You've probably been wondering why nothing has appeared on this site for so long. Well it's as simple as I'm never home long enough or at a reasonable time in the day to write anything! I'm sure there were some of you who couldn't quite believe that I spend so much time at Perrins - well I can assure you I DO! And that is not because the care isn't good, it's simply that the carers and other staff do not have time to pass the time of day with the residents, and Colin hates been alone! As he has no sight there is nothing to distract him from loneliness. We've tried the radio, music, CDs, etc but when alone he finds these irritating. And I think one of our regular friend visitors put a finger on the cause - Colin's brain needs to examine the environment constantly for danger, and it can't do this if a noise in the room is blocking out noises in the corridor, etc!
And now you're probably wondering how it is that I have the time to update this blog. Well a very kind friend has provided me with a Bluetooth keyboard to go with the tablet I just treated myself to! We have a small dedicated group of good friends - to whom I am very grateful and without whom I should not survive this long haul, I can tell you! And so here I am, sitting next to a snoring Colin, being able to tell you again what is happening!
So what is happening? Sleeping, hallucinating (though not the awful ones of months ago), confusion (because carers want to 'care' in the middle of a waking dream - and it doesn't make sense!), anxiety - there's a lot of this because of the lack of understanding of the environment and what has to happen, and the noises in the rest of the building from staff and other residents. And being alone fuels the anxiety. Thankfully eating and drinking are OK within the limits of the Speech and Language Therapist guidelines and me working with the catering manager to 'get it right'. And just when I think it's been a bad day, with reality out of the window, Colin manages a crossword in the early evening, getting answers to the clues faster than I can work them out!
It can be easy to put everything down to disease progresion, but we mustn't forget the awful side affects of the whole-brain radiotherapy that we knew would happen too!
And on a sad note, another resident had been here for a few months when he succumbed to his Glioma, he was only 55. His family abandoned all and kept him company through all that time - I met them quite often in the kitchen and they almost became family to me as they knew what I was/am going through. I have the Worcestershire Wildlife Trust calendar in my kitchen, and this months' photograph is very poignant, as the photographer was a colleague (although a while back), a fellow choral singer and sadly succumbed to a similar disease to that which is afflicting Colin. What is going on?