John Hilmer cracked my stereotype. I believed that we women had the lock on that brand of empathy that turns a person steeped in their own life into a tender caregiver, usually on a dime!
Then I met John.
He tapped me on my rigid shoulder and proved I needed a serious rethink. So I'm grateful that my first formal chat about caregiving in my 100 conversation challenge was with a man.
John and I met over chilaquiles and excellent lattes decorated with hearts, in a sunny Mexican cafe. We started out as strangers, in our post caregiver lives that couldn't be more different, yet knowing that we were both in a community of practice called caregivers. Any distance evapourated like the morning mist when we began to talk about that.
"How are you doing, now that it's over?"
John admitted he was still grieving the loss of his mother. We sipped in a silence and brooded. Um hum, Juan made the best coffee in San Miguel. And how about that wall of bougainvillea blazing pink? I twisted my napkin around my finger. "Me too." I said, surprising myself. "I think about both my parents every day." And then we were off. His memory triggered one in me, and something I said got him going on a different track of grief transformed into tenderness and laughter and creative expression.
"How did you become the family caregiver?"
As in my family, John’s knew that some grown child needed to be present in a day-to-day way because of his mother’s growing frailty. But which child? John acknowledged it was subtle and that each of his three siblings took on different roles than the one requiring physical presence. But he also knew that the job was his. He was an artist after all, and could work anywhere, including in his Mom’s home. He was a free agent. His relationship with his mother was already established as tender and deeply loving. So John moved in. He didn't know what he would face. He didn't know how long he would face it. He had no idea how big his commitment would grow. In my family, my twin Judi was the obvious choice to take over the care of Mom and Dad as they neared the edge of their lives. She lived in the same city as they did, after all, and she worked from home. Didn't that make her "available?" It was a no brainer to me that Judi needed help. In our twin team, I became daughter at a distance, supporting her role as daughter on deck. We called our pact the Parent Project and it went on for a decade, growing in intensity with every passing year. I was always a willing ear, letting her vent or sob or feel like a saviour. We strategized our way through every challenge. More and more, I was Judi's respite. Eventually it was hard for me to say where I really lived, my home with my husband on the Coast or in Calgary. So that jolt of joy with John was realizing we shared that stellar moment in both our lives called, “yes”.
"Did your Mom have visions?"
I was startled at first. What a strange question! But in no time we were laughing as we swapped vignettes of shrivelling bodies containing swelling imaginations. Our straight-laced parents both let their fantasies loose. John had a wonderful way to characterize it. "She was following her songline", he said.
John impressed me with his heartfelt gratitude to be his mother's witness and companion through all of this. I talked about how my mother was sure that lovers scaled the 17 stories to her bedside most nights, and narcos were hunting her in the shadows of her hall, and so many ghouls danced on the ceiling. It took me a long time to shed anxiety about my mother's suffering and begin to see her strange consciousness in another way than "crazy." As she sank deeper into her own world that was not conscious awareness, I saw her on a different kind of journey. There was no day or night, no sense of time or place, no recognition most days, and the biggest gift, there was no more pain. I rejoiced in that.
"And what about the shadow? "
John admitted that his family was both a strong support, and also brought him stress. “We all had our roles and also our opinions." Dealing with conflict was simply part of what he called ‘Mom’s Care Parade'. He wondered if I had dealt with family tension. Not so much, I said. But I told him about one sad conflict. Should we twins keep feeding Mom the puree that was her nutrition when she became paralyzed, unable to swallow? Did Mom appreciate being fed when she could no longer manage on her own? Or were we twins just being cruel? One line of reasoning in the family was that our mother just wanted to let herself fade away. But who knew? That led John and me to dally for a minute or two with the real cultural challenge, physician assisted death. But this was not that kind of conversation. So John changed the subject. “I’ve written some poems,” he said. “Do you want to hear them?”
"Has your grief made you more creative? "
John’s emotions about death and dying and his mother's love infused his poetry. Her breakfast prayer moved me deeply. “Please show us your way”, she would pray… “Help us make some sense—make some good!—out of all these strange things. Amen.” That was the hope that kept Judi and me faithful to our parent project. John called it, “the raw and real experience of caregiving.” I told him about my memoir. He told me about his painting. We had responded in art to what John called “the outrageous gift of being part of the process.”
"How do you remember?"
Both our feelings have mellowed now though for both of us caregiving remains our happy haunting. Both of us hold our parent's memory in metaphors. His is light. When it dances off his canvasses and through the natural world, he feels the warm presence of his mother, and says, "hi, Mom." Mine is far more earthly. My dad loved slopping ketchup on everything. Now I can never see a bottle of Heinz without a gentle memory of him wafting through my soul. And then there was that common flower my mother loved. I’ve filled my garden with daisies.
My first conversation with caregivers convinced me that we are better people by sharing our stories of that special journey we have all taken to the edge of life.
John would welcome you to his website www.johnhillmer.com.
And I welcome you to my blog. Post your comments and please share. What questions do you want me to ask in my hundred conversations? What spells quality for you in end of life care?
it's about the journey
Caregiving was my first and finest journey. Writing this book about it was the next. It lends support to other caregivers who say, "that happened to me too." I'm on another journey now, advocating for caregiving and an activist to bring on better ways of thriving as we age. It's all brought me purpose and meaning, Come along and get some of that too! I'd love to share your stories. Boldly speaking out about our experiences makes us all part of the change we want to see. So
Join me! Let's talk!