10th January 2011

Steven was fighting all day Saturday, right through to Sunday
evening. He never slept at all Saturday night. He was continually
fighting, trying to get out of bed, arms and legs flailing, and head
squashed into the cushions surrounding the bed. He ripped out his
catheter 3 times, ripped off his nappy, pulled at his tracheotomy. I
had to call the nurses 3 times for help, he was uncontrollable. He has
extra pills and injections to make him sleep, no effect. The doctor
was called, and fortunately he saw him in this state, but couldn't
give any more medication, so I just had to put up with it, but I'm not
trained or prepared for this sort of thing. This continued throughout
the next day, except for a quiet period in the wheelchair and when
Veronica was here. But he started again, and even pushed Veronica
away, not a big problem because he does that with us, but was probably
upsetting for Veronica. He continued fighting into the afternoon and
evening, when again I spoke to the nurses and threatened to leave him
for them to care for him. They gave the usual platitudes thinking I
was exaggerating, until he pulled out his catheter in front of them,
and tugged at his throat. So we had to restrain him with his arm
brace, don't like doing it but he's going to seriously injure himself
if allowed to carry on like this. I upset the nurses with a language
problem, because I said they only see him for 10 minutes, I have him
in this state for 10hours, so they said they have lots of patients. Of
course they have, I know that, and that they have a lot of work to do,
I was trying to say I have to handle him for 10hours on my own. Steven
has today been answering in Spanish to my questions posed in
English!!! I feel though that he's got worse since the revelation that
he's having a dream of a car crash. He's asked for "my room", "water",
"go to the road", and "I want to go to the toilet". He said he had no
pain to me, nurse, and doctor, and then 5 minutes later complained of
pain in his right hip. Today no pain. Is it his mind playing tricks,
don't know. Is he in a coma, don't know. He doesn't react to any pain
such as injections. He stares straight through you. He's pulling
wildly at sheets, and pillows. He won't "say" what's going on. We are
totally confused, frustrated, and knackered (Nuria, that's slang for
very tired!!)
Rant over, a bad day, sorry.

Steven went to sleep at 9.30pm, remained so all night except
for a couple of times when I could tell he wanted turning over to
another side. So he slept without any extra medication.

best regards
Terry