Still Alice by Lisa Genova

This book has been on my shelf for several years, waiting patiently for me to be ready to read it.

    

The story is told from the point of view of Alice, a professor at Harvard. She is diagnosed with early onset Alzheimer's. We watch as she and her family struggle with the diagnosis. We watch as she loses her capability to remember and process things as she descends into dementia.

I watched my mom descend into dementia too, which is why I knew this book would be hard and why it's taken me seven years to read it.

My mom's situation was slightly different, just as everyone's experience with any illness is unique. My mom had a stroke in August of 2003. At the time she'd been living alone, managing her very brittle diabetes with frequent blood sugar checks and administering her own insulin at each meal by determining the appropriate dose based on her blood sugar levels.

The stroke affected her memory, judgment and language. When she was in the hospital right after the stroke, and my brother and I were with her, she asked why people kept sticking her with pins. She didn't remember that she even had diabetes, let alone that she had been managing it on her own. At that moment, my brother and I knew that that was the end of her living alone.

In the following year and a half, she recovered some memory and language, and reached somewhat of a plateau. She remembered that she had diabetes, but couldn't remember exactly how to manage it.

And then her memory started getting worse. Her neurologist started her on Aricept and Nameda, just like Alice did in the book, but they didn't seem to help much. Every time we saw the neurologist, she'd administer the ten question test, asking mom if she knew where she was, knew who the president was, knew what season it was. Mom did worse every time.

This was abnormal from a stroke recovery point of view. They did an MRI and she hadn't had another "event" (stroke). Dementia seemed to be setting in. The neurologist didn't make the diagnosis of Alzheimer's. At some point, she said, dementia is dementia, no matter what the cause.

For my mom the dementia progressed relatively quickly. In the last three months of her life she forgot how to use the bathroom. She forgot who we were. She talked about waiting for her parents (who had been dead for decades) coming to come pick her up. At the end, she slipped into a coma and died a few days later.

It was heartbreaking to watch my mom lose her memory, her faculties, and ultimately her life.

It's hard for anyone close to someone with dementia, as Still Alice illustrates so well. Lisa Genova sheds light on Alzheimer's and living with dementia, illuminating the struggle for Alice herself, as well as her family. Well done.

Several years ago, I wrote a blog post about two other books about dementia, The 36-Hour Day and Contented Dementia. You can read that post here (sorry for the copying and pasting): http://notthenewyorktimesbookreview.blogspot.com/2012/02/how-do-you-spell-alzheimers.html

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How do you spell "Alzheimer's"?

"How do you spell Alzheimer's?", one of the booksellers asked me as she was typing a query into our Info Desk computer.

"A-L-Z-H-E-I-M-E-R-S", I said. "With an apostrophe," I said, knowing how finicky our in store search is. "Are they looking for a specific book?"

"No, we just want to see if you have anything about Alzheimer's," said the woman. She and the man with her looked to be in their early 60's, graying hair, wearing jeans.

"We have a section," I said. "Let me take you over there."

I show them THE 36 HOUR DAY. "This is a really comprehensive book about dementia that talks about how it progresses, how it is for people caring for the patient as well as the patient itself. I found it really helpful when my mom had dementia."

     


"We just had to move my mom into a facility. She couldn't live on her own any more." They looked like they were still in shock.

"That's hard. Does she know who you are?"

"Yes, she knows us," the woman said. "But she forgets what she's doing. And there was once she didn't seem to know who my husband was."

I nodded. "Another book I wish I had when my mother was alive is this one." I show her CONTENTED DEMENTIA. "The author talks about kind of a new way to help people with dementia. What people usually do is try and make the people who have dementia understand what is going on in the here and now. The problem is, the people with dementia don't remember what's going on right here and right now. They remember the past. So they get agitated because they know they should be remembering what's going on here and now. In this book, the author recommends letting them be, in their mind, wherever it is they imagine they are. My dad was a doctor and when he had dementia it seemed as though he was remembering being in the hospital, which was a really good place for him.

     

"Oh, wow," she said, looking overwhelmed. "We'll take a look at these."

"I recommend both of them really highly. THE 36 HOUR DAY
gives a really good sense of what is happening and what will happen. CONTENTED DEMENTIA doesn't really deal with the physiological aspects of dementia, but provides some really great help on how to be with people with dementia."

"Thank you so much for your help," she said.

"You're welcome. Take care."

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