A Gift in Dying
I remember when my mom called to tell me that my dad hadn’t gotten out of bed at all that day. It was the end of February and I was just a few weeks into a 3 year Master’s Program for Acupuncture. My mom sounded worried and I didn’t totally understand why. I had spent much of previous two years praying for my father’s death. On this matter, let me be clear: death for someone in the late stages of Dementia is a kindness. My father had suffered a harrowing 12 year mental and physical decline with Lewy Body Dementia. It had been so long that I had been praying for his relief/release, that a part of me began to believe that it would never end. I feared that he would simply be this pitiful shell of a man, needing constant and emotionally exhausting care, forever.
So when my mom told me that he hadn’t gotten out of bed, I thought, “What a relief. Finally he left you alone for a few hours.” A day or two later, my sister, an accomplished paramedic and nursing school student, called me from his bedside to urge me to hop an earlier flight. In her professional opinion, he wouldn’t be long in our world.
I got on a plane the next day. My mom picked me up from the airport and drove us directly back to her house. When I walked into my dad’s room, the emotion in the room surged. My mom and sister said to him, “Hannah’s here. Hannah’s come to see you and say goodbye.” He moaned a little, but his eyes didn’t open. This would be his dying room.
As my dad was laying there, wasting away in coma, I watched my sister and my mom gather around him. They each told him that they loved him, that they were thankful for him, and that they would miss him. They held his hands and stroked his head. We wept together.
My sister turned to me and said, “You can say anything you need to say. He can still hear us.”
“I’m okay.” I insisted, feeling awkward. I wouldn’t be able to say what I needed to say to him with them in the room. And, it didn’t feel right to ask them to leave.
Over the next few days we would settle into a rhythm together. Hospice had arranged for a nurse to be with him 24/7 in the home and had approved a “Comfort Kit” for him: liquid morphine for pain and shortness of breath; Ativan for anxiety, nausea, or insomnia; and Atropine drops to help dry up secretions which would flood his lungs and produce the infamous Death Rattle.
Those days were hard and heart-wrenching. He hadn’t eaten anything since the day before I had arrived and had only small drops of water, sucking on little sponges we had wetted and placed in his mouth. I learned from one of the most experienced hospice nurses that the ‘a human can only survive without water for 3 days’ thing is a total farce. The nurse had seen a woman go 21 days without food or water before she died. Especially if a person has a bit of weight on their body, they could last for days or weeks in a dying-coma state. I did not find this comforting.
The familial bond between my mom, my sister, and I was forged at new depth during my father’s dying week. We held each other, we cried, we laughed, we looked through old photos, and watched family videos that we didn’t even know existed. We told truths which had never been uttered before. We played Queen, Steely Dan, E.L.O., and Pink Floyd for hours and hours in his room. We piled into the dying room, perched in uncomfortable chairs for days on end, watching and waiting for any change.
We each took up the post that we were most familiar with: my sister managed my father’s medical care, translated doctor speak for us, supervised changings and bathings, and administered meds to our father. I cooked and cleaned and tried to make sure that my mom ate something, anything.
We had an incredible team of hospice nurses posted at our house, people who truly cared about my father and wanted him (and us) to be comfortable as he passed. Among our favorites was a night nurse, named Pete. Pete was a gentle giant, towering over us at 6’7”. He was totally my dad’s type of dude. Pete was a pro-gun, pro-fishing, beer-drinking, Army vet, single dad, who lived full time on a boat which was floating in a local marina. Pete was a dude, through and through, and he was a strikingly present caregiver.
After several days of being on guard for my dad’s dying time, we had exhausted our somber tone. Earlier in the week we didn’t dare leave my father’s bedside to take a walk for fear that he would die while we were away. Each night for 5 nights we went to bed absolutely sure that he would not last and that the nurse would be waking us in the middle of the night to tell us he had passed. But each morning, I woke up on my own and wandered into his room to find that he was still there.
For 5 days, we said heavy, emotional goodbyes at each apneic episode. My dad would stop breathing for 40-50 seconds at a time and each time we would hold our breaths with him, waiting to see if it would be his last. It was intense, it was exhausting, and ultimately it was unsustainable. One of the nurses implored to us, “Is there anyone that he needs to see? Is there anyone that you can think of? ... I’ve been at this for a long time and when they hang on like this is usually because they are waiting for someone.” We had contacted everyone we could think of. He had had a few visits from family members and several skype calls with his mom and siblings in a another state.
For 5 days we played his music, his shows, and surrounded him with stuff he liked. And finally on the 6th day, my sister turned to us and said, “I can’t listen to Pink Floyd anymore... Do you guys want to watch Outlander?!”
“Thank God!” I sighed.
I had never seen the show before, but my mom and sister assured me that I would love it. As we piled into the dying room with our blankets and movie snacks, we told Pete that we would be watching a show.
“What are you watching?” He asked.
“Outlander.” My sister responded.
“Oh! I LOVE that show!” Said Pete.
“Oh?!” Said Molly, completely taken aback that this rough and tough dude’s-dude was interested in watching what is essentially an extended chic-flick/romance novel. We had just been talking about how my dad would have hated that show and never would have suffered through an episode, not even to appease his girls.
“You’re welcome to come watch it with us, Pete.” My sister offered.
So there we all were: my mom, my sister, Pete, and I, crammed into my dad’s room, pressing play on the first episode of Outlander. As you might expect from a quality romance novel, we hit soft-core porn in the first 5 minutes of the show as the lead character’s husband goes down on her in an abandoned castle in the Scottish countryside. I felt Pete begin to squirm.
“Yea.... uh.... this is NOT what I thought it was!” Pete said. He explained, “I thought you said The Outsiders.”
We burst out laughing! Of course Pete didn’t want to watch that chic-flick. He was my dad’s kind of dude and my dad would’ve hated Outlander.
We let Pete excuse himself to the living room, assuring us that if we needed anything for my dad he was right there and ready to handle it. We watched a couple of episodes together until it was time for bed. I went to my mom’s room where I had been sleeping, since she had refused to leave my father’s side and she would be spending the night with him in his dying room.
I couldn’t sleep. I tossed and turned and cried. I began texting one of my friends for support, someone who had shared with me about her own experiences with death. She texted me:
It was my now or never moment. At 2am on the night of March 6th, 2018, I walked into my dad’s room. I approached my mom, who was resting but not asleep, and I asked her if I could have some alone time with my dad.
“Of course.” She said. And she helped me to settle into her perch on the side of his bed.
I told him all of the things. I told him that I was mad at him, for not knowing that what I really needed as a little girl was to be held. I told him how important it was for little girls to know what healthy, platonic touch from men feels like and that he had failed me there. I told him that I was sorry, for not being able to tell him what I needed. I told him that I was mad at him for being overweight and for not modeling an active lifestyle for me. I told him that I had always judged his relationship with my mother, that I had sworn I never wanted a relationship like theirs, and that in the past week, learning more about their lives together.... what they had with each other didn’t seem so bad. I told him that I was sorry for him that he had to suffer the pain of not knowing how to express his emotions. I told him that I was sorry we had always seemed to misunderstand each other. I apologized for the shitty attitude I had towards him during my teenager years. I thanked him for providing for us for so many years. I thanked him for being my dad. I admitted to him that I wanted to invite a committed partnership into my life and asked him to help guide me towards a worthy man from the other side of the rainbow bridge.
I sat there with him, listening to his labored breathing, and held his hand in mine. My mom came in to check on me. I looked at her, tears streaming down my face and asked if I could lay with him.
“Of course.” She said, as she helped me to position him so there was enough room for me to lay down next to him. I curled up with him and I cried. At one point my mom came back in and moved his arm over mine so that it felt like he was holding me. I wept. It was the first and only time I actually remember snuggling with my dad.
Some time later, I sat up. I told him that I loved him. I told him that it was ok if he was ready to leave us. He died the next morning, surrounded by the love of his life and his girls.
We wept. We wailed. We held each other.
We laid his bed flat, removed all of his pillows, smoothed out the sheets, and placed a towel roll under his chin to prop his mouth closed (so that rigor mortis wouldn’t set in with his mouth hanging awkwardly open.) We kissed his head and held his body, feeling the lifeless lump of flesh grow colder and watching the color change in his skin as he began to look waxy and blood started to settle towards the back of his body. We folded his hands over his belly and waited for the funeral home workers to come take his body away.
We grieved. We grieve. And we will continue to grieve.
Of all the things I’m thankful for in 2018, I’m most thankful for that deathbed cuddle. The nurse had suspected that he was waiting for someone and I think he was waiting for me. It was his last gift to me before he died: giving me the opportunity to finally say all of the things I had in my heart.
I miss you, Daddy, more than I ever thought I could.