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'Seeing someone you love slip away to become a shell of the person they once were is devastating'

As a recent report revealed that Alzheimer’s now claims more lives than heart disease, Londonderry author Claire Allan writes about how she lost her beloved granny Anna Davidson earlier this year to dementia and how it has moved her family to raise money and awareness about the cruel disease.

Published 29/11/2016

Hard times: writer Claire Allan
Hard times: writer Claire Allan
Claire’s grandparents Anna and Ernest Davidson in their younger days
Claire Allan's granny Anna Davidson
Claire and Lisa with their granny on their confirmation day

I was dolled up to the nines. My hair was highlighted and straightened - my make-up perfect. I wore a beautiful green dress. As I glided down the staircase at the hotel where my sister's wedding reception was being held, I saw my much beloved granny standing with my father.

In the years since her husband, my grandfather, had died, we had become close. When I was at university I would bring her home a packet of fudge each weekend - which she always said she didn't need but would eat anyway.

When I married, she beamed at me as she sat proudly as I walked down the aisle. And when I was preparing to give birth to my first child she had pressed one of her prayer cards in my hand and told me: "Don't be making a show of yourself."

I admired her - and loved her. But on that day as I crossed the hall to say hello, her eyes glazed. She looked at me. I could see the confusion on her face. No doubt the new surroundings and the fuss of the day had unsettled her. But when she asked me: "Who are you?", my heart broke a little. It was the first time she didn't know who I was.

I tried to laugh it off. "Sure, you wouldn't know me with my face washed," I joked but this was part of the pain our family would have to endure as Alzheimer's took hold of my beloved granny and took her from us, piece by piece, memory by memory before her body had finally had enough.

Anna Davidson, nee Quigley, was 86 when she died, peacefully, on the eighth of January this year. We were robbed of 12 years in which we should have been able to know her more, love her more, talk to her more.

She left behind four children, 11 grandchildren and 10 great-grandchildren. She missed the birth of two more great-grandchildren by months. She was a matriarch of her family - and her role within our family was the role she loved more than anything. Her life was focused around her family - always.

At first, like in many cases of dementia, we wondered if granny was "just doting". She became forgetful, annoyed at herself for not remembering things she should have. As her symptoms progressed, her confusion set in, a diagnosis of Alzheimer's confirmed what we had feared.

And although the Alzheimer's Society were on hand to provide support and advice, the reality of seeing someone you love and admire slip away - to become a shell of the person they once were - was devastating.

We lost her bit by bit. Our names. Our relationship to her. Our shared memories. Our ability to have conversations with her. Our ability to have her put us in our place in her own inimitable style.

The different stages of the illness provided their own challenges. Personality changes and mood swings were hard to deal with. Watching granny genuinely terrified trying to figure out why the world didn't make sense any more was hard.

She regressed to a younger age - when she was a young mother herself. She would get upset - ask why we were keeping her children from her. Ask where her husband was. Wonder why we wouldn't allow her to go home to her mother's house. For us as grandchildren it was heart-breaking. Granny had been the matriarch of our family - the woman who would slip 10p in our hands for sweets on the way home. The keeper of the "biscuit press" - where all the fancy treats lived. She kept a beautiful garden and every summer we would love to pick bunches of flowers to bring home. She was a larger than life figure that typified what every granny should be.

But while our loss was hard, for granny's four children - it was worse again. It was cruel. I don't think there is a word strong enough to describe the impact this disease has on immediate family.

They rallied. They cared for her. My aunt Lorraine moved home from England and become her full-time carer - allowing granny to stay at home until her final breath - something she, as a homebird, would have loved.

We did what we could. We read up on dementia. We spoke to people. We tried to find out what to expect, but every experience of dementia is different.

We tried our best to get through. In the end we hoped our gentle squeezes and soft kisses were enough to convey the love of a lifetime.

It's hard to find a positive from Alzheimer's - as a family we have done what we can to raise awareness of the disease and to raise vital funds for the Alzheimer's Society.

My own attempt at raising awareness came in the form of my last novel, Still You, a story of a lady slipping into dementia but wanting the world to know she was so much more than her diagnosis. While it's not about granny, it was inspired by her and our experiences of the disease, too. I made a donation from my royalties from that book to the Alzheimer's Society.

In May of this year my elder sister, Lisa, walked the 500 miles of the Camino de Santiago to raise money for the Alzheimer's Society. She made the six week journey on her own - except for the last week when my father, Peter, joined her and they finished the walk together. To date she has raised up to £2,000.

Granny was with her every step of the way - she says, and it was the thought of raising money for the Alzheimer's Society that kept her walking through the blistered feet and the sun burn.

Members of our family walk the Alzheimer's Memory Walk every year - even my 12-year-old son Joseph insists on taking part in memory of his 'Granny Anna'. This year was tougher, emotionally, than before but we are all aware how underfunded dementia and Alzheimer's research is - and how the numbers of those being diagnosed is soaring - while the age at which people are being diagnosed is dropping.

I remember being told that people never really understand dementia until it arrives on their own doorstep - and perhaps that is true. But with an ageing population - we owe it to those we love, and to ourselves and future generations to do whatever we can to fight against this cruel disease."

  • Still You by Claire Allan is published by Poolbeg Press and is available in all good bookshops, £12.99

Leading cause of death in the UK

Alzheimer's disease and other types of dementia have replaced ischaemic heart disease as the leading cause of death in the UK for the first time.

Last year 11.6% of registered deaths were attributable to dementia, according to the Office of National Statistics.

The report said an ageing population, better diagnosis, and lifestyle and treatment advances with respect to older illnesses were among the factors that have pushed dementia to the top of the list.

The mortality rate for dementia, which was the second leading cause of death for the previous four years, has more than doubled since 2010, while that of ischaemic heart disease declined sharply over the same period.

Ischaemic heart diseases were responsible for 11.5% of deaths last year, although it was still the leading cause of death for men, accounting for 14.3% of male deaths. Dementia, the leading cause of death for women, was responsible for 15.2% of all female deaths, up from 13.4% in 2014.

The study also showed that, if all cancers are grouped together, it was the most common cause of death, accounting for 27.9% of all deaths last year.

A helping hand to those suffering

Things which can alleviate the symptoms of dementia:

  • listening to music can soothe, stimulate and bring to mind long-forgotten memories. Musical aptitude and appreciation are two of the last remaining abilities in dementia patients, making music an excellent form of communication
  • singing in particular can kickstart the grey matter as it seems to be able to reach parts of the damaged brain in ways other forms of communication cannot
  • a memory box can be a real talking point for those suffering from dementia; an old family photograph to a bottle of fragrance or book can be highly evocative
  • holding someone’s hand can be reassuring and bring great comfort as well as making eye contact and talking in a positive way

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