I experienced all those emotions throughout my time helping to take care of my father, yet nowhere in the late stage does she list acceptance. Acceptance is the elusive moment when you stop wondering, “How could this have happened to this person I love so much?”; when you stop praying for death (euphemistically referred to as “peace” or “release from suffering”); when you can look at the person you love so much and think, “This is what it is. I have felt sad and resentful and guilty, and I still want you to be released from your suffering, but the only thing left is the love I feel for you.” Without acceptance, there can’t be solace and closure.
The husband of American writer Abigail Thomas was severely brain-injured after being struck by a car. When she realized she couldn’t care for Rich at home, Thomas admitted him to a long-term care facility. Her collection of essays, A Three Dog Life, relates how she learned to cope with the unwanted changes to their marriage and her life. In the essay “Guilt,” Thomas writes about how she looks at Rich and can’t believe this happened to him. Through her mind run all the ways she wishes she could go back and prevent the accident. “But it passes,” she writes. “Rich is necessary to my happiness; I love the person he is now, I love who I am when I am with him, and I can sometimes hold these two truths in my head at once: I wish he were whole, and I love my life.”
Acceptance is a form of hope, a way of understanding that what happened to the person you love isn’t necessarily the tragedy we are conditioned to believe a catastrophic life event to be. The hardest part of acceptance is realizing that this is how life goes. The Sufi poet Rumi wrote what I believe should be the official poem of caregivers. In the opening of The Guest House, Rumi writes, “Every morning a new arrival. / A joy, a depression, a meanness, / some momentary awareness comes / as an unexpected visitor.” He closes the poem with a profound expression of what acceptance is: “Be grateful for whoever comes, / because each has been sent / as a guide from beyond.” When I read those lines, I think of my father, trapped inside a weakened body made useless by a decaying mind, and I hope somehow he has found a way to accept his state as well.
“That’s the mystery of the whole thing,” Janzen says. “You can’t prove it, you can’t demonstrate it. You can just believe it and live out of it and leave the rest of it to God.”
My father is now confined to a wheelchair in a private room. My mother has covered one large bare wall with photographs of their two daughters and four grandchildren; most often, Dad sits facing what we call “the memory wall.” She feeds him twice a day and sits with him for a while after the meal.
One evening, Mum says, “I heard him very clearly say the word ‘no.’ When I looked at him, he was staring at the top of the wall. Not at the ceiling but up there, above the photos. He’d been restless all through supper, moving his arms and legs, but now he was sitting absolutely still. As I watched him, he said, just as clearly, ‘yes.’ Then after a moment, he dropped his gaze and started to fidget again.”
I like to think the exchange went something like this:
Reg, this is God. Are you ready to let go yet?
Reg, would you like to stay a little longer?
The man who raised me is still here.
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