'schizophrenia'

- a carer's journal

Lots and lots to say - but no time to say it!

We've been so busy today - including meetings with Assertive Outreach, registering with the doctor, various phone calls.

Sam's been really well - except for when he's been ... , well, not so well.

But totally different from hospital.

Open and talkative at times. Interested. Prepared to try things. Offering to wash up and unpack shopping - whereas in hospital he just existed.

We spent half an hour this evening chatting - even though I was exhausted by the day - in a way we haven't for months. Sam suddenly felt he could talk without being judged and opened up again about all sorts. But then a few minutes later his pupils were wide and he looked uncomprehending as we tried to give him his medication.

As I write this we're trying to get him to bed...

It's going to be fine.

It is.

I'll explain the plan as soon as I have time.

I've shed some tears today.

The first time was in the Managers' Meeting to decide Sam's fate.

It lasted for two and a half hours and listening to everyone else was hard.

I had to ask for my say.

I think the managers were already fed up with listening to everyone for so long. But I wanted my say. It was compact, to the point and - I think - powerful.

So powerful that I couldn't get out the last couple of sentences as I had brought myself to tears - though nobody else.

The next time I was in tears was when we were called back in for the Mnagers to announce their decision. They had to go through the four criteria in order - and I've maybe not got this quite right, but it was kind of as follows.

They had decided that Sam was suffering from a serious mental health illness.

That such illness was of a nature that was appropriately dealt with in hospital.

But ...

BUT ...

They had decided it was not of a nature that he needed to be detained and therefore they were discharging him.

I just started to sob.

I can feel the tears welling again now so I'll save the detail and the thanks to everyone until another time.

It's not going to be easy. When Sam got back he just wanted to go for a walk on his own - well, wouldn't you. But what if he went missing???? His uncle went with him. They're playing chess next door now. Sam's having to help him as he doesn't really understand chess whilst Sam is a good player - but it's so good for Sam to have to help someone else. He's communicating for a purpose.

Teaching Jane's brother chess would drive me mad - but it might lead Sam to sanity.

Thank you for all who sent their best wishes for today and thank you for keeping your fingers crossed.

It worked.

It's been a difficult day for me today
... but probably even more difficult tomorrow when it is the Managers'' Hearing to decide on our request for Sam's discharge.

I saw an Occupational Therapist today to help with my 'Chronic Fatigue Syndrome'.

She was surprisingly helpful.

It confirmed all the things I had been trying to do but have stopped doing now because of ...

... everything.

If you don't make space for yourself then the energy to help others just isn't there.

It's obvious really - but doing it and taking control is really hard.

I found myself this afternoon going against all the things I had relearned in the morning.

Suddenly I was seeking stress rather than avoiding it though unintentionally.

If Sam is released from his section there is so much to do to get the plan working.

Having got back from London seeing Nell off we've been busy trying to sort things. Yesterday I was pleased to have started a few things I'd known needed doing for ages.

Today after the occupational therapist

..........

Sorry - I was going to tell you all about today and what everyone has done preparing for the hearing tomorrow and Sam on the phone (he sounds so sensible) and how we're preparing for tomorrow and how many people have worked so hard to make this work and so much more. We've had so much help and support. If Sam doesn't get released it won't be because we haven't done everything possible.

But I'm just done in.

I need to be fit in the morning so I'm going to bed now.

I'll let you know tomorrow.

Promise

We got back on Sunday evening from seeing Nell off.

No it didn't take so long to get back but we decided a day to ourselves, staying overnight somewhere nice (but reasonably priced!!!) would be good to help us come round.

We had a lovely day in London on Friday. We met and had lunch with a friend of Nell's in Covent Garden. We then left them to have fun while we went off with my sister and a friend and found ourselves drinking in a French bar in Soho. Then we met Nell and her friend for another drink near Covent Garden.

The day seemed to have involved lots of drinking but I was still walking quite well as we set off to my mother's cousin where we were staying. (As well as being a very nice man he does live very conveniently close to Heathrow!)

We got to Heathrow in good time to meet Nell's friend and his family. Lots of tears but none of them mine or Nell's. We were very brave though we had both doubted our ability to be so.

She is now in Delhi and there was an email from her waiting for us on our return home.

This is the first view of that city from a young woman:
"Just had a walk round Delhi today very hot and very busy, keep getting accosted and nearly run over but apart from that it's fine!!"

Good luck Nell.

I'm sure it's all going to turn out great.

I've just got back from London and was going to post when ...

... I found I had written and forgotten to post the following (I'll try to let you know how it went tomorrow.)

...................

Nell leaves from Heathrow on Saturday morning.

She'll be gone for twelve months.

It's a wonderful opportunity but ...

... we're going to miss her so much.

So, so, so much.

When Nell and I saw Sam at the weekend he was dozey from the medication. He wasn't able to say goodbye to her properly.

Tomorrow we set of for London and she leaves on Saturday.

Jane visited Sam today and she thinks they forgot to give him his lunchtime medication. During the afternoon he was much more himself and able to enjoy the time together.

Talking to Nell about it this evening brought tears to her eyes. Although she had said goodbye to Sam he hadn't said goodbye to her.

She wished she had gone today.

But it might have been no different. It must be difficult for Sam to know that his sister is about to travel the world while he is still incarcerated.

I'm still feeling the affects of the walk with Sam.

We didn't walk that far - but further than I have walked for ages.

Why though do my arms and body ache as well as my legs!!!

And then I had to get up for a meeting today at Assertive Outreach. We're all trying to plan carefully to make sure we have the best possible chance at the Managers' Hearing next week.

It was good to see the general support for our plan. They seem to want to help us make it happen.

It's given us some optimism.

Jane spent much of the rest of the day chasing up the appeal to the Mental Health Review Tribunal.

The hospital mental Health Act Office swore they had forwarded our request and the Tribunal office was just as adamant that they had never received it ...

... until

- "Oh, yes. I thought I remembered the name. Here it is at the bottom of the pile on my desk."

Without the phone calls it could have remained there for weeks.

Just back from seeing Sam

I'm really tired even though Nell drove all the way there and back.

It has been a lovely warm almost summer day and we walked for miles. Sam's long legs strode on ahead as Nell and I rushed to keep up. It's the furthest I've walked for ages and felt it was good - but I'm feeling the after effects now.

Sam is taking tranquilising medications at lunchtime now. I can't understand the logic. He said he couldn't enjoy the walk as much because the effects were so powerful.

I want to ask the reasons for the change - but it's got to the stage where questions from us are filed into either the folder titled "parents being fussy again" or the (now larger one) of "complaints". I cannot understand why communication should be so difficult.

It will be the last time Sam will see Nell for a year. She sets off in a weeks time to travel round the world.

She tried saying her goodbyes to Sam but he didn't have any words to wish her good luck.

I had a phone call from the ward today.

Sam's had toothache for weeks.

It seems to come and go. He mentions it intermittently - in fact I think he may have mentioned it months ago.

The phonecall from the ward was an angry and frustrated one.

They'd made an appointment with the dentist for Sam.

They'd got him out of bed and dressed and ready to go with two nurses.

And then ...

And then he decided he didn't want to go to the dentist.

He could do pain.

He'd once put his hand in the fire.

If he could accept pain why go to the dentist to get rid of the toothache?

If the ward had phoned us earlier I know we could have persuaded Sam to go. If only to say that he needed to cooperate to make 'the plan' work.

He wants to make 'the plan' work.

He would have agreed to go if we had been able to talk to him.

But of course they just rang to -

- well I'm not sure why, I can't find the word.

Are we seen to be to blame. Do they just want to tell us what a naughty little boy he is. What was the point? They never ring to tell us how well he is doing.

We'll just have to integrate a dentist into 'the plan' !!!

.............

Regaring 'the plan', things are moving fast again.

There's so much I'm not sure where to start.

And tomorrow Nell and I will visit Sam.

So I will try to update you properly soon.

I know I've not been posting as often as I would like recently.

I've calmed a bit now.

But today has been quite emotional for me.

Nothing has really happened that we didn't expect.

But - well it's just been disappointing.

Draining.

Upsetting.

I just wanted a quiet place to be and Jane needed to be angry.

We compromised.

It was today we had a meeting with Sam's consultant about 'the plan'.

To start off he'd been positive, supportive, helpful.

Then it all went cold. Somebody had got to him with reality rather than vision.

We've been trying to do vision at this end.

So many people have been changing their tune the last few days. Pretending they hadn't said or hadn't quite meant ...

... and saying one thing to us and another to someone else and then denying it.

It's difficult enough as it is without duplicity.

Sam's consultant listened to our arguments. Accepted their validity. But no - he'd received legal advice that he must put a bar on Jane's request that Sam be released from his section.

It's his responsibility but no, he's going to pass the buck. He thinks a tribunal should consider it. He's been got at. It's more than his job's worth.

And his job is worth a lot.

On his salary you would expect he could make a decision rather than pass the buck.

But no - even he's not allowed.

Sam's previous consultant walked past us in the coffee lounge, eyes like thunder, ignoring us, striding purposefully.

He's the hospital's medical director and I wonder what hand he's had in all this.

Sam's consultant said Sam's care coordinator had supported the bar. But the care coordinator had told me he had refused to comment.

We've had words tonight. I've accepted the consultant may have misunderstood but we both know he has been trying too hard to keep in with both sides. It makes it difficult when trust goes but he knows we can make difficulties too.

All this slows everything down.

Poor Sam.

He didn't understand. He looked so confused. He thought they had agreed to let him out. He refused to believe otherwise. We were trying to explain to him that we wanted to request an appeal but he couldn't understand.

He knew we'd won.

... but we hadn't.

He knew they were going to let him out.

... soon we hope, soon.

As we left I gave him a cuddle and a kiss.

We've met with the administrator who deals with appeals to get all the paperwork in operation and she and the consultant have been speedy in their responses already.

We want an appeal next week. This has dragged on too long already.

But the consultant, it turns out, is on holiday next week.

In any case one of the main issues is having in place proper arrangements for the end of 'the plan'. That means that everyone has to have yet more meetings about it and write reports to be considered by everyone else so they can meet again by which time it will be too late for 'the plan'.

This is time limited. We've made that clear to people today - but of course they see that as our problem not theirs. We're determined to push this along as quickly as possible.

It will work.

We'll make it happen.

.................

Jane had a meeting tonight that she could have done without - regarding some possible future work but nobody there had their act together so it was a bit of a waste of time. She flies off in the early hours of the morning to present a paper at a conference on the far side of Europe from here. While she was out this evening I cobbled together a powerpoint presentation for her from her notes. We're so organised here!!! At least I have my uses! Jane still has her packing to do - I doubt there'll be much time left for her to sleep tonight. Life goes on.

Doing the powerpoint presentation was good for me. I had to concentrate on something else and was pleased by the simple output of clear black print, displayed on a plain white background carrying meaning about something other than Sam and mental health.

A friend, who is a prize winning author, is writing a novel relating to the issues raised in this blog.

I know that she is researching the issues very thoroughly - from practical as well as theoretical perspectives.

If any reader of this blog is a carer and would be prepared to write a few words to help her I would regard it as a real favour.

I know how hard it can be to find time for this kind of thing - but please help.

Sometimes novels and plays can reach a different public and have a greater impact than our carefully written arguments to beaurocrats and politicians.

If you are prepared to help there is an explanation here.

Thank you.

I'm going to keep you in suspense about 'the plan' for a bit longer.

Because I'm in suspense too.

To start off with it all seemed so positive. Maybe it was all going too well.

I'm sure the professionals were all trying to be positive and supportive but have all found out that it is of course more complicated.

The biggie at the moment is whether we can get Sam off his section.

We think we can - but there is the easy way and the difficult way.

It's looking increasingly likely that they are going to make us do it the difficult way.

On Friday Jane met Sam's consultant at the hospital. She had a meeting with the Risk Assessment Manager about our complaint. The consultant found out that Jane was there and had been asking for him and sought her out. He was really positive. There was just a meeting on Tuesday to confirm things but he was sure everything was going to be okay.

Tuesday came and went without us being able to contact him. I asked his secretary to email any letter so we got his letter on Wednesday.

Other issues to do with the Mental Health Act had been brought to his attention. It might be that he would have to bar Jane's possible request for the section to be disapplied. He would keep us in touch.

I wrote back trying to be sensitive to his position but also putting our point of view and asked for more detail. He did get back to us today - but possibly even more negatively. He felt it might need to go to the Hospital Managers or a Mental Health tribunal.

He's just covering his back.

Or rather the hospital is insisting he does. Fancy having a senior officer who is responsible for "Risk Assessment". It's all about covering "risk" - not doing the best for patients in his care.

The fact is that Jane had a row with the Risk Assessment Manager on Friday. None of the changes she had proposed to put into place at their previous meeting had been done. Not one. "You're asking us to move too fast," she said, clearly upset.

Just asking them to do what she had promised.

So now we wait until a meeting on Tuesday to find out whether - as now seems likely - that it has to go to a tribunal or whether the consultant will accept our request.

If it was his own decision I think he would go with us. But he's frightened of going against the hospital management. Legally though it's his decision.

On the huge salary he gets he ought to be able to be prepared to make and stick up for his own decisions.

If it comes to it I shall say that to him on Tuesday.

Perhaps if you all write in to him saying "Please, please let Sam out!!!!" he might relent.

But then again ...

When we spoke to Sam's named nurse on the phone last night she said that the consultant "was going to write to us".

She then kind of clammed up. She'd say nothing else to help. Maybe she knew nothing else to say to help.

Today after lots of attempts I finally got through to the consultant's secretary. After a brief discussion all she would say was that he "was going to write to us".

Why should that seem so threatening?

After some positive support he now can only communicate in carefully thought out words to appear neatly printed on paper?

We just want to know what's going on.

Everything seemed to be going so well with "the plan".

It's perked me up.

I've been happier and more cheerful - and feeling physically stronger too.

When Jane spoke with the consultant on Friday he seemed very helpful and supportive of "the plan". Current arrangements rely on him and the hospital not opposing Jane's appeal against Sam's section. He just needed to confirm it at a meeting today.

It was ward round today so we guessed that was it. Jane phoned later and spoke to Sam's nurse.

She hadn't been there but had read the notes at handover. There seemed to be a problem. They weren't going to support the "leave". But that wasn't what we had asked. She didn't know any more but the consultant would write to us.

But we want to know now. There are arrangements to make.

The consultant was in meetings. We can't get through to him. We've left a message.

All of a sudden I realise how precarious all this and my own emotional state is.

I feel just a jumbled wreck again now worrying about it.

But it's going to work out okay.

It is.

Sorry I've not been in touch recently.

Busy, busy, busy.

Just got back from France yesterday evening and straight to a friend's birthday party.

The washing machine broke down while we were away and today the central heating wouldn't work.

And Nell has loads of friends taking over the house this weekend to say goodbye before she goes travelling at the end of the month.

And Jane's been to see Sam and meet the consultant.

And I've just got back from picking a friend of Nell's up from the station.

And we stopped off at the supermarket for provisions for all Nell's hungry friends.

And we're off to a concert tonight.

And Jane's gone to get soem fish and chips.

And ...
... and ...
... and ...

and I'm bloody knackered.

(Excuse my French.)

Actually - I'm doing okay.

I think working on THE PLAN must be doing me good.

I'll get back to you soon.