'schizophrenia'

- a carer's journal

Last night Sam was confused.

We rang the ward after speaking to him.

Although he was on "one to one" all they were aware of was him being a little quiet.

We suggested he be encouraged to somewhere quiet - calm, maybe with soft music.

Certainly away from the outdoorswhere he might make a jump over the fence again. The last thing we needed was another "incident" before he starts at the new place.

Jane rang this morning. He'd smoked a lot then snuggled in his room with some music and had a quiet night. He was still asleep.

We hoped he would be okay.

Perhaps the prospect of the move on Thursday had unsettled him together with the knowledge that we were going away tomorrow.

We're still unsettled ourselves about that.

Then this evening amidst the confusions of packing and getting ready I got a text. Who would text at this time of night?

It was from Sam.

Im just about to go sleep had a good day made pasta and sauce for tea. when do you leave? Love sam xxxx

We almost cried ...

I was on edge all morning.

Well more than that really.

Feeling very anxious.

We'd been told that someone would ring us on Friday afternoon or Monday morning to say whether they would accept Sam on this new ward.

If they didn't then ...

Well his current place don't want him. He's on one to one because they're worried.

So what would happen next? On to an acute or secure ward even though he's quite well for most of the week?

And we won't be there after Wednesday as we're going on holiday.

So it would be good to be sorted.

So I waited.

Sam continued to sleep as he does most mornings.

I waited for the call.

But it didn't come.

So I got more anxious.

Why had nobody rung?

At lunch Jane got back from meetings and we decided to ring.

Yes they would admit Sam.

For two weeks.

On a trial basis but he'll go back to his current placement if things go wrong.

If he's not a good boy.

So no pressure there then ...

He's been quiet the last couple of days but hasn't had a real "blip" since a couple of weeks ago.

We rang this evening and ...

he was confused, quiet, inarticulate - so confused ...

"Are you going to pick me up tonight then?"

No Sam.

We've just dropped you back ...

Sam visited the new ward on Thursday. We'd heard they were using as a re-assessment.

I picked Sam up from there for the weekend. He'd seemed to have enjoyed it but my first impressions were less than good. Nobody spoke with me. We had our own visit the next day.

Staff just seemed a bit cool. The body language didn't seem sympathetic. Everyone had long cords attached to their belts with keys or alarms attached. Perhaps it was just me.

Sam was positive though. He'd had a long chat with the doctor. Then he'd had a game of pool with one of the nurses.

He'd seen his care co-ordinator there and another of the Assertive Outreach staff. So there were obviously still being discussions about his possible admission. But no clues to us yet.

So Friday's meeting was a bit of a trial. It was as if we were being interviewed as well.

We'd decided to try to say little - just give the information they wanted and to be positive and supportive.

However it turned out that the Psychiatrist knew Jane though Jane didn't recognise her. She'd seen Jane at some meetings of an organisation they are both members of. She will have heard Jane give some of our history already. She will know some of the problems we have had with psychiatrists. He will know Jane's attitude to psychiatrists and to over-medication writ large.

Jane felt as if she was being tricked by some of the questions about medication and kind of went off on one a bit at one point. So much for us trying to remain calm and cool. The psychiatrist was called away before we could properly retrieve the situation though the ward manager remained friendly and professional.

They had explained about their concerns about risk. They have to be careful to have proper risk assessments and procedures in place. If Sam was to injure himself in their care they would be liable, so such places are very risk averse. But Sam is so well for 99% of the time. Does he have to be locked away securely for ever to ensure he can come to no harm during that small time when he has those blips? There must be a more sensible solution.

I think it could be good for Sam to go there. They were going to decide later in the afternoon then let us know on Monday morning.

So we still don't know.

If they decided not to take him will it be because of the risk assessment or because of his bolshy parents?

I rang the ward manager at Sam's current place today.

I'd written her a letter over the weekend offering support, saying how well the staff were helping Sam though his little blips, how important it was not to become more restrictive as this could be counterproductive ...

But they've put him on one - to - one.

So they are being more restrictive.

So I haven't sent the letter.

I was only sending it because the manager was in a panic as they have an inspection in a couple of weeks. She knows she will have to show she has done something to address the issue of Sam's recent blip - especially as the guy Sam gave a hug too seems to be coming daily to shout at staff about the event and how can they let "these people" out ...

(I like a hug from Sam but I can see how it could be scary from a stranger in the street, especially if you were riding a motorcycle at the time ...)

So she's in a panic.

She told me today that she had been against Sam having leave last weekend. Again because she had to have evidence of having "done" something. It was the Psychiatrist - who is on our hate list - who insisted it was okay. He can see there is no problem - it isn't him who is being inspected.

But decisions about Sam are being made not in terms of what is best for him but in terms of what will get the hospital through its inspection.

The one to one isn't an attempt to really care for Sam it is a way of covering their own backs.

Meanwhile while he is on one to one the new hospital doesn't want him.

But 99% of the time he is more sane than you or me - well more than me anyway.

So why is the current ward manager talking of him going into a secure unit????

Why is she the only person talking to us at the moment?

It's gone very quiet from Sam's care co-ordinator who hasn't responded to Jane's texts and phone messages. There have been conversations with the new hospital that have not been shared with us. The new hospital have excluded us from the start. We don't know what is going on. We haven't been consulted but neither properly has Sam.

He spoke on the phone today about a "contract" he had been shown in relation to the new hospital. He was really well today but he didn't understand it and wasn't able to explain it. Who is looking after Sam's interests at the moment? Whatever he signs now he certainly can't comply with when he has a psychotic episode. To expect he can shows no understanding of his current problems and strengths.

I'm maybe getting more paranoid than Sam but it feels as if we are being deliberately excluded either because we are seen as part of the problem or because they know we will not be prepared to accept their "solutions".

And next week we hope to go on holiday for three weeks.

I know it is a luxury - even though we are only staying with friends in France.

But I feel we need it if we are going to be able to continue.

But to be away when all this change is going on and we're not sure who is looking out for Sam ...

Today Jane was supposed to be visiting the new private ward where Sam has been referred and, we thought, accepted.

She rang to ask to change the time - they had been very accommodating the last time she rang.

But it seems that time it was just a clerk with no authority to arrange such things. Today the ward manager was frosty and withdrew the invitation.

Worse than that she announced that they had heard of Sam's blip and knew he was now on one to one observation. In that case they would have to review their acceptance of Sam. It might not be appropriate. On Thursday when he was to visit they would do a new assessment and impress on him the rules of the organisation.

If, when he had a "blip" he could follow the "rules" it wouldn't be a "blip". I think sometimes these hospitals don't want anyone who is poorly - or at least not until they are drugged up enough not to be any trouble.

So Jane couldn't visit today.

I was supposed to be visiting with Sam on Thursday but it seems now that I have to wait outside.

We will be granted an audience ...

finally

... on Friday.

When they have already made up their minds.

Do they want our input before they make up their minds given that we care for Sam for half the week ... ?

Sorry.

It was a rhetorical question.

If you've read this blog for any length of time you know the answer already.

But I was in despair today.

I don't want him to stay where he is now.

If they have him on one to one - because they are being inspected and have to show they are doing something - then he cannot stay there.

Sometimes doing nothing can be a brave and positive response.

But if the place he is being transferred to has such a negative approach to carers and treats us with such disdain then can we really want him to go there either?

So what is left?

Although he is on a section we feel as if we should fight for him to come home again.

If he can manage at home then how is it that all those professionals can't cope?

But I know our health will suffer and something will go wrong that would end up with him back on the acute ward again.

We are trying to move forwards not backwards.

But who is there left to help plan ...

This morning I just wanted to crawl into the corner and cry.

I couldn't see any way forward.

Sometimes it is just so hard.

Perhaps ...

perhaps it will be better later this week.

But can we really go on holiday next week - which would be so good for us - and leave this all unresolved?

We drove for an hour and a half to Sam's ward on Friday morning not knowing whether we would be able to pick him up or not. We ate sandwiches on the car on the way down.

We couldn't decide whether to continue to Jane's brothers for the weekend without Sam or just to go back home. We just didn't know how we would feel.

We met with the ward manager first.

She went through everything again. I think it helped her just talking it through once more. Perhaps the bigest trauma had been coping with angry local residents rather than Sam.

Then the consultant psychiatrist arrived.

He saw Sam and the ward manager then us and just repeated the same information again.

Then asked, "did we feel confident in taking Sam on leave?"

"Of course."

So we did.It was sorted.

No problem.

That night Sam didn't sleep.

He wasn't psychotic but he couldn't sleep.

Eventually about 8.00 in the morning he finally got off.

The rest of the weekend went well. Sam enjoyed meeting other people and was articulate and friendly - though he was very tired and slept lots of the time - day and night.

We dropped him off on our way home on Monday and everything seemed okay.

Until we got a phone call from Sam to say that he was still on one to one watch.

How could he be on one to one watch yet be granted weekend leave?

They are just covering their backs but in such illogical ways.

whooooooooooooossssssssssssshhhhhhhhhhhhhhhhhh...............

a day

and a half!

Or maybe all week.

There's another private ward closer to us.

It seems better.

He's been referred there.

Jane asked weeks ago, "Could she visit?"

Several times.

At first, "No."

From the hospital, from Mental Health Services here.

Not appropriate.

Of course not.

But when?

When the referral has been made some said.

When the assessment has been made said others.

When the funding has been agreed said yet more.

Several of these things at different times said yet other people.

"Come with me" said several before saying "no - not appropriate."

Then angry that we are upset not to be involved.

We were told ...

We were told so many different things by different people who are probably playing games amongst themselves.

One of them being whether or not carers and families should be involved in such decisions or whether it should be left to the "professionals".

Because the "professionals" are ...

* sigh *

Upset.

Tears.

Anger.

More upset.

To what effect?

None really though it seems Sam will transfer there now though he hasn't seen it even though for most of the week he is perfectly rational and we haven't seen it even though we are almost as rational as Sam for most of the week.

Because the professionals have decided. Taking into account what they think are our views even though ...

Last week we had a transfer meeting with Sam's new and leaving care co-ordinator and his psychologist. It as useful. At times heated but people seemed to understand each other. There seemed to be a useful flow of information. There was a commitment to make things work. Sam's care co-ordinator went out of her way to make genuine promises to move things forward.

Perhaps these times of transition are as important and difficult for us as for Sam.

Today agreements made yesterday seemed to have changed though those who had made the agreements didn't get in touch. It was left to arguments with others.

But the funding has been agreed. Sam can move.

Well ...

We hope he can.

Later we found a message on the answer-phone.

Could we call the ward?

Panic stations there.

Sam had gone to the pub on his daily leave. He'd had three pints of beer. On his return he was exhibiting psychotic symptoms. He ran around and climbed out of the garden. He was soon found and caught.

But soon after, an angry motorcyclist came to the door. Sam had run out in front of him and tried to climb on his bike. He as probably trying to make a good escape!

By now the Ward Manager was in panic mode - it doesn't take much.

Leave has been cancelled and the Doctor wants to see us tomorrow at 2.00.

We had been hoping to pick Sam up at twelve and take him to his uncle and aunt's for a weekend break.

Will that be allowed or will he be punished for being poorly?

It won't be the first time he has been punished for being ill.