At the time of writing, 20,319 people have died in hospitals in the UK of coronavirus. If you include all those who have died in care homes and in the community, the total number is estimated to be over 45,000. No one knows exactly how many more will die.
At 3:15 this morning, just over an hour ago, my Dad died in Gloucester hospital and was added to this growing and harrowing statistic.
The magnitude of the coronavirus is hard to fathom. There are close to 3 million confirmed cases globally with a death toll close to 200,000. Cases have been confirmed in over 190 countries around the world. It has, rightly, dominated headlines and headspace for months now.
It is in this context that the magnitude of my Dad’s life now sits. While my family and I come to terms with this personal loss, I worry about his life being lost in this context. As the virus and its deadly impacts rage on, I see how people focus on this and might, unwittingly, reduce all that he was and is, to the statistical part he played since his covid diagnosis just over a week ago.
I think my initial reaction, as I fail to get back to sleep lying here listening to the unfathomably loud birdsong outside, is that it is this that bothers me most. I have long since been at peace with the idea of my Dad dying – I am not at peace with his life being reduced to a statistic that reflects nothing more than part of this last awful week and the part he played in this wider tragedy.
But strangely today I think I see things differently to yesterday – almost like in death there has been a strange form of liberation. Dad is no longer the stroke patient, the care home resident with worsening vascular dementia or even the latest vulnerable man to be diagnosed with coronavirus. He is no longer any of those things – at least not primarily. Instead, he is now the plethora of memories floating in the minds of eyes of the countless people and lives he touched.
For me, he remains the Dad that showed his love through actions. He enabled me to believe that I could do anything. He drove me both literally and metaphorically to take every opportunity that arose. So much of where I am today is because I started life stood on the shoulders of a giant of a man. A giant with a heart bursting with love who held so little of the vocabulary needed to express it. In my mind’s eye now there are not the words he spoke to me, but the image of the man who stood on the side of my metaphorical football pitch cheering me on every step of the way.
But this is just me. Elsewhere, as the news of my Dad’s death spreads, there will be people reflecting. Sat now watching the sun rise I like to think that as the toast pops in kitchens all over the country there will be people thinking of the man who started his own business and employed dozens of people. As kettles boil there will be thoughts of the man who volunteered to rebuild steam railways. As people head out to walk their dogs there will be anecdotes of the Scot who would always toast the haggis. As people walk out of the door there will be thoughts of him, my Dad, holding the church door open welcoming everyone in… Thinking now, if there is one act of kindness that best acts as a metaphor for my Dad it is perhaps holding the door open for others.
And then there is the family of mine, of his, who are all mourning him in their own ways. But who I hope are thinking of their Dad, Uncle, Brother who has played such a role in their lives over the last 80 years.
And that’s the other thing – 80 years is a really long time. And so much has happened in his life. It cheers me now as the colours take hold on the trees outside and the shades of the night-time grey slip away to think of the multitude of ways he has touched countless lives over the years and how they live on. The love he has left behind stands as a testimony to him, to the lives he touched. All that he was, and all that he is, is still in the hearts and minds of all those who knew him. He lives on through a thousand anecdotes, memories and personalities he has shaped with his love and kind actions. He lives on through his children and his grandchildren but also through every person who takes joy in riding the steam railway he helped restore.
For me, there is so much beauty in that.
The scale of deaths we are seeing from coronavirus are a tragedy. But I think this tragedy only ever makes sense if you understand it to be the sum of its part. When we talk of over 45,000 deaths in the UK, the magnitude of this can only resonate if you break it down to the individuals we have lost and the impact their lives have had on family, friends and the communities we all live in.
The zest for life my Dad held lives on through all of us that remember him for the man he was over those 80 years. No amount of his own death or others will ever, or can ever, diminish that.
This morning the sun is up and so am I. And this morning I’m going to put twice as much butter and marmalade on my toast as normal and smile the way Dad did each morning he did this. Because you know what, there is a lot to be said for the simple pleasures in life – my Dad taught me that.
Reflections on my Mum’s advanced dementia
“Death is coming for us all…the day we will have to face the crossing will come sooner than we think. I hope my day is many many years away, but… I don’t want to make the greatest leap in life in a vague dream. I want to have the chance to look it in the eye, to say: ‘You have had me in your sights all your life, but it’s on my terms that I come.’” Hendri Coetzee – Living the Best Day Ever
Sitting across from each other on slightly uncomfortable wooden chairs in the care home I watch my Mum interact with one of the staff. The young girl lays her hand on my mum’s shoulder, raises the volume of her voice slightly and asks if “everything was alright dear” and if my Mum would “like any help?”.
My mum looks up at her and smiles with wide unfocused eyes. The staff member smiles back, hovers awkwardly for a moment trying to decipherer what this blank stare means before finally she walks over to another resident. As she makes her way over to a lady sat hunched in the corner I look back at my Mum and catch just the faintest flicker of a death stare from behind her eyes. It was an unmistakable reflection of something deep within her that these days only occasionally surfaces. Today this was a split second of a “fuck off am I your dear”.
Of course, I could have imagined it, I could have simply wanted to see a bit of her old self and so read too much into a distant stare. But, in that moment I think I saw my Mum: proud, wanting to help others – not wanting to waste people’s time in being helped, and ultimately using anger as a shield to hide away from all the insecurities and uncertainties of her life.
She focuses her eyes back on me, a second of surprise or alarm gives way to a meandering anecdote about the walk she believes she had taken that morning over Dartmoor. I ask if she saw any deer and she responds that she had, but only in the distance. This follows a second of silence and a drop in her eyebrows before she asks if I was OK to count? I promise her that I was more than happy to count to which she scoffs and says she doubts it. I once again miss the nuance of her reality.
Asking questions of dementia patients often only increases distress and confusion and so I try to steer the conversation back onto safe territory and say it was a beautiful crisp winters day outside. Her eyes look at me. One, two, three. Seconds pass with no response. I try a new path. I tell her that I recently spoke with her nephew, my cousin, and that he is happy and doing well. One, two, three. Eyes wide. No response. I try three of four times more and get little in response.
I decide not to push conversation. I sit with her in the weak winter sun surrounded by the stuffy air of the car home. Silence.
In the silence my mind jumps to memories at random. I think back to my mum cutting all the fire wood for the house by hand insisting that she was perfectly happy with her bow saw and no, she didn’t want me to come around with a chainsaw. I think back to her carrying heavy trestle tables out of the local scout hut as all the other mums stood and watched. I think about her slapping down any idea or suggestion that she might in anyway need any help.
With these thoughts in mind I smile at her thinking that I might get going soon. She doesn’t smile back. The staff member approaches and puts her hand on Mum’s shoulder and, just before Mum smiles up at her, she gives her a split second of that recognisable death state. The staff member either doesn’t notice or chooses not to.
The thing I feel saddest about when I leave is that Mum has so little capacity, so little control. Despite both the care home and my family doing all they can, we are no longer able to play by her rules and there is nothing we, or she, can do about it. She is left to be looked after by others. She is clearly being looked after well but they also clearly miss the very essence of her. I don’t think I am sad that she will pass away in the coming, weeks, months, or possibly years. I am just sad that it must be like this, not on her terms.
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Tagged as Advance dementia, Care home, death, Dementia, dying, Hendri Coetzee, Living the best day ever, Living with