The journey of loving someone with dementia is a relentless cycle that brings heartache and confusion.
Stage One: Denial
“Have you talked to Mom?” I dread that question every time one of my siblings calls. “Yes,” I respond, squeezing my eyes shut before asking, “Why?” The answer is always the same: “She seems… out of it.” “No, I haven’t noticed,” I lie, hanging up and trying to erase the conversation from my mind. I immerse myself in family life, playing with my kids, helping with homework, and preparing a subpar dinner. I sit at the table, chewing while forcing thoughts of her illness into the background. My son shares exciting details about his Lego Star Wars collection, and I nod along, feigning interest, all while my daughter hums a tune she learned at preschool. I convince myself it’s not happening. Again.
Stage Two: The Return
When my phone rings and “Mom” appears on the screen, I hesitate. I yearn to decline the call, but I can’t ignore her. I answer, hoping to grasp a glimpse of her old self. “Hi, Mom,” I say, holding my breath. “You’re coming to see me for Spring Break, right?” she asks, her words tumbling out faster than usual. I fumble for a response, caught off-guard by her rapid thoughts. “Um, I haven’t thought about…” “I’m cleaning out my closet!” she exclaims, moving on to the next idea. “Do you want that brown suit I bought with you?” I remind her that I haven’t worked in years, but it barely registers. “I’m so alive right now!” she insists, detailing her late-night organizing spree. I picture her cluttered home, a stark contrast to the tidy space of my childhood. I lie, saying I’m glad she’s feeling well, even as I know it’s just a fleeting high that will soon fade. “I love you, Mom,” I say, swallowing hard. “I love you, too,” she replies, and I cling tightly to that moment.
Stage Three: Anger
When my phone vibrates again, I sigh deeply. How many times will I endure another outburst? “I don’t know what your problem is,” she snaps when I answer. “I don’t have a problem,” I reply, gritting my teeth. Her unfiltered anger is overwhelming, fueled by confusion and frustration. I listen as she lashes out, berating my father and me. She’s heard snippets of conversations about her care, and her anger spills over, laced with accusations. I fear for my father, who bears the brunt of her wrath daily. Sick Mom is harsh and unforgiving, and my family navigates this storm with quiet trepidation. “No, Mom, I don’t think you’re a child,” I correct her, even as we make decisions about her life without her consent. “Please stop being mad at me,” I plead. But she continues, using words that cut deep. I remind myself she doesn’t mean it, but the pain lingers.
Stage Four: The Darkness
Days pass without a call from her. Yesterday was her birthday, and we had a brief conversation, but today is my birthday. Normally, she would recount my birth story in vivid detail, a cherished tradition. But today, she forgot. The illness has taken that from us. I check my phone repeatedly, hoping for a message that never comes. It’s heartbreaking. I search for a card from her, hoping to find a trace of the woman I once knew. I stumble upon an old note in a pile of mail: “Here’s your mail, Sweetie. Sure do miss you so much. Love, Mom.” Those words bring a bittersweet comfort, reminding me of the love that still exists, even if her mind can’t grasp it.