This is how the story ends…

It has been almost three months since my mum passed away. Since then, I’ve written about the eulogy I delivered at her funeral, and how I felt when the furniture was cleared from her flat. I’ve also written about the grief cycle I’ve experienced over the past four years.

In other words, I’ve spent a lot of time thinking about death and dying.

A friend of mine, who also lost her mother in the recent past, has been reading my blogs, and asked if I had read a book called Being Mortal: Medicine and What Matters in the End, by American surgeon Dr Atul Gawande.

The answer was no, and I still haven’t read the book, but I have read many quotes from it, and wanted to reflect on some of them here.

“Endings matter,” he writes, “not just for the person [who is dying] but, perhaps even more, for the ones left behind.”

That makes perfect sense. It was important for me to be able to tell the story that my mum had as good an ending as you could hope for, as a 93-year-old who, as her death certificate stated, died due to the frailty of old age (with no mention of her dementia, which was undiagnosed but clearly present).

Part of the story I tell myself about her death is that she chose to depart on her wedding anniversary, so that she could be reunited with my dad, who passed away 20 years ago. It helps me to cling to the narrative that she ended her story on her own terms.

What haunts me is the thought that her death might have been hastened by the fact that her beloved children and grandchild had not been able to sit with her and hold her for several months.

Covid (and dementia) prevented her from playing what Dr Gawande calls “the dying role” – to share memories, pass on wisdom and keepsakes, and ensure that those left behind are OK.

Along with much of her memory, she had already lost her independence and autonomy. It makes me sad to think she was no longer the author of her own story. We, her loved ones, must now take custody of that story, and keep it alive.

Show me the way to go home…

Before she moved in her care home, Mum would often ask us when we were taking her home. We would tell her that she was at home (in Amersham), but in her mind home would always be Swansea.

As Dr Gawande writes: “Our most cruel failure in how we treat the sick and the aged is the failure to recognise that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life.”

At this late stage in Mum’s life, the story she told herself, the one that sustained meaning for her, was that she would ultimately be returning to her birthplace. Sadly, that never happened – but in her mind, she kept that hope alive, to remain the author of her story.

According to Dr Gawande: “The betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures.”

Yes, and torture for loved ones as well, having to observe this cruel betrayal.

But there is a happier ending to this story. As she was losing her memory, Mum became adept at living in the moment. She was acutely observant and would notice people, behaviours, animals, trees, you name it – that I would not. She actively demonstrated what Eckhart Tolle describes as the Power of Now. It was a great lesson for me.

So thank you, Mum, and thank you Dr Gawande. While I’m still grieving and contemplating my own mortality, I fully intend to read Being Mortal. But one thing I am sure of is this: what matters at the end – all that matters – is love.