I used to be afraid of so much before my dementia diagnosis. Animals of all kinds, for example – the pure sight of them made the hairs on the back of my neck stand to attention, and my heart pound. My daughter has a cat, Billy, that she used to have to put outside if I visited; and I’d cross the road, full of fear, if I saw a dog on the pavement, even if it was with its owner and on a lead. But then dementia came along.
Dementia and cancer have long been the two most feared conditions – and for the over-65s, dementia is the most feared. I was 58 when I was diagnosed with young-onset dementia, just four years younger than Fiona Phillips, who has revealed she has the condition at the age of 62.
I hadn’t even reached the dizzy heights of retirement age; I was living with the most feared condition and, yes, I thought it was the end, because no clinician told me any different. But then I met other people living with dementia – and suddenly I saw in them that there was still a life to be lived. Phillips herself has talked about still meeting up with friends for coffee or going out for dinner.
My dementia diagnosis taught me the importance of time: how was I to know how many lucid days I had before dementia took hold? So I began to appreciate the present moment. When working, I was as guilty as anyone of wishing for the weekend, wishing for the next holiday, wishing for tomorrow. Now I realise the irrelevance of all that. After all, the only real certainty any of us have in this life is the very moment we’re living in now.
No one knows what the next moment will bring. I call these small yet powerful realisations “gifts from dementia. “Gifts” because I know perfectly well that dementia would hate to think that it was giving us anything nice. This gift, the appreciation of time, took away fear of the future. I’ve no control over the future, so why dwell on it? But in giving me the simple pleasure of appreciating the moment, it also took away my fear of everything else.
Animals: those terrible beasts that might bite or scratch or bark viciously at me. Those were my thoughts before dementia. Yet I was sitting in my daughter’s loft one day, looking out over the orchard, when Billy the cat sat down beside me. Without even thinking, I ran my fingers through his soft, thick coat and felt and heard his satisfied purr. Having always avoided me in the past, he sensed I was no longer afraid, and jumped up on my lap. But instead of screaming, as I might have done before, I was silent. I still remember that moment, when my fear of animals evaporated. We’ve since been joined by Merlin the dog, who offers me his unconditional love. Animals themselves live in the moment – and what a lot we mere humans could learn from them.
Now I embrace all that I’m supposed to fear. Even my girls have had to learn how to let go of their fear of what will happen to me as a result of simply living as I wish to: alone, with dementia. Fear is a great hindrance to living. No longer am I caught up with thoughts of avoidance in life. Instead I relish every second of every day.
Sometimes I take this to extremes. I would never have taken a leap of faith out of an aeroplane before dementia; my head would have been too full of what-ifs. Now, each year I do something wacky to raise money. I started on the ground, walking on hot coals, but then took to the air for a skydive, a paraglide and even a wing walk – strapped to the top of a plane and flying at 110mph. All I could do was smile. This year is my final wacky challenge for charity. The Cheesegrater is one of the tallest buildings in London – and I’m going to abseil down it. Yes, me, living with dementia. Why? Because I can – and because it’s there to be done.
As for dying, well, that fear left me at diagnosis. After all, dying will release me from the ravages of dementia. What’s to fear?
Wendy Mitchell was an NHS non-clinical team leader before being diagnosed with young-onset dementia at the age of 58. She is the author of One Last Thing: How to Live with the End in Mind (Bloomsbury)
