And now the waiting begins part 2.

We are all still here. Not just in the metaphysical/philosophical sense but also in the practical, real-world application sense. Mum hasn’t eaten or drank water since Wednesday afternoon, 5 days ago. This highlights amongst other things that a lot we hold to be true is probably only partially true. I always believed that if a human being managed three days without drinking they would perish, clearly this is bollocks. What I have learned is that this may be true if the person in question is stranded in a desert, or stuck on an island open to the elements, but if the human in question is pretty much lying dormant not required to do anything other than keep breathing, it’s perfectly possible for that human to keep on breathing. Breathing doesn’t take much effort if you think about it. We do it all the time, even while unconscious. Humans have become excellent at breathing over the years since we first popped out of our mum’s bellies, growing from tiny need machines to walking and talking breathing maestros! World champion breather’s human beings, straight to the top of the class. Take fish for instance. Shit at breathing they are. Watch them out of water, gasping as if they have just completed an ultra-marathon across the Atacama Desert. Pathetic.

My oldest sister confirmed my worst fear about this on Saturday when she arrived and explained that mum wasn’t ready to go yet. Breathing too strong, heart-rate too steady, skin and pallor not yet deathly enough. Frances is a palliative care nurse you see, an expert in watching/helping people die. Apparently I need to keep my eye out for marbling around the feet and ankles. No signs of marbling yet, although this makes mums ankles sound like a corn fed heffer. I watched a guy on tv recently explaining how Brexit would be a good thing because corn-fed, hormone fuelled cattle from the USA would flood the British beef market with cheap, well marbled steaks. So, I should be watching for mum’s ankles to resemble a steak? I really wish I had asked Frances some follow up questions re the marbling. My other sister Charlie is as confused as I am, but we keep checking the ankles anyway.

The steady stream of family members, friends, acquaintances visiting, getting in touch, sending best wishes has been remarkable. I never realised I knew so many people. I knew my mum knew so many people. Everywhere we went she would always have to stop for a minute and have a quick chat with this person or that person. When I was a wee guy I dreaded these random moments. Some woman I had never met before would walk up to mum outside Presto’s or Dolcis and that would be us for what seemed like hours. Inevitably this would mean I wouldn’t get home in time to see Scooby Doo or He-Man and when I asked mum who it was she was just speaking to it always seemed to be someone related to my aunty Dolly, you know, Dolly. Lives in Royston. Friends/relation of Pat Toal as well. You know, Pat Toal! I seldom knew who she was talking about. I wouldn’t recognise my aunty Dolly if she walked in here right now and slapped me on the face, but I wish I knew her. I mean, who doesn’t want a fucking aunty Dolly!

I am having a rare moment at the care home where it’s just me and mum. My sisters will be back soon, my aunties will return in an hour or so, and I will leave for a bit. After spending so much of the past 10 years with just my mum, it’s an odd feeling to be sharing the end of her live with so many other people. It’s not a bad feeling though as I don’t have ownership on her death. Her passing will mean something to everyone who knew her, it will be the end of their individual relationships with her so it’s right that we all have our own endings; however, this doesn’t make it any less weird. It was just the two of us at her appointment when she got her initial diagnosis. It was just the two of us when she first made contact with Alzheimer’s Scotland. We attended her first dementia café together, we went to her checks at the memory clinic together, although my sisters both went to the odd appointment in the main it was me and mum. I looked after her at home until she couldn’t live at home any longer. I took her to hospital when she got too ill to live on her own. I escorted her to the care home when she moved in. Now things are happening all around me and I don’t really have any input at all. I am just waiting.

I decided yesterday that I have no strong compulsion to be with mum at her final moment. My sister would really like to be here at the moment mum passes, but I don’t value that moment any more or less than any other moment I spent with her so I am ok with not being there at the end. If I am, great, if not, it’s alright. Mum will definitely not be alone, there are loads of people around at all times so it will be fine. Yesterday I managed to go and rehearse with my band for a gig we have coming up at the end of September. After I finish writing this blog I am going to do some work. Later I will go to the gym. I will have dinner with my wife and come back down to spend some time with my mum and sisters. I may even go and get my dog at some point, I will need him at the end. His big daft face makes everything alright. I have awesome friends who have looked after him for me so I know he is having a grand time, it’s the cat I am worried about. She was in the cattery last week and seems to have had a personality transplant. Can cats have a personality?  Anyway, she seems to have missed us too much. She is so needy now she got into the bath with me this morning. It was nice enough, but she was quite wet and her claws are very sharp.

The puzzle of death or dying is the tension between being alive and being dead. It used to seem straightforward until I started thinking about how we use language to describe being alive or dead. Sometimes we describe being dead to the world, or saying someone is dead to me. The question remains, how do we describe life? My mum doesn’t fall into the category of being dead because nobody official has turned up and signed anything to say she is definitely dead, but what is her life? Her current state can be described as unconscious, therefor alive, so life could then be described as a biomechanical process which while active provides evidence of live systems. My question is, if someone cannot eat, cannot drink, cannot go to the toilet, cannot express themselves in any way, shows no signs of understanding the world around them, and has no method or ability to communicate, how can they be described as being alive? Surely it is only partly true? People in a coma are described as being in a coma. Mum is not in a coma. People with brain injuries and who require mechanical operations to allow functionality can be described as residing in a permanent vegetative state. That doesn’t fit mum. Whatever the essence of our life is, this is what mum is currently lacking, and describing something as being lacking in something else is very unsatisfactory.

I have concluded that what is required are some new categories. Being alive or dead are too definitive and lack nuance. I also think if there was another category to describe my mums current state of alive/deadness then maybe people might be less inclined to match the decisiveness of the life/death description with equally fundamental beliefs about how we treat people in this position. I know what my mum would say, ‘that’s not a life’ or ‘just throw me in a box and be done with it’. Of course, she didn’t like the idea of small animals nibbling her, and she hated the idea of being cremated in case she might wake up during the fire part of the ceremony. I believe the scene in Diamonds Are Forever when Sean Connery almost succumbs to fire death may have played some part in this. When I pointed out to mum that her dislike for both burial and cremation left us short of options (no burial at sea as mum can’t swim and doesn’t like fish), she seemed genuinely confused about her lack of alternatives. As things stand it looks like the crematorium has the edge, but we might have as much as 36 hours to come up with something more to her liking. I will keep an eye on her ankles for marbling in the meantime.

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