Bless you all - thank you so much for all the lovely hugs xxxxx
Spamar, really hope your poor shoulder is better today xxx
I've tried to pop on a couple of times to update you all, but it's been a bit manic. Monday, I started early and got a load of admin for work done, then spent the rest of the day playing 'phone tag' with the manager at the HB (who wants 'more evidence') and the local councillor who holds the portfolio for health and social welfare for this area.
The manager phoned me back finally around 1.45. Found her very patronising and overbearing, not interested in listening to anything, just repeating over and over and 'there isn't enough evidence', without explaining why everything that had been given wasn't enough. She said she had given the home a week to 'come up with more'. It was like talking to a brick wall, a complete waste of time.
The councillor phoned me back early evening. She was totally appalled, very sympathetic, but wasn't sure what she could do, believe it or not! She described the HB as a 'law unto themselves', a 'nightmare' and 'impossible to deal with'. She has had many run in's with them, by the sound of it, but they seem not to be answerable to her - or anyone else for that matter. She said she would get back to me, by Thursday. I am still waiting.
Tuesday I had to go to South Wales for 2 days of meetings, mandatory, no way could I get out of it. I left at 5a.m Tuesday Moring, got back 9.25pm Wednesday night
Meanwhile, the new consultant had made herself 'available' for an emergency meeting with us on Wednesday morning, a fact that was only communicated to OH Tuesday night, and with him working and me in Swansea on Wednesday, neither of us could attend, which was infuriating and frustrating. Even if I could have somehow missed the second day of meetings with work, the journey takes around 5 hours, so there was no way I could have got back in time. That meeting is now scheduled for 27th June - the consultant being on holiday till then.
Yesterday morning, I contacted by email, the Welsh Minister for Health and Social Welfare, Vaughan Gething. I explained the situation, heavy emphasis on how often Mil had been let down by the local Health Board and was deliberately graphic about the potential outcomes if CHC continue to avoid providing her with the support that Mil needs. There is no other way for me to communicate with him on matters like this, as I am not in his constituency. I got a bog standard automatic response saying that his office would aim to reply within 17 days.
So - currently we have Mils social worker (another new one, never met her, but told she is good and is very supportive of CHC being awarded), the nursing staff, managers and care staff at the CH, the consultant and us, back by supporting evidence from a CHC assessor, fighting on Mils behalf against a manager from the Health Board, who is able to completely ignore us all if she wishes and basically do what she likes. There seems to be no avenue to 'go above' her head, no matter how urgent the situation is considered to be, no matter what the potential risks to Mil or other residents (never mind staff!) if it isn't dealt with swiftly. If she says 'No', the only option is appeal, and that can take weeks, with this manager seemingly able to throw whatever obsticles she likes in our path. The CH are completing reports on every single thing Mil does, which is adding massively to their work load, but they are committed and determined - bless 'em, every damn member of staff there is aware and furious on Mil's behalf. Every spasm, every repositioning to stop her falling off the chair, every fall, every indication of agitation, every single indication of or actual act of agression, every time she struggles with a mouthful of food or drink, every behaviour - no matter how small - is being documented in minute detail.
I went to see Mil after emailing Gething yesterday morning. This is odd to describe, but although she sems physically 'better' in terms of her breathing and her responsiveness, there is still a noticable difference in her, a decline that is hard to put into words. Her speech is just that bit worse and she seems more - well, I don't know if manic is the right word really, but in seconds she goes from laughing and giving you hugs to a sudden spasm, or to tears and repeating 'Mum, mum, mum'; or to suddenly shouting, or turning to the person next to her and grabbing them quite viciously, or suddenly trying to slide or throw herself off her seat, and it seems intentional. The staff think she is hallucinating a lot, turning her head or pointing to 'someone or something', talking unintelligibly as if responding to something said, even nodding her head in agreement. I saw that myself yesterday - Its so strange. The nurse told me that earlier in the morning, after it had taken 3 staff to assist her to walk to a chair, she had then got up and moved quickly enough to get through the lounge door as a cleaner was coming through, and had headed off down the corridor, banging on doors, screaming and fighting against staff who tried to get her back into the lounge. Shortly after that, the nurse watched in amazement (she said) as Mil slid to the edge of her seat, very carefully kneeling on first one leg, then the other, then carefully stretched herself out on the floor - and began rolling around. She has now done that several times, and its another massive risk as some staff have seem her appearing to roll towards residents who are walking round, as if to deliberately 'get under their feet'. I had to grin when the nurse described it as 'so bizarre' - took the words out of our mouths.
The nurse also told me that a lot of Mils medications have now been removed. She has the pain patch and sleeping meds still, and the quetiapine is being reduced. Her GP, despite there being no evidence of infection apparent from blood and urine tests, has now insited on a 'last blast of antibiotics', just in case there is something underlying, but after that - no more anti-biotics. So far, there isn't much change either in terms of her health getting worse or her behaviour improving. The general consensus of the nursing staff is that Mil is physically failing and deteriorating, and that we are still talking at the very most, weeks.
So - that's where we are up to. I don't quite know what to do next, to be honest. Until this meeting, we are in yet another sort of limbo. I am totally worn out and obviously we all feel really stressed, and even hopeless at times. The whole system feels geared against her, and its horrible.
Sending love and very grateful thanks to you all xxxxxxx