Grandma, My Girls and Alzheimer’s
“Why does Grandma forget everything?” my daughter, Carly, asked five years ago—back when my mom was in the early stage of Alzheimer’s and still able to speak, feed herself, and put on a good act that everything was fine, despite all the challenges she faced in daily living.
Looking back now, it seems like a lifetime ago.
Carly, my constantly curious four-year-old had a knack for noticing anything and everything. She had clearly observed that her beloved grandmother asked the same questions again and again. To Carly, it made no sense; to me—it was the new normal.
“What did you do in school today?” Mom would ask. Carly would share the details of the latest art project and playground fun in her preschool class. Then without fail, five minutes later Mom would repeat the same question.
My other daughters also started to notice changes in their grandma. Whenever we’d visit, Emma, my six-year old, had the habit of going straight for the cookie jar located on Mom’s kitchen counter.
One day, she took a bite of Mom’s chocolate chip cookies and immediately knew that something was wrong.
“Grandma, this tastes different,” she said with a bewildered look on her face. I looked at the beige, rock-like cookies, sampled a bite and determined that once again, Mom had left out a crucial ingredient – sugar, butter, or eggs.
For Emma, it was just an odd-tasting cookie. But to me, the cookie was a symbol. It represented all that had changed.
My amazing mom, Bobbie Lonergan, who had served up dinner for 13 children for decades, could no longer follow one of her trademark recipes. Alzheimer’s had now claimed one of Mom’s lifelong talents—cooking and baking.
For a while I tried to cover up Mom’s struggles. I told myself that I was just trying to protect my daughters. But the truth was—I was trying to protect myself.
I got good at rationalizing. If my three daughters still thought that everything was mostly fine with their grandma, perhaps it wasn’t that bad?
But if I crossed that line and told them the honest truth—Grandma had Alzheimer’s disease, that there was no cure and that she’d only get worse—there’d be no turning back. Wouldn’t I be shattering their world? Or would it be shattering mine?
Some days I just wanted to keep up the façade and pretend that my mom, a woman who prided herself on her fierce independence, wasn’t slowly slipping away before my eyes.
But in time, Mom’s symptoms became too glaring to overlook. And with my daughters—the questions kept coming.
One afternoon, Carly’s curious mind was in full throttle. “Why can’t she remember anything I tell her? Doesn’t she hear what I say?” she asked.
“She does the same thing to me,” Emma added. Morgan, my two-year old, was oblivious to all of it.
I hesitated. This was a teachable moment served up on a silver platter. As Dr. Phil would say, “It was time to get real” about Alzheimer’s.
I looked into their innocent eyes and explained that when you get older, you can have problems with your body. “Sometimes your legs don’t work and you need to use a wheelchair, and sometimes your ears don’t work so well and you need a hearing aid, and sometimes you have a memory problem and you forget things–that’s what’s happening with Grandma,” I said.
“But is she going to be okay? Carly murmured.
I paused. This was a tricky answer. “Yes, she’s going to be okay. But she’s going to need more help over time. And that’s okay because she spent her life helping all of us,” I said.
“Hmm…okay. Can we go to the park?” Carly asked. She had accepted my simple explanation and had moved on.
It struck me as a shining example of how easily kids accept things. And it was such a sharp contrast to how adults often struggle to accept a loved one’s Alzheimer’s disease; instead, they choose to stay in denial and fear.
With this basic explanation, my daughters began to understand that Grandma needed extra help. At their young ages, I didn’t overwhelm them with the complexities of Alzheimer’s.
In their eyes, Mom hadn’t changed too much. She was still their tender-hearted grandma who planted hugs and kisses on them each time they visited. This was a blessing within the scope of the disease.
Today, my daughters know all the details about Alzheimer’s. When I was writing my memoir, Life Lessons from a Baker’s Dozen, they’d watch me type away on my computer and ask, “Why are you writing that?”
From day one, I explained that the book was a tribute to Grandma’s amazing life, her wisdom, and to raise awareness for Alzheimer’s. I shared the heartbreaking details with them—there’s no cure and life will only become more difficult for her.
But most importantly, I reassured them that the love they shared would always remain.
Carly listened intently and smiled, “I hope they find a cure soon, so it can help Grandma.”
I smiled back, but knew the painful truth. Mom has progressed to advanced-stage Alzheimer’s—it’s too late for her. Still, I accept where she is and so do my children.
Each time we visit, we don’t know what to expect. Sometimes Mom is very tired. Other times, she’s excited to see us and shares a joyful smile.
Her beautiful blue eyes brighten and we tenderly hold hands—three generations connected forever in love—a connection that Alzheimer’s can never erase.
Have you had to talk to kids about Alzheimer’s? How did it go? What worked? What didn’t? Feel free to post in comments below.
Kerry Lonergan Luksic is a writer, an Alzheimer’s advocate, and author of the memoir, Life Lessons from a Baker’s Dozen: 1 Mother, 13 Children, and their Journey to Peace with Alzheimer’s. Ten-percent of royalties earned will be donated to Alzheimer’s support and research programs. Some of her other Alzheimer’s advocacy work has been published in The Philadelphia Inquirer, The Star Ledger, The Main Line Times, WHYY NewsWorks, and Parents Express. She lives with her husband and three daughters outside of Philadelphia. Visit www.kerryluksic.com or email firstname.lastname@example.org.