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Alzheimer’s from the inside out

I finally read “Still Alice” by Lisa Genova. The book came out over five years ago and has been sitting on my must-read list for almost that long. After recently hearing about the upcoming movie adaptation starring Julianne Moore, one of my favorite actresses, I put aside my other reading selections and immediately dived in to the novel.

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“Still Alice” is unique because it attempts to capture the Alzheimer’s experience from a character with early-onset Alzheimer’s as she experiences the early to middle stages of the disease. This is Genova’s first novel, but as a neuroscientist, she has another important angle to add to the book.

While the main character, Alice Howland, is a respected Harvard professor, I still connected with her and could imagine my reactions being very similar to hers if I should ever be cursed with this dreaded disease. Genova does a great job of showing how those in the earlier stages of Alzheimer’s work so hard to cover up their symptoms and appear “normal.” Then one day, even their best efforts are not enough. Genova also illustrates how much fear and dread those with Alzheimer’s experience, most of it retained in an internal dialogue that their loved ones may be completely unaware exists. Some readers may be turned off by how the husband is presented in the book, but I think his response to his wife’s disease is pretty realistic, if unfortunate.

The story immediately draws you in and the main character is well-developed. She is a witty, sensitive intellectual which makes her mental decline all the more heartbreaking.

I highly recommend the book if you haven’t read it yet. If you have, let me know what you thought about the story.

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Trying to see past the Alzheimer’s

I was reading a fascinating article today about a program at Harvard that connects college students with those suffering from Alzheimer’s in nursing homes. The students visit their “buddy” each week, and the unique part of the program is that it tries to connect resident and student by interest. So one student spends time talking about science with a resident who loves the same subject. It sounds like a neat program. The student that founded the program said, “When you have a family member with dementia, you know who they were, so you really see the decline and what’s not there. That’s one of the cool things about this program. We get to see what is still there.”

This is one image of my father I like to envision when I think of him now, instead of how he looked when he was dying.

This is so true. It’s so difficult as a family caregiver to ignore the pieces of your loved one that become lost to Alzheimer’s, instead of focusing on the core of the person who still remains. I remember different nurses at different hospitals commenting on my dad, “I’d love to see photos of your dad when he was younger. You can tell he was a handsome guy.” When I first heard this, I was shocked. All I could see was the pitiful, emaciated, confused man curled up in the hospital bed. But the nurses had the wisdom to see beyond the present, and imagine the past of a stranger they were not familiar with. They could peel off that layer of dementia and sickness and see who was really underneath. It’s a gift that often eludes those of us that are family members.

Of course, it’s unlikely that a family member can ever be as objective as a stranger can be in this situation. We should not feel guilty for acknowledging the loss and the damage that this disease causes. But it is worth taking a moment to step back and try to see our afflicted loved ones through the eyes of a kind stranger, instead of through the warped lens of dementia.

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