Why I Document My Dad’s Journey Through Dementia On Social Media

I was about 14 when my dad Ray was diagnosed with early-onset Alzheimer’s. He was only 52.

I couldn’t really get my head around what was to come at the time.

He was told in the prime of his life, with a mind that still worked almost perfectly, that slowly he was going to lose all his memories, all his abilities and all his sense.

He was a very hard-working professional as a manager of a medical sales team, loving husband, and the most amazing dad to me and my sisters. He was simply adored by everyone who knew him for his friendly, easy-going personality.

Over the past seven years, we have watched my dad lose so many abilities – from driving, to being able to keep up with a normal conversation, to recalling the names of the people closest to him. Having seen his grandparents go through it, he knew exactly what was going to happen to him.

I will never comprehend how brave he is, for always staying so positive – I know this is for us.

On January 6 2015 I started endalzheimers_ray an Instagram account dedicated to my dad’s life with Alzheimer’s. I wanted to share his life with the world and show what an inspiration he is and how he lives with such a devastating disease.

Dad can’t make memories like you and me, so I make them for him with the posts I share on Instagram. I wanted to capture the happy moments to show that, although dementia changes the way he does things, it doesn’t prevent him from doing them completely at this stage. He is still the person we have always loved, he is still my dad.

The posts also give me a chance to tackle the stigma around Alzheimer’s disease and dementia in general – the scary reality is that my Dad is not an elderly grandfather – in fact, he is still a son.

Alzheimer’s isn’t just something that affects older people and therefore isn’t an inevitable part of ageing. It’s caused by diseases that can be beaten through research.

That’s why I am so passionate about the difference research can make and why I fundraise for Alzheimer’s Research UK.

For now, Dad’s personality shines through despite his Alzheimer’s and this is what you can see on Instagram and what people respond to. He now has more than 1,150 followers who all love seeing the updates including how Alzheimer’s has muddled his perception of reality and TV.
He’s so polite to everyone on TV, as he always has been in reality.

He wouldn’t sit on the sofa when watching the Pride of Britain awards, out of respect. He gets changed into his shirt and tie when the Queen is on TV “in case she sees me”, and has to take a shower before X Factor (because he’s the presenter). He thanks every weatherman and woman (who all have an eye for him) and every member of The Chase panel as they introduce themselves.

Mum tries to keep him going day to day, by giving him tasks like hanging the washing out, doing the dusting and putting his medication into his weekly pill box.

Often things end up upside down, or take 20 times as long, but it’s so important to make Dad feel like he has accomplished something every day.

We are so lucky that he is still, for the most part, the happy and loving person he always has been, but unfortunately his temperament is changing, with a bit less patience, and a bit more frustration – sadly this will only get worse.

Why dementia research is so important to you and why we should continue striving for an effective treatment and ultimately a cure.

Seeing someone you love go through dementia is years of slow and continuous grief. You see that person gradually losing their independence, abilities, and all the treasured memories of their life.

We have to find a cure so that we don’t have to live in fear that one day we might forget who our father is, who our husband is, our who our child is. There will not be an end to the heartbreak of dementia without that progress.

The work of Alzheimer’s Research UK is so important and key to life-changing treatments that can save these precious and positive memories and stop the inevitable downward spiral that dementia brings.

Follow Ray’s journey on Instagram

To share your personal experience of dementia with Alzheimer’s Research UK or Mariel email http://rachel.allen@alzheimersresearchuk.org

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