Okay, not really. I don’t see dead people. And because jokes are always funnier if you have to explain them, allow me to explain. I’m a hospice nurse, and although I don’t see dead people, sometimes my patients do. It’s a phenomenon that we often see in hospice care, and it’s almost always a comforting experience for the person nearing the end of life.
I’ve witnessed cathartic conversations with deceased parents, joy over the return of a childhood pet, laughter with visiting children, tears when reunited with a spouse, and peace after reconciliation with a long lost friend. I like to think of these apparitions as evidence of our human capacity to comfort ourselves and each other with stories and memories. How wonderful that, in our final days, some of us get to relive special memories or see people we miss very much.
The comfort of shared memory and narrative is not reserved only for the people who are ill. I hear families and friends exchange stories to console each other and cope with grief. Stories of childhood, of chance meetings, of loss. Stories of birth, even in a time of death. Stories of first times and best times and last times. We turn to these anecdotes for context, for processing and understanding new experiences and new loss, for tempering the traumatic with the uplifting.
We use story to understand each other, to relate to one another, to commiserate and say, “I’ve been there.” In hindsight, we assign meaning and fate and cosmic coincidence to past events. We express support and care by sharing parts of ourselves. Sometimes we reveal embarrassments, even past shame, and by making ourselves vulnerable in this way, we connect.
I hear stories that begin, “I’ve never told anyone this before.” And oh, there’s gallows humor too. I’ve joined so many families in fits of laughter at the bedsides of ornery, dying grandmothers, which sounds cruel and terrible, but humor is sometimes the best coping mechanism there is.
Full disclosure, I had a hard time writing this essay because I often have a hard time talking about my job. One evening, as I got the bones down for the first couple of paragraphs, my brain decided to have a light panic attack. I say “light” because I did not spend the rest of the night trying desperately to yoga-breathe in child’s pose in the middle of my bed, like that ever works.
I paced a good bit.
I checked my pulse and counted my heartrate compulsively because I was about 80% sure I felt a heart attack coming on, or possibly a stroke, neither of which is ever the case, yet still scare the hell out of me every time.
I scolded myself because this was way more worked up than anyone should ever get over having to write an essay, and eventually my body caught up with my mind and I calmed down.
When I started working in hospice, I got anxiety attacks all the time. For the first 11 months (I counted), I cried every day–in my car between patient visits, hiding in the bathroom at home. I was a mess. If this were a movie, right now you’d be watching a montage of me ugly-crying in every room of my house, in grocery stores, in Target. My point is, sometimes I get worked up for no good reason (e.g., writing an essay and worrying if it’s the worst) and sometimes I get worked up for good reasons (i.e., hospice is heavy, man).
The first time a patient described her end-of-life visions to me, I’d been out of orientation and on my own just a couple of weeks. Let’s call this lady “Mrs. S.” Every detail of my visit with her is Gorilla Glued to my brain.
I made a late morning visit to Mrs. S’s home. Her son met me at the door, and he looked exhausted. “Mom’s not doing good,” he said and explained to me all the changes she’d made since I’d seen her the day before. “She won’t eat. Last night she wouldn’t even eat the applesauce. And now she won’t talk. She wakes up a little if I move her, but she doesn’t open her eyes and she doesn’t talk.” He said all of this over his shoulder as he hurried back to her room.
I followed him down the hall, trying to think of reassuring things to say. These conversations did not come naturally yet, I was still so new. My biggest fear was that I would make things worse, that I would say something or do something and make what was already one of the most awful times in this family’s life even more awful. That’s still my biggest fear.
The son said that except for two quick bathroom trips and to answer the door when I arrived, he had not left her bedside since my visit yesterday. I knelt next to Mrs. S’s bed and patted her hand and greeted her, but she did not respond. I told the son she looked very comfortable and that he was doing such a good job taking care of her.
He watched me intently as I listened to Mrs. S’s chest with my stethoscope and checked the cold skin of her hands and feet for mottling. I explained to the son what I was seeing and what those changes meant. He just nodded and rubbed his eyes. I offered to stay in the room awhile and give him a break. I told him to go pee, make a sandwich, drink some water, call his sister. Nurse’s orders.
I pulled up a padded foot stool with a peacock on it and sat next to Mrs. S. I talked to her as I got my computer out of my bag so I could chart my assessment and visit notes.
“Your son is going to be okay. I know it took him awhile, I know he didn’t understand and didn’t want to, and I know you worried about him handling all this. But he’s okay.”
“He’s a good boy.” Her eyes were closed, but she’d spoken. I put my laptop on the floor.
“Yes, he’s a very good boy. You raised a good one.” I squeezed her hand. She opened her eyes and looked right at me. Her head on the pillow turned toward me a little. I tilted my head to the side so that our eyes could meet. “What do you need?” I didn’t know what else to say. I didn’t know what to offer. I wanted her to tell me what to do for her.
She shook her head and closed her eyes again.
I said I would go get her son.
“Wait,” she said. “Lots of visitors.”
“You’ve had lots of visitors?”
She nodded yes. “Mother.”
“I’m so glad your mom came to visit you. I bet it was so good to see her.” I had no idea if I was saying the right thing.
I looked at the window on the other side of her bed. It was a little after noon now, and the sun shone through wispy, white curtains. “Was it raining earlier?” It had not been raining, but I asked anyway.
“Yes, I went in the rain.”
I reached for the Kleenex in my pocket. I still keep tissues in my pocket. I tried not sniff and wipe my nose and dab my eyes too much. I thought, I am ruining what might be her last day with my sniffling and nose-blowing. That’s going to be one of the last sounds she ever hears–her stupid nurse sniffling.
“What else do you see?” I don’t know why I asked, but I did.
She opened her eyes and looked straight ahead. It didn’t look like she was focusing on anything, just staring through the ceiling. She shook her head again. “It’s like I’m hanging from something. An edge. I’m hanging on with my fingers.” I was holding her hand, which was still limp, and her fingers didn’t move. “But barely.”
Now I really started sniffling and snorting and wiping, and I tried not to sound like a whimpering idiot when I spoke. “I’ll go get your boy,” I said and left the room. Her son and I returned, but she had fallen back asleep. She didn’t wake when we spoke or when we squeezed and patted her hands.
After that visit, I sat in my car and cried. I’d strategically parked behind a tree next to the road. With all the crying I did back then, I’d learned to choose my parking spots carefully and to find inconspicuous places just in case I lost it. It was Wednesday, which meant I had an interdisciplinary team meeting to get to by one o’clock and I wasn’t going to make it. Get it together, I told myself. (I told myself that a lot.) But all I kept thinking was, What if those were her last words? What if she wasted her last words on me? Her son should have been the one there.
I felt guilty. I felt ashamed I hadn’t brought the son back to the room sooner. I drove to the office and sobbed the whole way and showed up late to the meeting looking like a red-eyed crazy person.
Mrs. S died that night. She waited for her son to take a bathroom break. He left the room for two minutes, and when he returned, she wasn’t breathing. Some people seem able to choose the moment of their death. They wait until they’re left alone, as if not to burden their caregivers. Or they wait for the arrival of someone important, and when that person is with them, the patient is at peace and lets go.
Not all patients are like Mrs. S. Not everyone makes profound death metaphors to me about barely holding on. Sometimes I just hear bits and pieces of one side of a conversation between my patient and someone I can’t hear or see. Sometimes I only get the stories second hand when the family tells me about their loved one talking to dead relatives or reaching for things that aren’t there for the rest of us.
Once, I spent an entire nursing visit pretending to put an invisible dog back in the bed with its owner. My patient would pat the bed with her hand and call for the dog who had died years before. I’d say, “Oh, here he is!” and bend down below her line of vision as if to retrieve something from the floor. I’d press on the bed, trying to recreate the feeling of his weight next to her. She’d close her eyes and make petting motions. I’d return to my assessment, and after a few minutes, she’d pat the bed and call for her dog again.
That visit with Mrs. S has always stayed with me. I was overwhelmed at the time, but I was aware then, as I am now, that it is a privilege to be with someone in the end of life. I still feel honored to be part of someone’s final months or weeks or days, to be welcomed into a family’s home, to share these intimate moments, to hear last words and shared stories. I still worry with every patient and every family if I’m saying and doing the right things, and I still cry, some days more than others. But I don’t have nearly as many panic attacks, and I don’t hide my car behind trees anymore.
I am often asked by my patients’ family and friends if these apparitions are real or only hallucinations, if their loved one is seeing ghosts or angels or heaven or a visitation from the other side. Sometimes I’m asked if I have supernatural or religious beliefs that align with their own.
But in the end, what matters most is not whether I have spiritual beliefs that allow for the existence of ghosts or angels or an afterlife. What matters most is that what my patients are seeing, hearing, and feeling is very, very real to them. And that’s beautiful.