Deja vu

It feels slightly inappropriate to be writing about this in between photo's of tomatoes and Harry Potter trailers but that's the way my life is going at the moment and how my Mum is doing is long over due an update.
I haven't written about it for a while because for every step forward seems to have been followed by a step back and the doctors have had little concrete to say.
But yesterday there was, well I can't exactly call it a breakthrough because that implies something more positive than it is, but we did turned some sort of corner.
Since my last  post she has had a tracheotomy to make her more comfortable on the ventilator and reduce the risk of chest infections. She's also been transferred to the ICU at Peterborough district hospital, which is a grim horrid place after Addenbrookes.
She's has panic attacks and hyper ventilates and so is being sedated regularly but the nurses have got her out of bed and into a chair on occasions and she's eaten some ice cream and yoghurt. Which is definitely progress.
Easter got in the way of her seeing the consultant at Peterborough until yesterday and the best diagnosis they can give is that she has progressive supranuclear palsy (PSP):

PSP is a neurodegenerative disease involving the progressive death of nerve
cells in the brain stem and basal ganglia.

It has some similarities with Parkinson's Disease and Alzheimers but is rarer.
She's being transferred, hopefully next week, to Papworth Hospital near Huntingdon where they specialise in heart and lung conditions and therefore respiratory problems.
If the doctors at Papworth get her breathing for herself, at least during the day or stable on the ventilator she can go into a nursing home with a portable vent.
But it is a progressive illness so there is the risk that if she was off the vent she would stop breathing again at some point in the following weeks or months.
Having a permanant trachy puts her at risk of infection. And it is no life for her. She hates hopsitals and needles and the rest. It was always her biggest dread to end up like this, hooked up to machines.
And so I have had conversations with my sister about her quality of life and her death. A couple of years ago I wouldn't have ever conceived of talking about such things but having seen my Dad die of leukaemia, it all seems strangely familiar.
We've decided that her comfort is of primary importance and any treatment must respect that. We've also decided on DNR.
I can't say what I hope for.