Oct 26, 2011

Climb Every Mountain, So I Do

“Please don’t let me strangle my mother,” I plead silently as I try for the umpteenth time to coax her hand into the sleeve of her sweater.

By Margaret Toman

She is sitting on the edge of her bed holding her arm stiffly against her body, refusing to unbend her elbow. It is still dark outside. She has a 9:00 geriatric appointment and we are already behind schedule. “Sweetie, please straighten your arm out so I can get your sleeve on.”

She ignores me.

She has been resisting or ignoring me since the arduous choreography of our morning began an hour ago. Is this Alzheimer’s Disease or is it Missouri Mule?, I wonder. And would it be easier or harder if I knew the answer? Sorely tested, I pace endlessly between light and dark under the tutelage of Alzheimer’s Disease.

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Taking stock, I slow myself down and offer my mother a cup of warm, coffee-flavored Ensure.

From the CD player in the living room, Frank Patterson’s Irish tenor swells, “My heart will go on and on.” I try again. “Sweetie, please straighten your arm out.” She doesn’t.

Suddenly I remember an obstinate moment from my early childhood. I try now the same manipulation my mother did then, rolling my eyes in exaggerated fashion and pleading in a high pitched tone, “Please, pretty, pretty, pretty ple-e-e-e-ase,” batting my eyelashes like Bambi and grinning goofily from ear to ear. I feel ridiculous but this time she gives just a little and I maneuver the sweater over her elbow and pull it up to her shoulder.

“Take that, AD!” , I say silently to myself.

I select pearl earrings from her jewelry box asking for approval that may or may not be granted and apply Revlon’s Fire and Ice to her lips.

My mother is stunning. Slim and shapely in white slacks, white blouse and navy blue vest with red and white embroidered flowers, her silver hair curled softly around high cheekbones, my mother is still stuning at nearly 98 years of age. At the moment we are a study in contrasts – she a runway model and I, exhausted and sweaty from the morning’s rigors, a candidate for animal control. “You are the wind beneath my wings,” sings Frank Patterson. “Smile,” I say and to my relief she does.

“Come on, Gorgeous! Up on your feet! One-two-three…”

Gathering strength and courage in equal measure I lift her to standing and wait a moment while she finds her balance. “Okay, Missouri Mule, let’s go!” I smile and holding both her hands, I walk slowly backward pulling her lightly toward me out of the bedroom, down the hall to the bathroom. It is a daily journey of intense concentration, a calculated risk to avoid her dependence on a wheelchair until there is no other choice. Still, it frightens me. Falls are the terrifying unknown.

The bathroom is small. She balks at the transition from solid carpet to patterned flooring. I coax her in and position her directly in front of the toilet. “Don’t sit yet,” I say as she begins to sit down. I catch her around her waist and pull her upright again. “Hold onto me,” I say several times before she does and then I am able to slip her slacks and Depends down and seat her on the toilet.

I use the same words every morning: “I’m going to go make your bed up. I’ll be right back. I love you. Will you be alright here for a minute?” I kiss the top of her head. She doesn’t respond today. I scurry down the hall, make up her bed, fluff her pillows, throw the daily laundry into the washer, add detergent, press the start button, scoop out the litter box, pour in fresh litter and collect the garbage bag. Frank Patterson is launching into “Amazing Grace” when I appear at the bathroom door.

“Are you through, Sweetie?” She doesn’t answer. I try again. “Mom, are you finished going to the bathroom?” “I don’t know” she finally responds, barely audible. She is telling the truth. I know that now. Alzheimer’s itself has trained me. But in the early years of her disease my mother’s refusal to cooperate outraged me, repeatedly made me late for work and was almost surely a factor in my job loss.

Like a defiant, manipulative child she would request a favorite food for dinner then turn up her nose and refuse to eat it. Or stuff it in her pockets and claim “the children” had stolen it.

One day I found pink mold growing on the wall of her closet. When I examined it closely with a flashlight it turned out to be chewed wads of “Big Red” chewing gum. “Don’t bother them, they’re going to hatch,” she declared, her green eyes wide with sincerity, a moment that to this day leaves me paralyzed between laughter and tears. Either is appropriate.

Living with a parent with Alzheimer’s Disease has been called a second adolescence. It is. I, too, have behaved badly sometimes, a self-centered 13 year old girl in a 65 year old woman’s body, subjecting my ill mother to my impatience with behaviors she could not help and of which she was probably unaware.

For months I apologized to her repeatedly while I whirled in anguished circles of love and resentment, of truth and denial, of trust and disbelief. Is this her or is it the disease? Is this real or is it an illusion? To this day, I don’t always know.

Alzheimer’s Disease is a universe indifferent to time.

Like millions of other caregivers I live intensely in the present, caring for a person who no longer knows past or future. I try to bring order and comfort to the present but there is no road map. The disease sets the rules of engagement, manifesting itself differently according to the brain it inhabits.

Nobody on earth knows yet the origins or cure for this thing. What reality is like for my mother at the moment I can’t imagine and she can’t tell me. I continue to love her because I don’t know how to stop. There is still music in our home and laughter and fragrant food. Even though it’s just the two of us I try to create a comforting, playful atmosphere hoping, because I don’t know how to stop hoping either, that she still feels my love. My grief spans universes.

The reward for my devotion has already arrived on a graceful arabesque of insight, my yielding to forgiveness as the only way forward. I will forever be both loving and flawed. But perfectable. Forgivable. Like my mother.

Like everyone I have ever known and loved. This road has gentled me. Take that, AD!

“Are you ready to get up, Sweetie?” I ask my mother. She nods. I sniff the air cautiously, help her to her feet and guide her hands to the walker in front of the toilet. There is nothing in the toilet but water. And then suddenly the air is thick with odor and there is feces on the toilet seat, in the toilet, on the floor, in her clothing and on her shoes. I look at the clock.

“Climb Every Mountain,” sings Frank Patterson. So I do.

Margaret Toman is an Alzheimer's caregiver, and cares for her 97 year old mother, Lou Longest, who is in an advanced stage of Alzheimer's disease. They live together in Garner, North Carolina.

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Original content Margaret Toman, the Alzheimer's Reading Room