32 met at the home of Jane Freer to discuss this month’s selection, Still Alice, a debut novel by Lisa Genova, who holds a Ph.D in neuroscience from Harvard and is the online columnist for the National Alzheimer’s Association. March 1st was a significant day on several levels including the start of the rebuilding process of MN’s Alabama beach house, the return of tee markers and flags to the Pinnacle golf course, and last, but not least, Leslie Mullins’ birthday! We also offered our condolences to Madelyn Chubb on the loss of her sister, and gave the floor to Janet Noblitt, who thanked everyone for their love and support during her daughter-in-law’s battle with cancer and for our generosity in contributing to her granddaughter’s college scholarship fund. We welcomed new members, Janet Erwin and Karen Fernald and were delighted to see Linda Hoff, Kathy Mueller, Donna Walter, Judy Lee, and Ann Hays back at Bookers…you have been missed!
We are grateful to Jane Freer for suggesting an honor table paying tribute to loved ones who have suffered from Alzheimer’s. Jane’s grandmother’s white crocheted tablecloth covered with photos, journals, and articles told the story of adoration blended with heartbreak. Camellias, the petals reflecting the spirit of a lady…the stem, the strength of a man, were scattered among the faces alongside a vase of white roses, the sign of honor and spiritual love. The morning got off to an emotional start as we remembered:
Cherry’s father WILLIAM MAURICE HOLLON
Jane’s mother RUTH CLINE
MN’s mother AGNES SPAFFORD
Bonnie’s father GEORGE PATON
Janet Noblitt’s father OBIE HERL
Marlene’s father BILLY HIGDON
Barbara Creach’s mother LUCILLE BARRETT
Pam Davis’ mother MILDRED WALTER
Donna Walter’s mother-in-law MILDRED WALTER
Melanie Prebis’ mother-in-law AGNES PREBIS
PWC Member BJ VOLLMER
Leslie Mullins' close friend MARGIT NILSSEN
Daryl Daniels' close friend DR. DAVID HILDEBRAND
This is one of those selections that met the criteria for a Bookers’ book, not for the literary value, but for the story it tells and its’ informational message that encourages a proactive approach to early on-set Alzheimer’s. Our thanks to Kim Hand for convincing us we must address this issue and for taking on the challenge of reviewing the book. Great job of summarizing the story, providing the documentation for testing and knowing the signs of the disease (copies attached.) Additional information is available on the web site: http://www.alz.org/ including seventeen slides detailing what the brain is doing during the various stages of this disease.
Although a work of fiction, the author uses her expertise to accurately write of the “white emptiness” created by Alzheimer’s. Fifty-year old Dr. Alice Howland is a cognitive psychology professor at Harvard, a world-renowned expert in linguistics whose job it was to “understand the mind, to know the mechanisms driving human behavior and language, emotion and appetite.” She is the wife of a cancer cell biologist, and the mother of three grown children and through her voice, the symptoms, treatments, consequences, frustrations, and rapid decline over a two-year period are painstakingly vivid from her point of view. Genova not only chronicles Alice’s experiences, but also shows how differently the family reacts and handles the diagnosis.
In the beginning, Alice made excuses for her behavior…multitasking, being too busy, age, and menopause, but as the memory disturbances became more frequent, she began the diagnostic process. Her MRI showed no abnormalities, no cerebral vascular disease, no evidence of stroke, no hydrocephalus or masses – her blood work and lumbar puncture were negative, no HIV, no cancer, vitamin deficiency, mitochondrial disease or other rare conditions – and her recent memory impairment was out of proportion with her age. She had early on-set Alzheimer’s disease. It has a stronger genetic linkage and manifests itself much earlier and her children have a 50% chance of inheriting the mutation, which has a 100% chance of causing the disease.
Most of us were critical of how Alice’s husband, John, handled the news, but as quick we were to judge, we were reminded that he too “lost his future.” Perhaps the only way he could deal with that was to throw himself into his work and obsession on finding an acceptable treatment and/or cure for “his Alice’s Alzheimer’s.” A pre-symptomatic test is available for early on-set…if you were one of the children, would you want to know? The eldest daughter, Anna, and her husband were trying to have a child…she tested positive. The middle child, Tom, was negative, and the youngest, Lydia, opted not to know. Alice said she would rather have cancer than this disease because those with cancer could expect community support whereas she “expected to be an outcast…even the well-intentioned and educated tended to keep a fearful distance from the mentally ill.” Alice wanted to “live to hold her grandbaby, to see Lydia act in something she was proud of, to see Tom fall in love, to have one more sabbatical year with John, to read every book she could before she could no longer read…to have more sunny seventy-degree days and ice cream cones, and when the burden of the disease exceeded the pleasure of that ice cream, she wanted to die.”
The group shared a part of their lives with us. We walked in each other’s shoes with both heartache and humor and always with love and respect for the human spirit. We learned about patience, about placing blame and judging too quickly, about regretting not recognizing the frustrations that ruled the simplest tasks of their daily lives and sorrow for not dealing with the situation with more empathy. This novel could be re-titled, Still William, Still Ruth, Still Agnes, Still George, Still Obie, Still Billy, Still Lucille, Still Mildred, Still Agnes, Still BJ, Still Margit, or Still David as each would most likely echo Alice’s message as she addressed the Dementia Care Conference:
“We are not utterly incompetent, we are not without language or opinions, yet we are not competent enough to be trusted with any of the demands of our former lives – we are neither here or there – like some crazy Dr. Seuss character in a bizarre land – it is a very lonely and frustrating place to be. I’m losing my yesterdays – I might guess a few things…I’m an excellent guesser… but I have no control over which memories I keep and which ones I lose. I fear tomorrow…I am a wife, a mother, a friend, soon to be grandmother…I still feel, understand and am worthy of love and joy in those relationships, and am still an active part of society although my brain no longer works. I use my ears for unconditional listening, my shoulders for crying on, my arms for hugging others with dementia. I am not someone dying; I am someone living with Alzheimer’s. Don’t write us off. Look directly in the eye, talk directly to us, don’t panic or take it personally if we make mistakes, misplace things, forget your names. Empower us, not limit us…work with us, help us develop tools to function around our memory loss, language, and cognition. If my yesterdays are disappearing and my tomorrows are uncertain, what do I live for…each day, each moment.”
In the lighter moments we are hear Cherry’s Dad telling her to “Dance to Life.” Bonnie’s instructing her to “Buy the boys in the band a drink.” We are told of Barbara’s Mom eating the “panhandle” of a Texas Independence Day cake, Pam’s announcing she was having her period, and MN’s Mom stating her memory was “just fine, but her husband’s was horrible.” We know that everyone traveled a similar road but no one lacked the tender care that accompanied the long journey. They were loved and on some level, they knew it.
Recommended Reading List:
We always embrace suggestions for extra reading. Lee Durso shared Labor Day by Joyce Maynard. It is written through the eyes of a 13-year old boy living with his long-divorced mother and deals with the range of emotions and circumstances that go along with adolescence. MN & I both read it and liked it…very interesting story.
We love it when our men care about books enough to recommend their favorites as John Magee did. He shared his passion for historical novels by suggesting the Aubrey/Maturin series of naval adventure novels about an English sea captain in the Royal Navy and a physician who sails with him during the Napoleonic wars. The author, Patrick O’Brian, has been compared to Jane Austen and Homer (pretty good company) and this series includes twenty novels listed in order as follows and are available in paperback at Half Price Books among other places.
Master and Commander
The Mauritius Command
The Fortune of War
The Surgeon's Mate
The Ionian Mission
The Far Side of the World
The Reverse of the Medal
The Letter of Marque
The Thirteen Gun Salute
The Nutmeg of Consolation
The Wine-dark Sea
The Yellow Admiral
The Hundred Days
Blue at the Mizzen
Bonnie mentioned The Invisible Wall: The Mystery of the Germans and the Jews by Michael Blumenthal, which Aulsine’s other book club is reading, as a possible choice for anyone wanting to hear the story from another point of view.
On the business side:
Leslie read an update on movie version of Water for Elephants scheduled for release on April 15th starring Reese Witherspoon and Hal Holbrook.
COLOR CODING SYSTEM:
WHITE: Light read
PINK: Moderately challenging
April 12th: Room by Emma Donoghue
Recommended by MN & JoDee
Home of MN Stanky.
Reviewers: MN & JoDee
May 10th: 4th annual Wine and Cheese Evening Meeting
WHITE or RED or PINK (wine, that is…your choice)
1st annual “Book Share & Chat”
6:00 PM @ the home of Melanie Prebis
Pick one of your favorite books; give a brief synopsis
and offer to share your copy
Bonnie Magee, food czar. Please contact her directly to sign up
to bring something.
June 14th: Summer meeting added
July/August: Summer Break
Summer Read TBA
September 13th: Bookers resumes
We assume our loved ones will remain indelible canvases protected within the layers of our memories. Sadly, there might be a time when we stare into the hollow eyes of the person who gave us life and we must face the reality that they are seeing a stranger with a kind face…nothing more. Cherish your time together.