“Every day is new now, with little remembrance of the day before, but with enough memory retained to know there was a yesterday. This is a new way to live and it takes getting used to.”
Thomas DeBaggio, author of the above quote, was diagnosed with early onset Alzheimer’s in 1997 at the age of 57. His book detailing the progression of the illness (Losing My Mind: An Intimate Look At Life With Alzheimer’s) was published in 2000. He went on to write another book in 2002 chronicling his life with dementia, and became a tireless advocate for Alzheimer’s research. He passed away in 2012.
Up until now, all of my posts have focused upon discerning the difference between normal age-related errors we all make and the more problematic mistakes associated with the onset of dementia, as well as preventative measures we can adopt to try to dodge the illness which affects about half of those who make it beyond the age of 85.
Reading this book last week, however, was my first road trip into the world of life with dementia…and it was sobering.
The book is presented as a braid of three interwoven threads. Fortunately for us, DeBaggio’s first love was writing. He was a journalist before settling into his career growing and selling herbs, which also led to his writing about that experience.
The book is not written in chapters. Instead, paragraphs alternate between the three threads. It’s a surprisingly effective technique that captures the essence of the relentlessly vanishing world in which he lived.
The first thread is his biography. Reading it, I wondered if he wanted to leave a trail he could follow to find himself once his memory of his own personhood failed him. A noble effort, for certain, but doomed to failure as the disease progresses inexorably through its mind-sucking stages which would ultimately rob him of the ability to understand that the story he had penned years before was about him.
The second thread is a description of his current status as it unfolds over the course of his first three years living with Alzheimer’s. At this point, he still has the introspective awareness to be able to recognize when he is making a mistake or losing a cognitive capacity or experiencing something new and unfamiliar. It is here that I am most thankful for his literary skills…which makes it all the more painful to travel with him as he loses access to his words and to the thoughts that he can’t pin down and retain:
“There is a dullness in my brain now to allow me to stare into silence without an idea or thought breaking the stillness.”
Juxtaposed against his past and his present (and looming future) is a summary of his research into Alzheimer’s disease circa 1999. He details the state of the research with excerpts from scholarly publications. It soon becomes frustratingly apparent that there has been very little progress in the past 22 years.
I’m glad I read this book as it helped better define for me the seamless spectrum that runs from the errors of normal aging to indications of cognitive decline to the early experience of dementia. It’s the transition from making errors that are irritating but readily resolved to awareness of problematic thinking that has real-time consequences to the loss of control of your inner dialogue.
Thankfully, I’m still in pretty good shape. When I woke up Thursday morning thinking about how I would end this episode, I was able to table my ideas and return to them after breakfast without any problem.
My thoughts don’t simmer in a quantum soup where they live lives measured in nanoseconds and their very existence is always uncertain.
My computer’s spell-check isn’t working overtime to try to figure out what it is I really meant to type.
I’m nowhere near traveling DeBaggio’s path, yet I am grateful to him for illuminating the way.