Ciara Kelly: 'I saw my mother slip away from me and there was nothing I could do about it'

The World Health Organisation has said that the number of people with dementia is set to triple over the coming decades and has listed a set of guidelines on how we can reduce our risk.

Regular exercise, not smoking, avoiding harmful use of alcohol, controlling our weight, eating a healthy diet, and maintaining healthy blood pressure, cholesterol and blood sugar levels are unsurprisingly what we need to do. Basically – optimise your health and risks of dementia (and other nasty diseases) will go down.

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I suppose the truth is that we’re living longer and as the risk of dementia is most closely linked to age, the numbers are set to rise. But no one will ever advise you to live a shorter life to avoid it.

It’s a subject close to my heart as my mum, who died in 2017, had dementia for the last years of her life. I had to come to terms with seeing her slip away from me and there was nothing I could do about it.

Having someone in your life with dementia is to see them slowly, slowly leave the room. They forget words, time, places and, most painfully, they eventually forget you. It’s no easy thing to see someone you love lose pieces of themselves. I think I coped largely by not thinking about it, just accepting that whatever bits we had left were what we would focus on.

It doesn’t only affect you in practical ways, your relationship changes. They are no longer the parent. They are more like the child. And you become their protector in a way you never thought would happen.

And it doesn’t only affect you. One of the most striking things was how I saw my children change towards their grandmother. They, too, became protective. They, too, understood that Julie wasn’t like other adults, that she was vulnerable. And they adjusted their behaviour towards her.

On many occasions, I heard my eldest son – at all of 14 – when my mum was panicking that she might fall as she walked along linked with him, saying in the calmest and most reassuring manner that belied his years, “I won’t let you fall” – and I would hear her settle.

One occasion still brings a lump to my throat. Both my teenagers and I were in a hospital waiting room with her waiting on a scan result. The strange setting threw her. The institutional feel made her anxious. And so she did what she did in those circumstances – she started to sing. Not some quiet humming to herself. She sang in full voice as a sort of comfort to herself.

The waiting room shuffled nervously, embarrassed at this old lady breaking with the social convention to sit quietly and avoid eye contact in such places.

My children saw this. They saw the awkward sideways glances, the half giggles at their granny’s behaviour. And how they responded was magnificent.

My son started to sing. Quietly at first. He didn’t really know the words to the mad old songs my mother sang. But they were fairly repetitive so he got them pretty quickly. His sister joined in too. And as they learned the lyrics, they sang loudly with their granny so she wouldn’t have to sing on her own.

People saw it. Realised that two teenage kids were trying to be supportive of this confused woman and – wonder of wonders – other people joined in too. In the end that whole waiting room sang with my mother. Half laughing but singing along in a kind and generous way with a lady too demented to know where she was. I sat there singing quietly as the tears poured down my face.

Dementia is a growing issue. In an unrelated meeting one evening with about 10 people all a similar age to me, it came up. Every single person in the group was affected in some way by a parent, a parent-in-law or someone in their life.

It is absolutely right we should try to stay healthy to insure against dementia, but the healthier we are, the longer we live. And the longer we live, the more likely we are in some ways to get it. I think what we really need in some ways is to normalise and accept dementia as a chapter many of us will go through. Like infancy.

Perhaps our dotage years will be different to our thrusting youth or mature middle years, but perhaps we need to accept each phase of life and see the good in it.

Perhaps until new treatments become available, we need to de-stigmatise what lies ahead for many of us and our families rather than just hope for the best on trying to avoid it.

You do lose a bit of the person who has dementia but you keep bits too. My mum kept her charisma and her feisty spirit right up until the end.

A nurse came in to that waiting room, eventually, because of all the noise we were making and told us all to keep quiet. My mother told her to go away.

After a clear moment of surprise on her part she did, and there was a small collective cheer. It was like mum had started a mini-rebellion. And if she had only known about it, she would have loved it.


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