“I guess I’m fortunate. If I had to place her in a care facility, I’m glad it happened before the global pandemic.” Fortunate. This is a phrase I said to a friend back in March 2020, just after I learned that my mother’s care facility would be closing its doors to visitors due to COVID-19. As those words left my lips, I realized I didn’t feel fortunate at all. I felt angry.
I’m angry that my mom received an Alzheimer’s diagnosis at just 67 years old. I’m angry that I had to navigate the complicated long-term care system and place my mother in a care facility while I’m still in my 30s. I’m angry that a global pandemic struck and, mere days after leaving her there, I was forbidden from seeing her. But I suppose I should be thankful my dad isn’t caring for her alone during quarantine? Maybe?
Our family’s journey mirrors that of many others grappling with this relentless disease. It began with my mom being a bit “forgetful,” which escalated to her struggling to form coherent sentences. What followed was an exhausting maze of tests and referrals that ultimately led to her diagnosis. The disease I once believed affected only the elderly invaded my mother’s life in her early 60s, abruptly ending her career as a kindergarten teacher, reshaping our family dynamic, and thrusting me into an unexpected crash course on elder care.
As the disease gradually took my mom away, my dad found himself overwhelmed. Caring for someone with Alzheimer’s means preparing a meal only for them to discard it moments later and then ask, “When is lunch?” It means calling the authorities when you realize your spouse has wandered outside in winter without a coat. It means facing aggression when simply asking them to change clothes. It means sleepless nights due to their restless wandering.
With my encouragement, my dad finally accepted assistance through a local “Adult Day Care.” He could drop my mom off with trained caregivers while he grocery shopped. Although my brother and I did our best to help, our own young children and full-time jobs also needed our attention. I never imagined I’d be managing both infant daycare and adult daycare simultaneously.
As difficult as it was for my dad to acknowledge my mom’s rapid decline, I understood that a care facility was inevitable. I began the daunting process of researching and touring various options, eventually getting my mom on a waiting list for a local facility specializing in memory care. In February 2020, two years after my mom had been placed on that list, I received the call. A bed was available. We had to decide—was it time? If we turned down the bed, would we wait too long? We took the bed.
I moved my mom into the care facility on March 3, 2020. Before our arrival, I crafted a manifesto detailing her life—who she was and what she meant to us—to share with caregivers who had never known her before the disease. I packed her favorite clothes, family photos, and a few pieces of my children’s artwork. That day, we set up her room, met the staff, and shared lunch together.
I promised I would return soon, bringing the kids and more outfits. Little did I know, COVID was about to change everything.
Suddenly, no visits were allowed.
I could call to talk with her, but those conversations rarely went well. Alzheimer’s patients often struggle with phone calls or video chats. Eventually, we managed to arrange a window visit, but I couldn’t find the time to go—I had two kids at home and a full-time job. I also feared that seeing her just a few feet away, separated by glass, might shatter me. I might have thrown a rock at the window just to reach her.
Finally, in-person visits resumed.
274 days after I placed my mom in the care facility, I found myself in a room with her again. Temperature checks, masks, six feet apart, no physical contact—but we were together in a conference room. Behind the masks, amid the disease’s progression and our time apart, I wasn’t sure she recognized me. Still, it didn’t matter. I could feel her presence, and for a brief moment, I wasn’t a working parent dealing with COVID, or a caregiver battling anxiety. I was simply a daughter sitting with her mother—the first person I ever loved. In that nursing home, I was with my embodiment of home, even as she struggled with Alzheimer’s, adorned in a mask… the most beautiful person I had ever seen.
When our visit ended, I stepped into the rain of New Hampshire and wept. Perhaps it was because I didn’t know when I would see her again. Maybe it was the rising COVID cases that put her at risk. Yet, the overwhelming emotion I felt was gratitude.
I think of families who have said goodbye over video calls. I know of those who never got a chance to say goodbye at all. I empathize with families who have had to hold Zoom funerals and are left with unimaginable grief. I am aware that our leaders have mishandled this crisis and the future is uncertain. Yet, I wept with gratitude. Today, I sat with her. I looked into her eyes and told her I loved her over and over again.
I don’t know what tomorrow holds, but today, I feel incredibly grateful.
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Summary:
In this heartfelt reflection, the author recounts the challenges of navigating her mother’s Alzheimer’s diagnosis and the emotional turmoil of placing her in a nursing home during the pandemic. While grappling with feelings of anger and gratitude, she shares her experiences of caregiving, the complexities of family dynamics, and the bittersweet moments of connection with her mother despite the circumstances.