The last few months have been surreal to say the least and as a result I haven't been able to write as much as I'd have liked. Although I'd love to prioritise writing (outside of work) sometimes that just ain't possible. 'Life' does that thing where it gets in the way. Life being a marathon...
Oh yes. A week from today I’ll be running the Virgin London Marathon 2018 for the remarkable Alzheimer’s Society. It’s probable that many of you know why this charity means the world to my family and myself, but for those who don’t I thought it would be as good a time as any to let you into our world a little and potentially shine some light on an otherwise very dark illness. So, settle in for a not-so-fashion-based post!
Alzheimer’s & Dementia: The nature of the disease
As far as diseases go Alzheimer’s is a pretty complex one. No one-size-fits-all and that can make life with Alzheimer’s or Dementia seemingly impossible; no-one can wholly relate to your unique experience of the disease. The first time I truly ‘understood’ Alzheimer’s was when I trained to be a Dementia Friend through work. The representative running the training session used the bookshelf analogy:
The bookshelf analogy is by no means gospel, but it does provide at least a fundamental understanding of what Dementia does to the brain.
So when my family became shrouded by the disease I guess I vaguely knew what was coming. I’m running the marathon for my beautiful grandparents in aid of Alzheimer’s Society so I want to share my family’s experience of the disease.
A first-hand view of Alzheimer’s and Dementia
When I was 5 my father lost his Mum to Alzheimer’s. It tore our family to pieces, but little did we know that 15 years down the line the destructive disease would rear its ugly head again.
Our Grandad, Barry, had a stroke a fair few years ago now and was never able to fully recover. Instead Barry developed Dementia leaving Jackie, his wife, to become his sole carer.
After years of admirably, tirelessly and lovingly looking after Barry we noticed that Jackie had started to develop signs that seemed all too familiar, signs we could recognise through our experiences with Barry. Jackie was diagnosed with Alzheimer’s fairly recently and despite having the physical strength of an ancient Athenian, it’s clear that her years of devotion to her husband have taken their toll.
It was Christmas a couple of years ago that our other Grandfather started acting a little odd too. The family had a few suspicions and, around the same time as our Grandmother’s lung cancer diagnosis, we heard that yet again, Alzheimer’s was in fact to blame for our Grandad’s behaviours.
By this time Jackie and Barry were unable to live independently. My parents closed off the self-catering accommodation of the Bed and Breakfast business and moved our Grandparents in with the view of being able to support where necessary but still allow some real independence, important for a pair who were so hard-working and autonomous throughout their lives. From a selfish viewpoint, having Jackie and Barry at home was amazing. It meant we had the opportunity to spend time with them whenever we would go back to Cambridge and I think that was some light relief for our rents too!
As cruel as the disease is our family became aware very early on that to get through each day you have to see the ‘humorous’ side. Barry’s cheeky comments and relentless singing (predominantly ‘why are we waiting?’) could keep a crowd entertained for days and he gained confidence that he hadn’t necessarily had prior to Dementia. It was important too for Jackie to get some respite from her 24 hour job, and when Barry felt no pain he was simply childlike, something we have all learned to value, treasure and gain happiness from.
But, of course, when it comes down to it, the reality is that the not-so-fun times outweigh those special magical moments. Seeing Jackie’s battle has been distressing, particularly for our Mum and Step-dad, with so many mix-emotions of pain, frustration and anger with a real desire to argue – none of these are traits we’d seen in Jackie before. But fundamentally our Jackie remains one of the most phenomenal, loyal women in the world.
Barry passed away a fortnight ago, full of contentment, and it was the most peaceful and special moment, with Jackie and us all by his side. Jackie refused to give up on Barry and, despite her own ailments, passing over care to someone else was simply never a viable option. Having not spent more than a week apart since the day they met age 17, it really is a story of love that kept Barry strong and gave him the quality of life he deserved over the last years of his life.
I’m running the marathon as much out of undying respect for my entire family as I am to fundraise. The Alzheimer’s Society share knowledge and resources that genuinely enlighten and change lives. They have directly supported my family, all whilst gathering critical research that could stop this cruel disease that’s set to double in sufferers over the coming years. Our lovely Barry was not himself, Jackie too is not who she used to be and our Grandpa is losing parts of a brain that I’ve admired from the youngest age.
It is a sad story, but it isn’t a sob-story. The marathon is an incredible excuse to celebrate – to celebrate our late Granny and Barry, to celebrate the relentless love of Jackie and our colossal family network and to celebrate the work that IS being done by the likes of Alzheimer’s Society to take us into the future with understanding, learnings and steps closer to a cure!
There’s so much to learn about Alzheimer’s and Dementia and it’s safe to say I border on obsessive when it comes to hearing about new treatments or research development. But I won’t bore you… If you’re interested you can visit www.alzheimers.org.uk – it’s such a phenomenal resource.
So that’s it really. 7 days to go, an extremely disrupted training plan and an ‘ideal time’ firmly thrown out the window. I’d be so grateful for any donations, big or small, at www.justgiving.com/bella-wade but if all you get from this is the Bookcase analogy then great! Pass it on! Share it! Because truly you never know when yourself or other loved ones may need it.
p.s. I thought I should tie in some form of apparel (given the general ‘tone’ of the blog).