Friday, 3 June 2016

Dementia : My Experience

Dementia. Nearly a million people in the UK have it, yet it's so widely misunderstood by sufferers and medical professionals alike and often incorrectly accepted as just a natural part of ageing. This week is dementia awareness week in association with Dementia Scotland and I wanted to share my experience with it.

Ada Muriel Davis passed away in 2012. 18th of March 2012. I was 21. I remember it clearly. It was a Sunday. My mum came into my room to waken me for work. She told me before I'd even gotten out of bed. Her tone was sad but unsurprised, and as though she knew I wouldn't be surprised either. I wasn't. I was due to start work at 10am and this was about 8am. I didn't cry. You might judge me for saying this but I wasn't even particularly sad. Not straight away anyway. We knew it was near and as hard as it was, we'd prepared ourselves.

My gran lives 200 miles away and had all my life. We saw her every Christmas and periodically for long weekends through the year. I have fond childhood memories of the long car journeys and of playing in the fields near her home with my sister. In every memory of visiting her, the sun is shining. My gran was much like my dad, loving and caring but not affectionate. Never felt the need to show off about it. My other gran lives nearby and because of this, we've always been much closer.

It was about ten years before my gran passed away that she began to show signs of forgetfulness. As a family, we can now laugh about some of the funny things she'd say. One that we always talk about is when she was visiting and my mum was unpacking shopping from the supermarket. She had a multipack of crisps and asked my gran if she wanted one, who which my gran asked how you know which flavour they are. She hadn't realise that it's a big bag made up of smaller bags of crisps rather than just one giant bag of crisps with assorted flavours all mixed in together. This antidotes still make us laugh til this day. 

As time progressed, these slips of the mind became more frequent and harder to laugh off. My dad, her son, began travelling down more often. Despite not being particularly affectionate, he was fiercely protective of his mum. He could see things getting worse. She started to struggle on her own so far away from any family but was adamant that she didn't want to move back up to Scotland. Despite the tremendous efforts of her beloved life long neighbour Dorothy, my dad liked to make sure for himself. It was initially small things, forgetting to open a piece of junk mail, still having last week's crossword to finish off, not putting a bookmark in and losing her page. But it quickly progressed to much bigger things. Long out of date food, meals that should be frozen stored in cupboards and bed sheets and towels unchanged for weeks. He found a cupboard full of delivered but unopened medication that she hadn't been taking for months. More than an entire plastic bags worth. After a few attempted to explain these mistakes to her, my dad realised she didn't see anything wrong with how she was living. She was as independent in her 90's as she'd been at any other point in her life. 

A few days after my dad drove the 400 mile round trip to drop her back home after Christmas, she took a bad fall. She fell getting into bed and only after banging on the wall did her neighbours know something wasn't right and went to check on her. She spend from then until she passed in hospital. Every Friday night for three months, my dad drove down alone. Visited her in hospital. Stayed over in her house by himself. Visited her again on the Saturday. Stayed over in her house by himself again. Visited her on the Sunday and drove home again on the Sunday night, just in time for the 40 hour working week ahead. He only missed two weekends, one was my 21st birthday and the other was the weekend of the day she died. When my mum woken me and told me, my dad was already packing up the car. 

She was always a proud woman. She was well spoken, firmly opinionated and took pride in her appearance, dripping in gold and jewels and sporting a blue floral walking stick. In many ways, dementia is almost a kind disease, or kind to the sufferer at least. My gran didn't realise she was anything other than independent, able and healthy and although hard for my family and in particular, my dad, she passed away as proud as she lived. It's seeing someone you loves mind deteriorate, their control of their life slip away and their independence slowly dwindle and feeling powerless to help or stop it that's so heartbreaking and utterly frustrating.

Dementia Scotland, amongst others wonderful charities, are fighting to raise awareness of dementia and fund research into potential cures or treatments. It's an truly awful disease that will affect 1 in 4 of us. I take great comforting in the knowledge that my gran didn't see herself in the way we tried to hard to prevent but the day we can make this fate less and less likely for more and more people, I'll be a very happy lady.


  1. Dementia is so awful. My nan, who practically raised me, had a bad fall at Christmas and ever since then has been becoming more confused, upset and aggressive. There are glimmers of the person she used to be but she is so upset by remembering what she said or did when she was aggressive and confused, that she just cries at the sheer frustration of it all. It's heartbreaking to watch. I just keep thinking that my little girl will never know the wonderful woman she once was. I don't think she fully understands that I'm pregnant. Thank you for sharing your experience Sophie. I had no idea it was even dementia awareness week.

    Roxie | The Beautiful Bluebird

  2. This was a great read. Terribly sad of course but great to hear someone with a similar situation. My Grandma is currently a sufferer and as we live a bit away I haven't seen her since she was taken into the home. We never saw each other regularly and as she doesn't know who her husband and children are, she wont know me and I'd rather stay away than upset her. My Dad travels down regularly though to see her. She thinks that he is her Dad :/
    I'm so sorry for your loss and thank you for sharing.

    Danielle xo

  3. This was a very personal experience and I'm glad you decided to share it with the world. I agree that this is so unknown and has many misconceptions. My great-great aunt suffers and it brings me pain to visit, honestly.

    S .x