Ten Years Later, Am I Still Grieving Appropriately?

A personal mediation on the role of hospice care in a daughter’s grief

By Elyssa Katz, NHPCO Marketing and Communications Specialist

December 2013

I sat on the footstool. It was nestled so close to the reclining chair that my knees were pushing into the soft, black leather, forcing a dent. Both of my hands cupped his. I was on his right side and had pulled his left arm over his body to feel both of his hands at once. Every few minutes I would interlace my fingers between his and squeeze my fingertips against the back of his hand, but most of the time, his were just resting in mine. I was perched forward, my back unsupported, my elbows leaning on the armrest. My head was hovering over his. I couldn’t get as close as I wanted. His eyes were three-quarters shut and I couldn’t change that, but they were facing mine, and I know he was looking at me. He wasn’t able to do what he wanted to do, but he was looking at me, and sometimes, he would even have these moments when he could see me. That usually happened after I interlaced my fingers between his.

I smiled the whole time. Not my usual big-toothy-happy smile, but a special one, just for this time, right now. I had never used it before, and I was never going to use it again. I smiled the whole time and he smiled sometimes, when he had those moments of being able to see me, because I had interlaced my fingers between his. He was trying to see me the whole time and smile the whole time that type of smile that I was doing, but he wasn’t able to. I saw when he saw me though, and we smiled. His smile wasn’t his usual because he couldn’t form that one, but the corners of his mouth would turn upwards a bit, and his lips would part just enough for me to tell that they were parted.

I didn’t know what he would have said if he had been able to say anything. He had left me a collection of voice memos so that he didn’t have to say anything after he couldn’t say anything. Since he couldn’t say anything, I thought I should say something. I said that I loved him. I didn’t have anything else to say. I interlaced my fingers between his; he saw me for a moment, and I smiled at him, “I love you.”

I sat on that footstool with my knees all smushed and my body perched forward with my back unsupported and my elbows leaning on the armrest for a really long time. We kept doing all those things until he couldn’t do any of those things anymore, and then I kept doing all those things. Except now I kept my fingers interlaced and I kept my smile steady and I kept repeating the same three words without any pauses. I kept doing that until his hands got colder. His hands got colder and colder and then it got a little harder for me to keep them curled within mine and then I couldn’t keep them curled within mine. His hands lay open, and his hands were really cold. I laid the right side of my head against the left side of his chest. I pressed my ear deeper and deeper into the gray cotton of his shirt as I reached down for the cold, stubborn hands, and then I began to cry.

I wrote this passage when I was sixteen, days after I watched my father die in his bedroom at 3:08 a.m. on December 8, 2013. My father, Jerry Paul Katz, battled metastatic colon cancer for six years. I don’t encourage the use of the word “battle” in clinical contexts, but I use it deliberately here.

My parents were honest about his diagnosis, but only as much as was appropriate for an eleven-year-old, and looking back, only as much as would allow them to pretend that everything was, in fact, going to be just fine. My father’s first few years of treatment were characterized by language like “when I beat this thing…”. He said it to me, to his partners at his law firm where he continued to work, to our extended family, and to himself. I believed him as we made plans to take another trip to the go-karts or to get A&W root beer floats.

He was proven right, for a while, but after five years of efficacy, the chemotherapy failed, and even his own belief in his maxim became tenuous. When the experimental trial drug he qualified for proved ineffective, we were left with no curative treatment options. The once meaningful, then hopeful repetition ceased. He came home with the help of hospice for whatever time he had left. That time turned out to be three months, and our care team helped him live these months as well as possible.

Beyond attending to my father’s physical health, hospice gave us the time together that we both needed. My father had repeatedly expressed, above all else, a desire to participate as actively in my life as possible, and in addition to critical pain management, this is exactly what hospice enabled him to do. While he was lucid, hospice meant that when I returned from school each day, I could sit next to him no matter his condition. He loved to quiz me on vocabulary for tests. He loved his blended-up distortion of my Nana’s homemade pecan pie that he ate with the rest of our family on Thanksgiving. Most importantly, though, we both loved that I was there at the end. I came home from a cross country race one Saturday, and upon seeing his decline, sat by his side until I was sure I had gotten every last smile and every last hand squeeze.

It is almost unimaginable for me to now face the fact that it has been ten years since my father’s death. When he was first diagnosed, I was beginning seventh grade at a new school. My personal identity was malleable, so my role as the daughter of a sick man, and later, as the girl with the dead dad, became core to my self-conception.

Years later when I began my first professional role at a hospice organization, I learned about the terms “complicated grief” and “grieving appropriately.” As time passed and my loss wasn’t so heavy, I developed an insatiable desire to know everything about the type of care my dad received, and to help make sure others received it too.

Whether or not clinicians would classify my actions as symptoms of complicated grief or not, they have served me. Ten years later, I am still working in hospice care, this time for an organization that has the honor of supporting and representing hospice and palliative care providers of all kinds from across the nation.

The younger version of my grief would be terrified by the lack of power it has over me now, the way I allow myself to experience joy, and to speak of my memories with ease. I would like to say that I no longer live in fear that I will forget, but I cannot. I can say, however, that despite the fear I face, especially as December rolls around each year, I know that I will not forget. I choose to carry my father’s memory and legacy forward by helping support the critical interdisciplinary care team members that work each day to serve all eligible Americans. That’s the “appropriate” grief response for me.