The Hospice Ogre

       I won’t forget the day the boss leaned into my office doorway at the hospice and said, “They’re calling it a pandemic.” I stared at him. “We’re in a pandemic. It begins now.” We’d seen it coming; still, we looked at one another to mark our last moment of pre-pandemic innocence, the last glimpse of the other’s whole face. 

      My boss zipped off to make signs for every entrance, blocking off all but one door where we could screen everyone who came in. We got out all the PPE we could find and ordered more. He followed a lead on hand sanitizer and came back hours later with large buckets of goop. Every visitor might be a vector, a bringer of the virus. Every staff member too. Our dear and welcoming place—where visits are always compassionate, always necessary, and may be someone’s last—all at once became a place of barriers and masks and suspicions. 

      We made a station for the front entrance, plastered the door with signs, and set down the rules: treat your hands first, sign in with a “clean” pen and place it in the “used pens” cup; put on a fresh medical mask; let us screen you for every symptom and scenario; go straight down the hall to the room of your loved one. If you have a question, use the call bell; don’t come to the nurse’s station or loiter in the hallways. We plastered the common room and the coffee machine with Do Not Touch signs. We told the volunteers not to come. Our piano was silent. 

      Each nurse who stayed to work took me aside during those first days of pandemic and shared with me their worries. One told me she’d been intubated for asthma once; another had a heart condition. Some lived with children or with elderly people. I knew who might not make it through a bout of coronavirus if an outbreak occurred at our facility. Because of the single-site restrictions, meaning long-term care facilities couldn’t share their nurses with us, our staffing numbers dropped to less than half. We needed to be mighty to get through, to keep the hospice open and running. 

      So, I became the ogre. 

      I told families they needed to choose just two principal visitors. Normally, we are a place where families gather, surrounding their dying loved one, at times singing or telling stories, piling onto the bed, spilling out of the porch doors into the yard. I said, if you need more than two people visiting, negotiate with me; tell me whether the extra person is isolating or working with others. I felt horrible at first, but the surprise was families needed me to be the ogre too. In Room 7, the man standing at his mother’s bedside said to me he wanted his brother to visit, but said, “My sister-in-law works at a long-term care facility. Honestly, I don’t want her coming here. I just can’t be the one to tell her.” He was whispering, making sure I was the only one to hear.  

      I held my hand out, my palm facing him, reminding him we should stay two meters apart. “I can talk to her, if you’d like,” I said. 

      “Oh, I’m so sorry,” he said, backing up. “Yes, I’d appreciate that.”

      “I’ll tell her we have a small and vulnerable community here at hospice. She’ll understand.”

      “Thank you.” He closed his eyes. 

      But the husband of the woman in Room 10 wasn’t comforted by the regulations. He stayed by his wife’s side for long hours. One day as he was walking down the hall past the nursing station on his way out, he poked his head around the Plexiglas to say to the nurse, “My wife wants some help repositioning.” The nurse rose to go to the room, saying to him, “Sure. Next time, use the bell in the room for your request.” 

      The man’s voice blasted down the hallway, “Has all common sense left us?” In my office, the next day, he told me his version of their exchange. I’d already heard the nurse’s. “I was walking by the nurse’s station anyway,” he said. “I was saving the nurse a few steps.”

      I nodded, taking in his frustration, the isolation he was feeling, the world turning upside down. “I hear you,” I said. “You have a point.”

      “That nurse is just a bitch,” he said, getting up to leave my office. 

      “Some of these rules can seem pretty arbitrary.”  

      By the end of the week, as his wife lay dying, he popped his head into my office again and told me how great the staff was, how they were comforting his wife in every way possible. 

      “I had no idea about the dying process, you know,” he said. “And I was the bitch that day to that nurse. I wonder if there’s a way to make it up to her.”

      “No worries,” I told him. “Your gratitude is all we need. And chocolate.” He laughed.

      In Room 3, the fellow we had just admitted to hospice looked to be a sweetheart, with wild white eyebrows and crinkly eyes, but he was mean-mouthed, directing all his nastiness toward his wife. She had brought him to hospice in the nick of time—for him, yes, but definitely for her too; she looked like she was about to collapse from the physical and emotional exhaustion of caring for him single-handedly at home. I caught her eye as he blasted at her something about where to place his denture cup, and I saw the weariness in her face. Once I’d examined him for pressure wounds and asked what made him comfortable, what foods he wanted from the cook. I drew her toward their adjoining bathroom, avoiding the hallway (thinking of the pandemic guidelines), and asked her what these past few weeks had been like at home. She gave me a fierce look. 

      We talked for a few minutes, until his voice snapped her back to his side, to pull his pillow closer into his shoulders, to bring water in a cup with a straw so he could manage. “No,” he shouted, “Where is my cup, with the handle. I need a handle.” As he said it, he flashed a smile at her, and she smiled back. The nurses helped him onto his side, treated the redness appearing on his back, and showed him how the call bell worked. When he spoke, even if he was answering a nurse, he looked at his wife, his eyebrows throwing little punches for her to interpret.  He tossed her curt phrases, reminding her she wasn’t fast enough, perceptive enough, thorough enough. And then he’d smile and a moment would pass between them.

      “He’s punishing me,” she told me in the bathroom, “for bringing him to hospice.”

      “Ah, I’m sorry.”

      “He tells me I am ending his life, bringing him here.” 

      “He’s hard on you,” I said.

      “It’s just how he is, something bothering his soul, maybe. 

      I pointed to her nose where her mask had dropped below her nostrils. She reached up to adjust it, and that quickly, the little bubble of trust between us popped.  I tried to recover the moment. 

      “Tell me about him,” I said. 

      “This man can fix anything that’s broken. A stove, a car engine, a canoe.” 

      “That’s amazing.” 

      “So, there’s nothing new in our house,” she smiled. “Everything’s been fixed a dozen times.” 

      She was edging closer to me as she spoke, now within a foot of my face. I held my palm out towards her. 

      “Remember the two meters.” As I said it, knowing I was being the ogre.

      “Oh,” she said. “I’m forgetting.”

      “No worries. We try our best.”

      I think, back then, there were about 10 cases in all of BC’s Lower Mainland. Still, that’s how it felt, my primary responsibility as keeper of rules at the hospice, perceiving every human in front of me as a potential vector for the virus. She was simply tired of breathing through her mask. 

      I tried to recover the moment. I said, “There’s a palliative physician, Ira Byock, who talks about preparing ourselves to let go of our loved ones by scanning the horizon for these topics: have we said: thank you, I love you, goodbye, I forgive you, I hope you forgive me? We don’t need to say these things directly but we could say, You have been wonderful to live with, or I’m so lucky to know you.”

      She nodded. I waited. 

      “I know not everyone can say such things to one another.” 

      “He’s not warm, my husband.”

      “Ah.” I could tell our little window of communication had shut. 

 

      They were with us a little over a week, and during that time, the relationship between the two didn’t change. I began to see that husband and wife had their own rough terms of endearment. He pointed out what she should bring to him, to wipe up, to fill up, and she allowed him to command the world from his bed, and maintain what little control he had left to him. She was giving him that, I came to see. 

      As I left them on the Friday afternoon, his eyebrows were knit together like a ball of coarse wool. I smiled and them both and waved, saying I’d seen them again on Monday. He wanted his blanket smoothed out. She smoothed it out. “Too much fussing,” he said and waved her away. “Take a nap,” he said.

      I learned early Monday he had died in the wee hours of the morning. The funeral home hadn’t come yet. I met her inside the room and spoke my condolences. How peaceful he looked, lying flat now, his forehead smooth. She told me how grateful she was to the staff.
“Thank you,” I said, “for bringing him here, for sharing his final days with the hospice team.” 

      “I need to bring our priest to him,” she said.

      “I can ask our chaplain to come in.”

      “It has to be our priest. From our church.”

      “I’m sorry. We’re in a pandemic,” I said, stepping into ogre role. “We can’t have extra people in the hospice.” 

      “He has to come. I have called him already.”

      “He can’t come in,” I said. 

      “He’s coming in 15 minutes,” she said.

      We were standing by her husband’s body, she and I, neatly squared off, face mask to face mask. I tried again. 

      “Your priest may be working with other people, going into homes. We have a fragile community here. These are the most vulnerable people.”

      “He is coming.”

      “I can’t risk it.”

      There was nothing left to say. I left Room 3 and walked into my office. I stood a moment by my desk. All of it—all the PPE, the rules, the distance—is totally necessary; we need to do all that keeps us safe from outbreak, chaos, and, though it seems ironic, death. If someone has 14 days to live, we sure don’t want them to die in two or three from the virus. But all of these protective measures are completely against what we do at hospice; we want to let people in to support their dying loved ones, to help us meet the needs of their bodies, to learn the values of their lives and address the smallest of goals of mind and spirit. We need family to help us learn who these people are. I turned and went back into Room 3.

      “Okay,” I told her. “You win. He can come around the building to the back. He can see your husband through the glass.”

      “The priest must touch him. Say words over him.”

      I took a breath. I watched her determined eyes, the hard set of them staring me down even though she was a head shorter than me. She stood by his body, utterly strong. Nothing I could say was going to change her mind.  

      “Okay,” I said. “He comes around the back, and he steps into the room. Five minutes. No nurses in the room at the time.”

      “Okay,” she said. 

      I closed the door and watched for him to arrive, so I could head him around the building to the back where the doors of the rooms opened to the patio.  

      Once their priest had gone, I came into the room again. She was collecting up the framed photograph of the two of them, his slippers, the potted plant. We were silent a moment. 

      “I admire you,” I said. “You totally stood up to me.”

      She looked into my face.

      “You are not allowed to have a single regret,” I said. “You truly have done everything you could possibly do for your husband.”

      “Yes,” she said, smiling now, and set down the bag she was holding. “Yes, thank you.”

      “You’re going to be fine. You are strong.” 

 

      I wanted to hug her, and she knew it. I kept my distance, but we held our arms out into the air across from one another, and the hug was a circle with a two-meter radius.

      Then she leaned over her husband’s still face and whispered to him, “Go well, dear. God is reaching out his hand for you. Take it.”