Friday, September 29, 2006

It was Nell's birthday yesterday.

We got back late from a family meal.

Although he'd wanted to, Sam really hadn't been well enought to come out of hospital and join us.

There was a message on the answer phone on our return.

"Happy birthday Nell. I love you."

Monday, September 25, 2006

On Monday we both visited Sam. It was just complications with cars and Sam had asked the day before if we would both go. So we did.

Sam seemed just a little too pleased to see me. He was maybe rather happier and more cheerful than is normal for seeing your dad for the first time in eighteen hours!

He was very up and down. We popped to the supermarket to buy him some tobacco and no he didn't want to look at trainers. The ones he was wearing were perfectly alright as they were only one size too small. Just stop fussing mother ...

The drizzle postponed the walk so we went back inside for a cup of tea. Sam had insisted on buying some cigars and was popping outside to smoke them like cigarettes.

Then a walk in the park through long wet grass.

"Are anybody else's feet getting wet?" asked the man with the trainers only one size too small!

He got angry with us in the park. Why had we put him in jail? It was all our fault. He was alright until then.

Jane managed to calm him before we got to the car. We were on our way to a pub for a meal. It was touch and go as to how well he would be able to behave in the pub.

Inside he was fine. He suddenly became totally rational and reasonable. A friendly and polite young man who spoke in a friendly and appropriate way with the staff and chatted amiably with us.

He popped outside for a cigarette after he had finished and then when we were all finished did so again.

"Do you want to come with me for a chat Mum?" he asked.

It was a lovely evening. It had been a showery day but the low sun was shining, contrasting with dark clouds still lingering.

But as soon as Jane joined him outside he glazed over and couldn't talk at all until after some prompting he started talking of gangsters and murder.

We thought he was also pondering on going back onto the ward. He had to steel himself for it as he finds the secure wards disturbing. They make him mad.

I'd taken his cigars off him suggesting that they would be good for special treats when we visited. But he suddenly insisted on them back as he was by the door. He was very angry and determined about it.

It was only later that I wondered whether they might be currency - and what he might be buying with them?

Sunday, September 24, 2006

I went for a walk with Sam one day during the week - his leave was still allowed.

We strolled round the local park though Sam was soon tired. I think the pain in his wrist was affecting him.

We sat on a bench while he had a smoke. I had to roll his cigarette for him as he had problems with his arm in plaster.

A local wino shuffled past. It was early afternoon and he had a big bottle of strong cider dangling from his hand and he took the occasional swig. Although he had a long beard and looked disheveled he looked clean as if he wasn't living rough.

I would normally avoid engaging someone like this in conversation. I suppose expecting they would probably be intoxicated, might then start pestering me for money and be difficult to get rid of.

But straight away Sam called to him.

"Are you all right for a ciggie? Do you want a roll up?"

Sam recognised him as a compatriot. Someone else in difficult circumstances who might need help. Sam wanted to help. He might not have any cigarettes and could be craving one. Sam could at least do that one little thing. He could offer him a cigarette. So he did.

The man waved his thanks and shuffled on.

I was proud of Sam's small gesture of generosity. One that I would have been too prejudiced or uptight or scared to produce.

We had planned a meal on Saturday with some old friends. They've known Sam well since he was a baby. So we asked of Sam could stay overnight. It meant he could enjoy seeing friends and we would be able to have wine with he meal without worrying that one of us had to drive him back.

We were pleased that there was no problem about the leave - despite Sam having tried to run off earlier in the week. The ward manager had implied that the normal course of action for someone who had tried to abscond would have been to cancel leave.

Sam was a bit dozy when I picked him up. He'd gone for a nap after lunch and was still waking up. He asked if we could go for a walk and sit and look at the views from a favourite local spot. So we did. He was so happy just to be out in the open with space around him and fresh air to breathe.

"I hate it there," he said.

We talked of the other patients and if he had made any friends.

"I talk with them but none of it makes any sense. They're all mad you know."

Part of the problem of Sam being in such a place when he is well is that in the end he has to become mad to be on a level with the patients - for he just gets patronised by the staff.

We went home and Sam was fine in the afternoon and early evening then I could see him looking at me in that strange way. He pushed Jane away from him. He was somewhere else for the rest of the evening. Certainly not with us and our friends. He was up and about for half the night before he finally settled.

Jane woke him on Sunday morning to give him his medication and let him know he'd have to be getting ready as he needed to get back by 10.00 as his leave ran out then.

"Morning Mum," he said. "I went a bit mad last night didn't I?"

He was fine again. Really well.

But over breakfast he said, "I'm really frightened of going mad again."

It was another indicator of how well he was that morning and how aware of his condition.

On the way back he talked with Jane and made a point of reassuring her that it was not our absence that made him poorly a few weeks ago.

"It was just one of those things Mum. I couldn't help it. I just went mad. Promise me you won't blame yourself."

When he is well he can be so thoughtful.

Thursday, September 21, 2006

We ...

are so tired I guess.

Arguing over nothing tonight.

My parents aren't well. Sam is a lot better in his reason and rationality.

He went out for a walk with Jane on Sunday which went well.

Then Tuesday he was walking with a member of staff and did a runner.

The nurse caught him, grabbed his coat and they both fell to the ground.

Later in the afternoon when sam complained about pain in his wrist it was decided to take him to casualty. Of course he has broken it. So it is in plaster. A temporary cast when I saw him yesterday and he was still in a lot of pain. it made him tired and we didn't do much - but still enjoyed a walk in the sunshine. Normally they would cancel leave after an absconsion but they seem to have recognised that in Sam's case that wouldn't be productive.

Jane saw Sam today after he'd had a proper plaster cast put on. he was in a lot of pain and did not want to say much. as we'd used up the leave for this week she had to walk in the grounds with a member of staff alongside. He wouldn't withdraw to a sensible distance so it was all a bit silly.

But Sam's coming home overnight on Saturday. he rang this evening and sounded a lot better. Though he has been put on cocodamol to ease his pain which is an opioid ...

So I hope there are no repercussions.

Meanwhile we are all just very, very tired.

Saturday, September 16, 2006

Sam was well today.

Well enough to know he'd been poorly last night.

I guess after Jane left he'd become more manic. He said he'd been given some Lorazipam and he'd known he was being manic but that this morning he felt better.

They'd let him sleep in. But his breakfast then was some cold dry toast which he didn't appreciate. So he was ready to eat as soon as we got him home.

He was talking in the car of strange things ...

"Mother, when you're talking you're interrupting Jesus. It's like stones falling into a pool and the ripples spread and converge but in the end everyone in the world can hear those words."

Some people make loads of money through spreading such enlightenment.

But the day went really well.

Sam seemed to get better and better as the day went on.

We made it a quiet day. There were times when he was agitated but in the main he was very calm and well.

"They're all mad in that place Dad. I have to be mad to be there. Mad people are creative. Normal people are boring. I don't mean you dad. You're not boring." Mmmm - that's not what everyone else says!

We had a couple of walks and Sam slept in the afternoon.

On the last ward he couldn't get back to his room without staff permission. Because he was manic and awake at night they didn't want him to sleep during the day - but the lack of sleep was making him more manic. He needed some rest. They pump him full of tranquilisers then make him stay awake and wonder why he becomes manic!

* Sigh *

Sam became better and better as the day went on until he had to go back. Then of course he became tense and stressed. He looked again like someone else.

He looked like a patient returning to hospital - not Sam relaxing at home.

Driving in the car I could feel the tension increasing. He asked if he could smoke with the window open. No. I was worried about us being late and hurried - then we arrived early. Could he have a smoke in the car park before he went back in? Of course.

He rolled a giant cigarette and drew on it hard until the ash was long and glowing then drew again - and again.

We strolled across the car park to the door. Sam's named nurse was coming out. I'd met him that morning - a tall, gentle guy with an African accent. I called across about how well Sam had been today and he flashed a smile and a positive gesture. We buzzed at the door and waited. Eventually someone came to collect Sam. He was a young man with dreadlocks and yet another friendly smile. He looked like a kind and gentle person too.

I wished Sam a good night and drove more slowly back home.

Friday, September 15, 2006

I woke in the night thinking of Sam. Jane wasn't there. She'd woken earler crying.

We're both finding it hard to be positive about the current plans but are struggling for an alternative.

Jane's answer is that we'll fight to have him home again.

In the end I think though that we need some inbetween state. If we can cope with him at home okay surely a rehab ward can't say he is too difficult?

Jane visited later this afternoon ...

... That was yesterday. I did't finsh writing it. It seems a long time ago now. I can't remember. Did Jane have a row about the room and everything? I think not. She had a chat with kind staff intending to do so but got diverted when they started talking about having found our website.

Our website? Panic!!!! Was it this one? Was it the one I have written for Jane to advertise her training and consultancy work? Was it one of my photography websites?

In the end it turned out to be a website - another blog - we set up to keep people at home in touch with what was happening in France last year. It was mostly photographs with a bit of text. But from it they seem to have got the idea that we took Sam to France to take him off the medication - with the subtext that we were therefore clearly irresponsibe parents.

Yes we did want to reduce Sam's medication. But so did his new consultant. We were only continuing that consultant's approach. The only time we moved away from that was after Sam disappeared and had effectively taken himself off medication rather suddenly!

But trying to explain that ...

This morning Jane talked on the phone with the ward manager about the issues about the state of his room. Didn't you hear? It was loud enough! The manager took on board the points raised and said she would investigate.

I had to ring back about some queries relating to leave and found myself in the same conversation again. There has to be a recognition of the balance between encouraging patients' independence and self esteem compared with issues to do with a duty of care and health and safety. It would be great to discuss such these things in a less emotive atmosphere.

Then Jane went this afternoon to help Sam move. Nobody had told him he was moving. He had been in and out of the meeting on Wednesday so they assumed he knew what was happening. He had no idea what was going on on Wednesday. He was totally out of it. Surely they must have seen that?

We had emphasised the negative effects of transition. But still nobody had thought to talk Sam through this difficult time and to try to make the move less stressful. Don't they care now he is moving on? And - I emphasise - this is a good place ...

Jane was left to help Sam pack and sort his things. She'd been asked to get there by one o'clock but it was three before anyone was ready to move Sam. In between there was lots more that I won't go into here but at one time Sam was refusing to move. He just didn't understand what was going on. If Jane hadn't been there to reasure Sam I dread to think how it would have been handled.

The manager at the new ward was genuinely supportive and helpful ...


They are clearly not used to having carers involved. Just simple questions about telephone numbers, visiting, leave and so on seemed unusual to them. Jane got to see Sam's room. It was made clear that that was almost unheard of. We knew already that the Mental Health Commissioner had not been able to get to look round and he was paying the money!

Sam settled and we've spoken to him tonight.

He's okay.

He's coming home for the day tomorrow.

The previousn ward can't cope with him when paid over £500 a day but they know he's fine at home.

If we had £500 a day to buy in resources and support what could we do?

Wednesday, September 13, 2006

Sam is still very poorly. We went to the meeting today feeling pretty bad. My father had a minor stroke this morning. It was nothing serious and he recovered from it straight away. It is what they call a TIA. But it was worrying and entailed an ambulance ride to A&E. So that helped keep my mind off Sam this morning.

Sam's meeting was as expected. They don't feel they can cope with him there. The previous hospital was represented and there were all sorts of quibbles down to money and Sam's official status. Such nonsense. He's likely to move to the other ward on Friday. The acting manager from there looked like a bouncer. The psychitrist was just a psychiatrist. The are all so alike. He even said to us as we left "you do know your son has a serious illness don't you?"

Can you believe it!!!!!!!!!!!!!!

Though it seems there are some other possibilities that the are co-ordinator and the Mental Health Commissioner seem to know about but haven't shared with us yet.

It's all very depressing as it is going backwards again. This ward has the same status as the one which we escaped from to go to France. The thought of hm being somewhere similar for a long time is very, very depressing.

Afterwards we were trying to take some of Sam's clothes back to help with his move. His room was a tip and stank. He's been wetting himself and has not been capable of sorting things out. Dirty and clean clothes were mixed together in a stinking, urine soaked mass. Jane found his bedsheet underneath this with mould growing on it. There was no pillow. His bed was bare with just a plastic coated matress to sleep on.

And this is a good place. Can you imagine what it's like in bad ones?

It's because their philosophy is to give responsibility and respect to their clients. They have to knock and get permission before entering a clients room. I understand the reasoning behind all this but isn't there also a duty of care? There are health and safety issues here. What do the care assistants do?

Sorry it's not been a good day.

Tuesday, September 12, 2006

We've visited Sam a few more times since our return. Staff have started sitting in on visits - a measure of how unwell they perceive him. I cannot recollect that anywhere else before.

On one visit from me he seemed quite well but was much less well the next day when Jane saw him. We'd chatted quite sensibly but occasionally Sam would drift into some other thoughts. He recognised he was not fully well though. He told me he had thought I had died from a heart attack, had had my beard shaved off by the Mafia and that he had eaten my dead body. He recognised that these had all been delusions.

We'd asked for Sam to be given leave to come home for a few hours. Sam was so keen for this to happen. Eventually permission was given and on Sunday Sam came home for lunch - though accompanied by a member of staff. It seemed to work well though it was strange Sam having a minder with him. This though was helpful as each time Sam went out for a cigarette his nurse went with him so we didn't have to worry about him disappearing. It was a lovely day and we're sure must have been helpful for Sam.

Monday, September 11, 2006

Some of our return plans had to be altered but it led to us visiting some small towns in France that we had never seen before and trying out some nice restaurants. Then the ferry back again - just so we knew we were really going home.

We visited Sam that same day.

He was clearly not at all well. Though he seemed thrilled to see us and there were lots of hugs. Sam's trousers were wet though as he must have weed in them earlier and there were no clean clothes in his room. They all seemed to be in the wash. But a member of staff quickly helped sort it.

Meanwhile we were able to speak with the ward manager and Sam's key nurse. It was obvious Sam was not properly placed here. But they were working so well with him all we could do was to thank them.

They too had the same view as us that if Sam could be transferred to one of their more acute wads as a temporary measure until he was stabilised again then he could more easily be transferred back. The mechanisms for this had already been investigated. But they assured us that if Sam made progress over the next week they would like to keep him. They too recognised that more change could affect Sam adversely.

Sunday, September 10, 2006

Sam had originally been accepted at the new rehab ward for two weeks. He was to be assessed to see if he was suitable.

We were so worried that he would just be sent back to his previous rehab ward. They weren't able to cope with him either when he was much better than now.

Being so far away it was difficult to have any input into such decisions so we were delighted when we heard that they planned to extend the assessment for a further fortnight. They'd seen how well Sam had been earlier and they wanted to give him chance to settle before making a decision.

It felt as if the staff had a real commitment. They wanted Sam to get better and wanted to work with him. They wanted to give him a chance.

It also meant that we would be back home when they made that decision.

Saturday, September 09, 2006

I love starting a holiday on a ferry. It really feels as if you are going abroad as you cross the water.

It was a pleasant evening. A drink in the bar, a stroll on the deck watching the land recede, a lovely meal in the restaurant then back to the cabin hoping for a calm night. Fortunately it was a good night and we woke the next morning ready for a long drive.

It was sometime after lunch when the torrential thunderstorms started. It was so hard to see that cars were pulling up at the side of the motorway. We called in to the next service station but got stuck there for a while as a roundabout had flooded. The rain disappeared and the ground started to steam as the sun came out again. Later in the afternoon as we were searching French country lanes for our bed and breakfast the thunder and lightening started again. Huge hail stones the size of marbles came down making a racket on the car roof. We thought they must be denting the car or could smash the windscreen and thought of parking under a tree but the lightening that had looked so pretty in the distance was now all around us. Beside a tree no longer seemed a safe place to park.

Soon we found our destination and the rain stopped. A beautiful old farmhouse, delightfully modernised. The friendly owner showed us our room and gave us directions to the nearby restaurant. It was a very French local place with quality food. A lovely start to our holiday.

The next day we made it to friends where we were staying for the first week or so.

So nice to see them again. Such kind friends who understand about Sam. I love the peace there. It helped me begin to cope not long after I first became ill.

When we phoned home though we soon became aware that things were not going well. Sam had not settled well in the new ward. He had relapsed. His psychosis was worse than ever. Not just a blip but something that was persisting.

The staff there were great though - with us on the phone but also with Nell and my parents when they visited.

Sam had been awful with Nell one day when she visited - very rude and abusive. She'd had a hard day at work and then had to travel on two busses to get to see him and had an even longer journey home on a rainy night. Nell was upset and the staff could see and were so kind to her.

They seemed eager to get Sam well again. They wanted to work with him. They weren't blaming him for being poorly. They too wanted the Sam they had met earlier. They recognised how the trauma of the move and our disappearance could have caused a brief relapse.

Unfortunately the relapse turned out not to be brief and we started to feel guilty that our absence was part of the cause of Sam's relapse.

Relaxation away from home became something to have to work at and was very hard to achieve. It's not the first time we've been abroad when things have been going badly for Sam at home but this time we felt as if we were part of the cause of it.

So amidst the trips to the market and local beauty spots telephone calls home seemed to fill our time.

We moved on to stay with some more friends further south.

They were so pleased to see us and so welcoming. They wanted us to have a relaxing time away from the pressures of home.

So why did we keep wanting to phone home, to check our emails, to have our mobile phones alongside us at all times? Hadn't we come here to get away from it all?

Sometimes even the closest of friends can find it hard to understand.

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