My first experience of dementia was when my maternal grandfather was diagnosed with Alzheimer’s disease.
My mum is Japanese and her family live in Japan. It was difficult to come to terms with the diagnosis, especially as it was hard for us to support my grandmother and auntie who were on the other side of the world and were having to quickly adapt to become his carers.
Increasingly, my grandfather – Ojichan in Japanese – found himself trapped in his own brain. He was convinced he was in the 70s where he was working as a engineer; convinced my mum was still living in Japan and was still at secondary school; and oblivious to the existence of his five grandchildren.
As his memory and ability to walk deteriorated, he was also diagnosed with an invasive form of stomach cancer. As fate would have it, this coincided with his wife, my grandmother, also being diagnosed with the early stages of Alzheimer’s disease.
Knowing my Ojichan didn’t have long to live, we organised a trip for my family in Japan to fly here so we could all celebrate his 80th birthday together.
It was hard to see my once vibrant, funny, charismatic Ojichan often confused, agitated and disorientated. It was even harder to see the toll it had taken on my auntie who had become both his and my grandma's full-time carer.
However, during those few weeks, there were moments where the clouds lifted and he would laugh, joke and reminisce about happier times – and those are the moments I cherish.
At the end of the trip, we toasted to the solidarity and specialness of our international family, through times of joy and hardship, from Japan to England.
My Ojichan deteriorated very quickly from then and he passed away surrounded by his family at his bedside six months later.
The progression of my grandmother’s Alzheimer’s has been a lot slower and she’s been able to stay relatively independent for a lot longer.
I went to Japan to visit her at New Year having not seen her for a few years. It was so nice to spend time with her after so long but it was shocking to see her deterioration.
Her short-term memory is very poor and she struggles to remember anything past every five to 10 minutes as well as names of people. However, if you took the time to talk to her about past events or experiences, she was able to recall some of them which put a big smile on all of our faces.
Meanwhile, my English grandmother has been diagnosed with a different form of dementia – dementia with Lewy bodies. I’ve been shocked by how rapid her deterioration has been. In two years, the disease has progressed so quickly that she is no longer able to walk, talk or feed herself and lives in a care home.
My smart, glamorous, social whirlwind of a grandma is now a shadow of what she used to be.
So on April 28 I will be running in memory of my brave Ojichan; in support of my Japanese grandmother and English grandmother; and in support of my family and the staff who tirelessly care for them so they can try and live as comfortably and as dignified a life as possible.
And I’ll be fighting for a world where we can stop this destructive condition from taking away dignity and joy from so many families.