Hospice from the Inside

Every interdisciplinary team of which I have been a member has had a particular and consistent reaction to the case description of very sick patients under 60 years old. Sort of a collective “ooph,” like everyone in the room has just been sucker-punched. I’ve seen this over and over again. Even the most experienced nurses and physicians do it. And I’ve been a part of it too, emitting a soft groan along with everyone else (less and less soft the younger the patient might be) at the moment of recognition. So I couldn’t stop myself from imagining what happened at the hospice team meeting, my old team from before I moved away, when my mother’s case was announced.

I had worked at that hospice for two years, and was just about to move from the same area where my parents lived to a new hospice job in the city, when my mother was diagnosed with pancreatic cancer. She helped me move into my new place in Brooklyn between chemo treatments, her body already too weak to do much more than place a few glasses in the kitchen cabinet, and she assured me that she thought she could survive this. I nodded, but I didn’t believe her.

I knew that she knew it was her last Christmas when she allowed us to take photographs of her all by herself in front of the Christmas tree a few months later. The chemo had stopped working and we were hoping for clinical trials, but those never panned out. It was probably synchronicity that I was laid off from that new job in the city in late February, about two weeks before the doctors told her that they had no more treatment for her.

My sister and I both rushed home that night, a Friday, arriving well after midnight, and the next morning the four of us squished together in a too-small loveseat and talked about how we wanted to spend our last few months together. They were telling her she might live until summer. She wanted to make a bunch of baby quilts for us to give to her hypothetical grandchildren one day. She was hoping maybe she’d have more time than they thought. We all cried.

That ended up being the last real conversation that we had with her. A few hours later she entered a terrible pain crisis, so bad that she couldn’t do anything but tremble and whimper. My dad called ahead so her oncologist could set up a bed in the hospital. Once she got there and got on her Ativan and Fentanyl, she was never truly lucid again. She had hallucinations of tiny green men walking on her hospital tray, and once frantically instructed my sister to “quickly, throw apples out the window — in protest!” We laughed hysterically at the silly things she would say.

She went home on hospice on a Wednesday. I remember pulling the admission nurse aside and asking quietly — out of earshot of my family — how long she thought my mother would survive. She said, “She’ll probably be gone by the weekend.” But my mother’s will to live, against all the evidence telling her it wasn’t going to happen, was incredibly strong. She lived for another three weeks after that, including ten days comatose, actively dying.

Those three weeks were some of the most hellish and the most precious that I have ever lived through. Her Ativan caused a terrible delirium. She would wake up in the middle of the night and demand to know where we had taken her and why we had “added new rooms to the house” without telling her. One time she caught sight of herself in the mirror, then turned to me with a horrified look on her face — I got the feeling that she believed the mirror was a window or a living picture frame like in Harry Potter — and said, “Who’s that?” She was 5’10” and 108 pounds, way too weak to walk, but she didn’t realize that and would demand, exasperated and irascible, that we let go of her arms and let her walk alone, and would cry with anger and frustration when we refused. We could never leave her alone, and my father, sister, and I took turns each night laying beside her, ready to jump if she awoke and a new ordeal began. We used walkie-talkies to radio for the others when the person on duty needed help, which was a frequent occurrence. We mostly didn’t sleep.

Daytimes were a different story. My mother insisted on going downstairs to the living room to receive guests each day, and there were often 15 people or more in the living room to visit her. She was an elementary school nurse, and a very social, active person who was well-known in her communities, so people just flocked to see her. The house that I grew up in became a strange sort of place, familiar but unfamiliar at the same time.

The music therapist from hospice came a few times — the music therapist that I had helped to hire to replace myself. I’m afraid that I ended up leading all his sessions, asking my delirious mother, or other family members, or any of the myriad guests to choose songs that the music therapist would play on the guitar while my sister and I sang. We weren’t about to talk or sing about anything serious, though. We were swimming in horror and we couldn’t even think of using music to dig ourselves deeper. We truly might not have survived.

I played and sang for her myself every day, sometimes alone and sometimes with family around. One of her close friends repeatedly asked me to sing “My Way,” and marveled at what an appropriate song it was for my mother’s personality, while I sat with my ambivalence, thinking of all the times I heard people say that about their loved one. It was almost surreal to hear it applied to my own mother. Even if it did kind of fit, it just felt like a hospice cliché. But I watched my mother’s people cry as I played it, and thought about the power of music bitterly.

When she entered her coma, I continued to play for her each day. The guests had abated now, and the days were long and lonely. Even her best friends went back to work to wait until it was time for the funeral. We went to bed every night dreading that the next day would be just like the previous one. My sister, an OT, was helping the aide with my mother’s personal care — a task she found wrenching and yet she couldn’t not participate in it. In a way, playing music and keeping the reality of my mother’s forthcoming death in our minds was my own version of this. As far away as she felt, and as angry as I was with her for not just dying already and letting us out of this hell, I found a strange connection to her in the music. She was groaning with every breath during these last ten days, as I had heard other actively dying patients do in the past, and I discovered that she would change the pitch of her groans to match whatever musical key I was playing in. Every day it was the same. I would switch from D to C or A to Bb just to confirm for myself that it was true. My mother was a breathing skeleton who should have been dead 25 days ago, and yet here she was musicking with me. And I played her favorite songs constantly, changing keys as much as my guitar proficiency would allow. Today, Here There and Everywhere, Our Love is Here to Stay. And I felt morbid and connected to her and angry and questioning of what was real.

On the evening of April 7, 2008, I slipped away from the rest of the family to check on Mom, like I had done many times in the past week, hoping that she had finally let go. She had been apneic for days, so I had to lay ever-so-still beside her to count the seconds, watching if she took a breath. When I realized that she really was gone I stayed with her for a few minutes by myself, my own breath caught in my throat. Then I called my father. He didn’t believe me and we had to count again. And then we knew it was true. We called the hospice nurse to pronounce her. The funeral home came and took her body away.

The next day I received a call inviting me to schedule an interview for a new position on a palliative medicine consult team in a Manhattan hospital. We did two viewings that were extremely moving and memorable; my sister and I sang at Mom’s funeral. My Dad and sister went back to work full-time the next month; I got that job in the hospital a few weeks after that, but only worked part-time for the next year and a half. I devoted more than half of each week to just grieving, letting my professional work push my grief process along and hoping that my exceedingly painful grief experience would one day enhance my professional work.

Sometimes, looking back, I wonder about how much this personal experience did change the way that I work with patients, and I think the main difference is me on the inside, something subtle and intangible. It can’t be identified in anything that I do or think differently in session. But I know I learned how unbelievably hellish an end-of-life experience can be, regardless of the kindness, attentiveness, and skill of the hospice workers, and regardless of the beauty and preciousness that might also lurk. Perhaps I know it more fully now, that we really can’t make it better, that dying can be oddly unpredictable, that there are no clear answers. Perhaps I learned that sometimes we — sometimes our patients and families, with us beside them — have to put ourselves through hell, because that’s the only loving path available.

6 thoughts on “Hospice from the Inside”

  1. Thanks, Will. What else are blog entries for? I’m glad that you got something out of my piece. Best of luck with your blog and your journey, and thank you for reading!

  2. Gosh, Meghan, I don’t know how I completely missed your post. Thank you for articulating with such great care the insanity and beauty of watching your parent die. It’s an awful and amazing experience all at the same time. I remember thinking what a complete state of limbo it felt like for my mom, my brother and me to take care of my dad as he struggled through terminal agitation and finally slipped into a coma at the end. I don’t have any great insight to offer- just appreciation and a quiet sadness that we’ve gone through this.

  3. One of the many moving statements in your post is of your mom’s groans matching the pitch of your music as you went from one pitch to another. As people approach the end, their life-affirming acts can be more and more subtle, and we can learn to be more and more attuned to those nuances. –Chaplain Karen

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