Terminal Agitation: Losing my Nana to Covid - by Greer Clem

It was almost 9 am on January 4, 2021 when we got the phone call. The one we hoped we would never get but somehow knew we would. “Nana just tested positive,” my mom said. I walked into our garage and told my dad. He leaned his head against the wall. Neither one of us said anything.

I felt a selfish panic rising inside me. I had been to see my Nana the Friday before in her assisted living home – New Year’s Day. Unable to touch her or visit her for most of the year, like so many in assisted living or nursing homes, she had been physically and mentally declining. She called us in tears on Friday night. “I’m stuck,” she wept. She was trapped in her chair, unable to get out even though it was one of those fancy old people chairs that tips you out like a dump truck. She had left her button to call the nurses in the bathroom and was calling for help but no one was coming. My mom was crying – “How am I not supposed to go help my mom?” Dad was insistent – “You can’t go. The place is crawling with Covid.” He was right. By Christmas, her facility had announced several confirmed cases. We were stuck, like so many other families. “I’ll go,” I said. I don’t want to let retrospect paint me as some hero – I was not desperate to go. I was scared. I knew my nana needed more than help getting out of her chair. She wore diapers by this point and likely needed to be changed. She needed help getting her food and water. Things my mom did without a second thought hundreds of times over the last few years. These were not things I did, not things I felt ready to do. But my mom is immunocompromised, and both my parents are almost 60. There was no question in my mind that they couldn’t go in.

My dad drove me over and said he would wait in the car, that I couldn’t stay for more than 20 minutes. I put on an N95, a cloth mask, a face shield with glasses, and plastic gloves. I walked the familiarly depressing hallways to her room, seeing signs on other doors that indicated a Covid positive person was inside. But when I opened the door to her room, it wasn’t scary. It was Nana. She looked so small. The nurses had come and put her in her nightgown around 6 pm – by this point it was about 9. She hated that. “They change me too early. I’m not ready for bed at six!”  

“Hi, darling,” she said. I lifted her out of her chair and guided her to her walker. We walked to her bathroom slowly, together, my gloved hand on the small of her curved back. I wouldn’t let her fall. I cleaned her, changed her, fixed her nightgown. She hated that I had to do it but she needed me. I made stupid jokes throughout the whole thing, my defense mechanism for most things. We walked back towards her chair and she said, “Well, it’s just us chickens.” I said, “Well, only one of us is a spring chicken. But chickens nonetheless.” She laughed at that.

I got her back in her chair, heated her dinner, and made her a tray. She turned her nose up at the vegetables on the plate (can’t say that I blamed her) – “There was supposed to be Jell-o,” she said. Notorious for complaining and for sweets, this made me laugh. I brought her a cup of Jell-o, the yellow flavor – “not my favorite” – with a dollop of whipped cream. Putting a straw in her water, I handed it to her. “You have to drink, Nana. You have to keep your strength up.” The Parkinson’s had made her hands shake and curl and she struggled to carry it to her mouth. I watched her drink, kneeling on the floor next to her. I knew I had to go, that my dad would be worrying and that it wasn’t safe. All of a sudden it felt so huge, so important and real. I took her gnarled hand in my gloved one and said, “I’m so sorry, Nana. I’m so sorry we can’t be here. We love you so much. I’m so sorry.” I began to cry. Tears leaked out of the corners of her eyes, “Oh, honey,” she said. She blinked hard, bravely. She stayed strong for me. “It’s not safe for you, too,” she said. “I love you, Nana,” I said. “Oh, darling. You are my joy for living.”

I don’t know how or why I knew it would be the last time I saw her. In that moment I felt it. I almost ran through the halls and out into the car out front. My dad said, “how did it go?” I ripped the shield and masks from my face and gasped for air and the sobs just came out. I was shaking I cried so hard. Dad just held me and let me cry.

The following week was the longest and worst of my life. The first few days, Dad and I quarantined away from the family until we all tested negative. My mom scrambled on the internet to find a nurse to go be with my Nana. The assisted living facility was so overwhelmed they didn’t have enough staff to be with her. We found an angel named Maritza who would call us from Nana’s room, putting cool wash rags on her head and Vix vapor rub on her chest. She was a godsend. By Friday, Nana was getting worse. She was still lucid and could talk to us, but her chest hurt as her lungs became riddled with the virus. My mom made dozens of calls to get full time nurses throughout the weekend. I sought refuge with one of my best friends that Friday night. We drank wine and sang stupid songs and he let me cry. I got home Friday night at 2:30 to find my mom deep cleaning the kitchen – a sure sign that things were bad. “What’s happening?” I asked. “Nana is worse,” she said. She started crying but, true to my mom, kept sweeping. I sat on a stool and let her talk. She said things she’d never said before. “I don’t care if you or your sister wear my wedding dress, but I want you to wear my veil. Because Nana made that. I had this specific vision of what I wanted and she drove all over New York to get the materials. And it was perfect.” It really was. Mom looked like a princess. Finally I had to get some sleep. “Wake me up if you need me,” I said.

Mom shook me awake around 5:30. “Greer, I need you to come get on the phone with Nana.” I facetimed the iPad the nurse was holding and could see Nana in a hospital bed. Hospice care had delivered it the night before. She was in so much pain. Her eyes were closed and her head was back and she was calling, “Help me. Help me. Help.” My mom was sobbing, trying to get through to hospice to get more medication to her. What they don’t tell you about end of life care is that it’s a clusterfuck of organization. She had to be approved for hospice, who would evaluate her and approve medicine, which would then be sent over for a nurse to administer. She needed morphine and we were desperately trying to get it to her. “Help,” my nana screamed. “I’m here, Nana, it’s Greer. I’m right here. We’re getting you help. I love you. I’m here. You’re not alone, we won’t leave you alone.” I just kept talking to her. We stayed on the phone doing this for three hours.  

My mom finally called our dear friend who is an end of life chaplain and used to be a cantor. “Fran, I need you to go see mom,” she sobbed. Fran, angel that she is, was in full PPE and there within an hour. We saw Fran on the iPad talking to Nana. She only stayed for a few minutes but called us later from her car. “Honestly, Barbara you cannot go there. That place is so dangerous. They’re overwhelmed. I feel safer in the hospitals I work in.” I will forever be grateful to Fran for saying this to my mom. Imagine hearing your mom screaming for help and being told you can’t see her. It was everything my dad and I could do to get her to stay home, and even my dad was wearing down. This was his mother-in-law too. It was unbearable. But Fran was a voice we couldn’t be - she reminded us how dangerous this was. It was awful and we needed it.

The next two days were a blur of pain. Mom and I alternately spent hours on the iPad with Nana as she gradually became unresponsive. Morphine would arrive periodically. She was put on supplemental oxygen. I developed almost a mantra that I would just say over and over again: “I’m right here, Nana. I won’t leave you. I love you.” I’d carry the iPad around the house and tell her what I was doing. “Jesse and I are having that tea you like, Nana,” I’d say. In those last fitful hours before she became unresponsive, the nurse told us we were the only thing that calmed her down. “Barbara, you are the medicine,” he said to my mom.

Dad and I took nap shifts. For my whole life, Dad has gone to bed at 10:30 and gotten up at 5:45. But on Saturday night, it was almost midnight when he dozed off, fully dressed on the sofa next to me. Our two kittens settled in next to him, and I too fell asleep.

On Sunday morning, they told us she was going to die. It was time to call people. She’d entered what they called “terminal agitation.” “What does that mean?” I asked. The hospice nurses told us it was when the body was fighting with the mind, that the body knew it was time to go but the mind wasn’t ready. Nana’s breaths came in short gasps by this point. After each one there seemed to be an endless pause, just long enough that my heart would stop and I would wonder if that was it. But then another gasp would come. Watching my dad say goodbye to her was one of the hardest things. “I never thought I would be so lucky. I never thought I would move to New York and stumble in to a wife and a whole family and kids. Thank you. Thank you for giving me Barb. Thank you for letting me be in your family.” I cried silently as he said his goodbye, as he promised my nana he would take care of my mom. “You don’t have anything to worry about. I’ve got her. I promise.”

My dad and I went to the garage and called my uncle, Nana’s son and my mom’s brother. We told him it was time, that she would likely go soon. He wanted to get off the phone to cry in private. I wanted the same. By Sunday night there was nothing else to do. We moved from room to room like ghosts in our home, sometimes eating, sometimes drinking, but not feeling anything. We kept watch on Nana from the iPad while a nurse brushed her hair and held her hand. Finally, there was nothing to do but go to sleep.

I woke up at 7 am on Monday morning, January 11. I went into my mom’s room and said, “Is she gone?” “She’s gone,” my mom said. Mom was sitting in her reading chair watching the sun come up. She’d been on Craigslist, perusing old furniture and talking out loud to Nana who was on the iPad. “It’s okay to go, mom,” she had said. “I’ll be okay.” At 6:23 am, stubborn though my Nana was, she finally took my mom at her word and she left. Truth be told, to this day I am still waiting for her to come back.

Each day since has been packed with small pangs, reminders that she is gone. Her paintings fill my apartment, her watercolor brushes are in a holder on my desk. She gave me her pearl necklace for my 25th birthday. I plan on wearing it to my law school graduation. None of it feels real. There are still reminders in my phone to call her, still passing thoughts that I meant to tell her something.

When you read stories about this pandemic, you think, “God, how awful.” But then your day keeps going. It may look different, but you keep moving through space and time. You forget about the freezer trucks outside hospitals, about increased pollution from so many cremations. When a family member gets this virus - when you get that phone call – time stops. And even though Nana is gone, time still won’t move. My mom and I said to each other, “It still feels like if we push through this part, if we can just get through it, she’ll come back. And we can see her.” But we can’t. There is no going back. Only forward on some unknowable path to some future, forever changed. Stay home. Wear a mask. Tell people you love them.