At my grandmother’s room at the Greens, there were good days and there were bad days. Sometimes she was calm and settled, able to mumble hello or pull you close for a kiss on the cheek. Other days, she wanted nothing to do with you at all, the worst effects of her late-stage dementia evident in her clenched teeth and withering stares. No one knew what to expect when they walked into her room, whether they’d be met with kind smiles or screams to leave. Yet whatever the day, whatever the mood, there was one constant: the presence of her daughter — my mother — by her side.
Practically every evening for 14 months, my mom was there, spending an hour of her day with my grandmother. The routine was the same: she arrived at the Greens after work, chatted with the nurses about the day's events, and found out what kind of mood she could expect to encounter. Then the aide left, and my mom would start telling my grandmother whatever news or gossip or small talk she could think of to fill the time.
Sometimes, there was no response, or if there was, it was in mumbled, incomprehensible comments. Other times, my grandmother was too distracted by the blankets on her bed or the shapes on the ceiling to pay attention, and time was spent calming her down, feeding her medications, or calling a nurse for backup. When the visit ended, my grandmother sometimes begged my mom to stay or shouted whatever jumble of words appeared in her throat, and my mom would have to remind her a dozen times that she’d be back the next day. Occasionally, my grandmother would fall asleep so my mother could slip out, savoring the rare moment of peace.
My grandmother stayed alive longer than any of us expected, and as her pain was drawn out, so was my mother's.
Being with my grandmother, even for an hour, was incredibly hard. It wasn't just the anger. What made it so difficult was the unchanging nature of her condition. She was in that withered state, barely able to communicate and in constant discomfort, for over a year. Her dementia ensured that she would not get better.
The rest of us visited when we could, whenever work schedules or vacation time permitted. It was so easy to justify our absences. "I'm swamped at work," a relative would say, or "it's too big a trip." For me, being in college hundreds of miles away acted as my excuse most days of the year, and it was legitimate. Still, I can't say I wasn't relieved the times I didn't have to go visit, the hours I didn't have to spend watching my grandmother's decline.
When I did visit, it was painful just to be present; I'd watch my grandmother thrashing around and wonder how badly she was feeling, hate how little there was for anyone to do. The stagnancy of it all; the awareness that my grandmother was in a permanent state of distress, was incredibly draining.
There was so much my mother had to deal with those years, as my grandmother’s dementia progressed. At the beginning, it was just the pain of faded memories and enhanced emotions; later, it became battles with insurance, the hiring of aides, fights with my grandmother over meals and showers and nursing homes. She’d seen the anger and the tears, and had been called the worst names you could think of by her own mother. My grandmother stayed alive longer than any of us expected, and as her pain was drawn out, so was my mother's.
Yet my mother knew everything about my grandmother’s life at the Greens, from the names of each nurse to the children of her roommate to the schedule of laundry days and haircuts. When we'd walk in the building, she knew immediately which staff members were on duty; when I'd go to the bathroom, I'd return to see her guiding a lost resident down the hall to her room. One time, I walked in to the dining hall to see her feeding dinner to another resident; when asked why, she just shrugged and said, "She needed help." She was practically another employee there, but it never bothered her. She was grateful to have things to do and people to assist, to see her efforts, for once, have tangible results.
"I love you, Mom," she'd say at the end of every visit, no matter what had occurred in the hour before. "I'll see you tomorrow."
Sometimes the unfairness of it all hit her, and I could see her grief. "It's just so wrong," she'd say. "No one should have to go through what she is." There were so many things she would've liked to say to my grandmother that she no longer could, so many things she wished she could take back or do all over again. And then there was her own fear, both of losing her mom and having the same terrible, drawn-out fate.
But instead of dwelling, my mother moved forward, focusing on whatever she could do to make my grandmother happy, now. If anything, she worried about not doing more, not being kind or gentle or patient enough. She thought that she was inadequate, that she got frustrated too easily or snapped too fast.
"I have to learn to be more patient," she'd tell me, shaking her head in disappointment. "I have to be better around her."
Even now, weeks after my grandmother's death, my mother is still filled with anxiety, worrying about what was done and what could've been done more. Was the funeral okay? Did enough of her friends show up? Would she have been happy?
While I wish my mother could unwind, I know why she can’t. I think I understand the depth of the love she felt for her mother, the knowledge that she would've done anything for her, no matter how difficult or draining.
Watching my mother take care of my grandmother all these years, I saw her get tired and frustrated, but I never saw her give up. And because of my mom, I now understand devotion in a way I never did before. It’s a beautiful gift to have been given, emblematic of the person my mother is, and the woman I want to become.
Images: Rachel Simon