Dennis Frost was diagnosed with frontotemporal dementia at age 59. In honour of Frontotemporal Awareness Week, he has shared with us some of the impacts the diagnosis has had on his life. Here, he discusses the worry of forgetting family history and what he can pass on to the next generation.
How do we live on beyond our own mortality? We pass our genes on to our children, but we are more than the sum of our genetic inheritance. We also pass on much of our selves in the values and ‘life lessons’ we teach our children. We live on, in our children’s memories as do our parents live on in our memories. Indeed much of what is us – how we behave, our value and belief systems – has been shaped by our parents. Indeed, we owe our lives to our parents.
I only have a few vague memories of one of my grandparents. I can remember her warm kitchen, and her ‘mintie’ coloured hair. She must have died before my sixth birthday.
My mother, who died as a result of dementia just after her 90th birthday, told me stories of her father. He saw active duty during the First World War and was taken prisoner for the duration. After the war ended he returned home to Sheffield to be reunited with his young family. He had two daughters that he had barely seen during the war. My mother was the oldest at about age five, her younger sister had not yet met her father at this stage. My grandfather returned to his former work in a coal mine and was killed by a rock fall within a couple of days. Ironic to survive the horrors of war, only to die when you return home to what should have been a bright future. It is only now that I can appreciate the enormity of what happened, and how it would have shaped my mother’s life.
My father passed away before my 14th birthday and it is now, almost 50 years later, as I try to pass on my memories of him to my children that I begin to understand more of him as a person.
As much as we wish to be remembered, we need to remember those who have gone before. My fear is failing this responsibility, and forgetting my parents and the personal history they have shared with me. Breaking this chain of family memory. Now I am trying to find out as much about our family history so I can pass on my memories while I can.
I was an observer as I grew up in the ’60s and ’70s and all I have now of this time are my memories. Our memories shape us as we are forged in the crucible of life and provide a framework for us to understand and cope with life’s daily challenges. Ultimately, we are answerable to those memories and the moral frameworks they helped shape.
Memory and learning are the keys to who we are. Our genetics just provide the container to carry our “inner selves” though life. When this mortal container begins to crack and our memories are at risk, we are faced with uncertain and frightening paths.
My parents passed their story lines on to me, and I carry them as memories, as did their parents pass their story lines on to them. I have a deep desire and need to pass my story line onto to my children and to others I hold dear. The story line becomes richer with each host and each generation of telling, an unbroken chain extending though time. Each telling strengthens my ancestral bonds, and I get a strength and sense of honour in doing so. I also feel a pride in the belief that my children will one day pass the story line on to my grandchildren. An un-broken chain.
My fear today is that my dementia will break that chain, or question its integrity by affecting my memory. My fear is failure to our story line.
Today I work at preserving these memories. I work to leave a fossil footprint in time of my journey, to honour my past and to honour my children as well as the lives of future generations. Indeed I am heartened to think of the Ediacara fauna – the remains of those first soft-bodied animals that lived more than 600 million years ago. If they can leave a legacy of their story for such a time, I can pass something more substantial on to the next generation.
Dennis is part of the Dementia Alliance Group. They are an informal group of people with dementia, including carers and friends. They meet regularly to socialise in quiet, non-threatening environments. Their ages range from middle age to people in their 80s.