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Wednesday, April 30, 2008

I tried some relaxation this morning to calm me and prepare me.

I don't know why I still get so stressed out by these things but ...

We had a meeting this afternoon first with the hospital manager and the clinical manager. It was mainly about issues to do with the attack on Sam recently. It was at their invitation as we had been asking questions. They wanted to reassure us.

Actually they wanted to placate us but in the end all they could do was make it clear we disagreed and that they saw no need to make any changes. So Sam has been assaulted on that ward three times in the last nine months and nothing is going to change. Does that mean he may be assaulted three more times in the next nine months?

We raised some other issues and they tried hard to listen politely but there was hardly what you could call a meeting of minds. They did not seem able to conceive of the issues from a family members point of view. Interestingly the hospital manager who said his background was in accountancy could empathise better than the clinical manager. That seemed to say a lot.

Then we went to the CPA meeting - a planning meeting for Sam with all involved in his care. There were more attending than usual - which seemed strange. Last time the nurse from the ward had been quite isolated in her views during the discussion. So this time there were two nurses and the ward manager. Also they had invited the patient advocate who we had not met before - despite having tried to contact her several times. They seemed to want to balance our involvement. We felt as if they perceived us now as a threat rather than a partner in Sam's care.

The meeting went fine but we still had that feeling of suspicion and quiet antagonism. After the meeting they stayed after we and Sam's care coordinator had left for their own debrief. We were waiting in the corridor to be taken to the ward to see Sam again.

Sam had been in the meeting at our insistence but had left before the end. We discovered later he had angrily been demanding to be taken to the meeting but only brought down when we insisted. When we met him back on the ward he was angry. His message in the meeting was that as he saw no reason why he was detained there he was not prepared to engage with what was provided - though nobody seemed to be able to pick that from his confused answers to questions. Later with us he was more articulate as he expressed his anger at being detained and his eloquently described his need for freedom. It was of course our fault.

As we were leaving we were in the locked double doors outside the ward when Sam came back down and started kicking violently the adjoining door. I banged on the locked door to try to catch his attention but he turned and left. His new named nurse came out of the ward manager's office to see what the commotion was about. They had clearly been discussing us all together.

I'm sure they think he would be fine if not for his fussy parents. But at home he is so much more settled than on the ward. However he is agitated on his return. They don't like that. More medication, calmer evenings a quiet ward ...

Where does recovery sit in all of this?

We got home emotionally drained. Jane hadn't the energy to go to her loved dancing so we got a take-away meal and shared a bottle of wine before watching a recording of some recent Van Morrison concerts on the TV.

Sunday, April 27, 2008

It was great to see Sam so well when we took him out yesterday. He seems so much more rational and together most of the time at the moment - and even when he is not he later seems to be much more able to recognise that some of his thoughts might have been irrational.

It was sunny and we walked high on the moor with a brisk wind blowing us away. Jane and the nurse with us chatted and argued about medication. Though the nurse let slip that he believed in creationism. We wondered whether someone with such fundamentalist and, I believe, irrational beliefs could be persuaded rationally about other issues - such as medication and mental health.

He is a nice bloke who is going to be working closely with Sam. However he has some very firm views about mental health issues. I'm worried that his mind might be as closed to other alternatives as he is to a scientific view of the creation of the universe.

Sunday, April 20, 2008

Sam was in good form when he came home yesterday. Nell was home for the weekend. Sometimes Sam can be antagonistic towards her. Perhaps he is jealous of her life and freedom. But this weekend he was fine with her and genuinely seemed to enjoy her company.

Friday, April 18, 2008

I was tidying up a room we used to use as an office. There was an old letter there writen by Sam. It was four pages of lined A5 paper. He was writing to a friend. It was lucid and fresh. It talked of him reading a famous philosopher and he understood what it was about. It talked of plans for the future and an understanding - of sorts - of why he was detained. He was trying to understand and rationalise the doctor's view.

It was from when he was first sectioned.

He couldn't write a letter like that now. The differenece between now and then?

Five years of hospitalisation to help him get better.

Thursday, April 17, 2008

I felt a bit wound up yesterday morning. Perhaps it was having knowing I'd got two meetings at the hospital in one day. We'd got a family meeting with Sam, his psychologist, care co-ordinator and a nurse. Then after that we had a meeting with the ward manager.

The family meetings are good - but Sam was talking in such incomprehensible ways expounding some of his very strange beliefs and skipping from one thing to another but in a very insistent fashion. He would keep leaving then come back and start again. As with all of these meetings he gets better as they go on. We often have about ninety minutes but perhaps even longer would be good. He was quite antagonistic towards his psychologist - who he really respects - in a very personal way. Sometimes he just likes to have a go at one of us, to hurt us, to exercise some power when most power has been taken away from him.

The next meeting was to get feedback about Sam's assault. The ward manager had little but platitudes. She seemed not to know that this was the third time that Sam had been assaulted on the ward in about nine months and had nothing to reassure us it wouldn't happen another three times. There were issues we had to raise about a couple of staff then she raised problems about transport when Sam comes home on leave with us. It seems the staff aren't insured to be in our car whatever that means. So who knows what will happen on Saturday.

It was late when we left and I was exhausted.

Tuesday, April 15, 2008

Sam's phoned a few times - but he was not as well as he was on Saturday. When he phoned last night he as quite wild. Today when he phoned he said - don't worry I'm not like last night, I'm fine now.

I suppose that is the new version of "I went totally mad last night," which he used to say to us.

Unfortunately he was still quite high!

Saturday, April 12, 2008

Jen rang the ward this morning to confirm Sam's leave today. It was the nurse who we don't always see eye to eye with. She made it clear it depended how Sam was when he woke up. Almost all the other staff would have responded more positively.

Did we need to ring again then? No, they would phone us. They didn't so we assumed it was okay.

When I arrived to pick up Sam the staff member who picked me up from reception said the nurse in charge needed to talk with me before we took Sam out. She made an issue about Jane not being with me. Strictly it seems both of us and the member of staff have to be in the car to take him home if we are strictly to fulfill leave requirements. Some worry about this. They are more concerned with the strict following of regulations than what is sensible or good for the patients. But it is her job - so okay. And she did agree to let Sam come home. Over the weeks this has only been an issue on one previous occasion and I thought the nurse had agreed to sort it out.

She also said that the ward manager wanted to talk with me the following week and was loath to explain why. In the end it turns out there is an issue about staff insurance if they are traveling in our car. Now what on earth is that all about?

We'll find out I suppose next week.

Sam though seemed very well. We got home and drank tea and chatted and listened to music and went for a walk. I was worried on the walk at first as Sam was suddenly strange in his attitude to me - asking for a cigarette lighter when he didn't need one then refusing to give it back. I was worried he was going to run off and wanted a lighter so he could light his cigarettes!

Then we went to a place he used to climb when young. He was so pleased to talk with the nurse about it and show him all the places he used to climb and describe the climbs. Sam looked really happy. It is good to see him like that. I was worried a little at first when he tried some climbing - and quite amazed now he has lost weight again how he had retained his technique. He was sensible though and didn't go too high.

On the way back from there we crossed a school playing field. He ran on too far ahead and wouldn't slow down. I was worried how the nurse would view it - and was worried a bit give Sam had been funny earlier on. Some young men were playing football (soccer). Sam ran amongst them to join in. Then one kicked the ball towards him. He juggled it with his feet and knees - again he still had skills he'd learned in his early teens and they were impressed. Impressed until he kicked it over two fences and into a garden. Sam climbed a fence we couldn't climb and kicked the ball back. On the way back to us he caught his face on a string that was strung between two posts as part of a building project. This disoriented him and he seemed funny.

He started walking in the wrong direction towards the top of the rocks where we had been. Not a safe place, especially seeing the look now in his eyes. We followed him along though and soon he was fine and returned with us. Perhaps my fear and worry just stoked his own condition - I don't know.

Back home he was fine again. We drank more tea, he smoked more cigarettes and we chatted about music with his nurse. It seems that he, Sam and I all share some musical favourites.

Monday, April 07, 2008

We took Sam out on Saturday with a member of staff. It went really well. He was in good form.

Until having to go back he became agitated in the car.

Then he rang in the night at two in the morning.

"It's late Sam. Go to bed!"

On Sunday we had family for lunch. In the afternoon Sam rang again. Hi giggled and called out for a few moments then put the phone down. Clearly not as well as he had been the previous afternoon.

There have been some discussions about whether Sam should press criminal charges against his assailant. Sam is clearly not well enough to do this and it would distress him. He finds it difficult to talk about anyway. The staff want something to happen as they feel it is in the best intrests of the assailant to know his actions have consequences. They may be right but I find the idea of involving the police in such a case where the assailant is mentally ill quite inappropriate. Especially if they want it to go to court. If they wanted to make a point surely the police should have been called in at an early stage to question him. That would have emphasised the seriousness and is probably all that was necessary. From what we can piece together we think he may have heard Sam's voice in his head saying something to him and he reacted violently. I don't see how police action can cure this poor young man's voices.

Friday, April 04, 2008

Jane went to visit Sam yesterday as soon as we got back. She had a useful meeting with the ward manager. They have set up an internal enquiry and are considering involving the police in the assault. They wanted to know if we would recommend to Sam that he press charges. Of course no we wouldn't. First of all Sam wouldn't want to. Despite it all the assailant was a friend. Sam would not want retribution on him. Neither would we. He is ill. That is why he is detained.

However there is a feeling that he at a stage where he needs to realise that such actions can have consequences. But we feel that is for the professional staff to decide not us. It seems they can bring charges rather than us having to which seems more appropriate.

Just before Jane left she noticed that Sam has big bruises on his arms. She was worried this might have been from staff restraint during the incident. This afternoon she was able to discuss it with a nurse on the ward. It could have been from the assault itself. Sam was found curled on the floor trying to cover his face with his arms as a rain of blows were aimed at his head.

That image in our minds is so distressing.

Thursday, April 03, 2008

We've just got back from a weeks holiday. regular readers will know that something almost always goes wrong when we are on holiday. This time was no exception.

Two evenings ago we were sitting in a restaurant with a friend having an interesting conversation over good simple food and a glass or more of local wine. My mobile phone (cellphone) rang.

I could see straight away it was Sam's hospital ward. I walked outside into the square to answer it.

"I'm sorry but I have some bad news ..."

Oh dear - what was it now? Had he somehow got out again?

No - he had been beaten up again by a patient. The same patient who has attacked him violently three times now - twice on this ward and once previously on another ward. This is the third time he has been badly beaten on this ward - twice by this same patient and another time by a different one. Sam is detained to keep him safe. It is felt that he is a danger to himself out in the community. He has put himself at risk there - but in recent times the occasions when he has been seriously injured have been in the care of the hospitals. This is supposed to be a place of safety but yet again he was taken to "Accident and Emergency".

As soon as we got back from the airport Jane went to the ward. She saw Sam and had a productive conversation with the ward manager.

Later I spoke with Sam on the phone.

"Can I tell you a story," he asked?

Of course.

So he told me a little about the attack. I think it was when he described what had happened afterwards that I started to cry. When he talked of the two burly men who came to take him away in a car. He thought they were taking him away to beat him up some more. Of course they were two nurses from another ward taking him to hospital. How much more thoughtful it would have been to have made sure he had a friendly face alongside him.

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