Today, the 11th December 2013, the UK is hosting the G8 dementia summit. The summit brings together G8 ministers to discuss dementia. The aim is to stimulate discussion on the best ways to raise investment into dementia research, improve prevention and treatment of dementia and improve the quality of life of those with the condition.
My dad was diagnosed with dementia in January 2010. It was heartbreaking to see the devastating effect that dementia had on my dad, and on those who loved him. Dementia affects all those who know and love that person. It’s almost a year since dad died and his loss is still felt acutely. As dementia is, once again, in the news, I wanted to take this opportunity to highlight my dad’s battle with this evil disease and help to raise awareness.
Below is a speech that I wrote for the RMR Social event which explains how my dad’s dementia affected myself and my family and how I’ve used running to help me get through the tough times.
“I think it’s safe to say that running has been my saviour over the last few years. As life became increasingly stressful, running no longer became just another thing to fit into my schedule. It became a necessity. I knew that, once my trainers were laced up and I was out the door, it was purely ‘me’ time. A precious timeframe in which I could think over things with a clear mind or simply run hard and focus on nothing more than the next step, the next breath.
Our heart breaking journey began once dad received the official diagnosis of dementia. Before that, we found it easy to bury our heads in the sand, dismissing dad’s increasing confusion as an inevitable consequence of retirement and ageing. From January 2010, we could no longer avoid facing the harsh reality that lay before us. Even then we were still so unaware of how our lives would be impacted by this truly evil disease, this interloper that had crept so rudely into our lives.
A dementia diagnosis affects not only that person but all those who know and love them. My mum and dad were the classic childhood sweethearts, soul mates. They married in 1968 and, though life was never easy, they always had each other. Dad was a true gentleman and nothing was ever too much trouble for him. Despite working long hours as a mechanic, he’d still find time to fix chainsaws, lawnmowers, anything (!) for friends, family and neighbours. And, even though he did work long days, he’d still have time to take us out for evening walks. I have such fond memories of these evening strolls, spotting shooting stars and feeling so safe despite the dark because I was with my dad, my hero.
As dad’s dementia advanced with an unrelenting pace, my mum became his main carer; her love and support unquestionable. It was then we began to realise just how little real support there is for those affected by dementia, particularly for those who are younger and fitter when diagnosed. There were minimal care homes suitable for dad and so respite care during the latter stages was generally inadequate. There is so much more that needs to be done as more and more people are diagnosed with dementia.
It’s difficult to find the words to describe just how good a man my dad was. The amount of people who came to his funeral was testament to the number of lives he’d touched and the stories we have heard from friends and family since just serve to remind us of the man he was. I hope I have managed to convey the essence of my dad, to some degree at least. It’s important because, once the diagnosis was given, we began to lose that man, the quietly spoken, witty, strong, central figure in our lives.
We are shaped by our memories and by the people we know. If we can no longer access our memories, and those who surround us are nothing but strangers, how do we find our place in the world? When the world in which you now inhabit is so alien to you, how would you feel? My dad was lost, confused and vulnerable and this led to increasingly unpredictable and sometimes violent behaviour. This was very harrowing to witness as my dad had always been such a gentle, quiet man. Even during the latter stages of the disease we were still afforded glimpses of the ‘old dad’; his increasingly rare moments of lucidity. Another cruelty inflicted by this disease as it was a further reminder of just how much we’d lost.
Following dad’s death in December 2012, I knew I needed something that would focus me and give me something to aim for in the future. In January 2013, I signed up for the Lakeland Trails marathon which was in July 2013. Opting for a trail marathon as my first attempt at this distance was, perhaps, a bit mad but I prefer trails over road and thought the scenery would help distract me from the pain! . The miles I ran that January, in the days and weeks following our loss, were minimal, but the effort it took to get out the door and moving at all was huge! Knowing I had a big event on the horizon kept me going and I truly believe things would have been a lot tougher if I didn’t have running to fall back on. In March, I even managed to achieve the elusive sub-2 hour half marathon goal that I’d been aiming for for years! 1 hour 57 minutes of pain. But boy, did it feel good!
Completing both the marathon and the Great North Run for the Alzheimer’s Society was very emotional. The marathon was particularly gruelling; hilly trails, sweltering heat and stiles to clamber over at mile 19 – torture! There were times when I just wanted to quit. The thought of sitting down and crying while waiting for someone, anyone to come and get me was overwhelming at times. But then I’d think of all those who’d offered me support, donated to the Alzheimer’s Society and listened to me ramble on incessantly about marathon training. Above all, I thought of dad and I knew I couldn’t quit. The Lakeland Trails Marathon was the toughest thing I have ever done, but I did it! Running showed me that I am a lot tougher than I think!
Dad’s dementia and death has changed me. Spending time in care homes whilst dad was on his respite breaks made me realise that we have to live in the present. We have to use our bodies and push our limits while we are able and never take our health and fitness for granted.
Running itself has also changed me. I will always be quiet but, as I realise that I can achieve more than I ever thought possible, my confidence has increased and I find it much easier to approach people and chat to them. Something I would never have had the nerve to do before running came into my life. Running really has had a positive impact in all areas of my life.
Running has been a constant in my life for a few years now and I can’t imagine my life without it. So, for as long as I’m still able, I’ll continue to lace up my trainers, hit the trails and enjoy the world that surrounds me.”