ARTZ, Authors and Alzheimer’s

June 25, 2009

This post owes its thanks to a conversation with Karen Kruger on Tuesday, at the first Yale Center for Dyslexia & Creativity conference. More on the conference in upcoming posts, but for now, it’s ARTZ and Authors, all related to Alzheimer’s.

ARTZ
Karen began by telling me about ARTZ, Artists for Alzheimer’s. Art as therapy has long been a useful tool for assisting people with myriad health issues, right up there in positive impact with music, dance and pet therapy. “The ARTZ Museum Partnership Program implements interactive, educational museum programs for people living with Alzheimer’s disease and related dementia.” My Dad is unable to visit a museum, but perhaps I can bring “art” to him. I see him respond to my singing of songs and playing of his favorite oldies (Frank Sinatra always hits home); perhaps art – both viewing and creating (why not finger painting!) – will also tweak a memory or provoke a positive response.

AUTHORS
Still Alice was written by neuroscientist Lisa Genova, whose grandmother had Alzheimer’s. Lisa had the benefit of being a scientist who could understand the mental deterioration that was taking place in her grandmother’s brain, but it left her wondering how a person with Alzheimer’s felt as their cognition slipped away. From this curiosity came Still Alice. Thanks to a book journal given me by my oldest son, I’ve been writing about the books I read, and here’s what I wrote about this book back in March.

Deb S. loaned me this book. written by a Harvard PhD in neuroscience and online columnist for the National Alzheimer’s Association, it is a fictionalized yet highly informed look at one woman’s descent into dementia after being diagnosed with early onset Alzheimer’s. The woman, Alice, is a Harvard professor with three grown children and a husband, also a Harvard researcher. They have a summer home on the Cape, in Chatham. Yes, the ending is a tear jerker – Alice is alive but has lost so much of her capability to communicate. Lisa’s insights into Alice’s mindset seem spot on and I wish-I wish-I wish that I had read a book like this when Dad was in the early stages. Perhaps I could have been more helpful to him.

I did not read verbatim, and intentionally read quickly, because this topic and story – particularly this story – were too close to home. Fred and I teach at the same school. We’ve spent many glorious, soothing summers on the Cape. We have two incredible children. I cried for Alice but nestled deep down perhaps I cried for me. I could have the gene my Dad has, and that portends a future I don’t want to contemplate, certainly not until or unless it becomes apparent that I need to contemplate it.

And that is the most honest I’ve been about Alzheimer’s! This was a sad story but also somehow encouraging, because Alice had a voice. This is Alice’s story.

Karen also recommended another book, which I have ordered, I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s by John Zeisel. Am very much looking forward to reading it, and of course, will share my thoughts in a later post.