“I suppose I’m fortunate. If I had to place her in a nursing home … at least it happened before the global pandemic.” Fortunate. This was a statement I made to a friend back in March 2020, right after I found out that my mom’s care facility would no longer allow visitors due to COVID-19. As those words left my lips and hung in the air, I realized I didn’t feel fortunate at all. I was furious.
I was furious that my mom was diagnosed with Alzheimer’s at just 67. I was furious that I had to navigate the long-term care system in my 30s and place her in a nursing home. I was furious that a global pandemic—seriously, what the heck?—hit right after I left her there, meaning I couldn’t visit her anymore. But hey, at least my dad wasn’t alone in quarantine taking care of her, so I’m lucky? I guess.
My family’s experience mirrors that of countless others grappling with this relentless disease. It all began with my mom being “forgetful.” Then it escalated to her occasionally speaking nonsense. This confusing journey led us through a maze of tests and appointments until finally, we received a diagnosis. The illness I thought only affected grandparents struck my mom in her early 60s, cutting short her beloved kindergarten teaching career, reshaping our family dynamics, and unintentionally enrolling me in an elder care crash course.
As the disease gradually eroded my mom’s capabilities, my dad struggled to manage alone. Caring for someone with Alzheimer’s means preparing a meal only to find it tossed in the trash moments later, followed by the question, “When are we having lunch?” It involves calling the police when you realize the front door was left open and your spouse has gone for a winter walk without a coat. It means your loved one can become aggressive over something as simple as changing clothes. It means sleepless nights because they wander restlessly.
Eventually, with my encouragement, my dad agreed to seek help. He found a local “Adult Day Care” where he could drop off my mom with trained caregivers while he ran errands. My brother and I did our best to assist, but with young children and demanding jobs, our time was stretched thin. I never expected to juggle both infant daycare and adult daycare simultaneously.
As my dad faced the reality of my mom’s decline, I knew that a nursing home was inevitable. I embarked on the challenging process of researching facilities and taking tours, eventually getting her on a waiting list for a local memory care home. In February 2020, two years after placing her on the list, I received the call: a bed was available. We had to make a choice: was it time? If we didn’t take the bed, would we regret it later? We accepted the offer.
I moved my mom into the nursing home on March 3, 2020. Before we arrived, I composed a manifesto of her life—who she was and what she meant to us—to share with her caregivers who had never known her before the disease. I’m not sure if other families do this, but she’s my mom, so I felt it was important.
I packed her favorite clothes, family pictures, and some of my children’s artwork. That day, we set up her room, met the staff, and shared a meal together. I promised I would return soon—next week, I’d bring the kids and more outfits. I would be back right away.
Then came COVID-19.
No visits.
I could call, but those conversations rarely went well. Alzheimer’s patients often struggle with phone calls or video chats. Eventually, we arranged a window visit, but I couldn’t find the time—I also had two kids at home, no school, and a full-time job. I think part of me feared that seeing her just a few feet away but separated by glass would shatter me. I might have even wanted to throw a rock at the window and crawl through the shards to get to her.
Finally, in-person visits resumed. After 274 days apart, I was in a room with my mom again. We had temperature checks, wore masks, kept six feet apart, and couldn’t touch, but we were together in a conference room.
With the masks, the progression of her disease, and the time apart, I wasn’t sure she recognized me. Yet, it didn’t matter. I felt her presence in that room, and for a brief moment, I was not a working parent navigating a pandemic, nor a patient advocate burdened with anxiety. I was simply a daughter, sitting with my mom—the first person I ever loved. There, in a nursing home, I was with my embodiment of home, my heart. Though riddled with Alzheimer’s and wearing a mask, she was the most beautiful person I had ever seen.
When the visit concluded, I stepped out into the New Hampshire rain and wept. I suppose I cried because I didn’t know when I would see her again. I likely wept because COVID cases were rising, and she was at risk. But above all, I felt an overwhelming sense of gratitude.
I know families who have had to say goodbye over FaceTime. I know families who didn’t get to say goodbye at all. I know families who have hosted Zoom funerals and will carry the burden of unresolvable grief. I recognize that our leaders have failed us in managing this crisis, and the future remains uncertain. Yet, 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 will bring, but today, I am incredibly lucky.
Search Queries:
- How to cope with a parent in a nursing home.
- Understanding Alzheimer’s diagnosis in younger adults.
- Resources for caregivers of Alzheimer’s patients.
- Navigating family dynamics with aging parents.
- Mental health support for young caregivers.
Summary:
In her 30s, Ava Johnson reflects on the challenges of caring for her mother, who was diagnosed with Alzheimer’s at 67. After navigating the complexities of long-term care and placing her mom in a nursing home just before the COVID-19 pandemic, Ava grapples with feelings of anger and gratitude. Despite the emotional turmoil of limited visits, she cherishes the moments they share and the love that remains.