“She wants me to just sit there and hold her hand. I don’t have time for that.”
The nurse rushed out of the semi-private room, off to make her additional rounds for the day.
I was sitting at the bedside of Lori, a 65-year old woman who was actively dying. This rehab facility housed both the young and old who were struggling with various ailments, though it didn’t seem as if any of the other patients were knocking on death’s door.
Traditional healthcare providers are urgently needed, but they’re already overwhelmed. I’ve heard it from nurses themselves; they feel like they’re drowning. Tending to basic necessities including medication administration, changing diapers every few hours, or delivering meals, providers will also ask the question, “How are you feeling?” with no intention of measuring emotional or spiritual well-being.
But we also need emotional support in our last days.
As a hospice volunteer or Death Doula, it’s possible to take on the role of friend, sibling, child, or companion. For some, the emotional toll is overwhelming. “I don’t know how you can do that,” I’ve had people express to me, “I don’t think I could handle it.”
Being able to emotionally support the dying has always felt important. Death doulas and hospice volunteers are essential to be able to take on the emotional waves and depths that the dying process calls for. Healthcare workers are too busy, family members aren’t present, and a massive aging generation needs some support. It feels like no one else is doing it.
Some people have the desire to mute their feelings—they feel too much. Numbing feels essential for self-preservation. I tend to feel the opposite. As I got older and the logical side of me grew through various jobs and academic pursuits, I found myself feeling desensitized toward much of the sadness and horror in the world.
I’ve felt a push to help in these situations that I know are horrible, not because I necessarily always felt an overwhelming emotional urgency to do so, but because it felt like logically, I knew I was someone who could handle it, keeping my composure, and being the “strong one” in the midst of someone else’s chaos.
The truth is, my ability to be able to “handle” these sensitive topics has created almost a feeling of guilt. Am I less empathic than those who claim they “can’t handle it”? Am I less sensitive or caring because I don’t always cry after a particularly sad or heartwarming visit?
It’s an uncertainty about myself I’ve been unable to share with more than a few people.
There have been three major life lessons relating to my own emotional roller coaster when working with the dying.
First, as mentioned, I’ve wanted to feel more empathetic, somehow understanding that what I was currently feeling was not enough. Second, I’ve wanted to do more than what I was doing in order to more appropriately convey that empathy. And third, I’ve actually felt a feeling of frustration for patients who haven’t seemed to want the emotional support that I felt I was there to provide.
While I’ve previously hoped to feel that steady state of empathy, I’ve come to recognize it doesn’t always work that way. I’ve essentially come to recognize that I’m human. Just as unfluctuating apathy creates a robot, so could you say a consistent state of any one emotion is completely unnatural.
Just as we have the ability to hone our creativity, so do we have that same ability to hone our emotional capacity.
I genuinely enjoy feeling wonder, sadness, and the whole spectrum of human emotion. While the goal is to maintain peace and quiet in my own life, I seek situations that make me “feel,” wherever I can find it.
As I was graduating from my Death Doula program and getting started with volunteer work, I was excited with the prospect of providing emotional care to the dying. It’s common for students to ask the questions: “What can I say? I’m not the best with words. What can I do? Will it feel awkward?”
Christine was dying from bone cancer. A former teacher and real estate agent, she was a naturally quick-witted and social person. I started to visit her, providing “companion visits,” which provided her some support other than her usual home healthcare workers.
Christine had a strong desire to entertain. I may have been a volunteer, but to her, I was her guest. She was always looking at the activity calendar to see what we could do next together. Bingo, summertime festivals, comedy shows—the options were endless at her retirement facility.
She was excited to have me take control of her wheelchair and show me around. That first day I visited with her, though, she surprised herself: “I can’t seem to catch my breath. I’m so sorry. I don’t know if I can do this today.” I reassured her that it was okay—that we literally didn’t have to do anything.
The truth is, by the time I started visiting Christine, we never had the chance to leave her apartment together as she’d hoped. The first two visits were filled with chatting, sometimes openly about her impending death, telling each other about our lives, looking at picture books of her family, and exploring new makeup choices at her vanity.
When I arrived on the third visit, the nurse was showing me Christine’s new pain pump, which would steadily administer medication into her system. Christine started to apologize some more about not feeling as energetic.
Just as I had to learn my lesson regarding whether my emotions were enough, Christine seemed to be learning her lesson that I wasn’t someone who required entertaining. She needed to allow herself to rest.
One day, Christine took an initiative, asking if we could do something a bit more passive. We sat and watched “Sesame Street” as she dozed off, eventually falling into a deep, medication-induced sleep, sitting up on the couch. She didn’t look comfortable. It was as if the drowsiness caught her by surprise.
I turned the volume down on Elmo’s singing performance, trying to provide a more peaceful environment.
When she eventually woke up and looked over at me still sitting next to her, she said “I’m glad you’re here,” and patted my hand.
In that moment, I realized more than ever that my presence was simply enough. I didn’t have to say anything, be anything, or be anyone special for it to be meaningful. I didn’t have to do anything more than watch Oscar the Grouch have a temper tantrum to convey my compassion. I think she realized that, too.
That was the last time I would ever see Christine. She died three weeks later. My work travels take me to her home town in San Jose, and I think about her all the time. I think about her vibrancy, intelligence, and playfulness. It makes me hope that in my own death, I can have half the strength that she seemed to have.
I especially learned the lesson with Christine that just showing up is at the core of what makes a successful companion. It’s essential that the patient guides the visit based upon their own abilities, desires, and stages of illness.
Glynnis was in hospice due to a brain cancer diagnosis. She was in constant pain and discomfort, struggling to grapple with her diagnosis, the reality of death, and how to manage her living situation. “I know I’m dying. I know we’re all going to die. I get that. I’ve just got other things I’m worried about right now,” she said.
She was sitting on the couch in her small, dark, and cluttered apartment living room. Boxes were stacked almost to the ceiling and there wasn’t any clear path to walk through. The nurse who was with me during that first visit was concerned about tripping, gingerly stepping around knick-knacks, pillows, and forgotten mementos.
Glynnis had only recently been talking again with her estranged son who was living across the country. When he discovered she was dying, he asked that she come live with him.
During one of the most turbulent times of Glynnis’s life, she was about to upend her world and embark on a cross-country road trip to live with her son who she hadn’t seen in 35 years and meet her granddaughter for the first time.
I was asked to help Glynnis, and the more I learned about her, the more I thought, “Wow. I bet she really needs a lot of emotional support right now.” But my expectations were not the reality of her situation.
I spent hours with her simply getting her affairs in order: recovering email passwords, finding lost collector dolls, driving her to do errands, and taping up boxes in her living room. Glynnis’s biggest concerns didn’t seem to be related to the fact that she was in constant pain or that she was dying.
I found myself actually feeling frustrated with Glynnis. Her worries were related to such material concerns. Fortunately, she had many others helping her with the tactile details—why did she need me? Couldn’t she use this time to try and rest or come to terms with everything that was happening? Couldn’t I be more useful for that?
“I just hope my granddaughter likes me,” she told me as we drove back from the bank to her apartment. It was a sad and sweet thought—that her concerns in that moment were that her granddaughter just liked her. Glynnis didn’t like to feel misunderstood, she didn’t like the stress of having to move, and she didn’t like the idea that she probably wouldn’t be able to take all of her belongings with her.
Glynnis’s situation is a great example of the dying process being a reflection of our priorities or anxieties during life. This is the reason why it’s so essential to get our priorities straight now. We don’t need life’s anxieties weighing us down during the most impactful moment of our lives, aside from our births.
Meeting Glynnis where she was in her process helped me with my own emotional variance and capacity, coming to the understanding that she wasn’t at a place in her life where she could solely focus on her emotional and spiritual needs. She needed help in other ways and that was okay.
I’ve realized I don’t have to feel overwrought with emotion or feel at my most empathetic when I’m visiting someone who is dying. I don’t need to feel guilty if I happen to be having a bad day, am stressed, or feeling down about something completely unrelated to my visit. Being present, holding someone’s hand, or helping pack a few boxes is enough.
In many cases, doing just that has the ability to bring me out of my own head for at least a moment and unexpectedly amplify my long-term emotional aptitude.
We’re ultimately all going to go through this journey alone. The culmination of our births, how we lived our lives, and eventually our deaths, will create the natural conclusion or transformation that nature intended.
Lori didn’t seem to realize how close she was to death, despite exhibiting many of the signs one may show with only weeks to live. We never even grazed the topic, making it appear as if this was just a temporary environment for her.
Instead, we discussed how much she loved cows and milk. I painted a visual picture for her to imagine us sitting outside on the benches in the sun drinking milk and petting cows. For Lori, I knew it was essential that I meet her where she was in that moment.
Lori died the day after our conversation. I hope she found some peace in the grassy fields with her cow friends. And I hope our playful discussion could help make it all seem a little less scary.
The lack of time that healthcare providers have to emotionally care for their patients is unfortunate. Emotional development isn’t just needed for our patients and dying friends and family members, but it’s desperately needed for ourselves, as well.
In the meantime, I’ll continue to hold hands. I’ll try my best to just show up when I can. I’ll let the Christines, Glynniss, and Loris lead the way, and maybe I’ll learn a thing or two about myself, as well.