… well to be completely frank, we are probably well into our metaphorical 20 minutes drinking up time.
Keeping with my pub theme, the title of this post occurred the second I started using a ventilator 24 hours a day. Without such intervention, the pub would have been closed and sold to a developer to make way for another All Bar One months ago. The ventilator is allowing us to finish our drinks at a leisurely pace, but today has indicated to me just how close I am to kicking-out time.
As Louise told you in last night’s lyrical delight, yesterday was a bad day. Today has been considerably worse. Being able to consume a tin of tapioca and some egg custard yesterday seems today akin to my jumping out of my chair and doing laps of the garden. I have choked at the introduction of just about any liquid, let alone food. The thinner the liquid or the claggier the food, the more I choke on it.
My inability to swallow now seems to be permanent. This realisation came on a flood of tears, my own and those of my wife and brother. The combination of choking, being upset and writing the blog have left me exhausted to the point where I have not been able to get out of bed. Instead, I lay staring at my new artificial night sky and thinking about how close I am to reaching criteria set out in my Advanced Directive, and my final visit to the hospice.
Our incredibly helpful District Nurse, Liz, has come up with all manner of solutions. She has suggested that I have a syringe driver fitted in order to overcome the need for oral medication. She has also considered sub-cutanious fluids to prevent my dehydration. We also reviewed the possibility of going into the hospice for a while. It may interest you to know my thoughts on the above, as discussed this afternoon in the presence of Louise, Matthew and Liz; I was my usual bullheaded self, without interruption, at every potential solution-so first I apologise to all present, their efforts are hugely appreciated.
My view is that if I can no longer swallow any medication, nor can I consume any food or drink. At this junction, I have requested the provision of IV fluids to prevent dehydration. My Advanced Directive states, and this holds true today, that I will not accept any artificial forms of nourishment. The reason for this is that it is highly likely that my inability to swallow will be rapidly followed by an inability to form understandable words. It is my ability to fully participate, as far as my physical disability allows, that defines my quality of life. The inability to speak would drag that quality to a level which I could never tolerate. As soon as my speech becomes unintelligible, I will accept the offer of the hospice – this visit, unlike the first but similar to the last, will be for the purposes of switching off the ventilator as required by my Advanced Directive. In the meantime, swallow intact or not, until my speech leaves me I want nothing more than to be with my family and friends.
I have no idea how much time I have left, nor any idea of how many times Louise is going to have to act as typist. Until then, it is my intention to carry on doing what we do to the best of my ability.
I will try to upload footage of Oscar tomorrow, hopefully on the back of a day less bleak in it’s outlook.
All my love to every one of my family’s supporters, wherever you are.
Again, Neil's wit and determination veiled the struggle behind his words.
This was the beginning of three days that blended into one, my memory of which is patchy, leaving only moments of unwanted clarity and moments of questioning whether I could have made better decisions for him. – Louise (2013)