Riding from Uluru to Ballarat (2000km) in 14 days to raise awareness for young onset dementia, in memory of my father Sam.
My Dad, 54, was living a busy, full and successful life when he unexpectedly became ill. He spent 3 weeks in hospital where he was initially diagnosed with pneumonia. Unfortunately the cause of his infection was never found and it spread quickly throughout his whole body causing irreversible extensive damage. We weren’t terribly concerned at the time and considered ourselves lucky to still have him, as the doctors weren’t sure he would survive.
I was 21 at the time and while completing my university exams spent long days and nights at his bedside. Eventually he was able to come home, but unfortunately as a shadow of the man that walked into hospital a few weeks previously. Dad was never able to work again but made the most of what he could do and looking back now, amazingly, never complained. The once athletic man now walked awkwardly, had short term memory deficit, and struggled with verbal fluency. He was very self-conscious and embarrassed by himself but soldiered on. Life went on for us all, and we adjusted until about three years later, it was devastatingly obvious Dad was declining. A series of investigations followed with a diagnosis of atypical young (or early) dementia.
Most dementia diagnosis have a slow, steady decline and a plateau point. Unfortunately for Dad young dementia is a very aggressive disease, this meant he required 24/7 care to do the most basic of tasks including clothing himself, showering, eating, even sitting. Simple living became difficult. His last three years were a tough battle.
Between my Mum, sisters and myself, we worked around the clock to keep him at home and out of care. A family member would always be there, balancing our everyday lives with work and children, to care for him full time. It’s quite confronting having to feed, clothe and wash your Dad, especially with the relationship between a father and son. There were days where he had frequent falls and even nights when Mum would ring me at 2 or 3am because he had fallen out of bed and she needed my assistance.
A Dad is always someone you look up to as having incredible strength, both physically and mentally, and to see that stripped away in front of my eyes was especially hard to deal with. I could also tell how hard it was for Dad, the protector and provider of the family, a man that lived completely and utterly for his family, relying on us to live every day. All he ever lived for was making our lives as good as they could be - this is what made him the happiest.
Looking back, living through Dad's battle with young onset dementia, I have realised many things, but there are a few in particular that stand out. Dementia isn’t a disease that just effects older people, yet that is often the perception. Dad was 54, strong fit and healthy and it eroded his cognitive and motor skills as well as his dignity. His memory and ability to communicate all deteriorated and small daily tasks like getting in the car, sitting down on a chair or walking through a door could sometimes take 5 or 10 minutes.
Secondly, how isolating the disease is, not just for Dad but for our family as well. As mentioned, it’s incredibly confronting to watch and be around someone declining so rapidly, simple things like going to get a coffee with friends was so traumatising for Dad as he would not want to embarrass himself or others by spilling something or not being able to eat something properly. The simplest of family pleasures like holidays or outings were no longer possible. Friends and family finding his illness confronting stopped dropping in to visit or including us in social events. Although we had a strong and close knit support network that offered amazing help, that broader network did become a lot smaller.
I am not the only one going through a challenging personal experience, I consider myself lucky to have had 26 years with such an amazing man. But what would separate me from other people that are going through similar situations? I could sit back thinking how unlucky I was for losing a parent so young? And why Dad? Why me? Why our family? Or I could be proactive. I wanted the negative experiences and feelings from the last few years to mean something, and wondered what difference I could make. I wanted to raise awareness and change the common perceptions of dementia. For some good to come out of a really ‘shitty’ situation.
Over the last two years I have developed a strong passion for cycling with friends Jamie and Jarrod. They have jumped at the opportunity to support me as we embark on a charity ride that will see us on an epic journey from Uluru (Dads last and much loved family holiday) to Ballarat (his home town for his full 61 years), covering approximately 2000km in 14 days in September 2018. I don’t take riding 2000km in 14 days lightly, it’s going to be incredibly challenging and testing, but that’s what Dad’s last 6 years were like, so I think it is important that I am tested during this journey physically and mentally.
We are working directly with Dementia Australia and will be raising money and awareness for their national program that also provides support for younger onset dementia patients and families. We will also work with Eyre House in Ballarat, a respite facility for young onset dementia patients. They gave fantastic support to my family and were amazing in caring for Dad, providing some great memories with their day trips and other programs. The money raised will provide individuals and families much needed awareness and support.
All donations, big or small are very much appreciated. I look forward to sharing this ride with you.