Book by Kerry Luksic designed to be both survival guide and memoir
Bobbie Lonergan has 13 children and 33 grandchildren. Her family considers the 80-year-old matriarch the glue that held the pieces together after her husband died of cancer of the esophagus while five of those children were still in college or high school.
Lonergan is also a patient with Alzheimer’s disease, unable to say the names any of those beloved offspring – unable to navigate a world that totally bewilders her.
Now her daughter, Rutgers alumna Kerry Lonergan Luksic, has written a combination memoir and survivor’s guide, incorporating coming-of-age anecdotes with wisdom on grappling with the illness that has progressively robbed her mother of her ability to function.
“At the end of the day, I didn’t want this to be a book solely about Alzheimer’s, because that’s not who my mom is,” says Luksic, a native of Middletown who graduated from the Rutgers School of Business-Newark and New Brunswick in 1993 with a degree in marketing. “This book is about celebrating my mother’s entire life. I wanted the reader to be able to connect with how my mother was before the disease struck.”
Life’s Lessons from a Baker’s Dozen: 1 Mother, 13 Children, and their Journey to Peace with Alzheimer’s offers up a portrait of a woman reigning over a spirited mixed Irish-Catholic brood of five boys and eight girls with humor, patience, optimism, courage and faith – above all, faith.
“For Mom, life was about making the most out of every day that God gave you,” Luksic says.
A freelance writer and author, Luksic was pregnant with her third daughter when Bobbie Lonergan was diagnosed with Alzheimer’s almost eight years ago. The signs were subtle, but impossible to ignore.
“She was still very much on the go, still going to church every day, still packing food for the local food bank. On the surface, it all looked so normal,” Luksic recalls. But the woman who routinely planned and cooked meals for 15 people was forgetting words, forgetting appointments, repeating herself in conversation.
The things she loved to do – sewing, cooking, baking, finishing The New York Times crossword puzzle every day – became formidable challenges.
When the diagnosis came, Luksic threw herself into research mode, educating herself on all facets of the disease with which some 5.4 million Americans live, and which touches an additional 15 million family members or loved ones who serve as their caretakers.
She learned that while the National Institutes of Health allocates $6 billion for cancer research and $3 billion to studying HIV-AIDS, the total number of dollars set aside to study Alzheimer’s until this year was roughly $450 million.
This for a disease that is expected to strike 16 million Americans by 2030 and 30 million by 2050.
As Lonergan’s condition worsens – today, with her Alzheimer’s described as advanced-stage, she is living at home with a full-time aide – the Rutgers graduate has transformed her “long, tearful, slow-moving goodbye,” into positive action by serving as an advocate for research and support for patients.
In 2009, Luksic and her older sister Leslie ran the Philadelphia Marathon as part of the Alzheimer’s Association Delaware Valley Chapter’s inaugural “Run to Remember” fundraising team, and she has pledged a 10th of the royalties from her book to Alzheimer’s-related organizations.
During the course of training for the run, Luksic also geared herself up for one of the most difficult conversations a parent can have with her children: telling three little girls that their beloved grandmother was never going to get better.
“For several years, we had been talking about Grandma’s memory problems, but I had avoided giving them the technical explanation of Alzheimer’s disease and its devastating consequences,” the Chester County resident writes in her book. “I was afraid of shattering the strong, resilient image of my mother.”
She turned to an analogy that children of the 21st century could easily identify with: comparing her mother’s brain to a supercomputer whose signals were slowly shutting off. “My daughters had spent enough time on our home computer to deal with the frustration of when it would crash and suddenly stop working,” writes Luksic, now a resident of Malvern, Pa.
Moreover, Emma, Carly and Morgan had shared enough family time with Lonergan that the news came as no shock to them. Luksic made sure to emphasize that the things they cherish about Grandma – her hugs, her delight in their company and, most of all, her unconditional love – would remain constant.
Today, she encourages others in the same situation to be forthright when it comes to sharing information with children, recognizing that youngsters are perceptive and will take their cues from the adults around them.
“Be honest and keep it simple. If you look like you’re afraid and scared to tell them, they’re going to be afraid and scared. If you say these are the things that won’t change much, such as walks in the park with Grandma, Thanksgiving dinner together, and if you take the time to reassure them, they’ll be fine.”
Signed copies of Kerry Luksic’s book are available on her website. The e-book edition is available on Amazon.com.