“You know, sweetie, Granddad has always loved you and been proud of you. And Alzheimer's disease doesn’t change that.” She nodded. “I know,” she responded. “But still, I wish there was a world without Alzheimer’s.”
By Jennifer Leigh Blackwell
We were flipping through thousands of our digital images on our computer when she spotted a photo of my father, mother, and I posing in front of a frozen lake on a Christmas trip up North several years ago.
“That’s Granddad, without his disease,”
she commented, in a matter-of-fact tone.
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As the daughter of an early-onset Alzheimer’s patient who was diagnosed in his prime at the young age of 63, I am not unaccustomed to such frank comments from my eldest daughter.
Since she was old enough to understand, I have never shied away from talking about the disease, why her grandfather acted differently on occasion, or what this disease would ultimately mean for us as a family. Because of my directness, they have never felt uncomfortable around my father, nor afraid to ask questions about changes that they may perceive in my father from visit to visit.
Yet, as often happens to me when I think about my dad and the total unfairness that there is in life, to rob a brilliant, upwardly-mobile, life-long devoted civil intelligence servant, and dedicated and loving father and friend, I allowed myself to think about what could have been.
As a former athlete himself, and someone who coached my basketball team for years, he would have reveled in my daughter’s athleticism. He would have taken an interest in her games and achievements, as well as that of my younger daughters. He would have talked to me about my job and the cases I am involved in, and enjoyed asking tough legal questions.
We would have debated the upcoming election cycle, just as we did to a more limited extent in 2008. He and my mom would have continued to be a mutually supportive and loving team. And he would have continued to travel to visit us, and the remaining places in the globe he had on his “bucket list.”
My daughter saw the sadness in my eyes and her face grew angry. “It’s not fair, mom,” she said, echoing my thoughts. “Why did he have to have this disease? Why did he have to get sick? Why couldn’t I have known a granddad without Alzheimer’s?”
I hugged her tighter as we kept looking at pictures because, of course, I didn’t have any answers. Or none that would provide any comfort.
As we continued to browse, I flagged the pictures she did have with her grandfather after his diagnosis. Pictures at Christmastime, at Easter, enjoying the summer at the cottage in Michigan, spending time together at the beach, taking hikes together, playing at the park. I remembered that a close friend and mentor of mine, whose mother has also battled Alzheimer’s for years, once gave me very valuable advice. She said that the worst thing to do, as a family member of someone with Alzheimer’s, is to think of what might have been, and that, instead, one should enjoy the person that they are, even with the disease.
As I looked at these pictures, I remembered that, in spite of the disease, my father has been incredibly caring, sensitive, thoughtful, and fun with my three daughters.
There were pictures of him holding and rocking my youngest when she was but three months old, both of them grinning for the cameras. There was a picture of him dancing to music from a greeting card with my then three-year-old. Another snapshot of him holding my smiling eight-year-old, their faces pressed tightly together.
Indeed, altogether they painted a portrait of what I have known to be true all along as my three daughters have grown the past few years: that despite the disease, he has been a patient, tender, loving, teaching grandfather, who has still been able to read them stories, take walks and vacations, and yes, shoot hoops and play soccer. Which is more than what most people, with or without Alzheimer’s, can say they have.
With that in mind, I turned again to my oldest daughter. “You know, sweetie, Granddad has always loved you and been proud of you. And the disease doesn’t change that.” She nodded. “I know,” she responded. “But still, I wish there was a world without Alzheimer’s.”
We all do. But until we can achieve that, it’s good to remember what we still have.
Jennifer Blackwell is a federal prosecutor and mother of three. She is the daughter of Bob and Carol Blackwell, whose story has been profiled in the USA Today in a series of articles. Her father was diagnosed with early onset Alzheimer's disease in 2006. She is originally from Northern Virginia, but now resides in Southeastern Michigan
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