Approximately ten years since my mum was provisionally diagnosed with Alzheimer’s she is receiving palliative care and we are awaiting her final breaths. She is hooked up to a morphine pump; she cannot eat, she is too out of it to drink. Nothing goes in apart from oxygen and the slow release of opiates creeping through her withering veins, nothing comes out apart from carbon dioxide and whatever the intangible element is that counts for our essence. If Erikson had listed a ninth stage of psychosocial development, this would be it. Life v’s Death. Hinterland v’s Actuality. She is Schrodinger’s person. She is, and yet she isn’t.
For the past week assorted members of the family have popped in to say their goodbyes. The last rights have been administered (Father Joe came to the care home on Saturday before heading to the Celtic match, the fact Celtic Park is in close proximity to the care home was an added bonus). My aunty Sally was shocked to discover priests are not in uniform (her words) at all times. I wonder if she thinks priests have cassock pyjamas?
The opportunity for my family to come see mum has served the dual purpose of allowing us to make contact with each other again and enjoy being in each other’s company, which is a very good thing. For this is an opportunity that can be good for a family. I have witnessed it before, I have been part of it before. Reconnecting, burying the hatchet, feeling a part of something bigger than our self is real, tangible. I tasted it today literally when my aunty Vina brought me a flask of her homemade lentil soup. Eating it I was transported back in time to Saturday nights after the football and new year’s days from the 80’s when I was too young to appreciate just how wondrous ham hock and well-seasoned veg boiled together in a pot by a skilled crafts woman can be; lightning in a soup pot, some of the best parts of my child hood floating in a plastic spoon. In the meantime, almost breathing hideously in the corner, the undead awaits her final destination and I begin to think maybe there is a god, maybe I have been wrong all these years, and maybe this is the time to repent and start praying for the delivery of her soul.
I stopped really believing my mum was my mum around 6 months ago if I am being honest, but I still see a part of her trapped on this plain we share, and it is this part I wish could now go. And she is going, slowly, at 0.91 millilitres per hour the morphine helps slide her into obscurity. I check she is still almost breathing for the nth time, I watch as her bones slowly rise, I listen as the rattle sounds her intention to hang on for at least one more breath, and I feel relief and anguish rolled into one. Everyone says stuff all the time, nobody says anything really crucial or fundamental, and yet somehow these stupid inconsequential conversations amongst family members who live separate lives seems vital and I feel the affirmation with every syllable of awkward gibberish we share.
All this does in the end is highlight the otherness and unreality of the person formally known as mum.
People are saying things like, ‘she will fight to the last’ or ‘she was always stubborn’ or ‘she is hanging on to see Frances’ (my sister who is flying/driving this way and will arrive tomorrow afternoon). But just as I still don’t really believe in god, then I don’t see agency or drive in my mum’s ‘decision’ to still be alive. I see bio-mechanics and entropy. She isn’t dead yet because her body is still functioning. The lack of water has not yet terminally impacted on her life providing systems, you cannot fight science, certainly you can’t if there is no consciousness and no will. She will die when there is a chronic inability to continue to function.
And so we wait. The care home at night is a strange place, quiet with intermittent outbursts, shuffles, queries (patient sticks her head in the door and asks, ‘is this Glasgow?’) and statements (‘you’re not Boab ya bastard!’). The staff are lovely, understanding, patient and seem to genuinely care. My family: cousins, aunties, uncles, wife, sisters, friends, have all been amazing, my boss and workmates and have been incredibly understanding, there is nothing more to be done, except wait for Schrodinger’s mum to give a definite answer to the question. There is a cruelty in this, a prolonged agony, a strangled, torturous process. Watching mum’s face contorted into a silent, wheezing grimace offers no solace. Helping her to move on as there is no coming back from the end would be a mercy, but we don’t do that do we? We have decided that this slow, sustained, relentless crawl to finality is the humane way to end this type of scenario. This doesn’t work for me, and my mum would hate this, she said it numerous times but you can’t go off and kill yourself when you have Alzheimer’s, that wouldn’t do would it, you may not be in your right mind when you make the decision to end it!
We can’t just push through a dose of morphine that would give the peace and dignity mum would/did crave. No, instead we provide peace and dignity through starvation and dehydration. That’s humane. It shows who we are as people. It shows we care about all life. It’s what god would have wanted/does demand.
I have no problem with the fact the end of life care my mum is receiving is the best she can have, and it’s what is available for everyone in her situation. I think this type of end of life care should always be available for anyone who desires this for either their life, or that of their loved ones. I think my mum should also have had the choice of ending her life the way she wanted it to end. Faster, with less wheezing and less grimacing.
I hope it ends soon.