I'm making this post because I think David would want me to be as honest about what's happening as he has in the past in order to inform and possibly help others.
David is deteriorating. He’s not eating anything except ice cream and he’s not drinking as much. I was wrong before – he hadn’t been catheterised. He’d had a small plastic covering placed over his penis, connected to a tube and bag to collect urine. Less invasive than catheterisation but they can only keep it on for 24 hours before it starts to affect the skin, causing the skin to breakdown and slough off. Not good. So that’s been removed and urine is either collected in the usual bottle, if they are there in time, or the sheets gets wet and have to be changed, although not so much now as he’s not taking so many fluids. The (very pragmatic) nurse told me that in her opinion, although catheterisation carries the risk of urinary infection, at times like this (what she meant was when someone doesn’t have much time left) she felt it would be preferable in order to avoid the disturbance (to the patient not the staff) caused by the sheet changing.
He’s also been taken off the humidified oxygen and put on the normal supply. They did this because the hospice cannot provide a humidified supply and they wanted to see if he could cope without it. He can, so there’s still hope that he could be moved to the hospice if a bed becomes available. The same nurse admitted that they did not have the staff on the ward to provide the level of care (turning him regularly etc) that would be ideal and that he would be better looked after in the hospice. So we can only hope.
I feel helpless – I try to be there at lunch time so that I can help him eat, but he doesn’t want anything except the ice cream and gets distressed if pushed to eat or drink more. He’s sleeping a lot and is a bit confused when he wakes but has moments when things are clearer.
Having said all that, I believe he is being kept generally pain free. They seem most attentive in this area, always checking that he is comfortable.