19th January 2011

Hiya,
no easy way to say any of this. We've had a really rough time
with Steven over the last few days. To cut a long story short, Steven
has been extremely violent all weekend, day and night. He's had no
sleep, which means, neither have we, and the lack of sleep makes him
worse. Paul and I both had successive nights of fighting Steven and
getting help from the nurses and night doctors. Steven has done very
little in the way of "conversation", and we've been unable to block
his tracheotomy for any great length if time. It culminated Tuesday
lunchtime, when he tried to rip out his tracheotomy, and if it wasn't
for Paul's fast reactions, he would have succeeded. Paul couldn't
remove Steven's fingers, and had to emergency call the nurses, and it
took 4 of them to just hold him down. Steven was finally restarined
with straps and body belt, but he continued to fight. At this point he
indicated to Paul that he wanted to "write" sometning. Using the
alphabet he spelt "finish me". We were obviously called to the
hospital, but nothing any of us could say or do anything. He was
eventually given morphine and sleeping injections, these on top of all
his other medicines. He fought the medicine, until he finally
succumbed, after being fed by 2 nurses, giving Paul a richly deserved
break. Paul stayed the night, and Steven had a good drug induced
sleep. However this morning I relieved Paul early. I went to Steven
for my usual hug, after which he indicated he wanted to "write"
something. Using the alphabet he spelt "let me die". I asked him if he
meant what he wrote, and he put up his thumb meaning yes. Needless to
say that upset me and Paul intensely. He has remained calm, and he's
gone to physio'. The doctors are aware of what's going on. We are
constantly being told to be strong, be patient, and all this is
normal. Well we don't feel strong, we're not that patient, and it
certainly isn't normal to us. Steven, and for that matter, us, have
had no constant proper sleep now for 25 days, and we're beginning to
feel depressed. We can't imagine what Steven is going through, we just
want him better. Steven is the only patient here who is aware of
what's happening to him, and is therefore constantly upset and
agitated. I'm not saying Steven is a special case (although he is to
us), but all the other patients seem to be permanently calm. Steven is
the only one awake at night. We are the only ones wandering the
corridors at night asking for help from the nurses. Steven is the only
one leaving physio' in an agitated state.
Hope for better news soon.
love
Terry