When I chose to watch Gracie, rather than continue teaching, I knew that my choice was the best gift I could give to Gracie because she spends her weekdays with someone who loves her and whom she loves, and this gives some peace of mind to my son and daughter-in-law while they are at work. At the time I made my choice, I thought I was giving Gracie (and her parents) a gift, but it turns out Gracie gives gifts to me too.
Charles Dickens begins his novel A Tale of Two Cities with these words, "It was the best of times, it was the worst of times...it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us...," and these words pretty much sum up the dichotomy of my life nowadays because I am a caregiver for my toddler granddaughter, Gracie, and for my elderly husband, Gordon, who has dementia, both of whom are in diapers.
Gracie wakes up full of joy each day. She laughs and talks to her stuffed animals. When you enter her room, she greets you with a delightful smile and makes you feel like the most special person in the world. While I change her diaper, she "talks" to me, giggles, plays peek-a-boo, and while helping me change her out of her jammies and into her play clothes, bestows a surprise kiss when I least expect it. Days spent with Gracie are the "best of times" because they are full of fun, love, and wonder; days spent with Gracie are full of "hope" because she has "everything before" her.
If caring for Gracie is the "best of times," caring for Gordon is definitely the "worst of times." Gordon awakens with groans and moans and swear words. His Frontotemporal Dementia, very different from Alzheimer's, makes him apathetic, indifferent, and lacking in empathy. He does not acknowledge us very often, and usually only in relation to a want of his. He wears diapers too, but he won't let anyone help him, so he changes it himself, getting poop all over the bathroom. Grant and I clean up these messes, Grant with a resigned sense of humor, and I with disgust, loathing, and gagging.
I marvel at the difference I feel in dealing with one diaper versus another, and it boils down to love. I love Gracie with all my heart, but I no longer love my husband. This may sound shocking or wrong, but what is left to love after twenty years of dealing with his worsening dementia, twenty years of cruelty, indifference, apathy, and self-absorption, twenty years during which I lost my husband, the father of my children, my home, and my financial security, twenty years of facing an abyss of meaninglessness and despair?
Part of the joy of caring for Gracie is her open heart. This child accepts and loves her humans, no matter what form we come in, and she, to my amazement, cares for Gordon. It is a wonder, truly and deeply, that I have pondered for many months. The man barely notices her, does nothing to help her or keep her safe, does not hold her, but she notices him and does her best to get him to notice her. She waves at him, claps at him, toddles in front of him and stops to make him stop walking. She chatters at him. And when he occasionally says, "Gracie Marie" or claps with her, she beams like she's grabbed the gold ring. This leads to some amusing situations, like when she was clapping at him, and Gordon began to clap his pee jug (fortunately empty) that he carries about. I thought at that moment, "You can not make this stuff up."
Gracie's acknowledgement of Gordon is one of Gracie's gifts to me. Her open-heartedness re-kindles in me some of the light that's gone out of my world. During Gordon's twenty years and counting of dementia, I have frequently lost hope, joy, and faith, each day looking darker than the day before, with no light at the end of the tunnel, a seemingly endless "worst of times." Now, though, Gracie brings her light to my dark tunnel when her life intersects with mine. She doesn't take away the darkness of Gordon's dementia, but she brings the light of love and hope, and she brings a new way of seeing things, a way of laughing at the horror instead of being overwhelmed by it. She sees with fresh eyes what my tired eyes were no longer capable of seeing--that is, she sees Gordon's humanity, and she reminds me of this each time she beams her smile at him.