It’s a peculiar twist of fate when my Japanese student effortlessly retrieves the elusive word I’m struggling to teach him in English, or when my own 6-year-old finishes my sentences more eloquently than I can. As I approach 50, I can’t help but Google “menopause symptoms,” feeling a small sense of relief when I find memory issues mentioned. Yet, that relief is fleeting; the shadow of Alzheimer’s looms ominously.
My mother is currently battling dementia, likely due to Alzheimer’s, and it’s a struggle that affects all of us who care for her. The vibrant matriarch we once knew is quickly becoming a distant memory, replaced by a frail figure who often repeats herself and suffers from anxiety that can only be calmed momentarily with explanations she will forget almost immediately. Her once specific vocabulary has been replaced with vague descriptors—cream cheese is now just “white stuff,” and a colander is referred to as “the thing with holes.” Even her cherished symbol of faith has been reduced to “the T-shaped thing.”
Time has become a blurred concept for her. Events from just months ago feel like they belong to another lifetime. She can sometimes name a few family members but struggles with consistency; it’s unclear if she has merely forgotten their names or if she no longer remembers them at all.
As I witness this decline in my mother, I’m transported back to my junior high days when my grandmother moved in with us after it was deemed unsafe for her to live alone. Back then, I was oblivious to the heart-wrenching reality of losing someone’s mental faculties. My 13-year-old self thought it was amusing that Grandma would repeat embarrassing stories or ask the same silly questions. I didn’t know her before her move, so there was no visible change for me to grasp.
I recall the evening my father, a stoic man of few words, approached me before Grandma’s arrival. “She forgets things,” he cautioned, “and I don’t want anyone to make fun of her.” Those words stuck with me; they were a rare glimpse into my father’s vulnerability, and in that moment, my love for him deepened beyond mere obligation.
From my perspective, having Grandma live with us wasn’t a burden. She was physically fine, her humor brought joy, and her presence didn’t disrupt our lives. But everything changed one fateful night when she took a wrong turn and fell down the stairs, breaking her hip. That marked the beginning of a painful decline.
I vividly remember accompanying my father to the hospital, trying to keep up with his long strides. After a long day at work, he would tenderly visit his ailing mother, who desperately pleaded to go home, promising, “I’ll be good!” It was heart-wrenching to watch him explain her situation repeatedly, all while he pulled his hair out in frustration as she lashed out at the nursing staff. Yet, he remained gentle and kind.
I decided to visit Grandma alone one day after school. It was a big step for me, but I wanted to connect. When a nurse asked, “Who do you have visiting you today, Gertrude?” and Grandma replied that she didn’t know me, my heart sank. I trudged home feeling deflated, a stark contrast to my earlier determination.
These memories resurface as I now find myself in my dad’s shoes, observing the changes in my beloved mother. I understand the agony of watching someone you love fade away while still being physically present. It reminds me of the lesson my father taught me—to be as compassionate as possible to those who were once our pillars of strength but are now vulnerable.
Degenerative dementia seems to run in my family, as I have seen with both my mother and grandmother. It’s hard not to feel a twinge of anxiety about my own future, especially when I struggle to find the right word or forget why I entered a room.
When it became clear that Mom could no longer live independently, my siblings and I had to make tough decisions for her care. During those discussions, I couldn’t help but think, “Will my experience mirror hers?” I picture my four kids having similar conversations about me someday. Which of them might shy away from facing my decline? Who would want to help but struggle with the reality of it? Would any of them be open to the idea of me moving in with them?
Sometimes, my mom calls, needing reassurance that I’m doing well, that my husband and kids are okay. She may forget their names or ages, but she instinctively checks on her “little chicks.” In those moments, I can see the essence of her still shining through.
And I hope, as I navigate this journey, my own children will always be able to find me.
This piece originally appeared on Sammiches and Psych Meds.