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My posts last October about the “haunting books” I had read are among some of my most viewed posts, so I have decided to review more haunting books this year. (See here for the last haunting book of 2012, a book similar to today’s choice.)

still alice coverMy first haunting book for October 2013 is the novel Still Alice, by Lisa Genova. I learned of this book from readers who mentioned it after I wrote about Keeper, by Andrea Gillies, earlier this year.

I’ve now read several books, both fiction and memoir, about the impact of Alzheimer’s Disease on sufferers and their families. Still Alice is one of the most readable. It fits my criteria for a “haunting book” because it stayed with me after I closed the cover and raised questions that have no answers.

Still Alice is fiction, but the author, Lisa Genova, is a neuroscientist. She filled the book not only with memorable characters, but also with detailed information about diagnosing and treating the disease. I am fairly knowledgeable about Alzheimer’s, so I found some of the medical information intrusive to the story. But it was good information and a very palatable way to become educated about the disease. If you or a family member have recently been diagnosed with Alzheimer’s, I recommend Still Alice as a gentle way to prepare for the journey ahead of you.

SPOILER ALERT – THE REST OF THIS POST DISCUSSES THE PLOT AND THEMES IN STILL ALICE.

The protagonist in Still Alice is Alice Howland, a professor at Harvard, married to another professor, and the mother of three grown children. She realizes at age 50 that she is losing her memory. Soon, she is diagnosed with early onset Alzheimer’s.

Age 50! That’s younger than I am, so the downward trajectory that Professor Howland found herself on hit very close to home for me.

Ms. Genova weaves in Alice’s diagnosis and medical treatment with the impact of the disease on her professional status and family life. The novel tracks Alice from her initial recognition she has a problem until she can’t remember who her children are. She must give up her career. She can no longer run alone in her neighborhood. Step by step, page by page, she loses the life she had and loved.

Her relationship with her husband suffers as he moves from spouse to caregiver. Her children come to terms with her condition in different ways, depending on each one’s state in life and past relationship with Alice.

Some readers have faulted the book because Alice starts out with such a perfect life—a Harvard professor at the peak of her career, comfortable financially, a perfect family (well, not really—the grown children do have some issues). Therefore, Alice has further to fall than the Average Joe in society. While the Harvard professor role might be a bit of unnecessary drama, I think the essential point Ms. Genova is making is that Alzheimer’s can impact anyone. No matter where you start the cognitive decline of Alzheimer’s, you will end in the same place—not knowing who you were, nor who your loved ones are.

What struck me the most about Still Alice was how Alice’s husband reacted to her decline. Dementia hurts caregivers as much as it hurts the patient, and Alice’s husband was simply unable to come to terms with what his life would be if he became a full-time caregiver. His decisions, of course, impacted the rest of the family, as they struggled to decide how to care for Alice. Ultimately, he leaves most of her care to their children. So much for her perfect family life.

Most of all, however, Still Alice is about Alice. About who she was before her illness, which aspects of her personality survived her increasing disabilities, and what parts of her were slowly lost to herself and to her colleagues and family.

Ms. Genova gets us into Alice’s head so well that we see her diminishing organizational skills, vocabulary, and reasoning through the prose in the novel. This highly competent woman struggles at first to maintain her life as it was, then moves into a denser and denser fog, until she is more accepting of her condition—indeed, is unaware of it—than her family.

Alice keeps a list of five questions for herself that she answers repeatedly through the book. Each time her answers are less detailed and less accurate. And yet she does not realize her deteriorating condition. Her decline impacts the readers of this book far more than it impacts Alice.

The novel is not compelling as a work of fiction. The plot is predictable, without many nuances, and it reads like an instructional manual or case study in places. However, the book is haunting, because it forces readers to ask: What would I do if diagnosed with dementia? How would my family and friends react? Who would take care of me? How do I treat people with dementia whom I know? How should I treat them?

I’ve written before about my mother’s struggle with Alzheimer’s. She is now in assisted living, and her abilities are continuing to decline. After reading Still Alice, I ask myself: How do I continue to treat my mother with the love and respect she deserves as my mother, when she cannot mother me any longer, nor even remember when she did?

A haunting question, indeed.

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