Wednesday, December 28, 2005

Borry. I'm bull of gold.

I'll wride domorrow.

Tuesday, December 27, 2005

Sam's care coordinator rang on Christmas Eve. It started off a bit with her self justification and what had we expected them to do?

So I explained that I thought they might be interested - need to know actually as they were supposed to be coordinating this fiasco, that last year her team (which she manages) without us requesting it put in place carefully worked out systems of fail-safes if we had any problems over Christmas.

And then I just started.

Normally I would have passed her on to Jane but she was out with Sam picking up thebturkey and other things for Christmas Day. I tend not to get too involved in such discussions as I know I'm not always in control of my emotions and can quickly and unexpectedly become either very upset or very angry.

So I explained as best I could that I asumed her role was to have an overview of what was going on, to be able to assess and review whether the current provision was working for Sam, that the Assertive Outreach consultant psychiatrist had said she planned to keep in much closr touch with Sam when she'd transferred him to a secure ward - before she discovered it was going to be half waybacross the country, that I assued that all the team would be wantingto ensure some continuity and planneing about Sam's care, that we were getting pissed off that it was only us who had any of that long term overview and whose job was it to be doing that if we weren't there.

Well that's just part of it, scaled down, without the "over-expressed emotion"!

She was apologetic. What did we want her to do. She started suggesting various schemes where she and otheres would make more regular contact with Sam.

"No - you haven't got it!"

I wasn't interested in the mechanics - an agreement on the number of contacts by different people each month. Just accept some responsibility for long term plannine then all the rest will follow. If we just agree to the visits but nobody takes any responsiblility they can just say - well we agreed so many visits and have done that, "What more do you want?"

They need to accept their responsibilities and be accountable for them.

So ...

"Can I visit Sam?"

"Of course."

"Tomorrow?" - Christmas Day! Perhaps she had a present!


So she did visit on the morning of Christmas Day. At least it got us up to get the cooking started!

Sam got on with her. he felt she had listened. he showed her some stuff about Shamanism on the internet that he thinks describes his experiences well. She listened to him. She discussed alternative uture plans. She shared them with us.

She and the Assertive Outreach consultant psychistrist wwould meet the hospital pscychiatrist. The plan would be to move sam to a more open rehab ward nearer to us that Sam and we liked when he was there some time ago.

She thanked me for my comments the other day. They had helped her reassess her role.

I'm impressed. So many professionals are defensive and afraid to admit errors. There was none of that. She recognised that I was just trying to be open about our views rather than have a go at her.

I think we may have sorted our disagreements. I do hope so. And it may be that they are trying to sort out alternatives for Sam that he is happier with.

Otherwise he will just disappear again.

Monday, December 26, 2005

Jane sent a text to the young woman who had told us where Sam was on Friday night.

She sent a lovely text back to Jane. We read it together. The text included, "people look out for Sam."

After all this time his friends - and friends of friends - still care. He clearly still means something to them.

We both found tears in our eyes.

Saturday, December 24, 2005

That stupid, stupid, arrogant man.

It was partly his fault. He'd said yesterday that as Sam had now been ill for so long he would almost certainly remain ill and have to take medication for the rest of his life.

He also used the word "if" when talking about Tom being removed from his section In January when it runs out. There was an implication he might renew it.

He ignored Sam when Sam Joined us and did not acknowledge his presence throughout the meeting.

A stupid, stupid, arrogant man.

Sam's really well this morning. He's been out with Jane to pick up the turkey and other last minute items.

We all had a cuddle first thing. Sam seemed contrite. He just suddenly gets these urges. He said he was frightened by the consultant saying he might never get better.

That stupid, stupid, arrogant man.

Friday, December 23, 2005

:::: STOP PRESS ::::

Sam's home safe in bed.

The friend of a friend of the daughter of a friend saw Sam in a nearby pub looking lonely and passed on the message.

We drove out there straight away. As we got close we saw Sam - walking homewards - and pulled to a stop. As I walked back Sam was doubled over being sick in the gutter.

We got him home safely. Little time for conversation but we soon put him to bed. He had 57p in his pockets - surely the rest hasn't gone on beer?

Lots of phone calls to tell people.

And the police returned to check all was well. Perhaps they preferred a visit to us than patrolling English streets an the Friday night before Christmas. But they were very kind.

Sam's missing again.

He was so looking forward to Christmas - as we were and all the family.

On the phone the other day he asked if Nell was going to be upset about being away from home this Christmas - as if he knew he would be.

But he's gone.


I'd been intending to write a post today about Sam's RMO (Responsible Medical Officer - Sam's new psychiatrist). I was going to say that he was:

a stupid, stupid, arrogant man.

But I got distracted by another event.

We picked Sam up today for his Christmas leave. He seemed quiet but otherwise well. He played music in the car as we traveled up the motorway but started to talk a little as we neared home. Back home he looked at a picture that Nell had sent from Australia, of her in a Santa hat - and said how beautiful she looked. He talked of popping down the road to see his best friend ever again who is home for Christmas now. We had a cup of tea and and a brief chat. Sam sounded well - though he said he was anxious.

A few minutes later - where's Sam?


Nowhere to be seen.

I'd not felt well today - and with the meeting with the psychiatrist and the drive there and back, I returned home just wobbly and aching all over. So I sprang into action! Well I tried. I looked in the neighbourhood including the local pubs. I kind of expected to find him in the local having a couple of pints to help him cope with Christmas. But no.

I drove into town and went to the bank. He'd taken out £80 from the bank in the larger town nearby. Why they keep giving him money without ID I still do not understand.

It was clear he wasn't just having a walk round to gather himself. This looked like serious intent.

So off to look round town - the bus and train stations, the pubs, while Jane called the police. I parked next to a police car in the station car park. I told them about Sam. They took down all the details again, even though Jane had phoned them in, and seemed to care.

I got home as Jane was talking to Sam's care co-ordinator. The manager of the Assertive Outreach Team. Jane was just starting to tell me about it as the police arrived to take a statement. Pages and pages of it. I got into a state trying to find and print off an appropriate photograph of Sam from the computer.

Then a friend rang.

Is there anything I can do?

Well you could pop round with a take away meal!

I could pop round with a take away meal.

What a good idea - why didn't we think of that?????

So she did.

And we are sharing a bottle or two of wine.

I hope Sam doesn't ring any second saying "can you just pick me up from ..."


And do Assertive Outreach care? Do they ...

So nice of them to take the time to call back saying what has this got to do with us? Last year, without us having asked, they had plans in place to ensure we had help if we needed it over the Christmas leave. This year? Do make sure you ring the hospital as if Sam is in breach of his section 17 leave he may need to be taken back there rather than home ...

Thank you care coordinator, manager of the team, for your thoughtful and sensitive response.


It's good a friend having come round - chatting with Jane as I write this.

If it comes to it - Christmas without Sam and Nell is going to be very hard.

Wednesday, December 21, 2005

A phone call from Nell, some pictures and comments on my sister in law's website (that I set up for her), thoughts of our first Christmas without Nell, ongoing sagas in the Archers - well who wouldn't be brought to a few tears?

When Sam rang yesterday he seemed really well - but bored. Because I doubt they're letting him out much - and what is there to do otherwise?

He's looking forward to coming home too.

I just hope we can get him back again.

For those who have forgotten or are new to this blog do look in the archives for Christmas last year.

Tuesday, December 20, 2005

We were both tired from various jobs and Christmas shopping and things. So were getting a meal together late when Sam phoned.

Really well.

But bored.

Because he's feeling well and there's nothing to do in this rehab ward! - But holding it together as he's coming home at the weekend.

If he's as well as this ...

... it'll be GREAT!

(But if he's not ...

- last Boxing Day he ran off rather than return to hospital.)

Monday, December 19, 2005

It's getting so near to Christmas now - and I'm kind of getting wired up about it. I guess it's having Sam back and us having the family here - minus Nell who is in Australia *sob* - and the house being a tip and not even having sent all the Christmas cards out yet, never mind bought presents ...

I'm sure it will all be fine - but no Nell to help polish the table and put out the crackers and keep us all calm ...

So, for no real reason, I was close to tears tonight.

But I'll be fine again tomorrow and we'll get it all done.

I had an email from a poet yesterday wanting to use one of my photographs for the book cover of his second collection of poems! It was one I took in France earlier this year. So that's good!

As it's getting close to Christmas I'll attach this years Christmas card. I have also done some calendars with photographs of where we live and have some left over. If any readers who know us would like one just let me know.

M xxxx

christmas card 2005

Sunday, December 18, 2005

We'd pressed the buzzer and the doors had been unlocked to let us in to that small area between the two sets of locked doors to talk to staff through the window.

And this is a rehab unit - not a secure unit.

Jane was let through to go to the visitor's toilet while I waited for Sam. I chatted with the member of staff through the window. Had she seen Sam today? How was he? Yes. He was fine

As soon as I saw him - through the glass window in the door - he had that look. He was stooped. His eyes were staring. His arms by his side away from his body. "Fine?"

Once he got out he seemd better. We hugged. Where did he fancy for lunch???

So we had a good afternoon. Though he was quiet.


Angry because he wanted to be better. He wanted to be out of the mental health system. He was angry with himself because he still isn't better.

After lunch he wanted to sleep so we drove further than planned and he slept in the car in a car park while Jane looked for a Christmas present for my mum and somewhere we could all go for a cup of tea. In the end we had the cups of tea - well Sam polished off a huge chocolate gateaux and a chocolate milk shake.

And back to the unit with Sam seeming lots better.

We're seeing the psyciatrist on Friday. I asked Sam about things he would want us to raise. He just wants to be out of there. Out of the mental health care system. He's said this for ages. And often we think he's right. But our adventure in France didn't work out either.

So ...

Saturday, December 17, 2005

I was just about to post to say we're visiting Sam tomorrow but haven't heard form him today and wonder if everything is okay and should I have phoned today ...

When - he phoned.

And sounded great.

Looking forward to seeing him tomorrow.

And having him back next week for Christmas.

Wednesday, December 14, 2005

Sam sounded great on the phone yesterday afternoon - but then in the evening he rang unable to hold a basic conversation. He sounded very confused. We took it in turns trying to talk with him and maybe help bring him round again - and deter him from going over the fence.

Very draining.

He rang this morning to say he had been up all night and was feeling fine. I wonder if the staff are?

But the manager rang later to arrange Christmas leave and a meeting for us with the doctor.

She said Sam had been up all night and had tried to get out a few times. She was still very understanding.

But the doctor has had a rethink on the medication. I was stunned! But sadly it is just to reintroduce the Semi-sodium Valporate - not to start to reduce the anti-psychotics.

Tuesday, December 13, 2005

Jane managed to talk to Sam's psychiatrist on the phone for the first time today. You know the one who has only just met Sam but who has made two major changes to his medication since Sam's arrival there.

Did he seem to have an open mind and be prepared to listen?


Was he a pompous arse?


Had he read Sam's notes properly.


Was he a typical male, psychiatric consultant?


Was he prepared to reduce Sam's medication?


Has Sam absconded twice since the changes in medication?


Was he prepared to have a reasoned discussion?


Was he engrossed in his own self-importance?


Is Sam going to be encouraged to stay at this new setting?


Are we going to go over there and grab the consultant by the scruff of the neck and say look sonny just take some notice and get real whilst giving him a good kicking?


- well probably no.

But it's certainly what we feel like. Just so powerless whilst some pompous fool has made decisions which are taking us backwards again.

It's left us both very empty today and frustrated waiting for things to start to go badly wrong again.

Sam went awol again yesterday.

Over the wall. A few pints in the pub and a chat with real people. The van was out looking for him, he saw it, round the corner, bumped into a care nurse from the ward who lived there, a chat - possible return then - no - a quick run , straight into the arms of the van ...

(Being in a small community certainly helps.)

Phone call home.


Needing support and people to talk to.

Then another phone call. Conciliatory. Apologies.

But - still needing people that will talk to him like a human being not a patient.

Monday, December 12, 2005

We had a lovely weekend. Really.

Sam seemed to enjoy himself and he coped with meetings with friends and his granny and grandad really well.

It was so nice to have him home - and he really appreciated it too.

Ho told both Jane and I separately how much our love and that of other friends and relatives had helped him.

When he was about to leave with me to return on Sunday evening he was staring me in the face. Something was going on. He couldn't talk to me. We managed to get Sam in the car. I was a little concerned about the journey if he was going to be unpredictable.

We sat in silence for a few minute and then I asked,

"Do you want a cd on."

"If you like."

I switched on whatever was on the machine. When the next track started Sam tuned it up loud.

"I like this track too," I said but got no response.

A way down the motorway Sam asked me to stop for him to go to the toilet. He'd seen a sign for the next service station and knew it was in only a few miles. When I stopped he dashed out. On his return he stopped for a quick cigarette. We stood in silence for a while than as he extinguished the cigarette he said,

"I'm sorry about before. About staring at you and that."

I asked him more as we walked to the car.

"Wait until we get inside," he asked.

He turned the music back on and it was difficult to hear - but basically he had heard a voice telling him something about me - that I was evil or something - and he thought there was someone else in the car with us. But he was okay now. And he was apologetic.

He'd had a brief psychotic episode, had stayed in control of it, was able to recognise it as such and put it into context immediately afterwards. That seemed like huge progress to me.

It's the kind of thing that makes them increase his medication rather than celebrate the progress he is making.

When we arrived at the ward we were welcomed back and both said what a great weekend it had been.

Did I tell them about the brief episode?

Of course not.

Sam and I hugged, smiled and said - see you soon.

I tried to drive slowly home as I was tired and drained but the miles seemed to disappear and I was home sooner than I expected.

Later Sam phoned - just to reassure us that he was back safely. That he was fine. Everything was fine.

Maybe not really - but so kind of him to want to reassure us. Another measure of his progress.

Friday, December 09, 2005

He's back!!!!

Found by the police doing push-ups in the church yard!

Well - at least someone was looking for him. In semi-rural areas somehow it's taken more seriously than in the cities where ...

- I guess there's just so much emotional stuff going on all the time, what do they address first?




Oh - and they're still letting him come home tomorrow!

Can you believe it?

And they're going to raise strongly with the consultant the issue about his medication on Monday!!!!!

What do I do when Sam goes missing?

Come and write on this blog I suppose.

It's kind of a tradition really.

I've been cross about recent changes in medication and the fact that we've had difficulty in speaking to the consultant. He was supposed to be doing a ward round today and we were told to phone this morning. But, of course he was late and didn't have time to speak with us.

He did agree overnight leave for Sam this weekend but relayed that he would have to see how the weekend goes before he could reduce the medication. But we're having Sam this weekend so how can they monitor him ... ?

Sam phoned earlier this evening. He sounded very blank, very down, very depressed. He said he was anxious and was feeling very sick. He knew he had to be off his medication. He wasn't a "schizophrenic". (It's only Sam who ever uses that term.)

He spoke to us both and we tried to cheer him and discussed him coming home this weekend.

Then a call later this evening. The nurse was so upset. Sam was clearly anxious and wanted to go for a walk. The notes said that physical exercise was good for him. We had emphasised that. So she let a member of staff take him out.

And he ran off.

Of course.

But he was coming home this weekend.

It was a trial for him coming home at Christmas which he wants so much.

This may now not happen. It may be the first Christmas we have not spent with Sam. And Nell is in Australia.

So why did he go? Where has he gone? Does he have any plan?

I think not as he sounded so desolate and blank when he phoned earlier.

If we'd talked longer ...

Wednesday, December 07, 2005

Received this morning:

a letter from Sam,

with instructions to post it on to his Reiki practitioner,

even explaining how to find her address.

A carefully worded apology, presented as a card, written the evening the ward thought he was exhibiting psychotic symptoms - so put up his medication.

Tuesday, December 06, 2005

An accident on the motorway delayed us so the journey home took about a couple of hours. We'd had a nice afternoon but I was tired on our return home.

Later Sam phoned. We're hoping that he may be able to come home overnight at the weekend and he wanted us to make him an appointment with his Reiki teacher. The last time Sam saw her was on a day when he was very ill and had escaped from hospital. He frightened her son who hid in his bedroom. There was a family funeral that day and the Reiki teacher could not get dressed until Sam had been collected. She was not best pleased. Jane tried to explain this to Sam as gently as possible. It was unlikely she would be very keen to see him at the moment.

Sam was really upset. He'd no idea what he had done and promised to write her a letter to apologise.

On Monday we got a phone call from the hospital. Sam had had a bad weekend. He was very psychotic so the doctor had increased his Olanzapine from 20mg to 30mg. They were unsure about his proposed leave home.

The main problem seemed to be that he had shared with them the story about the face and had been unsettled on Sunday evening after the phone call home.

So they have made a huge increase in his medication. He's been on high levels before without it helping. Getting him onto a lower dose though is then very difficult as he is so sensitive to changes in medication.

Sam found other patients there difficult to hold a conversation with because they were so poorly. Perhaps they aren't so poorly - just drugged up to the eyeballs!

Sam was so well on Sunday but he is seen by staff as poorly and the other patients as well. maybe that is what they want there - nice, quiet, drugged up patients who will cause no problems.

I'm so angry about this and am searching for the most effective way forward. We've not yet spoken to this consultant - who only visits the hospital once a week. Consultants rarely like being told what to do by carers or having their judgement questioned.

Monday, December 05, 2005

No post for ages and then a long one. It might be quantity over quality though I’m afraid - I've just realised I've overlapped with the previous one - so two versions. AND I’ve not even finished it – not got to the important bit! To be continued tomorrow!


Sam moved to the new rehab hospital last Monday. That seemed to go okay. He phoned us a few times and seemed very well. He phoned Tuesday afternoon and was very well. Then later we had just gone to bed when he phoned again. He sounded confused and psychotic but knew things were not right and was ringing for support and advice. That in itself seemed a huge step forward. He rang first thing in the morning sounded much better. He slept a lot the next day but seemed okay again later and for the rest of the week.

However on Saturday he rang. “I’ve got some bad news,” he said. “I hate it here.” There was nobody to talk to. All the other patients were too poorly to have a conversation with. The staff still treated him as a patient. He felt he was going to get poorly again himself in such a situation. Almost any of the other wards he had been on would be preferable, he said.

This was very disappointing. We felt this place could really meet his current needs. Staff were friendly and popular. But now …

If Sam hated it so much it just wasn’t going to work. Apart from anything else there is a danger he might just go over the wall.

We visited him Yesterday.

It was great not to have to drive so far – about an hour and twenty minutes rather than the nearly three hours each way we’ve had recently. There were a few showers but otherwise it was a pleasant day. There is still so much colour in the trees for so late in the year.

Sam seemed really well and was pleased to see us.

We drove out to a country pub, had lunch and chatted away. As we were leaving Sam started taking again about how difficult he was finding it at the new hospital. He started to calculate when his section would run out. Then he could leave of his on volition. It didn’t seem likely that if he was as he is now they could section him again.

We drove to a nearby small country town. There was a Christmas market and fair. Sam seemed eager to go. So wandered around and chatted and looked at the stalls and exhibitions. We wandered round the fair and watched children and adults having fun. Time for a cup of tea and more chatting and jokes. Sam talked of an experience he’d had recently when he saw a face superimposed on the face of a nurse he was talking to. He has had similar experiences in the past. He discussed the experience logically, rationally. He was loath though to share such experiences with staff. He knew their reaction. He wanted to be seen as well.

Other than this discussion Sam showed no signs of psychosis.

We finished our tea then were attracted by the lights of the fair, bright in the late afternoon gloom. First we looked at a falconer who had so many different owls tethered. Sam seemed fascinated. We restrained ourselves from buying Father Christmas hats with flashing lights – a bargain, at only a pound each! But we were unable to walk past the dodgems without a go. I wonder when the last time was that Sam did this?

Back to the car and on to the hospital.

Sam wasn’t looking forward to his return and seemed a little unsettled by it but there was no fuss.


I’m tired now – not been feeling too good today.

And I’ve got a meeting tomorrow with my shrink and occupational therapist that I should be thinking about.

I’ll try to finish this tomorrow.

Thursday, December 01, 2005

Sam liked the new setting -

except of course it is still a hospital.

Staff still treat him like a patient rather than a new acquaintance. Sam can tell the difference. It's important to him.

He started off really well. Better even that he had been recently.

He phoned on Tuesday really well. Then after we had gone to bed later that night he phoned again.

Very confused, psychotic, but aware that things were not right. He explained the next day, "I had these crazy thoughts but I didn't want to go mad again."

By the next day he seemed loads better again. Jane had a positive chat with the ward manager today.

It's kind of positive in a way. He can recognise when he is getting ill - and he doesn't want to be there. In the past we believe he has often sought refuge in psychosis.


I've been quite well recently and spent the day yesterday trying to do a bit of Christmas shopping. That was after a night that was not to good - thinking of Sam? I'm not sure. I wasn't aware I was. Then today I feel totally drained - but so does Jane. Sometimes the emotional energy involved in all of this is immeasurable even when you are not aware of it.

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