I haven’t seen my mom since her nursing home closed to visitors more than three months ago. On March 11, I arrived for a visit to find volunteers banned. Instead of saying the rosary with volunteers, mom and I sat by the window in the large common room while I rubbed lotion on her hands. We don’t talk much these days. Mom comments on the weather or a passing car, but the dementia makes her less and less verbal.
The necessary social distancing from COVID-19 is particularly hard with a person suffering from dementia. The way mom and I communicate now is through the body: we hold hands, I bring her ice cream, we say “I love you.” With COVID-19, I have lost the opportunity to touch her.
Mom’s dementia started with broken hips. She broke her first one outside in the cold, her second one about 10 days later in rehab. The combination of trauma, anesthesia, and grief from recently losing my father brought on a dementia that, unlike a more traditional Alzheimer’s, seemed to affect both mom’s short-term and long-term memory rapidly.
We wrestled, as many families do, to find her appropriate care. We initially tried to keep her close to her home and friends with familiar faces, but as she declined, it made sense to move her closer to one of her children. She had been on hospice for some time when we moved her to a skilled nursing facility just outside of Philadelphia, where I could visit her almost every day.
Amazingly, mom gained weight and “graduated” from hospice in December. While she has made physical gains, she has been less and less verbal, but I have been able to take her to Mass and the rosary at the facility, and sit with her at meals.
While mom can’t remember eating lunch five minutes after she’s left the dining room, she does recognize my sisters and me. She can no longer dial the phone or have a conversation. Yet, she still smiles when she sees us and still responds to “I love you” — sometimes with “I love you,” and sometimes with “Thank you!” We have been graced with what the medical professionals call a “pleasant dementia.”
Yet she remembers prayers. She remembers us.
I bring her chocolate milkshakes, rub expensive lotion on her hands (growing up, it was Jergen’s from the big yellow bottle), and wheel her outside in good weather. Sometimes I touch up her nail polish or wait with her in the hair salon in the facility.
My presence is what matters to her. I can’t do this by phone or FaceTime. She needs to be touched. And that’s what COVID-19 has taken away from my family and me.
Still, we have been trying. We call so we can hear her voice, and we have tried FaceTime. She has trouble watching us on the screen that the social worker holds up for her, and each encounter is brief, less than three minutes.
I miss my mom. I worry that after this long time apart, she will no longer recognize me or my sisters. I worry that she will have fewer words when we see her again. I worry that she is declining more quickly and that March 11 might be the last time I got to see her alive. I have faith that the nursing home staff is taking good care of mom, but I also know that they may not have time to sit with her and hold her hand.
On Mother’s Day, we did a window visit. Mom was beautifully dressed in red and soundly asleep. We knocked hard on the glass. She woke up and glanced at us from behind her mask. We waved signs and she seemed to recognize us. She stood up from her wheelchair to open the window and let us in. Staff responded to remind mom to sit down, but it was good to see that she was her independent self.
Our time together is probably short regardless of COVID-19. As we move toward the green phase, I hope that I can go see her and wheel her outside on the paths of the facility’s garden, so she can feel the sun on her face. I hope to hold her hand again.
Ann E. Green teaches “Hospital Stories,” a service-learning and medical humanities course at St. Joseph’s University in Philadelphia. She is a professor of English and writes about issues of mass incarceration and the medical humanities.