Hospice and Parents

It was hard watching dad in his chair, tucked under a blanket, eyes closed, mumbling, “Help me,” and not know what kind of help he wanted. He hadn’t talked much in the last week. Was he thirsty? Hungry? Uncomfortable? Perhaps he was afraid of dying?

I’m often moved by the stories that Elaine, Kerry and Larry, who work in hospice, tell of the grace they encounter as people ready themselves to die, the regrets they express, the things they wish they had done, and the quiet presence that inhabits many of their last days. My friends are dying midwives, death doulas, who are like birth doulas because they help people make the transition from this life to the next.

            Last year both of my parents were in hospice care, and it wasn’t what I expected.

            Mom was suffering from dementia when she entered hospice, so we could not ask her about the stories of her youth, how she was feeling today, or even what she understood about what was happening to her because she couldn’t remember. Did she know she was dying? 

            Dad seldom talked about his feelings throughout his life. If we asked, he’d either brush us off or share a little and then move on. I hoped that now, with nothing else to talk about, and with no projects to distract him, we could talk about this. He didn’t. He was like my cat — you didn’t know what was going on inside, but you could see him limping and struggling to bend over.

            Yet, perhaps his few mumbled words, which we didn’t understand the meaning of, were speaking about the world he was entering, a threshold he was crossing. I wanted him to let loose, be illogical, be metaphorical and talk about seeing angels, butterflies, or the fabled light, even if he described it in a clinical way. I wanted mom, who had been a painter, to talk about the shapes and textures of what she was seeing. I wanted her to draw on paper and use colors to express what she could not find the words to say.

            Do parents owe their children anything when they’re dying? 

            I didn’t have a chance to say goodbye to my wife because she had a heart attack when I was at work, and I was counting on being able to talk with my parents during their last weeks — their proudest moments, their dreams and ambitions, their fears, and what they wish they had done differently. I wanted them to say if I made them proud. I wanted them to teach me how to die, as they had taught me how to be an adult, get a job, and raise a family. I wanted to hear this last lesson that they had to give. As they breathed their last breaths, I wanted to bless them as they traveled into the dark night. This didn’t happen.

            A week before he died, the family gathered in dad’s room on Thanksgiving. He wasn’t responding to our conversation, just mumbling “help me,” and his eyes were closed. We weren’t even sure if he knew we were there. We talked to him for a while, and then Marcia played Christmas music on her violin. As we were leaving, dad finally opened his eyes and thanked her.

            The hospice people kept my parents comfortable until they died. They interacted with them in many small ways, and took care of their physical needs. There was grace in this. And this, I suspect, is a common experience for many people.

            I wanted more, of course. I wanted to know if they were feeling okay, or felt lost in a thicket of broken thoughts and images. I wanted to listen to them talk about how their lives were drawing down to this singular moment that we each will face. I wanted to hear their affirmation of belief in the afterlife, or discuss their fears that nothing was there. I wanted to hear about the light sharpening as the darkness deepened, to see their eyes grow bright with meaning, even as their bodies grew cold. 

            The hospice setting I envisioned for my parents was like what my friend Elaine experienced as she sat with her husband Vic as he died. Family and friends formed a community around his bed. There were candles, soft music, and warm colors. Prayers were chanted and rituals gathered the events of his life together as the sounds of the world’s bustle grew faint. 

            I wanted my parents to feel surrounded by our presence until they passed, our hands steadying their hearts as their eyes closed the last time. And perhaps they did.