Monday, February 23, 2009

Sam has had some leave for the first time in months. Don't get too excited. It was just to walk from the hospital ward to the main hospital block for some tests - twice!

But it is a start. I am sure he would have done this anyway - but he has been allocated leave in the hospital grounds with two staff now. I know some of the staff have been pressing for this. They know that waiting for Sam to improve first may bever happen. That they have to do something to help Sam improve.

Sunday, February 22, 2009

We don't often get a phone call from a psychiatrist. We hardly ever have had one from Sam's consultant psychiatrist. Only two occasions sit clearly in my memory.

The first was over four years ago. Sam had been prescribed Clozaril. A side effect is that it can have a serious effect on the heart. The phone call was to say that Sam's pulse had started to race - and he had also had an amber warning from a blood test. He had been taken to see a consultant cardiologist who had insisted that the Clozaril was discontinued immediately.

The most recent phone call was last week. We know that there have been discussions and plans to reintroduce Sam to Clozaril but with appropriate safeguards. It is only recently that there was an article in our local newspaper describing the death of a patient through taking this medication. The consultant phoned to say that Sam would be starting to take Clozaril again and to describe in detail the safeguards.

We can't pretend to be happy - but at least there is an openness and I trust this consultant to try it out more than any of Sam's recent consultants.

Wednesday, February 11, 2009

Jane ended up ringing in the evening to see what had happened about Sam's leave.

He hadn't got it. I was worried how he would react if he didn't. He had been setting his hopes on it so highly.

It seemd that he had been fine - until later in the evening. he'd borrowed the ward CD player - it seems he has sashed the one I took in for him. A Nurse requested it back so Sam threw a kick at him.

But what made me really angry was that Jane also asked about any changs to medication. They plan to put him back on to Clozaryl on Monday. He was supposed to be seeing a cadiologist first. That may have happened - but given our concern about the matter wouldn't it have been kind to have let us know what was going on. There was a CPA meeting three weeks ago and this was not discussed then. What is the point of CPA meetings if everythng else is decided elsewhere?

However nice they may all be ... in the end we are still never involved indecision making and still not even informed of the decisions. On a medical ward at least one would be kept informed.

Tuesday, February 10, 2009

When Jane last visited Sam the nurse said that a few of the nurses felt that Sam was ready for some leave. They could see how it would help him - that he needed to be outside.

Sam phoned the day before the ward round. His nurse had been talking to him. Leave was possible. It was being discussed. They were trying to encourage him.

Sam phoned us and phoned us. He was so eager to get leave. We were advising him to stay calm and show them how well he was and to do the charm offensive ... he seemed well enough to do it. He rang me in the morning again - even asking if I would go in for the meeting.

I couldn't - but told Sam what we had already said to staff about his leave.

Then I waited all afternoon, hoping Sam had been successful.

Sunday, February 08, 2009

Although my physical resources have been strained and I need to be careful - I do feel I am making a little progress. Though a fall on the ice this morning didn't help much as I walked back from buying the Sunday paper and a few groceries.

I'd seen Sam yesterday and Jane visited today. He was quite good with me yesterday - but probably because he had received additional medication after kicking out at a nurse. Sam told me he'd been trying to kick away the medication as he didn't want it.

He knows that it is not just his illness that makes it hard for him to think and concentrate - it is also the medication as he demonstrated today with Jane as he desperately tried to write something but couldn't find the concentration he needed.

Saturday, February 07, 2009

I've not felt like this for over a year - or even two.

I thought I'd learned to cope. That I could manage with the limits of my energy. That the huge attacks of fatigue were now held at bay.

So it has come as a shock. I wasn't expecting it. I thought it had gone. I dared to believe I was becoming well.

However, I couldn't get out of bed earlier this week. Yes - I know - you all feel like that on a Monday morning. But I tried and took a few steps and had to return. A little later ... again.

I know. It is more likely depression than a "serious" physical ailment. So it isn't "important", is it? Not life threatening. Just get over it. Get a grip. Get out of that bed.

Otherwise how can I continue to help Tom?

Friday, February 06, 2009

Just so tired recently.

Just so very, very tired ...

Thursday, February 05, 2009

At our last family meeting Sam took a piece of paper and wrote two words under the heading "People". They were "Instructors" and "Beneficiaries. He talked about it in one setting and then described it in a hospital setting as "those who sat in the office" and "patients".

He described articulately how he had to be mad to fit in with the other "beneficiaries" and how he was treated with disdain by the "instructors". He talked of how he was angry with the staff for treating him in such a way and why he gave them a hard time for it. It was his way of trying to redress the power imbalance.

This of course was in between his brief mentions or auras, his ability to control what was on television and to read people's minds. The contrast with his other rational discussion was striking. But more striking was his depression at lack of power and his frustration at that having been locked up for so very long.

Wednesday, February 04, 2009

We had a big party at the weekend with family and friends to celebrate Jane's birthday. It went really well. So many people were able to come. It was very special.

Nell had come up for the weekend to help and was a star. But I'd got quite stressed out with the planning for it. Even small things can shake me at the moment.

But we did it - or Nell did! It was a success and Jane enjoyed it.

The next day we went for a short walk with some relatives who had come some distance for the party the day before, then lunch - then popping to visit Sam before Nell had to get the train back home.

I found it hard getting up but kept going until we got back home while Nell was packing. I collapsed on the sofa.

I felt guilty for being so grateful when Jane suggested that I stayed there while she and Nell visited Sam without me. She could see I was exhausted.

So I went to bed.

Tuesday, February 03, 2009

Sam rang at seven o'clock in the morning. But it was good. It was Jane's birthday. He wanted to wish her a happy birthday. He wanted to talk to me as well. He wanted me to buy her some flowers ... from his money!

Then he phoned his granny and grandad. He'd drawn some pictures for his mum. He wanted them to come round and collect the and frame them as birthday presents. He knew I couldn't as we were going out into the countryside for the day with a pub lunch planned.

Then he phoned again in the evening - again in a positive frame of mind.

It made Jane's birthday. It really did.

Monday, February 02, 2009

Sam rang.

"What's the date?"

I told him.

"Oh, so it's mum's birthday tomorrow."

I find it difficult to remember my mum's birthday and what date it is from day to day. So it was special that he had remembered.

This page is powered by Blogger. Isn't yours?