Last week or two has been a definite improvement on previous few months. Sons chest infection seems to have cleared, and even better, we've had his sister visiting for a week or so over Easter.
We still have problems with his breathing etc. - they're a bit different now we're getting into the hay fever season - but he's not continuously in distress. One we hadn't seen before looked suspiciously like a 'panic attack' - hyperventilating and very high pulse rate. We used all the treatments for asthma, including oxygen, panadol etc., even 'paper bagged' him briefly but what seemed to work was slowly talking him down. Difficult to pin down though - it could have been the treatments kicking in. Not being able to tell you what's going on is a real problem and educated guesswork is all you've got to go on.
He's had his 3 monthly botox to ease his hand and wrist contractions - really works. His nails used to cut into his palms and cleaning them properly was all but impossible. These days they're much more relaxed and we can get rid of the 'cheesy' smell. (This is what comfort and dignity is really about.)
Meanwhile in the background, the cuts rumble on. Three meeting last week and not looking forward to the upcoming one with the PCT over reviewing his care package. We're going to have to take on responsibility for employing nurses etc. for part of his care as no one else will under the new CQC registrations - getting that funded while stopping them reducing his care package should be 'interesting'.
In the end, however well meaning the care provider, it comes down to relatives and carers to fight his corner. I really worry for the ones who don't have family or aren't articulate and stroppy enough to make providers/funders do what's needed. I know some of them. We do what we can to help but we simply don't have the energy to fight everyone's battles. I think he'll be all right if he outlives us - his sister can be just as determined as we are, but I don't want him taking over her life as well. They both have a right to an independent life.
So, maybe this time of panic over his health is easing and it's back to the war of attrition. It's not a war we look like winning - not being forced back too far is as good as the vision gets just now.