18th August: Happy Birthday to David and Francesca

Two visits to Simon and quite an eventful day. First up, a long conversation about something "missing". I spent fifteen minutes responding to Simon about what could be missing, a computer part, some clothing, money, glasses, toothbrush etc. I should have paid closer attention to his opening statement which was "there were three of them and now one of them is lost, it will never come back". Eventually I worked it out. Simon had three therapy appointments today, the first one had been missed because the phsyio was attending a meeting. He was complaining about this. It may take a long time to work out what Simon is saying, but he has certainly said it, not just in the way that you expect to hear it.
Then a situation rapidly developed in the public lounge room where Simon takes his lunch. His consultant decided this was an appropriate place to meet with Simon and conduct intimate conversations with him and me. I don't think so. This person also seemed adamant that Simon was unable to make decisions for himself despite a doctor at the previous hospital declaring him competent some weeks ago. My friends, you might have been proud of me, I put on my Union hat and defended Simon for all that I was worth. During this time, her entourage of students disappeared from view but could be heard sniggering nearby. Other patients and their visitors stopped in their tracks. At which point Simon said "What's wrong Marian?", I told him that his doctor was being uncooperative about the matter of his power of attourney. Simon faced the doctor and said "I agree that she [pointing at me] should be able to do everything, anything for me".
This doctor then walked away and said she would need to consult others at the previous hospital, she would not back down. I told her that if she could not communicate with Simon it was her fault and not his. Ten minutes later I got a message that she had accepted that Simon is competent, and could sign the power of attourney. This doctor is of Asian origin and is incultured into the 'save face' way of doing things. Now, I very well understand that cultural issues impact on the way that we work and relate to others. However, I do not accept that a person's need to save face should override their patient's best interests, particularly when Simon's dignity is so openly compromised. I am open to a debate on that question. As you can tell, I am enraged against those who cannot be bothered to spend the time to understand Simon.

After all this grief and aggravation, Simon and I decided to go out for a walk with the wheelchair (basically a tour around a large, but quite pretty, level car park). I had told him about a bottle of beer that I had in the boot of my car and Simon was keen to get to this. Just over half-way on our journey Simon needed to pee, urgent. I was completely adrift, no place to go. So he gave a wonderful fountain display in the carpark which was deserted at the time but then suddenly filled with passing traffic and all female drivers! One women put her windscreen wipers on. We laughed so much that he had to go again. By the time this trip was over we had three puddles in the car park and a lot of explaining to do when we got back to the ward. However, Simon did get to have his bottle of beer in the car park. These are such simple pleasures that we have all taken for granted. Shirley and I are working on practical solutions to the problems - Shirley is sewing madly, and I am working on technical plastics. That should leave your minds boggling. Gerry is coming on Friday to fit ramps into the house so that we can bring Simon home for a few hours on Saturdays and Sundays.
Our darling twins, David and Francesca celebrate their birthday today. "Happy Birthday to You, Happy Birthday to You, You look like a Monkey and you live in a Zoo!" This is the first time I haven't managed to get presents out in the post. I will make it up to you kids, no worries. However, you might have to come to Oz to pick up your presents...... I feel a gap year coming on.

If anyone is involved with the arrangements for Richard Castle's funeral would you kindly add this tribute from us:

"We heard the sad news about our comrade Richard Castle, and our thoughts are with his family we are so sorry for your loss. In addition to the many academic contributions that he made, Richard was also a great trade union colleague (NATFHE). In my experience, he never needed the support of a trade union for himself, but he understood the need for solidarity and, that solidarity requires some of us to be rocks. Never to be uprooted from our principles. Richard was one of those people, supporting others, upholding their rights, defending, and attacking injustice. He would always be on the picket line, and people like that were rare and brave. Like many of us he believed that workers united will never be defeated. Rest in peace our dear comrade. Marian Whitaker and Simon Shurville x"