“Remember that hearing continues.”
I read it in the book– the “hospice book,” as I’ve been calling it. I can visualize the table of contents with my eyes closed. So when the nurse came over last Friday and sat me down to tell me my Dad will become less responsive as they increase his medication, I said, “okay, thank you.” When she asked if I had any questions, I said, “no, I don’t think so. I’ve read the book.”
I knew this was going to happen, as if it made me any less helpless, since it lays out the process of hospice and the stages of dying. The symptoms, the signs, the feelings, and the unexpected visitors but “remember that hearing continues,” stuck with me.
I didn’t think we’d get to that step so quickly.
I didn’t think the same morning I had told my boss what was going on with my Dad, that I’d jump to the last pages by the end of my shift. My Mom texted me to let me know I had to get home right away because my Dad had been horribly uncomfortable all night, and the nurses would be here to adjust his medicine to make him more comfortable. I knew this was everything I had been dreading.
The nurse told me if there was anything I had wanted to say, now was the best time to say it. Now is the best time to spend with him because he’ll be able to respond. Eventually, he won’t be able to respond but he’ll always be able to hear me.
My Dad and I looked at each other and smiled, and I told him his eyes matched his shirt.
The nurse hugged us and said she’d be back next week, and I sat there at the table.
Two months ago, we were sitting in the kitchen eating bagels– asiago parmesan with bacon scallion cream cheese, extra toasted, to be exact. We were supposed to have thousands of mornings like that where we’d relax and eat bagels, talking about birds and nature, life and Frank Sinatra, and all of those things only the two of us equally appreciate.
One month ago, my Dad was telling me how to make banana bread, and a couple days later sat with me in the kitchen while I made tomato sauce. I can’t remember what we talked about other than how to perfect this sauce but he made it a point to stay out there with me.
A week ago, the priest from our church came over to give my Dad the Anointing of the Sick. We all said the “Our Father” together in my kitchen as my hands were shaking. After he left, my Dad said, with tears in his eyes and his voice, “I’m happy you were all here. I love you guys.” He addressed each of us by name, and told us that he loved us.
The first time I saw my Dad cry was when my Grandma died after fighting ovarian cancer for nine years. I remember he brought me to the recliner downstairs, sat me in his lap, and told me she passed away. I know in that moment she was more present than ever because nine-year-old me felt her there. My Dad says she’s been his inspiration through all of this.
Last night my youngest brother broke my heart. He helped my Mom bring my Dad to his room, pulling the wheelchair. He gave my Dad a hug goodnight then went into his room. Sobbing. I haven’t seen him cry since he woke up from a nightmare when he was a baby when he called me “LeeLee.” I hugged him and held back tears until I made it into my room so he wouldn’t see me cry. I promised him we’d figure it out, and we will regardless of how empty and heartbroken this will leave us.
My Mom has been in and out of tears, and all I can do is tell her we will be okay.
This week everything has been rapidly changing and transforming– more quickly than I can keep up with even though the book has nailed every step of our hospice journey so far. I’m probably just glued to it because it’s been my only source of explanation.
The only thing the book doesn’t quite explain is how useless it will be in preparing for the hardest thing you’ll ever go through. Regardless of how many times I’ve flipped through the pages, the spaces between the lines have more answers than the words themselves. No matter how many times I go through the steps and stages, it only reaffirms that what I’m going through is real. I have never been more exhausted than I am right now. I have never hated anything more than I do right now. The pain that is just engulfing everybody is nothing words can even begin to explain. I would do anything in the world to change this.
So here I will leave a poem I wrote last year– the only thing I can think of to remotely describe how I’m feeling:
if only for a minute i wish i could soak up the air and your smile from the day you taught me how to tie my shoes and wrap myself in vivacious beginnings over and over again. exhale the pain of every fifteen minutes my lungs have endured since malignancy became magnifying as the sun over an insect, i would frustrate over learning how to tie my shoes a million times to see your face light up when i got it right
alicia napierkowski is a writer and poet, whose work ranges in topics from women’s health, film and media, to the human experience, including love, grief, and loss. her work appears in Hello Flo, Shape, HelloGiggles, SheKnows, and The Huffington Post. she is currently writing her first poetry collection, stardust, to be published in winter 2017