Kathleen Mary Kelly died aged 90 on Christmas Day 2012. Even now, typing those words brings a lump to my throat and triggers a myriad of memories and emotions.
My mum had lived with dementia for a decade and for the last two years of her life she couldn’t speak or move, or eat unaided. She lay in her Surrey nursing home bed in the south-east of England, being fed pureed food by carers; in the weeks after she died this was how I remembered her.
As the years passed, more recollections of the “real mum” I’d known for over 40 years began to return. Since her death I’ve published many blogs and articles about her, and about the feared, perplexing, complex condition she developed, in the hope that they might help others going through the tough times my family and I experienced.
Each time I write about mum, she comes back to me. I feel her beside me as I tap at my keyboard; I smell the scent of her forever baby-soft skin, hear the sound of her voice, see the warmth in her eyes (which are my eyes too) and the sun on her glorious auburn hair. I conjure her up. With each carefully chosen image and phrase, I commemorate her.
The last time I saw mum alive was the day before she died. I received a call to say I should come, that she was very weak, not taking liquids and could soon slip away. I almost didn’t go. It was Christmas Eve, I was busy, the journey would be a nightmare and, over the years, there had been so many false alarms. Then I remembered that the Service of Nine Lessons and Carols from King’s College Cambridge would soon be on the radio. It was one of mum’s favourite things; if I hurried, we could listen together. I dumped the Waitrose shop and set off down the A3.
When I arrived mum was curled in bed, barely conscious, hardly alive. I breathed deep and waited. And as the chorister’s sweet solo voice sang the first notes of Once in Royal David’s City, mum opened her eyes. That was all. She didn’t speak, or look at me. She simply stared at the white painted ceiling. But it was enough. Somewhere deep inside her, something had stirred. The music had moved her. It was an incredibly powerful moment. (I now know that familiar music is one of the most powerful emotional triggers for people with dementia, see my Daily Telegraph article).
In the final hours of Christmas Day I headed back to the nursing home. As I hurried along mum’s corridor an unfamiliar carer stepped out and gently placed her hand on my arm: “She’s gone”. Two words that knocked the stuffing out of me even though I’d been expecting the news (at times even wanting it) for so very long. When I took mum’s still-warm body in my arms it was feather-light, a mere bundle of bones. Yet in those few freighted moments of love and grief, she was, in many ways, more my mum than she had been in years.
Kathleen Kelly (always known as Kay) was half-Irish. A miner’s daughter from Derbyshire, she was strong-willed and big-hearted. Though largely uneducated having left school at 14, she was very determined and ambitious for her family. She possessed a penchant for the colour green, flower arranging and wearing men’s watches and, until her dementia took hold, a well-honed gift of the blarney.
She could also be forthright – and sometimes difficult. When I divorced my first husband (amicably, after five years) she refused to accept it and seemed more concerned that I’d given up a comfortable lifestyle than about my happiness. I couldn’t understand it. We’d been so close. Besides, mum – a former union shop steward – had always vaunted her liberal credentials. Where were they now? And where was her mother’s unconditional love? It caused a rift between us and for two years we barely spoke.
It was only as her dementia advanced, stripping her of her inhibitions, loosening her tongue, that I began to understand who she really was. Before it robbed her of speech, her dementia revealed – in odd flashes of lucidity – secrets of her past that none of us (not even dad) had ever known.
It transpired that mum had been in service to the Duke of Newcastle-under Lyne at Clumber House in Nottinghamshire. My flame-haired, fiercely proud mother who wasn’t afraid to give anyone the sharp edge of her Irish tongue had scrubbed floors at the “big house”, Downton Abbey style. It was an extraordinary discovery, and it explained her reaction to my divorce. To someone with mum’s precarious roots, my decision to walk away from security and wealth was madness that had to be stopped at all costs.
When I think of my late mother I really do re-member her: I piece all the different bits of her together in my mind. I curate them. I form them into stories to raise awareness, and increase understanding, of dementia. I re-collect them and hug them to me, inordinately proud of the woman I now know she was.
In so doing, I am creating a vast, evolving version of mum’s Life Story Book, something which I now know (though sadly I didn’t when mum was alive) is a hugely helpful process for both those with dementia and their loved ones. It lies at the heart of all the best dementia care, ensuring that individuals, and the rich tapestries of their past, are seen before the condition they happen to have. As someone I know put it so well, “I have dementia, it doesn’t have me”.
It is far too late for my mum to benefit from life story work, or any of the countless enterprises, therapies and schemes that help those with dementia and their families. But writing about these things – and in so doing, improving other people’s awareness and knowledge of the cruel condition that took mum from me years before she died – is my heartfelt tribute to her.
This piece first appeared in 2017 as part of Hull University’s Remember Me project exploring the changing face of memorialisation.