07 January, 2015

Alice and Alzheimer's

For my bookclub this month we are reading Still Alice. For those unfamiliar with the plot, Alice, a thriving and vibrant college professor, is diagnosed with early onset Alzheimer's at 50.

The book is about Alice and Alzheimer's. Alice battles to retain what is slowly slipping away. Her family struggles to adjust. Life changes in an instant.

I was hesitant to read this book mainly because my grandmother passed away after a long batter with Alzheimer's disease. I can remember, as a little girl, the first moments when words began to fail her. I can remember (like Alice experiences in the book) my grandmother unable to finish a sentence. I remember my grandfather trying to help her, and my grandmother’s frustration over what she knew she should be able to remember.

It wasn’t the loss of motor function for grandmother (though that did come towards the end), the loss of control over one’s bodily fluids, the loss of ability to dress oneself or do ones hair that really affected me. By the time my grandmother died when I was 12, what I truly missed was her company.

I missed my friend. My grandmother was the one that taught me how to bake. Sunday afternoons we would be in her kitchen baking cookies. We would play games together. I have been writing stories since I was three. And though it was gibberish on the page (I didn’t know how to spell), my grandmother would let me curl up in her lap and read it to her.

I spent a lot of time with my grandmother. My parents both worked and my grandparents lived close. Watching my grandmother fade into herself was like losing my best friend.

I remember the blank look in her eyes as she got towards the end. The face of the man she’d been married to for 50+ years now a stranger. I remember the hallucinations. Grandma on the front lawn, baking pan in hand, convinced people were coming to take our land.  

It was a bittersweet moment when she passed away. But she was not in pain anymore. She is in heaven, renewed and alive, transformed to be as God made her.

But still, my grandmother was gone. I would never hold her hand again, never hear her sing. I have always felt like I only got to know one side of my grandmother. That if she had been around as I got older, perhaps we could have related to each other in an entirely different way. Maybe she could have taught me that being a woman of God means it is okay to struggle, to defend yourself, to not be dainty and perfect and something out of a Jane Austin novel.

Perhaps she could have been there as I struggled in high school or after coming home from Africa. Perhaps she could have pushed me in my writing. Perhaps my world wouldn’t have shattered again at seventeen when we left my childhood home. Perhaps –perhaps.

The thing with Alzheimer's, and I would imagine any neurological disease, is that the person becomes trapped in their body. It’s a prison. And for those on the outside it is harrowing and tragic.

Another book I would like to read is You’re Not You, which focuses on one woman’s struggle with ALS.

It is good that these diseases are getting more attention. As this story on the movie version of Still Alice points out, funding for research on Alzheimer's is incredibly low.

Maybe with more authors like Genova and Wildgen willing to write about these diseases honestly and with care, we can get more done so no other family has to watch someone they love fade.

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© Amanda Lunday