This is an actual sentence that I uttered to a friend back in March of 2020 just after I had learned that my mom’s nursing home would stop accepting visitors due to COVID. As the phrase rolled out of my mouth and settled between us, I realized I didn’t feel very lucky. I am pissed.
I am pissed that my mom was diagnosed with Alzheimer’s at 67 years old. I am pissed that I navigated the long-term care system and had to place my mom in a nursing home in my 30s. I am pissed that there is a global pandemic (really, what the hell?) which swept across the country and only days after I left her there, I can’t go see her? But, at least my dad isn’t taking care of her alone in quarantine, so I’m lucky? I guess.
My family’s story is similar to many other families that are facing this impossible disease. It started with my mom being “forgetful.” It went to my mom not making sense sometimes. It led to a winding and confusing path of tests and referrals which finally led to a diagnosis. The disease I thought only happened to grandparents infiltrated my mom in her early 60s, halting her kindergarten teaching career, reshaping my family, and unwillingly enrolling me on an elder care crash course.
Eventually, as the disease took away my mom in tiny increments, my dad needed help. Caring for someone with Alzheimer’s means making a meal for them, only to turn your back while they throw the meal in the trash, and then ask, “When are we having lunch?” It means having to call the police when you didn’t notice the front door was unlocked and your wife went for a winter walk with no coat. It means your loved one suddenly becomes aggressive when you ask them to change their clothes. It means you don’t sleep at night because they wander and fuss.
With my urging, my dad finally accepted the help in the form of a local “Adult Day Care.” He was able to drop my mom off with qualified caregivers so that he could grocery shop. While my brother and I tried to help as much as we could, our own young children and full time jobs demanded our time as well. I could never have imagined that infant day care and adult day care would be part of my life at the same time.
While it was difficult for my dad to accept how quickly my mom was declining, I knew that a nursing home was in our future. I began the difficult task of research and tours and eventually got my mom on a waiting list for a local home with memory care. In February of 2020, two years after my mom had been put on a list, I got the call. They had a bed. We had to make a decision. Was it time? If we didn’t take the bed, would we eventually learn what time was too late? We took the bed.
I moved my mom into a nursing home on March 3rd 2020. Before we arrived, I wrote a manifesto of my mom’s life — who she was and what she meant to all of us — to distribute to her caregivers that never knew her before the disease. I don’t know if other families do that, but she is my mom, so I did.
I packed her favorite clothes, some family pictures, and some of my kids art. That day, we set up her room, met the staff, and ate lunch together.
I would be back soon, I promised. Next week I would bring the kids and some more outfits. I will be back really soon.
Then came COVID.
I could call and ask to speak to her but it usually went the same way. Alzheimer’s patients don’t do well on the phone or facetime. Finally, we could arrange a window visit but I couldn’t manage to get there — I also had two kids at home without school and a full time job. I think I was also worried that the sight of her only feet away but behind glass would break me. I might throw a rock at the window and crawl through broken glass just to get to her.
Finally, in person visits.
274 days after I left my mom at a nursing home, I sat in a room with her again. Temperature checks, masks, 6 feet distance, no touching, but together in a conference room.
Between the masks, the progression of the disease, and the time apart … I don’t know that she knew who I was, but it didn’t matter. I could feel her energy in the space and for a moment, I wasn’t a working parent during COVID, I wasn’t a patient advocate, I wasn’t alone in crippling anxiety. I was a daughter. A daughter in a room with my mom — the first person I ever loved. There in a nursing home, I was sitting with my embodiment of home, my home. Riddled with Alzheimer’s, wearing a mask… the most beautiful person I have ever seen.
When the visit was over, I stepped out into the New Hampshire rain and wept. I guess I might have wept because I don’t know when I will see her again. I probably wept because cases are rising and she is at risk. But I was overcome with one prevailing emotion, gratitude.
I know of the families that have said goodbye over FaceTime. I know of the families that didn’t say goodbye at all. I know of the families who have hosted zoom funerals and will bear the pain of an impossible rage filled grief. I know that our leadership has botched this response and the future is uncertain. So, I wept with gratitude. Today, I sat with her. I looked in her eyes and I told her I loved her over and over again.
I don’t know what tomorrow will bring, but today, I am so damn lucky.