'schizophrenia'

- a carer's journal

We had a meeting with Sam's psychiatrist yesterday. It had been planned some time ago at our previous meeting with him that we had called to raise some issues.

Sam is getting more leave now which is good for him but there are a couple of very disturbed and violent patients on the ward at the moment which is disturbing Sam and it is not helping his own mental health. So we discussed a move to the other ward which has a different client group.

The psychiatrist listened well and seemed to take note of our views. I suppose we couldn't have asked for much more. But it was he who mentioned that Sam must have been there for almost a year now. Another year of Sam's life spent locked away. Surely there must be a better, fairer way.

A little after I wrote yesterday Sam phoned to explain and apologise. He'd been little distracted. He was sorry at how he had been with us but ... well things are difficult on the ward and he couldn't help thinking about it.

Some of what we had worked out was right but there was more too.

He had been worried about the patient who had got beaten up and had to go to hospital - but he was back now and seemed okay.

But he was also worried about another, new patient. He had been cutting himself and defecating on the floor in his bedroom. His room was covered in blood and faeces. Sam was upset and worried about this patient. He had been trying in his own way to help him.

He had also kept going to the office to ask the staff to do something. Despite how busy they were all supposed to be ... when we visited Sam yesterday there were at least five of them in the office.

Sam asked if they could get a bucket and mop and cleaning equipment. He said he would go and help clean it all up if a member of staff would come with him. Of course Sam was told to go away. But he kept asking. When Sam phoned tonight the room had still not been cleaned. Perhaps they expect that patient to sleep in the room as he had created the mess. Sam knew that was not right. He understood the distress of the patient and was angry that the nurses couldn't or wouldn't sort it out. He was even able to understand the reason why. He compared it with nurses who had to see lots of amputated legs and needed to turn off from it. He understood it ... but he could not forgive it.

So Sam spent time with the patient and talked with him in the yard and tried to understand and help. Then the patient started to shiver violently and Sam thought he must have found God and been better now.

More likely perhaps that he was going through "cold turkey" coming off drugs. Yet although this young man was in a UK hospital he was being allowed to suffer this with the only support coming from another mad patient.

Despite Sam's illness I am proud of his humanity and care for others.

Sam rang this morning. He knew we were collecting him and a member of staff at two o' clock. He was comming home until five. It had all been arranged. But when he had talked to a nurse about it there seemed to be a problem. Please could we ring and sort it out. He seemed so reasonable. Not cross in any way. There was clearly a minor communications problem that could easily be resolved, seemed to be his attitude.

So Jane rang the ward to enquire. "What leave?" was the response.

Jane had rung to arrange it earlier during the week. When she did so she was told that it was already in the diary. When Jane explained this the nurse on the phone said she would see what she could do. But a patient had been taken into hospital suddenly the day before and a member of staff had to be with him at all times which was putting pressure on their staffing of the ward. Also the war was currently rather unsttled. She would see what she could do and would get back to us later.

An hour later she phoned. She was off the ward now writing a report but hadn't managed to finalise anything. If we rang before we set off she could let us know if by then anything had been arranged.

So we rang then to find she was in a handover meeting. She would be discussing with the new nurse in charge what could be done. Eventually we got a call to say that they hadn't managed to organise anything for Sam to be able to come home so we arranged to visit. We had to wait for ten minutes in reception but eventually someone came to collect us and even sorted out for us to have a walk round the grounds with Sam. A young female nurse who we have not met before accompanied us. She was a little nervous and tentative but at least she was keeping an eye on Sam.

From what Sam was saying and bits we picked up from staff it seems there is a new patient on the ward who can be very difficult. Sam thinks another patient had been knocked down by him the previous day. Perhaps it is he who is in hospital. They probably need additional staff on the ward at all times to ensure safety and security. But it is very unfortunate how this also affects Sam.

He was not at all well while we were out with him. He was talking of violence, guns and death and the end of the world. He seemed very confused and worried.

Though he did manage to try out some of his climbing skills upside down on the underside of a concrete fire escape! So he is in form for his climbing visit next Wednesday. Let's hope that still goes ahead.

When Sam rang the other day he sounded more excited that I had heard for years. He had just been climbing with member of staff. He'd had a wonderful time and was thrilled.

The day hadn't started so well though. He woke early as he was excited about the prospect then after breakfast a female nurse had said that he wouldn't be able to go. So Sam went on and on about it all day and then the member of staff who was supposed to be taking him said that it would be possible after all. But when it came to the appointed time the minibus hadn't returned so again it was no longer possible. The staff member took Sam for a walk in the grounds and a cigarette. As they were walking round the minibus returned so they rushed to get Sam's gear and set off.

He must have been so disappointed just before they were finally able to go. Perhaps that added to his pleasure in the end.

He gets so little real pleasure and happiness it was wonderful to hear him sounding so cheerful.

There is another visit planned to a new climbing wall next week.

It is good that they are getting him out more now. There had been a problem last week when he had hurt a female nurse through being rough and inconsiderate and had had his leave stopped. I am sure the incident partly came about because of his frustration so I am sure restarting his leave will pay dividends.

I've just heard about a very distressing case of a seven year old girl who has been diagnosed with schizophrenia. Sam was nineteen when he received such a diagnosis - and even at that age I am not sure if the diagnosis has helped him. If you doubt it then just read the whole of this blog. I am also not sure if "schizophrenia" is a useful term. There are many professionals who would like to get rid of it as its use can be unhelpful. I cannot imagine though how difficult it must be too for the girl's parents in trying to decide what is best for her.

You can read about the case here.

I know that I am very concerned about the diagnosis being given to a seven year old as this almost inevitably seems to lead to the administration of very powerful neuroleptic medication. Others are too. You can read the views of Intervoice here.

This is not a intended as a campaigning blog. I aim to tell the story of Sam from my own perspective. Then readers can make up their own minds of what has worked well and what could have been done better.

But this is a case that I think should receive wider attention and I hope that readers will at least look at the case with some concern - and hope for this young girl.

We've been away for a few days visiting friends. It has been a short but very nice break.

We often find something goes wrong with Sam while we are away so when my mum phoned to say that they'd not been able to visit Sam as planned yesterday my heart sank a little. They went to see him in the morning but he was sleeping. He had been very lively during the night and hadn't slept so they didn't want to disturb him. We rang to see if we could visit today on our way home and that was fine.

We were met though by Sam's named nurse to say that there have been a few recent problems. He has been slightly violent on a couple of occasions - once he pushed a door into a nurse, trying to get into the office as he wanted his tobacco, leaving her with a badly bruised arm. So his leave had been stopped for a few days to make a point. There is a point to be made but I'm not sure Sam will get it. If he could respond logically he wouldn't be there in the first place.

So we were unsure what kind of Sam would meet us on the ward.

Well he was fine! In really good humour, friendly, welcoming, rational and ... just nice to be with! We didn't stay very long as it was soon time for Sam's cigarette and we wanted to get home to unpack. But the time with him was good and promising. A nice welcome home.

We are going away for a few days.

Visiting old friends in France. I have often found peace there ... I know I did when I first became ill.

We've not been there at this time of year though so I don't know what to pack. Thick jumpers or tee-shirts? As we are going for next to nothing with Ryan Air who discourage checked in baggage it will probably be lots of tee shirts that I will wear in layers depending on the temperature!

Something usually goes wrong when we are away.

I wonder what it will be this time ... ?

I think I was a bit worried about Sam coming home again for a few hours this weekend. He had been very unstable on the phone during the week and was quite unpredictable when I saw him earlier in the week. I just wondered how he would cope with leave home. Also I did not know the member of staff who would be accompanying him. That can feel like an additional stress too.

It might be coincidence but I felt I was coming down with something again ... I started to ache all over and especially in my back and started to feel shivery.

But once Sam was here it was fine. He wasn't well and was over-elated and the staff member was quiet and withdrawn ... but it went very well. Sam enjoyed it and we did. I'd got some of Sam's climbing equipment out that he had asked for as he has been promised leave with someone from the Occupational Therapy team to go to a local climbing wall. It reminded him of old times. He found the climbing shoes he had worn in South Africa before he became ill - where the is a picture of him on the Internet that often comes up in search engines.

But when we went on a short walk in the afternoon he insisted on taking his climbing gear with him and doing some low level bouldering. Getting his now seventeen stone frame off the ground requires more strength than he has so it is quite safe but you could see he had not lost his technique.

And he loved it.

Climbing again ... if only a few feet off the ground. It was reality again for him. He needs more of this not less.

Sam seems to have been taken out a lot this week and more is planned. Perhaps even to a climbing wall which he would love. So perhaps our rant to the doctor and to ward staff has paid off with real results.

Though sadly his mental state seems to be deteriorating again. I hope they don't relate this to his going out and cut it again.

On the phone to Jane he said he had relatives and friends there on the ward with him who we know are scattered around the country. He wouldn't be persuaded that they were not there.

I had a rant to a nurse on the ward the other evening. She is really helpful and cooperative and was trying to do her best ... but seems to assume that everyone else on the ward is the same. I was just trying to arrange leave for Sam with us this weekend .. but it as as if we were getting in the way and Sam already had leave planned with staff then. If only we had arranged it earlier!

Well, I just blew - Sam hadn't been out hardly at all until the current week. The previous week it had taken three phone calls to arrange some leave for him. Until now he only got extended leave when we asked for it. It was if again we were being penalised. I could hear my anger and kept apologising for it before I went off on another rant again.

I was lucky. She is a kind and considerate member of staff. She understood. She sorted it. Sam could come home for a few hours this weekend.

Sam spoke to Jane on the phone the other day. He was worried about Nell.

He often expresses such worries but hasn't done so for a while. It seems that he was taken out with a group into town to play pool. That in itself is good - that he is regarded now as well enough to go out on visits organised by the Occupational Therapy Department. But into town? To play pool?

It might be what the other guys fro the ward want to do ... and what Sam wants to do but ...

It brought back to him memories of extreme situations on the streets and in such places. He was remembering bouncers and scary situations he had got himself into in cities and such places. It has combined with lots of news about violent city murders. He lives with men who talk to him of murders they have committed. As he is on a forensic ward this may be true rather than illusion. It has made him worry again about Nell living in the city. He said though that it was good that he and Nell had been brought up with love ... that none of his acquaintances on the ward had similar backgrounds.

So Sam seemed disturbed by his visit into the city. But perhaps the countryside is a scary place for other patients on the ward?

Although ... might they not find some peace there also if they gave it a try?

I visited Sam on Tuesday. It should have been a family meeting but Jane was unwell and there was a mix up with dates so instead it was just Sam, me and his care co-ordinator.

I took in a book Sam had found at home at the weekend but forgot to take back. It was about Yoga and he was so articulate talking about that and explaining it to us ... but became staring-eyed and aggressive when I tried to discuss him making requests of activities for his planner.

He told his care co-ordinator he was being negative and told me he could read my mind and knew that I was being aggressive. But when we left he gave me a hug and said he loved me as if to undo those earlier words.

We had a good day with Sam on Saturday ... we could use our car to pick them up so that was okay ... went for a walk, saw Sam's Granny and Grandad, listened to some music, looked at some photos, found a book Sam wanted...

So a good day.

Why hadn't that and other good days with us at weekends been considered when planning the coming weekend?

I'm shaking.

Just totally in a state. I don't know why. It was just a phone call from the ward to arrange some leave for Sam this weekend. Jane had rung earlier. They were just returning the call.

They had some leave in for Sam on Saturday when we wanted him to have leave with us. And on Sunday it turned out. They were just doing what we had requested ... demanded even!

But it was as if we hadn't phoned early enough ... as if Sam was at fault for not discussing it in writing up his planner.

We have put so much energy into Sam getting more leave then it is almost being used against us.

It was as if we hadn't tried to organise it soon enough. They would organise it when we rang given enough notice she said ... but last week it took Jane three phone calls to organise it.

I was fuming but trying so hard to be calm ... so I was almost shouting at her but apologising at the same time knowing that anger would be counter productive. I was trying to be calm and reasonable but could hear my anger in all I was saying.

Then in all the emotion I got the days and times wrong and had to ring back again ...

So a nice cup of tea now ... and perhaps a glass of red in a minute.

At least Sam is getting out now. That is what we have asked for so I shouldn't be complaining. It is all good. Isn't it ...

Sam phoned this morning just as we were getting ready to go out.

He could hear his dead Nana's voice in his head. Couldn't Jane hear it too? She must be able to ... just listen ... Nana was speaking to both of them. He was determined they could both hear her though he always denies he ever hears voices.

Then ...

Stop it ... talk normally now!

Was someone going past? Had it suddenly got too much for him?

Then a few minutes later a call from the ward. He had run out of tobacco and money ... he had so much on Sunday.

So later in the afternoon on our way back we called in and dropped off tobacco - and underpants as he seemed to be running out of those as well! We went for a short walk around the grounds but Sam was curt, surly and aggressive. He chain smoked as we walked around even though smoking is banned in the grounds - after rushing across the road outside the hospital to cadge a light from a passing stranger. I'm not sure if the member of staff with us chose to ignore all this as he wasn't aware of it, was just really laid back or had decided it was the course to cause least conflict.

There was a problem getting Sam back on the ward because the reception staff were playing at being little dictators again (some of the nurses are afraid of them!) Sam just needed to get straight back there as he was finding it difficult. But it was soon sorted.

And we've managed to organise a few hours leave for Sam with us at the weekend so that is good too.

Later Sam phoned to speak to Jane .. "I love you mum." It was his way of apologising for earlier knowing he hadn't been in a good state of mind.