Thoughts and Insights on Music, Information and Dementia
“Love is not love, which alters when it alteration finds.”—William Shakespeare
This weblog is about survival in the face of dementia. I don’t mean surviving dementia itself, but surviving the act of caring for someone we love who is living with dementia. Moreover, I’m not talking about physical survival (although that’s an important concern), but the survival of the relationship that existed before the dementia struck: between two married people, for instance, or between parent and child, or between siblings, or any other deep relationship that is warping under the effects of cognitive loss. Despite what Shakespeare says, it’s difficult to keep loving in the face of such profound alteration.
My research in the past few years has led me to two distinct areas of study. One is music: that may not be very surprising, given the popularity of Oliver Sacks’s book, Musicophilia (2007), or of the documentary, Alive Inside. We’re learning a great deal these days about music and memory, and their mysterious relationship.
The other area of study may surprise you: librarianship. I don’t mean libraries themselves, important as they are. Rather, I mean the disciplines and habits of thought that make libraries possible. In addition to all other tasks, a caregiver engages in constant, and constantly changing knowledge organization. As dementia continues its unpredictable path, the brain forges different connections, causing the person to feel, behave and communicate in unpredictable ways. Librarians spend their professional lives mapping unexpected demands to an ordered environment, and along with the scars and the stories, they’ve also developed skills.
In addition to being a scholar, I’m a librarian and a musician; I witnessed the effects of dementia in both my parents. I’m writing this weblog to pass on what I’ve learned and what I’m learning.
Love may not alter, but it does need to adapt. That’s what this blog is for.