What is it like to live with dementia?
Over the past few months, I have developed a passion for reading books written by people with dementia about their experiences. My Mum often says, "you're not reading about dementia again are you? I just want you to rest your brain, and read something light. Try a romance or something", to which I respond, "But I enjoy them!" I always stand my ground and continue reading, but invariably feel the child-like guilt of defying one's parents, a feeling that I am yet to shake in my adulthood.
Over the Christmas of 2017, I was going to be staying with my parents in Adelaide. I decided to pack one of my books about dementia. I chose 'Iris: a memoir of Iris Murdoch' written by John Bayley. I must admit that I chose it largely because it didn't have the words 'dementia' or 'Alzheimer's' in the title, in the hope of avoiding the 'rest-your-brain-please' talk with Mum (LOVE YOU, MUM!). I thought it was very clever... much less obvious than others I had to choose from, in 'The Perspectives of People with Dementia' and 'Dementia Activist'.
On the first day of my visit to Adelaide, I was sitting on my parent's couch delighting in my book, feeling ever so happy with myself and a little mischevious (cheap thrills!). Dad sat in his recliner next to me, and asked me casually, "What's that one about?"
"It's a book written by this guy, John Bayley, who used to be a professor of English at Oxford. He is writing about how he met his wife Iris, and about their life together. It is very romantic."
Dad responded with a smirk, "... and she has dementia, doesn't she?"