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?"


UPDATED: 28th OCT 2018

In the original post, here I had compiled a list of books written by people with dementia about their experiences. Given the great response I have had to this original post, I have created a new section on my web page dedicated to reviewing books such as these. Please select ‘LIBRARY’ in the main menu or CLICK HERE to access. All the content from the original post has been relocated to this new section. ENJOY!

Jessica YoungComment