“I guess I’m fortunate. If I had to place her in a nursing home … at least it happened before the global pandemic.” Fortunate. This is what I told a friend back in March 2020, shortly after learning that my mom’s nursing home would no longer allow visitors due to COVID. As those words left my lips, I quickly 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 and arrange for her to be in a nursing home while I was still in my 30s. I was furious that a global pandemic (seriously, what is going on?) hit the country, and just days after I left her there, I couldn’t visit? But, hey, at least my dad wasn’t alone managing everything in quarantine, so I’m fortunate? Maybe.
My family’s journey is similar to countless others grappling with this relentless disease. It all started with my mom being “forgetful.” Then it escalated to moments when she struggled to make sense. It led us down a winding, confusing road of tests and referrals until we finally received a diagnosis. The illness I thought affected only grandparents had struck my mother in her early 60s, abruptly ending her career as a kindergarten teacher, reshaping our family dynamics, and thrusting me into the role of an unwitting elder care student.
As the disease gradually took my mom away from us, my dad found himself in need of assistance. Caring for someone with Alzheimer’s means preparing a meal only to watch them toss it aside, then ask, “When’s lunch?” It means calling the police when you realize your spouse has wandered off for a winter walk without a coat. It means facing sudden aggression when you ask them to change their clothes. It means sleepless nights due to endless wandering and anxiety.
With my encouragement, my dad finally accepted help through a local “Adult Day Care.” He could drop my mom off with qualified caregivers while he ran errands. Although my brother and I did our best to assist, our own young children and demanding jobs took up a lot of our time. I never imagined I’d be juggling infant daycare and adult daycare simultaneously.
While it was tough for my dad to face how quickly my mom was declining, I knew that a nursing home was inevitable. I embarked on the challenging journey of research and tours, eventually getting my mom on a waiting list for a nearby facility with memory care. In February 2020, two years after her name was added to the list, I received the call. They had an opening. We had to decide: was it time? If we didn’t take the bed, would we miss our chance? We took the bed.
I moved my mom into the nursing home on March 3, 2020. Before we arrived, I created a manifesto of her life—who she was and what she meant to us all—to share with her caregivers who had never known her before the disease. I packed her favorite clothes, some family photos, and my kids’ artwork. That day, we set up her room, met the staff, and had lunch together.
“I’ll be back soon,” I promised. “Next week, I’ll bring the kids and some more outfits. I promise.” Then COVID hit.
No visits.
I could call to speak with her, but it often went the same way. Alzheimer’s patients typically struggle with phone conversations or video calls. Eventually, we arranged for a window visit, but I couldn’t manage to get there—I had two kids at home without school and a full-time job. I was also worried that seeing her just a few feet away, separated by glass, might shatter me. I might throw a rock at the window and crawl through the broken glass just to reach her.
Finally, in-person visits were allowed. 274 days after leaving my mom in the nursing home, I sat in a room with her again. Temperature checks, masks, six feet apart, no touching—but we were together in a conference room.
With the masks, the progression of the disease, and the time apart, I wasn’t sure if she recognized me. But it didn’t matter. I felt her energy in that space, and for a moment, I was no longer a working parent amidst COVID, a patient advocate, or someone battling crippling anxiety. I was simply a daughter—a daughter with her mom, the first person I ever loved. There in the nursing home, I was sitting with my embodiment of home, the most beautiful person I’ve ever seen, even with Alzheimer’s and a mask.
When the visit ended, I stepped outside into the New Hampshire rain and wept. I might have cried because I didn’t know when I’d see her again. I likely wept because of rising case numbers and her vulnerability. But above all, I was overcome with gratitude.
I think of families who have said goodbye over FaceTime, those who didn’t get to say goodbye at all, and those who have endured virtual funerals, carrying the weight of unthinkable rage-filled grief. I know our leaders have mishandled this situation, and the future is uncertain. Yet, I wept with gratitude. Today, I was with her. I looked into her eyes and told her I loved her repeatedly.
I don’t know what tomorrow holds, but today, I feel incredibly lucky.
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Summary:
The experience of placing a parent in a nursing home while juggling personal responsibilities can be overwhelming and emotional, especially during a pandemic. This narrative illustrates the struggles of a daughter facing her mother’s Alzheimer’s diagnosis at a young age, the challenges of long-term care, and the bittersweet moments of connection amidst separation. Ultimately, it emphasizes the importance of gratitude and love in the face of adversity.