Please welcome today’s guest writer, Madison Tissue. Madison graduated from Calvin College in 2019 with a degree in biology. She is currently living and working in Pittsburgh, PA and spends her free time being outside, watching movies, applying to medical schools, and getting reacquainted with her hometown.
My grandmother has Alzheimer’s disease.
It’s not something I tell a lot of people or something I try to think about often. Frankly, it makes me too sad sometimes to even acknowledge it at all. My grandmother is slowly forgetting. Everything.
I struggle finding a way to imagine my grandmother when I’m not with her. As a medically-minded person, it’s easy for me to think of her disease and what it’s doing to her brain. As a granddaughter, it’s easier for me to focus on the way she used to be.
In 2016, I attended a January Series lecture about dementia and the church in which the speaker implored us to stop saying things like “I miss what he used to do” and “I’ll remember the person she used to be.” That “used to” language is dangerous. It makes us forget the things he does and the person she is right now.
That perspective has stuck with me. It’s the kind of message that engrains itself in your personhood and flickers through your mind often. Sometimes it comes to me when I’m with my grandmother or sometimes when I’m walking the aisles of the grocery store. I never know when I’ll think of that message. I think that’s how I know it’s important.
Nostalgia. I’ve been pondering that word a lot lately. Maybe it’s because I’ve moved back to my childhood bedroom. So much of who I used to be is covering the walls, filling up the cracks between my chapter books, seeping out of the fuzzy carpet. When I first moved all my boxes in, I was inundated with an earlier version of myself. At first, it was sweet, like revisiting an old friend. But then it became a bit repulsive. I didn’t want to be that old self anymore. Almost immediately, I was dreaming of ways to store childhood things in the attic. I meticulously planned to keep my room reflective only of my new, adult self.
I found many treasures in the four days it took me to sift through the room. Special notes from a fourth-grade teacher. Photo booth pictures with my best friends in middle school. Books with familiar dog-eared pages and underlines. Birthday cards with my grandmother’s handwriting saying “Love Grammy.”
Tears come so easily as I remember when she could talk to me about my schooling, when she came to my theater productions, when we sat on her porch swing in the summers eating ice cream. Times when she could remember. They are painful and sweet memories. And I don’t want to forget them.
But I can’t see my grandmother, my Grammy, for only who she used to be. Just like I desperately want to store my past self away to make room for the better, present version, I can’t freeze my Grammy to who she was seven years ago. She’s changed, too—just in a different way.
Refusing to recognize her change is not only unfair to my own processing of her condition, but it’s also deeply unfair to her and her life. She is still here with me. She is different, but she is still my Grammy, here in the present day.
When Professor John Swinton finished his talk that snowy January afternoon, he left me with much to think about. But what made the deepest imprint on my life was his call to us to see our brothers and sisters with dementia and recognize their present selves first. He told us to look them deep in the eyes, to grab their wrinkled hands in ours, and to speak the following words slowly and softly: “I am glad you are here, and I am happy you exist.”
Speaking about people with Alzheimer’s disease or other types of dementia in only the safe, nostalgic sense of who they used to be makes it seem as though they’ve already left us—that their presence has left this world. That language allows solely a retrospective view. It’s safe to remember my Grammy only as the person she was when we had a closer relationship. But it’s not right.
She may be farther away right now, but we still have a close relationship. When she looks at me, she knows she loves me. And I’m pretty sure she knows I love her.
There’s so much I want to talk to her about. I want to share with her my fears about applying to medical school, my passion to go into medicine, my admiration for her life as a nurse. But that’s too difficult—and unnecessary.
All that’s needed now is for me to bask in the present with her.
“I am so glad you are here, and I am happy you exist, Grammy.”