Every Wednesday

Every Wednesday I will post something about grief. Sometimes it will be a reflection on an aspect of grief’s landscape. Now and then I will share from my own journey of grief, because in the sharing of our stories we find strength and build a community of people that support one another.

Wednesday, February 1, 2017

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 haven’t written much about hospice because I hadn’t had any direct experiences.

I have written about a couple of my friends who work in hospice (Elaine Mansfield, Kerry Egan, and Larry Patten), and I’m often moved by the stories they tell of the grace they encounter as people ready themselves to die, the regrets they express for the things they wish they had done, and for the quiet presence that inhabits many of their last days. My friends are like birth doulas, midwives, helping 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. We could no longer ask her about the stories of her youth, how she was feeling today, or even what she understood about what was happening. Did she know she was dying?

We felt a great unknown. Because she did not speak, mom could not tell us what was going on behind her blank face. Yet there were brief openings into her world. One day mom held on to niece Mandy’s arm, rested her head against it, and wouldn’t let go. On another day mom put an arm around daughter Linda and looked up into her eyes for a long time. When words could not be shared, there were these moments.

Dad kept pushing to keep going at home until he couldn’t. By the time he agreed to go to assisted living, his body was worn out, and his hip was bothering him so much that he couldn’t sleep. A month later he transitioned into hospice care, and drug levels were increased to blunt the pain, but they also made his mind fuzzy and he became a different person.

He had always been decisive, saw what needed to be done, and did it. He was always busy on projects, but these last few months, he just sat, his mind numbed by drugs to keep the pain in his hip at bay. Perhaps he felt lost without something to do. Useless. Confused. Or trapped.

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. In hospice, we knew that the chances of him talking about what was going on in his interior landscape were slim. Yet I hoped that now, with nothing else to talk about, and no projects to distract him, we could talk about this. But I think the drugs got in the way.

A week before he died, the family gathered in his room on Thanksgiving. He wasn’t talking and his eyes were closed. We weren’t even sure if he knew we were all there. Marcia played Christmas music on her violin, and 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 much grace in this. And this, I suspect, is a common experience for many people.

I wanted more, of course. I wanted to know that they were feeling okay, or if they felt lost in a thicket of thoughts.

I wanted to listen to the wisdom they had gathered over the years, and listen to their thoughts about how one draws life down to this singular moment. I wanted to hear their affirmation of belief in the afterlife, or to talk over their fears that there was nothing there. I wanted to hear about the light sharpening as the darkness grew, to see their eyes grow bright with meaning, even as their bodies grew dim. I wanted to hear their blessings for me, and I wanted to bless them as they traveled on into the dark night.

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

We want them to be themselves, to be authentic to who they were, to die as they lived. We also want them to teach us how to get ready to die, as they taught us how to be adults, get jobs, and raise families. We want to hear this last lesson that they have to give. Ultimately, how they die is their choice.

The hospice setting I envisioned for my parents was like what my friend Elaine experienced as she sat with quietly 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 his life together as the sounds of world’s bustle grew dim.


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.

4 comments:

  1. Oh, Mark, this is so poignant and deeply moving. Thank you. Even though I sat with Vic in his last hours, I couldn't ask him how he was or how it felt to be leaving the body. It felt important to read sacred passages and poetry (or music in your case), but did it matter to him? I can't say for sure, although the room felt like a chapel in the last days. Other than one last deep look and hand squeeze for the son who made it to his dad's bedside just in time, Vic was quiet. Even then communication was wordless. Just like your dad and mom, he taught me and our sons how to die by the way he lived and in the practice of kindness which he took up when he received an incurable diagnosis. I believe your parents felt your presence as they passed, but I KNOW it mattered to you to be there. Maybe that last exhalation is the main teaching we need about dying.

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    1. The practice of kindness, even in death. A lesson of living, even in death. We share our love with those who are dying, even beyond death. Thank you, Elaine, for your inspiration.

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  2. They felt your presence.They knew. And they still do.

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