'schizophrenia'

- a carer's journal

We have both been concerned that Sam is rarely getting any leave. He is entitled to outdoor leave with two male members of staff. But of course he is not getting it. The excuse is usually either that there are not two male members of staff available or that Sam isn't well enough or a combination of both. So Jane spoke to a few staff including the ward manager raising concerns about this. The more he is couped up the more poorly he will get so they will say he isn't well enough to go out - and we are into a dangerous downward spiral.

It was emphasised at the meeting the previous week how important it was to try to get Sam out more and back onto the upward spiral. So we were keen to encourage them to do something to try to begin that process rather than wait for the opposite.

We had a call later in the evening. The ward manager had asked the nurse in charge to try to make two male members of staff available to take Sam out. She managed to arrange this and went to tell Sam the good news. "Hi Sarah, how are you?" said Sam as she approached. "I'm fine," she replied but before she could tell Sam that she had arranged for him to go out he slapped her across the face with no warning.

It was some time later that she rang to tell us about it but still seemed upset. Even if not badly hurt such things can be a huge shock and she was on duty until late in the evening. It is a credit to her that she had not gone off duty straight away but perhaps that might have been best for her. She was even grateful that it had happened to her rather than in the grounds where a member of the public might have received the slap. But this highlights the problems ahead in getting Sam leave. If he can slap someone when he seemed well, with no warning the assumption will be that this could happen at any time. The risk assessment will be that his unpredictability makes it impossible to give him leave - and staff will not want to be responsible. So the downward spiral will go on.

Jane was very sympathetic. It is a shocking thing to happen to a nurse and is just what Sam was doing when he was first admitted. But he has been on Clozapine now for over a year. So what is their plan B? Of course there isn't one. On every ward Sam has been on there has been an assumption that once they got the medication sorted out it would be fine. Each time there is an initial improvement but then he deteriorates again. But each time this deterioration goes even further. Now he is in a forensic ward ... where next?

We have been very depressed by this.

When Jane was talking with a nurse on the phone from the ward at the beginning of the week the nurse said she was surprised we hadn't had a call from them at the weekend!

Sam had mentioned on the phone a few times that he had been to the hospital at the weekend and they had electrocuted him! This seemed most unlikely but Jane just mentioned it. To our surprise it seems he had been taken to the accident and emergency department at the local hospital. He had been chasing up and down the corridor - it seems he has been doing this a lot. Soon after he was given a routine blood pressure test. This was so high it went off the scale so off he went to hospital.

All the tests there said he is fine - including the blood pressure so they are putting it down to a malfunction of their equipment. But it is a concern as Clozapine has had an effect on his heart the first time it was prescribed for him a few years ago.

We didn't get a phone call from the hospital while we were away for the weekend. Often when we have been away we have had calls about some disaster that has happened. But this weekend we had a lovely time with relatives - meeting half way between us as we hadn't managed to meet up at Christmas. And there was no disaster phone call from the ward!

I had wondered if I would be able to go though. I had another of my fatigue attacks on Friday and collapsed into bed finding it difficult to be roused the next morning when we had to set off. I could so easily have said I was too poorly but we managed to get ready between us and fortunately we had decided to go on the train rather than drive.

A friend once said to me that the antidote to chronic fatigue syndrome is pleasure. Well we had a very nice weekend with good company, good food and plenty to drink! The town we visited was surprisingly beautiful and the family hotel where we stayed was good too. So it has done me good ... though I found it all very tiring and am just aching for a few days to collapse and do nothing.

My dad said that Sam had phoned a few times over the weekend and had seemed very confused. Jane phoned the ward as soon as we got home. The nurse said he had been manic and running up and down the corridors. He had also been making inappropriate sexual remarks to female staff again. But there had been nothing they described as serious incidents. She said she would let Sam know that we were home.

The phone rang immediately. Sam was calm, reasonable and loving - if totally bonkers! They must have just given him some Lorazipam!

We're going away for the weekend so visited Sam today. We'd hoped to go round the grounds (I mean car park) with him but it was raining. We rang on the way, half an hour late, delayed by the traffic as the school buses and cars arrived at the three High Schools we had to pass. We apologised for being late and wondered if we might go with Sam to the Visitors' Centre in the main building if it was too wet to go for a short walk. It was explained that Sam hadn't been at all well today. There had been a minor incident when he went out in the morning so it was felt it was best for him not to go out again with us. That was fine. We knew he hadn't been well on the phone the other day and realised the decision had been made sensibly in terms of Sam's and our safety. But it might be possible to go out with Sam into the hard area (or "cage" as we know it.)

When we saw Sam we realised how sensible it was not to take him out. He was waiting for us but was troubled. He wanted to go out with us and his fists were clenched, his body language aggressive. He wanted a cigarette and to go out. Staff were very good with him and it was decided we would go out into the hard area with him and a member of staff. Sam's named nurse, a senior member of staff, came out with us.

Sam was surly and aggressive, it was hard to find any topic of conversation with him. We were pleased we were not cooped up in a room with him. We would not have felt safe. Even trying to be close to him and supportive outside was hard.

Sam was verbally aggressive to Jane and then threatened me ... coming towards me as if to attack me. We all realised it was time to go and the nurse let us out of the area while he stayed and settled Sam.

We were so pleased that it was an experienced member of staff who we knew and trusted who came out with us. He knew how to sort out Sam and us. He was confident and calm. A less experienced member of staff might have exacerbated the situation.

It is obviously distressing that Sam is getting worse. We've always felt that yet another different medication wasn't going to be the magic answer. But if it isn't then .... what next?

Sam phoned this morning. He didn't say much but seemed all right. We chatted for a short while. Then he said he was tired and started banging the phone on the wall.

He phoned again this afternoon. I answered in a positive tone and he seemed fine. We chatted for a while about things to do with his MP3 payer. Then he started to ask me if, before there was war, were there vampires and zombies causing evil? I started to say I thought they were probably just stories then he began shouting and banging the phone on the wall again.

On the phone recently Sam has seemed so well.

He was over-excited at the CPA meeting yesterday. He hates people talking about him and judging him - wouldn't any of us? - especially as he thinks we are all ill and he is well. But in the main he doesn't seem a lot worse than he has been at many different times recently. So it is important he gets his leave back.

He rang this morning.

"What day is it?"

"Wednesday."

"Oh - I might go climbing."

"No Sam you don't have any leave."

We've tried so hard to talk this through but he doesn't seem to be able to hold it in his mind.

So we went to the CPA (planning) meeting today. As always I get a bit anxious about such meetings ... and always afterwards wish I had handled them differently.

Sam's care co-ordinator wasn't there. We get on with him well but he hadn't been in touch. We wonder if he had even been invited. Despite asking for them we didn't have copies of the reports for the meeting beforehand.

We tried to play it low key ... but they seemed also to have that strategy! So there was danger of it turning into people reading their reports around us all listening to the psychiatrist trying to show how sensitive and accommodating he was.

It didn't help that Sam kept coming in and out - each time increasingly manic. But that was just how he responds to such meetings. Afterwards we went for a walk with him around the grounds - with two members of staff - and he was fine.

We had hoped to ensure there was some clarity about plans from the meeting ... but I'm not sure there was. Driving home we were still wondering what had actually been decided and what was the plan.

But the more we talked the more we decided that we had got what we hoped for from the meeting. We managed (I hope) to disguise our horror that Sam had been administered the new PRN (on demand at the discretion of nursing staff) of Olanzapine - another anti-psychotic on top of his Clozapine - on an almost daily basis. Sometimes this had been twice a day as well as the PRN of Lorazipam. Yet they were unable to tell us of any serious incidents. To be fair the doctor had the medication record there and told us this detail - we've been to other meetings where the consultant had no idea what he had prescribed. As he talked us through it I think he shared our concern and removed the Olanzapine.

So that was one thing we had hoped for that was achieved.

For the rest of it we just want them to work towards Sam getting his leave back soon - and they genuinely seemed to share that wish. But there was little clarity of action towards that other than looking at how the ground leave he now has with two staff continues to work. But he only has that because Jane spent a long time on the phone to the psychiatrist who was covering that week and that the psychiatrist followed it up.

So we got home and treated ourselves to a chocolate biscuit and a cup of tea ... and a little later something a bit stronger.

I'm not sure how to help you catch up with events since my last post.

It's not that there have been lots of "events" - just phone calls, visits, conversations, elation and despair. Just the usual really.

It is just the up and down ... and the down and up.

Jane's spoken on the phone with the psychiatrist who was covering last week - who seemed very good and took on board our feelings that it was important to get Sam out. Jane also bumped into the ward manager when delivering Sam his fix of tobacco and reinforced this message yet again.

So they gave him leave - just around the grounds (ie the car park) with two members of staff escorting him. But at least it happened. And he's played football two days running in "the hard area" (or "cage" as we describe it.) We visited on Saturday and were able to walk around the grounds with Sam - and of course two staff. But he was fine. The more it works well the more they will see it is okay again and we can get back onto the upward spiral.

But tomorrow we have a CPA meeting - a regular planning meeting. After making a fuss about asking for a copy of his last plan, the minutes of the last meeting and reports for the next meeting we finally got a copy of the last plan. They had some trouble tracking it down. It clearly wasn't a working document then was it ... ?

My aunt died on Christmas Day. It was not unexpected. She had been ill for a while.

Sam hardly knew her so we hadn't motioned it until my Dad did. So Sam suddenly built this up in his mind.

I took my parents there yesterday and we stayed overnight before the funeral today. Everything went well and we were all again reminded at how sad it was that extended families only seem to meet up at weddings and funerals.

I had been worried about the snow and the journey back with a weather forecast of snow ... but the journey went fine apart from a short part near home. So we got back safely.

Then unpacked, got drinks, prepared a meal ... and got a call from Sam.

"Hi Sam."

Silence.

"You there?"

"Yes."

"You okay?"

More silence.

"Sam?"

"Been attacked today."

"What happened? What was that about."

Sound of banging the phone against the wall.

I called the office a little later. I tried to explain and asked how Sam was. At first all I got was that Sam had ben fine today. But after some questioning ... there had been an incident at lunchtime that had not involved Sam.

I guess it was a serious incident ... but it is bound to affect other patients. Because I suppose of "confidentiality" little was said. So it is hard to interpret Sam's reaction ... or whether anyone else there has noticed or cared.

After we met with the ward manager yesterday we went onto the ward to see Sam. She checked first to find out how he was. But it was decided he was okay - though someone stood outside the room all the time we were there. At one time Sam took off his shoes ... special shoes for walking and climbing he had got for Christmas. He was showing them to us, trying to explain. But looked as if he was threatening to throw one. The nurse came into the room asking Sam to replace his shoes. It was understandable but caused some tension. We managed to persuade Sam to replace his shoes.

It could have got difficult then but Sam cheered up. At the start he had been quiet ... he had perhaps just woken ... then he was sullen and quiet ... but later cheered up and it turned into a positive visit.

A new member of staff showed us out. He made a point if introducing himself to us and learning our names. I had said to the ward manager earlier that the attitude of staff on the ward was down to good management. This seemed to be a good example of that.

We had a meeting with the ward manager today. I was anxious ... not keen to go ... not sure of how to take it. We knew there were issues ... but how to address them?

So we wrote them down almost at the last moment ... and they looked right. Yes... that was what we wanted to say.

So we said it ... but not necessarily in the same order!

We'd sat a while in reception then met with the ward manager in the visitors' room. She was good ... tried hard to listen ... to accept ... to take notice.

But she said in all her years of experience she had not met a client like Sam before. So why do they all have to see this for themselves and try their own method and fail before passing the parcel ...

It is not good enough.

As we couldn't take Sam out on leave yesterday we visited him on the ward. We had taken in a new CD player for him. It was only a cheap one as he seems to damage or lose them so quickly. The last he had taken to pieces because, he said, he was embarrassed at not understanding how it worked.

He seemed pleased with the CD player but was a bit distracted. A member of staff let us know she was near by. They were clearly worried that he was unsettled. He looked a bit unpredictable and I was a little concerned. Then abruptly he said, "Right - are you leaving or shall I?" We started to say that we could go if he wanted us to - but then he took the CD player and marched off to his room leaving us alone.

Yesterday Jane phoned the ward to see about possible leave for Sam today. He is still not well. The nurse said not to worry as he was now being prescribed Olanzapine as well as Clozaril.

Not worry? Jane went ballistic. We've been here before ... Sam goes into temporary decline so they increase the medication dosage (already done recently) and then add further medication. Meanwhile Sam gets worse or turns into a zombie or both.

Jane managed to get in touch with Sam's psychiatrist. It turns out that the Olanzapine is just PRN - to be taken only when needed. But depending on who is on duty this can become a daily event. Usually Lorazipam has worked at calming Sam when necessary but they now say he seems to become "disinhibited" after taking that. Jane complained also about the nurse she had spoken to (who also happens to be the deputy ward manager) had not been able to communicate what was going on or offer any reassurance.

So later the ward manager rang. She too got a hard time from Jane but to be fair did do her best to be reassuring and understanding. There is a CPA (planning) meeting soon. It wold be excellent if there was a plan! Though to be fair trying to plan anything in relation to Sam seems to be fraught with difficulty. They seemed to assume that Clozaril would be the magic answer. Now that it does not seem to be working there does not seem to be a plan B.

We are seeing the ward manager on Monday but I worry that if we have already upset staff then our attitude can be counter-productive. However there has to be a balance where we can freely express our concerns without everything going pear-shaped as has happened too often in the past.

Sam has been phoning quite regularly recently. Too often this has been quite early in the morning! Often he has sounded not at all well - and a few times has banged the phone on the wall.

He phones other friends and relatives too. He will often phone his Granny and Grandad. Yesterday he told his Grandad that he was evil for killing people in the war. My father - Sam's Grandad - served in the medical corps.

Sam has had his leave cancelled again. Though it may be only temporary.

He went out for a walk the other day with one of the occupational therapy staff who he gets on with very well. It all went fine. Until just before they were due to enter the hospital grounds Sam took down his trousers and urinated on the pavement.

It seems that the kind folk over at Mental Nurse have given me a blog award for "Best Carer Blog" of 2009. Thank you to those readers who took the time to recommend my blog.

You can find out all the other winners here.

Sam was due home again today for a few hours. Though after how he had been on Thursday it was decided to see how he got on over the next few days beforea final decision was made.

He'd rung us a few times and seemed very changeable - several times smashing the phone against the wall after what had seemed to be a sensible conversation. His named nurse was going to talk with him and explain that it was best for him not to come home. He genuinely didn't want another incident and for Sam's leave to be cancelled.

But he didn't manage to have the conversation with Sam before Sam phoned us. He was looking forward to seeing us ... so Jane said he had better check with the nursing staff. Then he was angry. Didn't we understand how important it was for him to get out? He had been threatened several times that day. He could hold it together as long as he new he would get out for a few hours calm.

Then he started banging the phone against the wall again ...

I agreed to visit. I was a bit concerned about how he might be - but he was fine. Well - giddy and excitable but there was no mention of him not having come home.