Traveling this noble, sweet, heart-wrenching passage

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Marlys Johnson, Oregon

My husband, Gary, survived ten years with late-stage prostate cancer. Ten good years. He wasn’t supposed to live that long. There were no “For Dummies” books on how to do this, so I made my share of mistakes as caregiver. But I also learned some great life lessons — lessons about slowing down with the patient; about removing my Super Hero cape and accepting help; about the importance of self-care. I discovered that people want to be part of our stories, which means we should let them love on us as we travel this noble, sweet, heart-wrenching, care-giving passage. 

Once the hospital bed was moved from the guest room — where it was a second resting spot for the restless patient — and into the living room — where it eventually became his long-term locale, I intentionally slowed down with my husband. We played Words With Friends, shared companionable mugs of hot tea, watched football, watched the fireplace flicker, watched the snow spread a thick blanket over the landscape. When Gary dozed, I picked up a book or a soft, fuzzy knitting project. It was enough to be in the same room with him. And I don’t regret a single slowing-down day (says the girl who gets her sense of self-worth based on the number of items she checks off her to-do lists).

During the slowing-down season, I learned something about Super Hero capes and the caregivers who tend to wear them long after they’re tattered and dragging in the mud. I learned that I needed to say, Yes, thank you, when kindness was offered. And I needed to ask for help. Our toilet clogged and my efforts with the plunger failed. I sent an email, whereupon a friend and his wife showed up with more plumbing equipment than an amateur plumber ought to own. And just like that, our toilet was unclogged. 

As for self-care, I thought I took pretty good care of myself during the caregiving years, but reading back through old journal entries, I became aware of the number of times I was utterly drained. “Feels like I have the flu,” Gary said one pre-sunrise morning. He had a fever and was shaking from chills. I dressed quickly and took him to the hospital where they drew blood; did an ultrasound of his kidneys, bladder, liver, his swollen leg; and pumped him full of antibiotics to fight off a kidney infection. Five and a half hours later, I brought him home, prepared his lunch, ran out to pick up his prescription, got him started on the meds … and then reported to work. Physically, mentally, emotionally exhausted beyond description. I dragged my tattered, stained Super Hero cape in the mud entirely too long. 

This thought from Ashley Davis Bush: “We live in a world that doesn’t like pain. We too might be tempted to turn from it, to keep the stiff upper lip. But grief asks us to touch pain, to sit with pain and to ask it to tea.”

It takes counter-culture courage to walk beside our loved ones as they journey toward death. The truth is: I couldn’t have done it without all those wildly generous, compassionate, meal-bringing, toilet-bowl-unclogging, would-do-anything-for-us people. I have touched pain and sorrow; I’ve sat with it and shared my Chai tea with it. And I’ve come away from the encounter more compassionate, tenacious, resilient.