How caring for his mother when she had dementia inspired Mike Barnes's new book
The work is personal for Barnes. His mother Mary was 83 when she was diagnosed with Alzheimer's disease, a condition that manifested itself in drastic personality changes, memory loss and dementia.
Dealing with a difficult situation
"Over the last few years I've met a lot of people dealing with relatives that have dementia. Each one of them has a different situation but nobody gets off easy that's for sure. It so easy to overestimate how capable the person still is. You're trying to still give them their autonomy and that can lead to a lot of errors at first because you're just trying to let them live a full life.
"I tried all kinds of approaches to write this book. I first thought it could be a book of journal entries, then a straight up research book and I had a sci-fi novel in mind at one point. That idea came which is just the simplest one — writing letters to an anonymous caregiver. I liked the idea because there was an immediacy to it; I could I could say anything I wanted."
A collage of emotion
"I had a strong visual sense of the book. I knew it had to be short pieces, that a person could pick up and put down very easily. It was almost like a mosaic or a collage of them with lots of white space. I thought I was prepared and informed about this issue, particularly the emotional or spiritual aspect of of going through this. It wasn't so much the nuts and bolts, it was more of what psychological difficulties come with it.
"I also filtered the book down to the essentials: I wanted to convey not the whole experience of caring for someone with the disease, but just winnowed down to some nuggets they can take away. I wanted to write something about what I was experiencing with dementia and caregiving. It was such a powerful experience. I wanted to claim back something for myself because I felt like it was eating me alive and if I could write about it, that would at least be a corner that was mine."
Frame of mind
"This is my tenth book and it was written longhand because I knew the segments were short. The fact that these are letters led me to writing the book in that way. When I wrote this book in earnest it was November of 2017. I was feeling in a calm and positive frame of mind. The feeling that came most often was a real admiration for my mom and her struggle. I've written from a lot of different moods but enthusiasm is a good one for me if I can find it."
Mike Barnes's comments have been edited for length and clarity.