Saturday, 22 September 2007

You are the everything

Tricky day. Long sleep the previous night counter-balanced by short sleep the following night. Add tired father and not a good combination.

The boy was awake for 4 hours in the night but asleep when I took over. Woke up within half an hour. Meant I had couple of hours without help. This is very hard now. Delayed taking him downstairs for a while. Relieved to see new carer. We did painting for a while until he looked tired and flushed. Hard to know if he needed extra morphine as it is so hard to tell if he is aggitated ie in pain. His face is impassive, capable of little nods for yes or shakes for no. And his right arm can still move but the signs are very unclear. Makes working out what he wants a frustrating lottery. Decided not to give morphine as his flush came and went.

Was relieved when the wife got up and a friend arrived to share the load. I was positively homicidal with hurt and tiredness. Then auntie m arrived with new boyfriend. What an introduction for him. The boy did cooking but looked increasingly tired and distracted, so I took him to bed. He complained feebly and soon fell asleep. Let him have an hour and a half until auntie arrived with pandas. Something nice for him to wake up to. They did painting while I had a break. After she left we did more cooking until bed time.

I had thought he had been pretty stable over the last few days. But the nurse who saw him only three days ago was shocked and upset at his decline in that time. Just goes to show how difficult change is to see when you are with him all the time.

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