Walk with me, and remember: Mom, Alice, and Alzheimer's

This Friday, October 8, it will be eleven years since my mom, Mary Ann, passed away. A resident of St. Petersburg, Florida for 22 years, she was 69 years old at the time of her death. She was survived by her husband, two adult daughters, and one teenage grandson. We're left to remember.

But our family had lost her well before that. For over seven years, she had been living in a nursing home, incapacitated by early-onset Alzheimer's disease. We had begun to see changes in her health, demeanor, and personality when she was in her late 50's - sudden weight loss, strange sleeping habits, difficulty in speaking, disengagement with her family and surroundings, paranoia and hallucinations - but her long-standing fear of doctors and medications caused her to resist our efforts to get her to seek help. My sister and I had both moved away, and distance and the demands of our own lives limited what we could do about this, and my dad was uninformed and afraid to force the issue. By the time she reached the point where something had to be done, there wasn't a realistic alternative to round-the-clock care for her, and we all next several years were spent in a form of limbo. By the time she died, much of our grieving had been long underway; Alzheimer's doesn't take the body quickly, but it does take the intangibles that make a person unique and special.

We've missed Mom for a very long time now. We miss having her there to listen to and support us. We miss being able to make her laugh. We miss the qualities that made her who she was.

We also miss her because she's missed so much of our lives. I'm glad that before she got sick, she did get to spend a lot of time with my then-young son - but she doesn't know that at 26, he seems to have made a pretty successful emergence into adulthood. She was there for the beginning of my first marriage, but I'm actually not sorry she missed all the drama and trauma of the ending, although I wish she were able to know my second husband - I know he'd be able to make her laugh a lot. My sister has married and become mother to two wonderful boys - the first born just a few months after his grandmother died - and it's been hard for her that Mom hasn't been here to share in that.

As long as I've had this blog, I've posted a remembrance somewhere near the anniversary of Mom's death. Last year, I did some reading in addition to writing. Lisa Genova's novel Still Alice is the vivid and moving story of Alice Howland, an early-onset Alzheimer's patient; told from Alice's own perspective, it's both deeply affecting and highly informative, and a genuine must-read.

What I remember about the onset and progress of my mom's condition is a lot like what Alice is going through as the
novel opens. 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 Still Alice, does 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 had held off on 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 I still think about it nearly a year later. 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 a few 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.

Alzheimer's became part of my family's life almost twenty years ago. It was never invited - it's an unwelcome visitor that doesn't leave until it gets what it came for. In our case, that was my mother.

The return of that visitor is one of my greatest fears, and I want to do whatever I can to keep it away.

There's one more thing I do to remember my mom every October. In addition to the reading and the blogging, I will once again be joining my sister, her children, our husbands, and my stepchildren (none of whom ever knew our mother) in the Alzheimer's Memory Walk to raise money for and awareness of this still-incurable, life-altering disease.

The Thousand Oaks (CA) Memory Walk will take place on Saturday, October 23 at Conejo Creek Park (behind the Thousand Oaks Public Library), beginning at 9 AM. The 5K route goes through the park and some pleasant residential neighborhoods nearby. If you're in the area - Ventura County, northern Los Angeles County, southern Central Coast - I'm inviting you to join our team and walk with us! If you can't do that, I hope you'll consider helping me with my fundraising efforts. Funds raised are used to encourage Alzheimer's research and support Alzheimer's patients and their caregivers. Currently more than 5 million Americans have Alzheimer's, and 78 million baby boomers are at risk – unless we find a way to change the course of this disease.

I remember my mother every day, and I can't forget what took her away from us too soon.