Wednesday, April 29, 2009

Sam rang this lunchtime. He had seen the doctor yesterday and was meeting him again today. Sam had been talking to him about Kundalini. Please would I search for "kundalini", "schizophrenia" and "misdiagnosis" on the internet and print it out for him. Sam had done this with a nurse yesterday but the paperwork had "gone missing".

So I did this in time for a later meeting with Sam and his psychologist this afternoon. I arrived early and was chatting with Sam when a nurse came for him ... it was time for his medication.

"No - I'm not taking my medication."

I was surprised. I had no idea of this. I tried to reason with Sam. He said he hadn't taken it for three days, that he had been misdiagnosed - he had kundalini not schizophrenia - and that he had no intention of taking it.

Later when Sam's psychologist arrived he went to check with the ward staff. It seems that Sam did take his dose last night. This is important as he is on Clozaril. There are strict monitoring requirements with this medication and if he is off it for 48 hours then it will have to be reintroduced again from scratch. Also the rebound effects of coming off Clozaril suddenly are said to be severe.

We discussed this with Sam and also just the strategic approach of keeping in with the hospital staff so he could get out sooner. But he was not convinced. The arguments just seemed to wash all over him. He was articulate himself but did not seem in the mood to take on board any of our arguments.

But he may have forgotten all this by bed time and take his medication again then ... who knows?

But it does raise one of the points we made about it being a bad idea for him to be put on this medication ... that when he became well he would not want to take it!

Monday, April 27, 2009

I went to see the doctor today.

I had booked to see her nearly a fortnight ago - this was the first appointment available. She is part time and very popular as she listens well. You can get to see other doctors in the practice the same day. Also she knows about my illness and Sam.

Jane and I had seen her before Christmas about possible support - to prevent us having nervous breakdowns again rather than waiting until it happens. But of course there is nothing available. I knew this. We'd talked on the phone ... but she suggested I still went in to see her today.

I was disappointed. I didn't expect her to pull any special support out of a hat but ... well was surprised she understood less than I had imagined. I tried to explain that I wasn't suffering from stress but that something had made me ill so I could no longer cope with stress. I mentioned the time more than twenty years ago when I was sat in a room two doors away talking to a doctor who told me my wife as going to die when I had two young children and a stressful job. I went in to work every day then. Before I became ill I had a responsible job where I was given the stressful tasks because I was good at them and thrived on stress. I am not suffering from stress - I am ill - but it may be stress in the end that made me ill.

I had hoped she would understand .. but she was busy and knew there was nothing she could do for me ... so we moved on to the nuts and bolts where she might be able to help keep my creaking body going for a bit longer.

Sunday, April 26, 2009

When Sam phoned on Friday he seemed amazingly well. He was keen to tell us of having been out and gone to a meditation class followed by a recovery group. He had pleased himself with how he had been able to concentrate and take part. He often finds group situations difficult. He was clearly pleased with how it had gone and was eager to share it with us.

So we were looking forward to going out on a walk with him on Saturday.

We had to wait a while when we arrived until a nurse was available to go out with us. During that time Sam was friendly and seemed quite well - apart from some inappropriate grinning that implied here were other things going on in his mind.

The walk started fine but Sam soon became broody and slightly surly. Soon he was becoming antagonistic, saying he didn't want to be in hospital at all and venting his anger at being locked up. He got a light for a cigarette from the nurse then started chain smoking for the rest of the walk. I was worried that we would have trouble getting him back but eventually he was persuaded to return.

As we got closer to the hospital again Sam cheered a little and apologised to me. He explained that sometimes he just got upset. It is understandable. I'd be pretty fed up at having been locked up for so long.

I was exhausted on our return but probably more from the emotional energy than from the walking

Monday, April 20, 2009

We were able to go out for a short walk with Sam on Saturday. But this comprised of going for a walk to the shop a hundred yards down the hill to buy him a sandwich as he'd woken up late and missed his lunch. By the time he had eaten it sitting on a patch of grass near by and walked back up the hill he was exhausted and asked to go back inside. We went in and chatted for a while but he said he was tired and wanted to go back to bed. He also said he had a slight pain in his chest. We told the nurse of this and he asked for a doctor to check Sam. So it is good they are taking potential heart problems seriously.

Saturday, April 18, 2009

I woke up feeling dreadful. Well I often do in the mornings. But on this particular morning I didn't seem to be able to pull myself out of it. I remained tired and dizzy and aching. I found it difficult to think positively and was perhaps worried about the rest of the day though it wasn't in the forefront of my mind.

We had a meeting with Sam and his psychologist in the afternoon - part of a planned series. We were also going to take him for a walk beforehand - and meet with his named nurse afterwards to discuss his weight gain and diet.

I am finding myself feeling stressed more easily recently and perhaps each of these would be enough for me. Maybe the thought of all three had got on top of me. Though I feel very bad about this. I want to be there for Sam and feel guilty that I can't cope.

On the way in we bumped into a young man dressed smartly in a very snappy suit. It was Sam's psychiatrist. He recognised us and stopped for a few words - asking when he might phone us to discuss Sam's progress. We were in an "air lock" where it was not possible for doors at both ends to be opened at the same time. The nurse taking us in commented on how we were made to wait until the psychiatrist was let out at the other end even though we had been at our door waiting!

Sam was fine - but I was a bit disappointed given all we had heard of his improvements. Perhaps I was hoping for too much.

I got home tired but fairly positive and pleased I had managed the afternoon well. There was a message on the answerphone from my dad asking for more help in programming his new TV equipment. I had planned this as one of my alcohol-free days but on my return I poured us both a glass of wine!

Friday, April 17, 2009

We returned from a few days away over Easter. We were visiting Sam's sister Nell. It was great to meet up with her again and catch up.

When we got back Sam phoned. He was so very well. He talked of how he was getting better and coming out of a strange place he had been in. He said he was still having "special thoughts" but that he was in control of them now and recognised normality.

His grandparents had visited him over the weekend. At the end my dad was in tears. Sam said it was probably because he had seemed so well. We know that is the case. My dad lights a candle and prays for Sam every day.

Thursday, April 16, 2009

I woke up from a dream about Sam in the middle of the night recently.

I dreamed that they had decided he was well enough to move to another ward - but not to the "step-down" ward attached to where he is now. It was as if he was being pushed off to yet another hospital but nobody would explain what was going on or whether he would keep his psychiatrist or what the rationale was. We were being kept out of the loop again.

It was just a dream.

I hope.

Wednesday, April 15, 2009

I've not been feeling too well since before Christmas. My ME symptoms coming back and some of my anxiety and depression. I know I have been finding difficult situations harder to cope with.

I've also been finding it harder with Sam. I think I'm frightened of the responsibility of him getting better. I know that it is harder when he is well than when he is ill. It is when he is becoming independent that things can go badly wrong. Perhaps I am scared by the responsibility. I'm not sure if I am strong enough for another time round.

That's another reason I'm cross with myself for being unwell now - so I get more depressed and get into a downward spiral.

Though I am working hard at keeping positive and trying to do things. It is important to keep up with positive attitudes and feelings. I am trying hard.

Tuesday, April 14, 2009

Before Easter staff were saying how well Sam was - what an improvement he had made.

He was putting on weight and was sleeping most of the day but when he was awake they were very pleased with him.

He was more amenable and presented himself well ... but in conversation with us he was talking of God's voice inside his head telling him to do things. But he probably didn't want to talk of these things with staff.

We should be pleased he seems better but there is a nagging worry that they will change some of the surface issues leaving much of his psychosis untouched and declare him better. Then we feel as if we are harping about things and being over-critical.

Wednesday, April 08, 2009

Sam phoned last night after ten. He wanted us to order him a pizza. He'd no money left. We left him £20 on Saturday but that had gone. He was hungry. He needed something savoury. We hadn't left him enough money. He was angry.

He isn't eating meals on the ward because he is usually asleep. He isn't causing problems because he is sleepy and acquiescent. He is putting on a huge amount of weight but nobody notices or cares ... because they think he is getting so much better.

But nobody is listening to him - when he talks to us all the underlying symptoms are still there.

Monday, April 06, 2009

We have a close friend whose daughter is diagnosed with schizophrenia. (In fact we have a few similar friends now!)

This friend had not seen her daughter for eight years. The professionals would not pass on any news because of "confidentiality" as her daughter said she did not want to be in contact.

Just recently for complex reasons her daughter has had to come off her medication. Having done so she asked to see her parents. She said that all this time she believed that they were possessed by aliens and were not themselves so she would not meet them. That is despite the fact she was regarded by the professionals as being stable on medication.

It is only when she has come off her medication that she has recognised her delusions and wanted to see her parents again.

The most lucid that we have seen Sam in recent years was for a brief period when he was off his medication when we were in France before the rebound psychosis set in.

It is as if the medication actually causes many of the symptoms. A psychiatrist we once knew would never talk of this medication as "antipsychotics" as he knew they weren't but instead insisted on calling them "neuroleptics".

Sunday, April 05, 2009

I've been away for a week - some rest and recouperation!

But on my return there were good reports about Sam. They said how well he was. They seemed to be excited by it. So we were looking forward to seing him.

We thought the new medication must have been kicking in - well it was making him fat so perhaps it was also making him better.

Part of us was perhaps worried that they would see it as the magic cure ... after so many years! Whereas we are left with the long term view and have seen too many false dawns.

Do we then come over as too negative?

It was three o'clock. Sam, had just got up - we were left waiting while they gave him his meds ... I am sure that must have been outside the window they were prescribed for.

He was drinking some tea and a huge piece of chocolate cake. That will be good for his weight.

He looked even heavier than last time I had seen him just over a week before. This sudden and huge weight gain is not goo - but seems not to have been noted by staff.

Sam started fine but soon became truculent. We were all living in a war zone. That was reality. We were suffering from delusions if we denied it. Jane and I were mad ...

and so it went on.

As he became more angry we decided to leave.

We felt as if it was us that had sparked him becoming unwell ... but there were clearly underlying symptoms. However perhaps the staff having seen him more positive and behaving more sociably felt this was progress without having much idea of what the underlying thought processes are.

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