A few years ago now I wrote an article for YoungDementia UK, celebrating my 20-year survival after diagnosis with dementia at the age of 46. This came out around the time of my book Nothing About Us, Without Us, which is a collection of some of my talks since beginning to speak out in 1996.
Now I feel like a survivor. After diagnosis in 1995 I became very depressed, trying to come to terms with a future that suddenly looked very bleak. There were no other people with dementia speaking out, and it seemed as if all I could to do was get my affairs in order before I could no longer write or speak. It was a very bleak outlook; for I was recently divorced and had three girls aged 9, 14 and 19. My fears prompted my first book, Who Will I be When I Die? (Edit originally published in Australia in 1998).
Unbelievably, I remarried in 1998, and my lovely husband is an enabler by my side, helping me to cope as things are slowly becoming ever more difficult. I talk about our story in my book Dancing With Dementia, as well as try to describe what dementia feels like and what others can do to help.
A few years ago, I decided to try to do a PhD, analysing a key theme that comes out in my books, which is the terrible and paralysing fear of loss of self. People say, “She’s no longer there” or “I’m losing my husband to dementia” – the view seems to be that a loss of some brain matter means losing who we are as a person. This seems to be ridiculous, as how can we disappear as a person just because of the loss of some brain cells!
Over the past few years of exhausting research, I have come to the conclusion that throughout the lived experience of dementia the self remains: we retain a sense of embodiment, as well as relationships with others. Also we can find in the present moment a deep sense of meaning. We might not remember events from day to day, or hour to hour, let alone speak about any of this clearly, but why should this matter? Even a robot can keep an accurate record of its “life” but has no sense of self!
My newest book based on these findings is Will I Still Be Me? (Jessica Kingsley Publishers, August 2018). It gives vignettes to illustrate the various points that I make, which are based on the many real (de-identified) people with dementia whom I have met over the years. Most poignant perhaps is a woman who I visited who was dying from dementia and had not spoken for a long time. Her family asked me to read and pray with her, so that they might be reassured that she had retained her faith. Indeed she had! She spoke simply of her beliefs a day or so before dying, which shows that even at the very last stage we remain an embodied relational self who can find a deep sense of meaning.
- Christine Bryden PhD was diagnosed with young onset dementia 23 years ago. She is a well-known author and advocate, having been awarded the Australia Medal (OBE equivalent) for her efforts. Christine lives in Brisbane, Australia.