As some of you may know I’ve just had my first novel published; I’d like to thank everyone who has said kind words about it and generally supported me in all kinds of ways. Publicising Invisible Ink, writing and talking about it, I’ve come to it afresh and gathered one or two insights into dementia, the condition that plays such an important part in my life now – and has a small but vital thread in the plot of my book.
Invisible Ink tells the story of London lawyer Max Rivers whose seemingly successful life belies the crushing sense of guilt he feels over the disappearance of his younger brother Peter when the two of them were schoolboys.
To bring out Max’s jealousy of his little brother, I wrote about Max laying Peter a trail of clues, each one successively harder and riskier for his sibling to find. I then decided Max should write the clues in invisible ink, something I used to do as a child. It was only with hindsight that I realised that invisible ink made a great metaphor for Max’s past which, try as he might to make it disappear, he can never truly escape. I knew at once that I’d found the name for my novel.
Steeped as I now am, in writing about dementia and the importance of maintaining an individual’s identity, I realise that everyone’s life is, in a sense, written in invisible ink. We are all, like Max, shaped by our past; but only people who have known us for a long time know our history and fewer still knew us as children. Last year I met up with schoolfriends I’ve known for 46 years. It felt like coming home. We all said how comfortable we felt in each other’s company. We knew who we were – and who we had been.
Should any of us ever lose the power to communicate, our pasts would be hidden from all but those who knew us then. For people with dementia, who ultimately forsake all memory, the ink becomes invisible not only to others, but to themselves.
One of the saddest moments in my mum’s decade of dementia came when I visited her two weeks after she’d entered her nursing home and she told me she’d cried herself to sleep the night before because she couldn’t remember her life.
My mum’s words show why the best dementia care involves capturing someone’s history through Life Story Work, which is crucial for people who can no longer tell their own stories or voice their wishes to carers. The Life Story Network, an organisation based in Liverpool, promotes individualised care and two years ago I was lucky enough to talk to its Chair Jean Tottie and get to know her late dad, George, through the life story book she’d created for him.
This reminded me of my own dad who, during his final years, was confined to bed and fed through a tube in his stomach. Towards the end of his life, we had to change his long-term carers. It was only when we brought some old photos of him into his hospital room as he lay dying that dad’s new carers exclaimed in surprise at how slim he’d once been.
My dad had always been fit and strong. We cycled everywhere together when I was a child, he loved long walks and he chopped firewood well into his seventies. But his new carers didn’t know this because it was all lost in the mists of time, written in invisible ink.
Rarely has this discrepancy between how we look (and seem) now, and how we were then, been more vividly illustrated than in an award-winning photo series by commercial advertiser Tom Hussey called Reflections of the Past, in which elderly people are shown looking at mirrored reflections of their younger selves.
The portraits are breathtakingly powerful; each one an enticing glimpse into a stranger’s long and intriguing life – cleverly reminding all who look at them of the past that lies behind an older person’s face. Unseen. Unspoken. But very much there, in the laughter lines and crow’s feet, the mottled skin and cloudy eyes.
Just as the heat of an iron reveals hidden clues written in lemon juice in my novel Invisible Ink, so the warmth of a smile, the sound of a long-forgotten song, the cadences of well-loved poems, the sight of a painting, the touch of a hand on another’s arm, can spark a human connection, even in someone whose dementia is pretty advanced. I’ve seen it happen, either in the flesh at inspirational places such as Lambeth’s Healthy Living Club, or in videos such as this one here about John, an American Second World War veteran who served at Los Alamos. It is very moving to witness.
So, the lesson I’ve learnt from reappraising my novel is (somewhat ironically) the age-old truth that you can’t judge a book by its cover – you need to know what lies inside the outer shell. In that sense, an important trait of very good care is kindly curiosity – a desire to know who the other person is, what makes them tick. Never is this more true than when caring for someone with dementia who may, like my mum, have forgotten their own life. It’s then up to the carer to turn to the family to find out, from those who know, about a past that is written in invisible ink.