'schizophrenia'

- a carer's journal

I went to a meeting that Jane was chairing this afternoon.

I hadn't meant to.

I've been to enough meetings at work to last me for the rest of my life.

It was a meeting between carers, with some local professionals, and some new regional officials. Jane was keen to get a good turnout of carers. Another carer rang to ask for a lift. She was too nervous to go in on her own so I went along as well.

A nice lunch was provided but I would have been happier enjoying the early autumn sunshine.

Jane began the meeting with confidence and flair. I was quite proud of her. We were all asked to introduce ourselves with our names and something relevant about ourselves (with instructions to avoid any Health Service jargon!)

When it got to me I said,
"I'm Mike Smith.
"I'm Jane's husband.
"I do as I'm told . . .
. . . Sometimes!"

And I didn't even get one of Jane's "looks"! It raised a laugh though.

She did really well and the meeting was a success. Lots of positive feedback afterwards.

I even told her how well she had done and how proud I was of her.

Must be getting soft in my old age!

I've been feling really anxious all day.

There's no particular reason for it.

Sometimes if I'm feeling anxious I search for what it could be that is making me anxious and then start to worry about those things and get even more anxious.

It may be caused as there are some unrelated family problems at the moment that only impinge on me indirectly but are causing Jane some significant stress. When you're already as stressed out as we are finding space for other peoples admittedly very serious problems is really hard.

I visited Sam again today.

The nurse who let me in took me to his room. He'd gone back to bed again. Well - not actually bed. His bed was stripped and he was sleeping on the floor. He's been sleeping on the floor for the last week or so.

"Why?" I asked.

"Because I want to," he replied firmly. There didn't seem any answer to that really.

He was wearing a dirty jacket but with nothing beneath it. We were going out for lunch. The nurse asked Sam if he wanted to put a shirt on underneath the jacket. Sam was quite clear that he thought he was appropriately dressed.

So we set off for lunch.

At times we chatted and laughed together and it was fine. But Sam has some increasingly bizarre ideas again at the moment. We think it is because of the changes in his medication. One is being phased out as another is being phased in. So the effects of one are wearing off before the other has kicked in.

Not that anyone has thought to mention this to us.

Sam talked of one of the times that he was most ill as his happiest time. He reminded me of a time when he thought he could hack in to the cash machine outside a bank. Rather than taking out thousands of pounds, public spirited as he was, he went in to explain to the bank about it in the hope they might give him fifty pounds as a reward.

He asked to speak to someone in private and explained the situation in a room. The bank official took notes, thanked Sam and said they will be in touch.

How he didn't get arrested beats me.

He's still miffed that they didn't send him the fifty pounds because he still thinks he could hack back in if he wanted to!!!!!

I am a keen amateur photographer and have another photography blog which I also try to keep up to date.

So I was interested recently to come across an article about Nina Dean. She was a beautiful model who suffered from schizophrenia and took her own life. Her family then found many of her photographs. It turned out that she was also a keen and talented photographer.



Nina's fund was set up. An exhibition of her photographs was held with sales proceeds going to Rethink. Some of her prints are still for sale if any of you are interested.

Details are here
...................

I first came across the story about Nina from the Hubin - stories online website. I've just found this website and look forward to investigation it further. It looks as if it could be very useful and provide a different perspective perhaps.

Sam's mental health tribunal meeting was today.

Even though his appeal was heard last week by the 'hospital managers' we had to go through it all over again today. The tribunal is a very official legal affair chaired by a lawyer and including a psychiatrist and a lay member. It's all part of the legal function. Sam is detained under the mental health act. The tribunal are looking at it partly from a legal point of view to see if the detention is appropriate. It's almost like a court of law. Well, it probably is a court of law.

I was going to go as Jane had a meeting. She decided to cancel the meeting and go instead.

I was relieved. I knew the stresses wouldn't help me.

I had a pleasant day in the sunshine. (Yes, I know it's probably raining now but I did say I'm running on a couple of weeks time delay!)

When Jane got back she was distressed.

Sam's appeal had not been successful, as we expected and hoped. However it was hard hearing so many negative things being said and so few positive.

Sam's medication is being changed at the moment and he seems to have been getting less well over the last week or two. This might be expected. It was suggested by his consultant at his CPA meeting. However nobody has talked to us about it. We don't even know if they have noticed. We assume it is because of the change in medication but nobody has said.

Jane called in at the office - full of people - as she left, but nobody talked with her.

Sometimes it's as if we don't exist.

I drove to see Sam in a bit of a state.

Just everything was catching up with me.

I took my time so I wasn't rushing and giving myself more stress.

A nurse let me in to the ward through the double locked doors. Sam was around somewhere. She'd been delayed trying to find him for me. She knew I was taking him out for lunch.

We went to his room. He'd gone back to bed.

Soon we got him kind of sorted. The nurse suggested he changed out of his dirty shorts covered in paint with holes from cigarette burns and put on a clean pair of trousers.

"No," he replied.

"I'll just put on my jacket."

A nice jacket we had bought for him at the start of the summer appeared. It was pale in colour and now covered in stains.

We set off. It was nice to see Sam again though he was fairly quiet.

I chatted about this and that but left lots of space. I didn't try to push too hard.

We had a pleasant lunch. Sam seemed to have enjoyed being out and the change in food. Although not floridly psychotic he seemed less well than recently. His medication is being changed and the doctor did warn me at the CPA meeting that he might get worse at times while they adjusted his medication.

I drove back home again through the drizzle.

Dragging my aching body from the car on my return home was a struggle.

We've had a few additional emotional pressures from different branches of our families over the last few days.

When we feel at the limit of what we can cope with such additional pressures just seem too much.

However we've coped and even had praise from family members for the support we've offered. This is at some cost to ourselves. Jane in particular has been stretched in so many directions. This could have financial implications. The funding for her part time work has just come to an end and the thought needed to develop new strategies has fallen to the bottom of the list. So we'll be tightening our belts for a few months at least.

I just hope that all these pressures don't tip Jane over the edge. In many ways she is doing so well but I'm flagging again and am finding it difficult to support her when she is getting emotional in different ways about all that's happening at the moment.

The variety of issues at the moment seems to have brought on my Chronic Fatigue Syndrome again and I'm just tired and aching again all of the time. I then feel less able to engage in the emotional aspects as this just triggers my anxiety and Chronic Fatigue Syndrome again. I worry I'm getting into that downward spiral again when I've been so well recently. I just want to get on that up escalator again.

I visited Sam today and took him out for lunch.

Jane had rung the hospital yesterday and today and ...

(I was just writing this post and was called through to have dinner when Jane got a phone call from close family about major issues. She coped with it so well. She offered such good, calm advice which may help save someone's marriage. How she can manage this as well as everything else that is going on is just amazing.

I'm stunned.)

... Jane had rung the hospital yesterday and today and

- I'm sorry. I can't finish this post now. I was going to write about my time with Sam today.

I'll try again tomorrow.

I've been getting increasingly angry about the CPA meeting.

Why wasn't I involved in the first part of the meeting?

Why was I kept waiting?

Why couldn't I hear what other professionals had to say?

Why wasn't I able to contribute to their discussions?

Why was I only brought in for a discrete interlude and then asked to leave again?

Why wasn't I there when decisions were being made?

Why aren't carers' views regarded as important enough to contribute to the decision making process??????????????

Sam's care co-ordinator is writing to the consultant psychiatrist to express his own concerns about this. I had intended to write myself but I think I'll leave it to him. It's good that the issue is being raised by another professional rather than us being seen as being 'pushy' and 'awkward'.

He is also including in the letter the issues that Jane raised at the "managers' meeting". Jane was really effective and the managers recognised the issues and took them up

- questioning the professionals ...

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

... sorry I got distracted writing this post and didn't finish it.

I'm sure what I was going to say next was pure gold - but sadly the thoughts have now gone.

At least this post is shorter as a result!

I've just remembered.

The post above must have been about the managers' meeting.

(I'm so sorry - I've started stacking up the posts and I've now got a delay of about a fortnight! Filling in th gaps then becomes impossible.)

The meeting went really well. Jane told it like it was and they listened. The managers took up some of the pointe Jane made - asking the consultant who was responsible for the factual errors in his report, asking if the reason Sam spent so much time in the smoking room was because he was bored, etc.

I think Jane was justifiably pleased.

It's the managers' hearing tomorrow.

In theory Sam could be released from his section. In that case he would have nowhere to live and could be back home with us tomorrow night.

In one way that would be great. Reunited again at home. It would be lovely.

For a few hours, maybe a few days.

Until things started to go wrong.

Even before that. I've found it hard listening to Sam on the phone. He's rung several times today. Understandably he's concerned as well and wanted phone numbers of friends as he clearly feels the need to talk to someone else about how he is at the moment. I'd had a difficult conversation with Jane about what she is going to say tomorrow and my own difficulties in even discusing these issues. Sam must have picked up on my mood and started to tell me on the phone how I needed to do serious Yoga stretching exercises.

Meanwhile Jane has been writing and practicing her diatribe agains the mental health services on me and Nell.

I'd found that hard and was in tears again. Sometimes it's just too much.

Just getting the reports from the tribunal secretary and discovering they were so inaccurate, that they dismissed contact with parents was so hurtful to Jane. She wants, with all her being, the best possible care for Sam and is determined to get it.

I hope they are ready for tomorrow!

A reader has introduced me to an organisation that I had not come across before.

It has the catchy title of:
The International Society for the Psychological Treatments of the Schizophrenias and Other Psychoses

Just trips off the tongue doesn't it?

You can find out more about them at their website.

I'll try to get round to adding it to the links on my sidebar.

However it looks really interesting and has a very good conference in Manchester, UK starting on Monday.

Jane is very keen to attend but it looks a bit too close now to organise which is a shame.

Thanks to Elinora for passing this on to me and good luck with your current hardships.

I'd been busy today with this, that and nothing.

The CPA meeting and other jobs I've had seem to have drained me.

This evening we were invited to a concert. It was quite late but I was keen to go - a friend of Jane's was taking us.

I felt really tired and could just have stayed at home. I knew though if I went I would perk up and that is what happened. However, Jane hasn't slept well for the last couple of nights and as it got later just fell asleep and couldn't cope. This was difficult as the friend was providing transport. I guessed she wanted to stay for the last set.

Jane just walked from the bar area where we were listening to a band, saying I'll wait for you outside.

We guessed it was time to go.

Jane's going to the managers' hearing regarding Sam's appeal.

We've just discovered that he also has a full appeal to the mental health tribunal the following week. We thought it was one or the other but he has appealed to both so it has to be repeated so suddenly.

Jane spoke on the phone to the secretary to the tribunal and has got her to fax through all the reports.

Of course they are all inaccurate and lacking in detail. These are bits of paper that staff have to write when they would be better working directly with their clients.

However - they should be accurate.

They should not be contradictory.

Jane is in antagonistic mode again.

She was upset by things in the reports.

For instance - one from a doctor included a treatment plan copied from an internet source that included the phrase "to re-establish contact with his social links, ie relatives and friends."

Anyone who knew Sam or us would have known that re-establishing links with family was not an issue.

Jane took this very personally. She has been putting together in her mind a talk (presentation, diatribe?) to try to put forward her view of what the hospital should be providing if Sam has to remain detained (which sadly we think is the case at the moment.)

She tried it out on Nell this morning and then me again afterwards. She knows she needs to be able to say it without getting emotional. If she gets angry or upset in the meting she knows that what she says will be dismissed.

Meanwhile I'm just feeling pressurised and drained by this obsession on Sam.

I need to escape again.

It was Sam's CPA meeting today at the hospital.

I drove over with Sam's care coordinator - a social worker from the Assertive Outreach team. It gave us chance to chat through a few things on the way.

We were a little late because of the traffic but were told by the nurse that they had just gone in. We went to the room but I was asked to stay outside with Sam while his care coordinator joined the meeting.

It was about fourty minutes before we were called. I know sometimes it is easier to have part of the discussion without Sam, especially if he is in a contrary mood. There might also be occasions where they wish to discuss family issues and can do so more freely if I was not present. However I felt angry to have been excluded from so much of the meeting. The longer I waited the angrier I got. I found I was not talking with Sam but just thinking about the meeting.

I tried to relax and put it from my mind, concentrating on Sam.

If I stayed angry I would not be able to say the things I wanted to and was in danger of becoming upset and probably ignored.

I can sometimes get upset in such meetings anyway. Jane wasn't able to go today and I had planned carefully with her the issues we wanted to raise. I had found myself getting tense and anxious in the few days before the meeting. I was worrying I would cope alright with it and hoping I could represent strongly enough all the aspects that Jane feels so strongly about. I know she would have been livid about being left outside again. Perhaps it was best that I was there instead!

Eventually someone came to collect me and Sam.

We entered the room and said "hello" and shook hands with the consultant. He asked if I would like everyone else to introduce themselves. I had already planned to ask for this to happen so was pleased it was offered.

As well as the consultant there was the pharmacist, a ward nurse - not Sam's named nurse or the ward manager, another doctor who we have not met before, someone from the Occupational Therapy department, the consultant's secretary (at least we might get minutes this time!) and a hospital social worker who had phoned us recently and seemed very nice.

I'm used to being in big meetings full of intimidating people but I can imagine many people having been made to wait for so long then being led into such a room finding it very, very hard and being unable to contribute effectively.

The main meeting had now clearly taken place and my and Sam's contributions were an addition. I guess decisions had already taken place. This kind of thing makes your contribution feel so devalued. It is almost as if they are listening to our points as a politeness - not as a real contribution to the decision making process.

Sam was asked about how he felt about how he was at the moment and about what help would be supportive. He was fairly non commital.

Then I got my turn. To be fair I was giveen - and made sure I took, the opporunity to make my points. I was pleased that I was ocasionally asked some questions that I found it less easy to answer. It seemed to show that the consultant was looking at a wider range of issues.

The consultant's view though was that Sam might becoming resistant to medical tratment - especially as he was not able to continue with the Clozaryl. That led to them having to devise alternative cocktails of drugs to try to mimic the same effect. I was less than happy with this - especially, as I knew, that he was even prepared to describe it as "hit and miss".

It's more like alchemy than medecine at this level.

He also raised the point that a cure for Sam might not be realistic.

Few professionals have been prepared to be so open - they like to maintain that optimistic front.

He did suggest that they might try Aripriprazole - Abilify - as this was a new medication that had some promising effects. We had suggested this a few weeks ago. He agreed that they would try this - but as part of a complicated combination that I remain unhappy about.

Sam had to be persuaded into this by me as his reaction to an enquiry about his views was that he wanted to be off medication - and anything else was irrelevant.

Sam and I were shown out.

Everyone else remained - to discuss "technical" issues about the medication. And I wonder what else.

I would have liked to hear what the occupational therapy depatment felt about Sam. I would have liked to hear what the ward staff's evaluation of Sam's condition was. I would have liked to have lisened to the doctor and pharmacist discussing the issues about the meication.

I might even have been able to contribute.

I'm not thick.

Another phone call from Sam.

He rang to say he was enlightened.

He was helping people through the power of his love.

Patients on the ward were better now than they had been when he arrived - because of the power of his love.

He felt the suffering of the people around him. He needed to feel their suffering, to suffer for them to ease their pain.

Staff on the ward didn't understand his enlightenment and he felt insulted.

He'd had an experience the other day that he was me. He was eating toast but he was eating Tony, a staff member, because he was the toast because everything was one.

At times he was joyfully happy, in bliss. But that didn't help other people and he had to come out of that to help other people and feel their suffering again.

He wanted to know if I believed that he was truly enlightened. I was non committal. I recognised though that these were real experiences that Sam was having.

He wanted me to phone a Buddhist monastery. He was now a Buddha. It was not like he was saying he was Jesus as there were lots of Buddhas. If only he could talk with another Buddha he was sure they would understand.

There is a CPA (care programme approach) meeting tomorrow. I wonder how much of this he has said to staff.

My brother and his wife are staying for a few days. It is a long time since they have seen Sam. We took them over for a visit.

We have managed to get some leave for Sam with us. Up to an hour in the grounds or local vicinity accompanied by family. However Sam seems less well already so we hope it will be okay.

On arrival Sam started being belligerent again with Jane. Jane made it clear that if he wasn't prepared to behave sensibly we would not take him out.

He was pleased to see his uncle and aunt but was very quiet.

We had lunch in a busy cafeteria in a shop across the road from the hospital. It must have been difficult for Sam amongst so many people. He coped with that fine until he suddenly said he was finding it difficult holding the mental energy of so many people in his head.

I accompanied him outside for a cigarette. He got cross wuth me as I stopped him lighting up inside the shop. I was trying to control him again. he just wanted to be on his own, free to make his own decisions. This quickly degenerated into an argument. W went back inside and he was calm again.

I was angry and upset. I was sad to see him like this when recently he had seemed to be making some progress on his new medication but now was aleady slipping back again. I snapped at Jane over something little.

Sam walked back to the car tall, towering over his petite aunt, with his arm around her shoulder in loving conversation. It was a delight to see.