For personal reasons, I have held off on reading this book for months, despite all the good things I'd heard about it. I have to thank Lisa at Books on the Brain for the review, and subsequent e-mail conversation, that gave me the nudge to dig it out of TBR and make a plan to read it in October 2009, when I would be participating in the Alzheimer's Association Memory Walk with my family. We participate in this annual 5K walk to raise funds for the Alzheimer's Association and its work in raising awareness, supporting research, and providing resources for Alzheimer's patients and their families. We're involved with it because my mother, who passed away in 1999 after seven years in a nursing home, may have had early-onset Alzheimer's.
I say "may" because we don't officially know, but it's the most common of a few possibilities, so that's what we go by. There are other forms of dementia that present in similar ways, and are more likely to be found in younger people; my mom's symptoms began to show when she was in her early fifties. However, because she had a lifelong fear of doctors, we were unable to get her to seek medical attention for the changes she was going through while she still could have talked about them and been tested. Even so, a brain biopsy is still the only way to confirm a diagnosis of Alzheimer's, and it's performed after death; although we asked him to, my father didn't make the necessary arrangements for that to be done, so we're lacking some very important information. The fact that early-onset Alzheimer's usually has a strong genetic connection makes not having a definite diagnosis especially problematic; I don't know of anyone else in my mother's family who had it (although some relatives did develop the more common elderly version), but what does it mean for my sister and me?
Whether or not EOA actually was the cause of my mother's dementia, what I remember about the onset and progress of her condition is a lot like what Alice Howland, the title character of Lisa Genova's novel Still Alice, is going through. Alice is 50 years old, the mother of three grown children and a prominent professor of psychology and linguistics at Harvard, when she finds herself lost and disoriented while out running one day. She's been forgetful lately too, but she's been attributing her mental lapses and other slip-ups to menopause and"normal" aging; now she wonders if it's something else. After she sees a neurologist, she learns that it is indeed something else; her tests come back indicating a probable diagnosis of early-onset Alzheimer's, and a genetic screening confirms that she does have the accompanying mutation. Drugs are prescribed that may help slow the progression, but Alzheimer's is incurable and unstoppable, and Alice's life will never be the same. Little by little, and all too soon, she will lose nearly everything that has made her who she is.
Lisa Genova, a neuroscientist by training who originally self-published this novel, has done a remarkable job of truly getting inside the mind and emotions of an Alzheimer's patient. She includes a lot of real information about the disease and its effects in ways that don't distract from the story, and she effectively captures its disruption and alteration of family, career, and daily life, but the fact that it's all told from Alice's perspective makes it unique and unforgettable. The reactions of Alice's family and colleagues to her condition rang true, but Genova makes the reader grasp Alice's own reactions too. The instances where the author "loops" an episode by repeating its opening paragraphs at the end, and when she frames Alice's behavior with someone else's response to it, do an especially good job of illustrating what's happening and making the reader connect with it.
I could feel Alice's fear and frustration over the changes she was experiencing most specifically as she was losing communication and reading comprehension; those are two things I particularly remember about my mother's condition. In addition to the mental illness - technically, that's what Alzheimer's is - my mother had low vision for her entire life and was nearly blind during her last years. I knew she hadn't been reading for a while before she entered nursing-home care, but I'd thought it was because of her eyesight; now I realize the dementia may have been part of it as well. (If you know me through this blog, I'm sure you can imagine how unsettling this is.)
I had postponed reading Still Alice because I was pretty sure it would be a difficult book for me, emotionally - and it was, but not quite in the way I expected it to be. It got under my skin, and it's stayed on my mind. It made me sad, although it didn't make me cry; but more than that, it scared the hell out of me. I was engrossed and moved by Alice's story, and I feel that it gave me a lot of insight into Alzheimer's that I didn't have before - but knowing more has made me more afraid of experiencing this than I was before, too. I'm just five years younger than Alice, and not much younger than my mom was when she began to slip away - and I DO NOT WANT THIS to happen to me.
I'll be keeping this book, and recommending it to everyone, whether or not their lives have been touched by Alzheimer's - it's frightening, but it's also enlightening, and it's a tremendously worthwhile read.