By Margaret Toman At any given time in the United States 65 million caregivers partner with their care receivers in a transformative choreography of love and letting go. While most would call the dance arduous, I think few would call it joyless. Daily transcendence of self in the name of love ultimately is liberating, although it is difficult to believe that when your elderly loved one is smearing lipstick on the lamp shades.
As a long term caregiver I can accept with grace, at least most of the time, the previously unthinkable – my mother sticking wads of chewed gum on her closet wall in hopes they will hatch or spilling warm urine on my right foot when I stand her up. But there are still those unexpected moments of vulnerability, usually when I haven’t slept well or the bills can’t be paid, that can transform me instantly from doting daughter into bristling witch. My mother is 99 now, and has advanced Alzheimer’s Disease. Because she can no longer speak intelligibly I can’t always tell if she is in pain, if she is hungry, if she needs to go to the bathroom, or if she would prefer to sit here rather than there. She waves, smiles, nods and chatters merrily at the television through the most horrendous reports on the CBS Evening News. Inherently social and gregarious, she still wants to liven the party with her sparkling personality – a customary accomplishment when she was healthy. Tonight, at this moment, she has no idea she is in danger. Merrily flirting with Scott Pelley, locked in an Alzheimer’s spell, she ignores my loud protests as I clean up the plate of meatloaf and peas she has just thrown onto the carpet. She seems not to be aware of my existence at all. Suddenly, everything in the known universe converges into a single point – ME. My hard work, my inconvenience, my sacrifice, my debts, my weariness, my hardship, my carpet, even my weight which is her fault because she taught me to love food and because she loves gingersnaps and therefore I keep them on hand and therefore I eat them, usually more than one. I know how dangerous this moment is. My mother is safe only because I practice consciously the self-vigilance and self-restraint she taught me. She is oblivious to my tantrum, but I know I am behaving like a jackass.
I march huffily into the kitchen and bang around, clattering dishes and silverware, stewing over injustices lined up in long rows in my head like rockettes, all kicking. Velcro raises her whiskered face from the back of the couch, then she too, ignores me and returns to her nap. Nobody appreciates me around here. I down four gingersnaps in a row.
In moments like this it does not comfort me to realize that 65 million other caregivers wrestle daily with the same elemental choices: Kindness or cruelty? Patience or irritation? Generosity or selfishness? Fear or love? I know which choices to make. I know better than to behave this way. But in this peculiar dance of dementia where the music is so strange and discordant, I don’t always know the steps, or I forget the steps, or I trip over my own feet in the middle of a pirouette. Sometimes, I fall.
I peer around the corner and see that my mother is still fixated on the screen. “Sweetie, would you like a chocolate milkshake?” I ask, realizing it is time for her evening Ensure. She doesn’t answer. I fix it anyway, pouring it into her favorite glass, heating it for 20 seconds in the microwave, putting in a straw. When I offer it to her she takes the straw in her mouth, still without looking at me and begins, slowly, to drink. She takes a long time. I shift my weight from foot to foot until the final drop is gone. “Was it good?” I ask, gently stroking her silver hair. Silence. Lawrence Welk rivets her attention now. She is smiling at him just like she did at Scott Pelley, swinging her legs to the Boogie Woogie Bugle Boy of Company B as if dancing in her chair. Whatever world encapsulates her at this moment, she is happy in it. That is everything I want in the whole wide world. I rename my resentment fear and let it go.
Alzheimer’s Disease is like the evil sorcerer in the Swan Lake Ballet, casting a dark spell on the beautiful swan queen that she can escape only through love and eventually, not at all. My powerlessness before the sorcerer casting spells on my mother’s brain cells terrifies me. All my love can not protect her from this enemy.
Daily, my mother and I partner in the transformative choreography of love and letting go. Our dance is arduous but not joyless. We transcend ourselves in countless moments of struggle, insight, laughter and devotion, liberating ourselves to love while we can, defying the enemy, and filling our cookie jar with gingersnaps.
Margaret Toman is a writer, speaker, advocate and community volunteer. Margaret, her mother and Velcro the cat live in Garner, NC. This piece is re-published with permission from the author.
Editor’s note: North Carolina’s 1.2 million family caregivers donate 1.1 billion hours of care per year. Family caregivers provide at least 80 percent of all long-term care services to older adults in our state, and families need to be supported in their caregiving role. Learn about AARP NC’s legislative priorities around family caregiving here and read about some of the latest proposed cuts to NC support programs here.