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Alzheimer’s and Families: A Malvern Woman Faces Her Mother’s Disease

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A few months ago, Pat Summitt, much-decorated head coach of the University of Tennessee women’s basketball team, announced that she had Alzheimer’s-type early-onset dementia. Her eight national championship victories and 1,071 wins—the most for any basketball coach, men’s or women’s, at any four-year college or university—have made her a legend. Now, at just 59 years old, Summitt is living proof that Alzheimer’s isn’t solely an elderly person’s disease. No matter what a person’s age, the diagnosis is devastating.

Kerry Luksic at home in Malvern. (Photo by Jared Castaldi)Summitt joins the ranks of about 5 million Americans living with Alzheimer’s. Kerry Luksic’s mom, Bobbie Lonergan, is also among the millions being recognized in November as part of National Alzheimer’s Disease Awareness Month. She was diagnosed six years ago at 72.

November is also National Family Caregivers Month. And while Malvern’s Luksic doesn’t care for her mother full-time, she sympathizes with the 10 million Americans looking after someone with Alzheimer’s. “Don’t pity me; pray for me,” Luksic recalls Summitt saying in an interview, which struck an emotional chord with her. “It’s something my mom would definitely say, too. Her faith is what has kept her strong her entire life.”
 

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Four years into her mother’s diagnosis, Luksic decided to share her family’s story, resulting in the new book Life Lessons From a Baker’s Dozen: 1 Mother, 13 Children, and Their Journey to Peace with Alzheimer’s. Growing up No. 12 of 13 in a traditional Irish Catholic family, Luksic has plenty of stories to tell about her life with five brothers and seven sisters. “My siblings always joked that someone should’ve been writing all these stories down,” she says.

Two years ago, when she and her sister were participating in the Run to Remember Marathon, Luksic first had the idea that maybe her mishmash of stories would make a fitting tribute to her mother. “My mom is an extraordinary person who led an extraordinary life,” says Luksic.

For Luksic, the book’s message is clear. “I wanted to convey the way my mom raised me,” she says. “Her lifelong example of being strong, of having faith, and of being optimistic and making the most out of every situation has stayed with me and my brothers and sisters. [It’s] helped us in dealing with her disease.”

At first, the changes Kerry Luksic noticed in her mom were small. Bobbie Lonergan became forgetful. She’d repeat herself in conversation, and she started misplacing things. At the time, Luksic still lived near her mother in southern New Jersey, and like so many others, she was unsure whether she was witnessing the typical signs of aging or something more. Instinct led her to believe it was the latter.
 

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Even so, Alzheimer’s just didn’t seem possible. After raising 13 children, the grandmother of 32 kept busy volunteering for her church and playing bridge. A math major in college, Lonergan’s daily routine included sewing, baking and crossword puzzles. “When we finally got the diagnosis, everyone said the same thing: ‘Not your mother,’” says Luksic.

The official diagnosis was probable Alzheimer’s disease. (The only way to get a conclusive diagnosis is through an autopsy.) Alzheimer’s is a fatal, progressive disease that manifests differently among patients. The Delaware Valley chapter of the Alzheimer’s Association reports that there are 294,000 people living with the disease in our region. Every 69 seconds, someone in the United States develops the disease. By 2050, as many as 16 million Americans will have it. It’s the sixth leading cause of death in the country.

“The statistics keep growing,” says Claire Day, vice president of constituent services for the Delaware Valley chapter. “There’s no magic book that families can open to get all the answers.”

Which is why Day considers books like Luksic’s so valuable. “Families living with the disease can relate to Kerry’s experience,” she says.
 

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In the beginning, Luksic spent countless hours online and reading books, but she found no concrete answers. What would her mother’s quality of life be a year from now—five years from now? How long would she be able to live by herself? How would she react once her mother didn’t recognize who she was? Only time would tell, and the fear of the unknown was often unbearable. “Alzheimer’s is a family disease,” says Luksic, who has three young daughters of her own. “It affects every family member and friend.” 

Luksic’s parents ran a tight ship at home, and expectations were high for the kids. “The things that mattered most were report cards and what time we were going to Mass on Sunday,” she laughs.

It was a typical childhood for Luksic until she turned 17. That year, her father died of cancer. “It was devastating,” she says. “My father worked so hard all those years providing for his family, and he got diagnosed and died within six months.”

Her mother’s resilience was evident throughout the tragedy. “She didn’t crumble—at least not in front of us,” says Luksic. “She knew life had to go on.”
 

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Lonergan is now in the advanced stages of Alzheimer’s. And for now, Luksic is grateful for the small things. Though her mother can’t say her name, her face still brightens when Luksic and her daughters come to visit. “Her expression shows me that she still remembers we have a special relationship,” says Luksic.

She expands on that thought in the epilogue of her book:

With the progression of Mom’s illness, pieces of her continue to fade away, but those missing pieces live on in all 13 of us. No matter what lies ahead, Mom will remain forever as the loving heart and soul of our entire family. Alzheimer’s cannot take that away.

Life Lessons From a Baker’s Dozen: 1 Mother, 13 Children, and Their Journey to Peace with Alzheimer’s is available at Reader’s Forum in Wayne and Chester County Book & Music Company in West Chester. For more, visit kerryluksic.com.
 

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