work every day as well as go to the hospital to support Jane and meet with consultants. I got the kids their meals and even supported my and Jane's parents. I'm strong. I cope.

It was a shock and surprise when I became ill.

I was driving down the road one sunny Sunday afternoon. Earlier I'd had a text message from Nell which I briefly misunderstood. I thought she had been involved in a road traffic accident but it had been a friend.

As Jane and I drove to a garden centre to buy some spring plants for the garden I suddenly found tears streaming down my cheeks and had to stop the car. It was my first inkling of not being able to cope.

The next week, following a couple of very difficult and high powered but successful meetings in my job as a senior education consultant, I started with virus type symptoms - like flu but without the sniffling and sneezing.

It didn't go away.

I tried return to work but couldn't cope. I soon became apparent that the emotional and the physical symptoms were connected.

I have now had to finish work. I know I can no longer cope with that level of stress. I had hoped that cutting out the work stress would help me get better. It hasn't yet. I still can't cut out the Sam stress.

This week has been so draining.

Following last weekend at the carers' break we went on to Scotland to stay with some friends who had rented a cottage for the week. The weather was cold but clear and crisp. The scenery was lovely and we enjoyed some walks along the coast as well as the company and some good food and wine. I enjoyed taking some photographs - a hobby of mine.

When we came back from Scotland the anxiety started straight away. Before we had even seen Sam or heard from the ward. It was only it starting again that helped me realise I had been free from it for a few days - and that it was normally there.

It's like when I do some exercises to relieve the tension in my back, shoulders and neck. It is only when I do the exercises and the pain hits me that I realise how tense I am.

Having been so relatively well whilst away, even managing a few walks without becoming exhausted, I was so disappointed to recognise the return of so many symptoms. They have accumulated over the last few days.

I saw Sam this afternoon. He was relatively well - in control. However his attitude and demeanor indicated many underlying problems. He said his head was buzzing, that it was full with activity, there were multiple personalities there each having their own thoughts. And this was when he was being guarded. He doesn't want to get sectioned.

He wanted to go out drinking tonight. He wanted his money. It is his money. It is not appropriate for me to keep, it from him.

I refused.

It is good he is not violent.

We went for a walk on the nearby moors. My legs could hardly pull me up the hill. The views in the late afternoon sunlight were beautiful. Sam lay in the heather and asked to be left to his own thoughts. He looked at me strangely and was guarded in discussing his thoughts but kept looking a me and round about with suspicion and concentration.

We argued again when we returned to the ward about him going out and having his money. I was relieved he went in to the ward and did not leave.

On my return home I was exhausted. All the energy was drained from my body.

Later a discussion with Jane about holidays sent me into a crisis. I became upset and argumentative. I have no more reserves to give to other problems. I want the holiday with Jane. Nell will join us at the end of her university course. I do not have the reserves of energy left to organise it though I want it so much.

Nell rang later - ostensibly about an email I had sent her and some money I must pay her soon. But really she is ringing to offer her support - although she also finds it hard.

The next few days and weeks could be difficult.

Sam has to be persuaded to continue with his increased medication. He is likely to be very resistant. The ward may decide it is not an appropriate place for him. They are not organised or staffed to cope with acute patients. However the acute wards are full and cannot take patients who have not been sectioned. In any case the acute wards have made Sam more poorly in the past. It would be a move backwards not forwards.

The thought of this is causing me more worry and will make me more poorly again.

It is at times like this that I just want to run away from it all.

Friday, March 05, 2004

It was a bit of a rollercoaster again today.

Yesterday Sam was so high. He was detained under section 5.2 which the staff can do immediately and lasts for up to 72 hours.

The psychiatrist decided to detain him under section 3 which can last for up to six months and treatment can be enforced. Sam has been detained under section 3 three times previously. To do this it needs the agreement of the psychiatrist, an approved social worker and a GP (family doctor).

Trying to get these three people together in the same place at the same time is a nightmare for the staff involved. The first time Sam's GP was involved it was only the second time she had done it. She was nearly as distraught as we were.

It wasn't possible to arrange this yesterday. However Sam accepted his medication last night and a tranquiliser this morning.

We saw him in the afternoon. He had come down from his high and his pscychotic symptoms were already under control. The ward was happy for him to stay there as long as he remained calm. The only thing he had done that was at all inappropriate was to do his exercises in the television lounge in front of the other clients. They can cope with that.

We quickly realised that it would be difficult for them to section Sam in his current state. Sam suggested a game of chess and won. I played badly but it is often a guide to his state of mind. He also beat me at pool without even trying (not hard) but I did win at table tennis which is unusual! The fact he could even try to do any of these things was an indication of a huge change from the day before.

We had a fright as we left as we saw him in the grounds. He is not supposed to leave the premises at the moment. He had cut us off to ask us to get a telephone number for him. He went back to the building without a problem leaving us relieved.

They had to get a doctor under another section of the act - section 12 I think. Sam's current GP refused to be involved as he has never met him. I don't know about his original GP who was contacted but she probably found a convenient excuse. It's not a nice part of the job.

In the end of course Sam was so well that there was no way he could be sectioned.

So we are back to square one. At least there is not the threat of him going to an acute ward at the moment.

However if he starts to refuse his medication again or begins to decline again we are going to be into serious problems once more. We're also worried about whether the rehab ward will want to hang on to him if he is likely to continue to relapse.

They were already beginning to suggest he might be inappropriately placed there.

The trouble is that if he is discharged from there his next residence is likely to be the streets. He is not streetwise. He wouldn't last a few days.


Sam's sister Nell phoned a couple of times. She worries about him but also hides from it for the sake of her own state of mind. She worries about us too. It is not easy to support her through this, especially at a distance.

Thursday, March 04, 2004

I'm still stunned.

Sam was sectioned again today for the fourth time.

It was so unexpected.

When I started this journal I wished I had started it earlier. I wanted you to have known all the trials and tribulations we had been through during that stage of his illness. I hoped that that stage was all behind us now. He was getting better. I was talking about recovery not illness.

It was such a shock to see him in that state this morning.

We had a rearranged meeting this morning. Sam is currently on a rehab ward. The staff there are great. They treat patients and carers like human beings. What more can you ask?

We bumped into the ward manager by the door. She suggested we meet together first before Sam joined us. You cannot understand what progress that is - not on this ward, but in general. The idea that professionals might talk with carers without the express permission of the client. I'll write you a long diatribe about 'confidentiality' another day.

Sam has been really well recently - though we had concerns last week. In general though the ward felt he was making progress.

The last few days he has been okay but last night he was talking strangely. He ended up refusing his medication. Having decided he is now well - then why would he need medication. He suggested a reduced dose - 5mg of Olanzapine as opposed to the 15mg he is prescribed. This is sensible as coming off altogether is very dangerous. The withdrawal sends him into a deep psychosis. But as 15mg was prescribed it was not possible for nursing staff to agree to 5mg. He therefore received no medication last night. In itself that would be no big deal but in the context of him becoming very psychotic anyway - it didn't help.

Sam's nurse and the ward manager explained all this and that he seemed unwell this morning. If he continued to refuse medication that would be a problem. We discussed how unwell he would need to be to be sectioned and have to take his medication and whether he would have to leave the ward if he was on a section. It was agreed that we see him before he joined us to judge his mental state and how best to approach the issue of his medication.

That was such a shock.

Sam was playing pool. I could see from his stance and his demeanor as soon as I entered the room how poorly he was. I suggested he join me outside for a chat.

He had been for a walk on the moor that morning. He had laid by a stream and met Jesus who had talked with him. He had talked with God and recognised that he himself was Jesus. He had a child and a man in his head. They were telling him different things about how to progress. He had been awake all night. His friend Adam had been in his head and he had been laughing at him all night long. He couldn't keep still, couldn't answer a simple sentence with any logic, became antagonistic.

He was very, very poorly.

I haven't seen him so poorly since the last time he was sectioned.

At the previous meeting we had argued so hard for him to remain on the rehab ward if he had to be sectioned. This began to seem like a remote possibility.

I'll tell you more another day about the acute ward. We have a complaint still outstanding. As Sam has said, "It's mad on there. If anyone had mental health problems you wouldn't put them there." Sam of course doesn't believe he has had mental health problems.

There was no way we wanted him transferred to the acute ward where, as was agreed by his psychiatrist and his named nurse, he became more poorly the first time he was sectioned when admitted to the ward. Apart from the general atmosphere and lack of care he gained more access to drugs which had caused his illness than at any time during the previous few years.

I digress - sorry, but look it's pretty good I'm even writing this stuff in my state tonight.

I told the staff how poorly I thought he was while he finished a cigarette, talking with Jane. The junior psychiatrist - a very nice woman was already in the office. She joined the meeting.

Sam just talked of ideas and things in his head. I always wish I had a tape recorder at these times. I have a poor memory and if something doesn't make sense - like vocabulary lists in German at school - I can't remember it. So I can't remember what Sam said. It was fascinating but it made no sense.

The psychiatrist was very kind.

She very soon though had to explain that she was sectioning him again.

He didn't get angry but explained that it would take six strong people and someone with a knife to hold him down to administer the medication. He also threatened to bite someone's nose off.

You need to know that Sam is the meekest and kindest person imaginable. He wouldn't hurt a fly. But he is six foot tall and has the muscles of a rock climber.

Look, I'd be scared. For a moment I was.

Then I stretched out my arm and held his hand.

From the other side Jane did the same.

We held his hands and tried to give him love and soak up the stress.

He calmed down and the sense of love from his parents pervaded the atmosphere and calmed the professionals also - there had been a little tenseness developing!

After much talk the nurse fetched Sam's medication. There was no discussion but Jane gave it to him. A mother giving medication to a baby. Sam took it without demur - though he paused long enough to give us all palpitations. Later Jane gave him another 5mg.

We stayed a while and took it in turns to talk and reason with Sam, trying to calm him. The medication seemed to have some effect but he remained very strange.

The nearest free bed on an acute ward was half way across the country. So the ward agreed to keep Sam. The combination of our views and support - together with the practicalities persuaded them. We agreed to return later in the afternoon to help encourage Sam to take a tranquiliser if appropriate.

The ward staff and the doctor were very helpful and kind. We felt supported in what had been a trying day. The ward manger rang later in the afternoon to say that Sam was calm and to reiterate the conditions that had been explained to Sam. If he was to stay on the ward he had to agree not to leave the ward and to take all prescribed medication. He had agreed to that which is something. He must have become well enough to be frightened by the alternatives.

He was still asleep at tea time so we didn't return to help with his medication then.

Later in the evening we had several phone conversations with staff.

Sam is still well. He has taken his medication. He is calm and cooperative.

Jane was traveling across country tomorrow for an important meeting about the future of her work. She has finally decided not to go.

This has already cost me my career. It is in danger of doing the same for Jane.

We went on a carers' break weekend from Friday to Sunday. It's the second time we've been. The workshops were average but the great thing about these weekends is the wonderful people that you meet.

It's possible to talk and listen to each other's problems as you can empathise so much. Although everyone's situation is different there is so much the same.

Somehow carers just seem such wonderful people. All from very different backgrounds but all with a great humanity. I came away humbled but invigorated.

If any of you are carers and are offered such a break - just take it. Don't sit around thinking you might not be able to organise it or that its not really for you. Just take it.

You will be glad you took my advice.

I promise

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