'schizophrenia'

- a carer's journal

I had something
important
to write
but I've forgotten

Nell and Sam
cuddled
asleep
on the sofa

the first time
we've all been
together
for ages

Jane was at a conference today about "Recovery".

Surely the notion of "recovery" from a health problem is not so strange?

But three psychiatric nursing students who went along from their placements said that although they were half way through their third year of training this was the first time that any of these ideas had been mentioned to them.

What a great weekend!

Picked Sam up on Friday then got home in time for a take-away curry. Sam went to bed quite early as he hadn't slept well the night before.

Saturday he was really well. As usual he didn't wake up early but when he did he was soon really on form.

We went to do a bit of food shopping then had lunch. After that we drove out some way and went for a long walk in lovely sunshine. We played chess and drew a really good game then later played cards. Sam started asking about Bridge and was trying to relearn how to play it.

Sunday we had another long walk with Sam's uncle and a nice evening playing chess (one all) and cards again.

The fact that he could concentrate on cards and chess so well just showed how well he was. He's just been so confident and articulate this weekend.

This morning we had another walk, then lunch and popped to see my mum and dad before driving Sam back.

I've been pleased that I've managed the walking too - though I was worried yesterday I might have done too much. I'm tired now having returned from driving Sam back - but cheerful at having seen him so well this weekend.

I felt as if - for me - I'd had a busy day.

Meeting the manager of the rehab ward, various jobs in the house, lunch for me and Sam, preparing a casserole to be doing while we were out this evening for our return, delivering and collecting my car from the garage, dropping Jane off at the railway station, picking her up from the station then driving in to town to pick up Sam's care co-ordinator.

I drove us on to the motorway towards Sam's ward and the Managers' hearing to decide on his continuing detention.

After about an hour I realised I was not concentrating well on my driving and was very tired. I pulled in at a service station and asked Jane to drive.

We were soon there and in time.

We were surprised that Sam's legal representative was already there. We'd been surprised that he was coming at all given that the ward hadn't invited him, hadn't known - because they hadn't asked - that Sam had a legal representative.

He talked with Sam and then with Jane and the care co-ordinator.

He suggested we apply for a dismissal from the section but deferred until the local provision could be set up. That seemed a good way forward. He's in the middle of a major case in the county court at the moment and had to be at the court at seven o' clock the following morning to take a witness through rehearsals of her questions - yet he'd taken the time for an hour and a half journey each way to represent Sam.

The managers were very good. Kind, professional and clearly wanting to do the best they could. I was feeling very fragile. Tired from the day and not really up to a major meeting. I found a chair to hide out of the way.

When the RMO - the consultant psychiatrist was asked to speak to his report I became so angry but bit my tongue. Having a go at him wouldn't help anyone. It wasn't an appropriate place. But having to listen to him talking of the importance of stability and little change in medication for Sam when he had changed three classes of medication within days of Sam's arrival and had then reversed one of his decisions soon after - and then another a little later. It just made me fume, especially as he had increased Sam's Olanzapine by 50% from 20mg to 30mg which is way above the recommended dosage.

Then listening to the others and trying to contribute to part of the discussion - about when we had been in France. "Why had we gone to France?" "How had Sam absconded while we were there?" And so on ...

And Sam ...

having to sit there and listen to all of this. Eyes staring, pupils wide as people who do not really know him expressed judgments and generalities about his mental state and possibilities for the future. Again the doctor answered a question to state that Sam was unlikely to recover. To be fair to him this time he said he wished the question had not been asked. Maybe he has heard of our anger the last time he said such a thing in front of Sam.

But Sam was great. He was articulate and moving in the way he spoke of his own illness and how he was learning to cope with it.

Everyone said what a nice guy he was. They all like him. They're just doing little to help him at the moment.

It finished with Sam's solicitor asking to sum up - which he did brilliantly. He recommended that id Sam wasn't released from his section that the managers should make strong recommendations about the future - which he carefully detailed.

We waited outside for their decision. It was nearly eight o'clock now and we were all hungry. We'd had to sit and look at the huge piles of food left over from the buffet for the managers. Sam's solicitor asked one of the admin team to get him something to put some of the sandwiches in so he could take some to eat in the car driving home.

At last we were called in.

Sam's detention was to continue because of concerns about his likely absconsion and risks to his safety.

But strong recommendations - almost word for word from Sam's solicitor, were made that robust arrangements should be put in place for Sam's transfer to a local open rehab ward. Exactly what we are wanting.

We managed to sell it to Sam as a success. That the transfer to the open ward nearby was what we were wanting. He seemed happy.

It was difficult to get out of the room, the door being blocked by Sam's solicitor and care co-ordinator helping themselves to sandwiches from the trolley!

Thanks and solicitations and hugs with Sam and arrangements for the week then back into the car for the long drive home.

I was totally drained. I'd nearly walked out of the meeting a few times as I felt so emotional but was pleased I'd stayed. We got back home after nine thirty - just in time before my casserole was burned.

I was happy and moved though at the support we'd had from Sam's solicitor and care co-ordinator and at Sam's self confidence and reaction to the meeting. The pressures could so easily have made him poorly again.

Today Jane spoke with him on the phone after we got up very late. He still seemed fine. We visited a friend then had a lunch together on Valentines Day. Then we booked a weeks holiday in France visiting friends in a few weeks time.

It's important to have time for us as well.

Happy Valentines Day - xx

On a French wall

Jane took Sam his medication on Sunday morning.

"I feel better this morning," he said.

Again he'd had an episode and had managed to get over it, recognising that he hadn't been well. I'd prefer it if he didn't have the psychotic episodes at all but when they only last a few hours and he can get over them so quickly with an awareness of what has happened - well I think that is good progress.

He dragged me out for a walk in the afternoon. On the hills in the drizzle. I dragged my aching limbs up - and it did me good really. Sam chatted and said the night before he'd thought he was in a radio programme!

My mum and dad came round in the evening and Nell rang from America - so Sam got to chat with lots of his relatives.

This morning I got him up early as we had an appointment at the local rehab ward with the manager. It was an informal chat with a view to Sam returning there. Sam managed great and the manager was quite positive. But he was very straight. The risk assessment is an issue with the number of times Sam has put himself at risk. I've just remembered though that most of them were from before the last time he was on this ward - when I started this blog so hopefully!

There is an issue though. If Sam is relatively well now - is he going to have to be locked up for the rest of his life just in case he has a psychotic episode again? That seems totally unreasonable. None of us could bear that.

This afternoon we drive Sam back in time for a Managers' Hearing this afternoon. I think they will probably keep Sam on his section - but if he has the hope of moving to the local open rehab ward in the near future then I don't think he will despair too much.

Nice text from Nell to say she'd spotted lots of stars at the Grammys but was tired after working from 6 till 2 in the morning!

The weekend started with Jane and Sam's care co-ordinator going down for the CPA meeting.

The Psychiatrist did his own bit at the beginning that Sam wasn't allowed into. He looked totally disinterested and kept looking at his watch and the sandwiches. As soon as his bit was finished he left.

There was a carefully produced folder of notes that was a triumph of form over substance. On the cover it said in bold letters - "only to be shown to parents with the permission of the authors".

Sam's care co-ordinator was great. She refused to take a copy unless she could share it with Jane. "That's not the way we work!"

The rest of the meeting dribbled on to no great effect. Afterwards the manager of the local rehab ward was phoned. I'm going to visit with Sam first thing Monday morning so Sam gets an extra night's leave.

The leave started well.

I'd been busy all day getting a meal ready for friends that evening and had had several mishaps. So I was in more of a state than Sam when they arrived. Sam was doing great. He ad been able to talk to me about the CPA meeting really articulately.

I'm not sure Sam always gets on with these particular friends of ours very well but tonight he was on such good form. Really relaxed and able to engage in conversation - and he didn't disappear until near the end of the evening.

The stress of the meeting could have messed him up - but he coped with that and a dinner party as well. He seemed so well.

Saturday I want shopping with Sam at his request and we bough trainers, trousers and socks. He was pleased with them Then he went for a walk to a nearby climbing area with Jane and tried out his new climbing shoes.

He was so pleased afterwards that although he hadn't been able to climb well the activity itself had made him feel so much better.

Then maybe a mistake:

Sam had been so well and during the week Sam had gone out to a film and enjoyed it. There was a film on locally that Jane had been wanting to see for a while. Did Sam fancy it?

He seemed really well and up for it so we went. Huge box of popcorn to share and sat together watching the film.

It was very good - but quite emotional. I was sobbing by the end!

Sam seemed to have coped okay and said he had enjoyed it ...

But when we got home his eyes were staring. He couldn't settle. He was pacing around, looking around - things were not right. He knew it too.

We had something to eat and tried to calm down. Sam was trying too. He was kind of aware. He even asked to play chess and almost managed a game but things began to escalate a little.

Jane massaged his feet and we managed to persuade him to go to bed and have his medication ...

But he's been up and down dressed and undressed for cigarettes or drinks.

At one time there was a strong smell of burning. Jane and I rushed to his room - she from upstairs me from downstairs to find some paper smoldering in his room from a lit cigarette. He knows smoking indoors is not allowed. We tried to find and take all his matches and lighters.

Since then he's been down a few more times for cigarettes.

I've stayed up to check on him.

It seems quiet now -

so, time for bed.

I hope!!!

I nearly cried when I knocked over the cd rack and they all spilled to the floor.

I was trying to vacuum the living room - for the first time in ages, with our new vacuum cleaner that has been left idle since I bought it a few weeks ago. But we have visitors tomorrow and that pile of fluff under the chair as you enter the living room is big enough even for me to be embarrassed by it.

But the cleaning up soon exhausted me and I had no emotional or physical energy left.

I'd rowed with Jane before and later on this evening. I guess I'm just fragile at the moment.

Perhaps I was worrying about Sam's CPA meeting tomorrow. I know I am but not because I have a strong view. It's just time for decisions and I really don't know what is best. I can no longer see easy options. Whatever decisions are made will have problems. I think I'm worried/angry/upset that we are perhaps no further on than a couple of years ago. Though we've had ups and downs in between. Maybe I'm loosing what little optimism I had left. Jane meanwhile seems able to put a positive slant on Sam's progress and current state of health. That's so important. It makes her so powerful in her abilities to help Sam.

She's traveling across country to his CPA meeting tomorrow. It was postponed from Tuesday as his psychiatrist had a bereavement and several staff were off sick. This was a shame as the manager of a local rehab ward near to us that we like was going to attend. Of course he can't get tomorrow.

There is a Managers' Hearing on Monday evening when Sam's section will be reviewed. The outcome of his CPA meeting will surely influence that.

He will be so upset if he is not released from his section. Yet he is still not well enough all the time to be regarded as being safe if left to his own devices.

So I guess I'm confused and worried because I don't know any answers. I usually have a view on what should be the outcome but I guess any decisions now will be compromises. The most important thing is that Sam is prepared to go along with them.

After the problem last Friday the weekend went well. Sam slept through most of it! He managed the party on Saturday night well. He enjoyed meeting friends. His best friend from when he was a child was there with his girlfriend. He's just waiting for confirmation of his PhD degree. An old flame came as well (recently engaged) and seemed so pleased to see Sam and was really friendly with him. Sam was quiet and was clearly finding it hard. The number of cigarettes smoked and trips to the bar helped confirm that. So we left early and he went to bed.

But it was a good start at getting back in to being able to socialise with friends again.

Tomorrow we've got friends coming round. A good chance for me to get into socialising again. It does me good too. Sam will be back for the weekend so we'll look after each other.

PS We think Nell was working at the Grammys yesterday on her round the world trip. I wonder if she met Bono?

I've just had a couple of links from this blog which looks as if it could be well worth reading - though I have only just started!

-BEEN BROKEN- one man and mental illness - an occasional diary

I'll put a link on the sidebar.

I'll also try to bring you up to date soon! Sorry!!!!

There's a view here that Sam would be better in a local rehab ward. He's been there before. That's where this blog (though not the story!) started.

Sam is keen.

But he needs to come off his section. In many ways he is well enough - but in other ways is not. He's not fully stable and he needs more rehab first. But what rehab has he received on this expensive, private ward? Well, okay, nothing really.

So it would be good for him to move and be nearer home, but he needs to be off his section. (The legal detention.)

They can't accept him on a section.

He has a managers hearing a week on Monday. If they agree, he can be removed from the section. But is he ready? But if not does that mean he has to stay in the current place with no life at all?

There's a CPA meeting on Tuesday. Sam's care co-ordinator is going with Jane and now we understand that the manager of the local rehab ward is also going too. That shows a lot of commitment to Sam. It's a three hour round trip in traffic. They must be serious about considering him going there - given he messed up badly there before. But the manager knows Sam. When he left they said they'd love to have him back. But I always assumed they'd had their fingers crossed behind their backs.

So we'd impressed on Sam the importance of showing he was ready.

Not that it made any difference when he decided to have a few pints on Wednesday rather than going back on time. Enough for them to claim he was sick in the pub and back on the ward though Sam denies this. But it's not going to encourage other wards to want to take him on or for the managers to release him from his section.

I rang and gave him the hard word about this yesterday - not sure whether it would do any good.

He was asked to try to negotiate with staff about coming home today rather than Saturday - so that he could attend a "recovery" meeting run by his psychologist. He managed that and it was all set up.

I picked him up and he seemed okay and we stopped for lunch on the way back. After lunch he seemed a bit more insecure and confessed he was having "troubling thoughts". I wondered about perhaps taking him straight home but we discussed it and decided to try the meeting for a short time. I'd be outside and he could leave at any time to come home.

We arrived and Sam met a few others going to the meeting so I sat and waited in the car as they strolled to the venue and chatted smoking cigarettes outside as they waited for someone to unlock the door.

Then Sam walked away from the group and round the corner of the building.

I waited for him to reappear. He didn't.

I put on a jacket against the cold air and strolled over to the group. Nobody seemed to know where he had gone or why he had left them. I looked round the corner. No Sam.

Not again!

We'd just discussed what Sam was doing, the fact that he could leave at any time. There seemed to be no problem. But now he had disappeared again.

We'd talked about the importance of him not messing up if he is to achieve his goals. His named nurse on the ward had had similar conversations with him.

But, again, he was gone.

Which direction?

I tried one, then another. Then back to the car. This was walking distance from the pub he had gone to on Christmas Eve.

I drove in that direction but didn't see him on the way. Tried other alternative routes. No sign of Sam. So I parked round the back of the pub and walked round to the front door. It was the middle of the afternoon. I hoped it was closed. I didn't want to have to go in. It is a large but run down pub in an inner-city area. Drawn curtains grey from age and grime could just be glimpsed through the smeared and dirty windows. What was I going to find inside?

I walked in to a large room on bare dark sticky floorboards. I looked round to the room on the right which was empty apart from an unused pool table. To the left there was a bar in front of me and a room further round. A woman sat at the bar alone on a bar stool drink in hand. A man was talking at the bar with the bartender who looked across at me suspiciously.

I looked into the room and perused the men there individually. They were all sitting alone at their own table staring at their drink. None of them were Sam. I looked back at the barman and nodded. He nodded back and I left.

I wasn't sure whether I was happy or not that Sam wasn't there.

I drove round and round again the roads he might have taken to get there then went back to the meeting. No sign of Sam.

I walked around again and tried another pub near by. Someone resembling Sam had been in for about half an hour and had left about twenty minutes ago. It could have been Sam - but it seemed he was a regular. Sam hadn't been there for some time. Not him then.

Back to the meeting. They'd just broken up for a break. They were outside chatting and smoking. Sam was sat in the corner, red-faced, puffing on a cigarette.

He'd been for a run to get rid of his troubling thoughts. Been back five minutes.

Quite sensible really.

Just a shame he hadn't thought to mention to me first.

"Sorry Dad."

Sorry?

I'd been ready to give up again. When he disappeared I thought ...

Well. I'm not sure.

I didn't think or feel anything much.

It was just "not again" - and a feeling that I couldn't carry on pretending this was all okay. I didn't feel worried, angry, frightened, despair, any of the usual emotions that one might expect to come to the surface - again.

Maybe it's just been too often now. It wasn't an angry or despairing thought when I just felt - enough.

But I've felt that before. I've given up before. I just felt it was time to give up again.

But then he came back.

He was there safe having just gone for a run to get rid of his troubling thoughts. At that level he had behaved sensibly. How could I be cross?

So I chatted with the other group members as they finished their cigarettes and prepared to return to the meeting.

Did Sam want to join in? "No," he replied. "I think I want to go home."

Sam's psychologist encouraged him, tried to persuade him to join the group. Sam was unsure. "Maybe just five minutes Sam? I'll be waiting here by the car," I suggested.

Sam went in with them.

Over half an hour later he came out. A smile was on his face. He seemed relaxed. He was glad he had stayed. It had helped him.

The run and the group meeting had helped him sort out his thoughts. Better than an extra dose of Haliperidol anyway.

And me?

How did I feel after all this?

I've given up doing "feelings" a long time ago.

That's the trouble.