Literary Mama writing about the many faces of motherhood
Around the Corner

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There's a diagnosis waiting for us, hovering around the corner. My mother's internist mentioned it, once, about four years ago. "I think you have a touch of Alzheimer's," she told my mother, who then promptly forgot that she ever heard those words.

But I haven't forgotten. I've been holding that word in my pocket these past four years, keeping it close, and occasionally pulling it out, like a crumbled receipt or old movie ticket, as an explanation for all that goes wrong. But I haven't wanted to really examine it. I haven't gone for a second opinion, or made an appointment for a neurologist, or investigated the local clinic that specializes in, er, that disease.

What good would it do to put my mother through tests that she would fail? To give her an official stamp. What if it turned out to be definitively positive? Then what would I do? And if it were negative? Would we do anything differently than we're doing now?

Medications? They've been, in spite of the marketing enthusiasm of pharmaceutical ads, woefully ineffective, except for people who are On the Brink. "We need to wait," says my physician husband. "For the point when she can't do her ADLs." I remember that acronym from my old physical therapist days. ADL = Activities of Daily Living.

My mother is still independent when it comes to bathing. She draws a steaming hot bath every night and climbs in unassisted. She dresses herself, albeit in slightly stained shirts that she favors for eight days in a row. She combs her hair, although she sometimes looks like Einstein's sister. She's managing her ADLs just fine.

But not everything is manageable. Recently she called out because she could not figure out how to make a phone call. Often she cannot open an umbrella. There is no way that she can operate our high-tech television, with its receiver, separate screen and cable box. She can't drive a car anymore. She absolutely cannot set the temperature or timer on our oven. She can, however, still work the microwave.

She can sort the recycling and remember to bring it up to the garage on Wednesday nights. She can cook rice, which she does pretty much every night. I call in from on the road, on the way home, and she asks, "Shall I start the rice?" She can walk the wobbly dog, several times a day. She can converse with the neighbors next door, who adore her. When I take her to my office, she can affix labels and stamps to envelopes. But she can't use a calculator -- she, who kept my father's financial records meticulously organized, who worked for years as a bookkeeper for the National Council of Churches in Manhattan.

It is hard to stay patient, and compassionate, and to fight back feelings of stunned incredulity when she says, "I don't know how to do this." The other members of my family -- my two daughters and husband -- are better equipped than I am to face her condition. I confess that sometimes I snap at her. Sometimes I lose it and say, "Don't you remember?" No. She doesn't.

This is my mother: the woman who pretty much raised me alone as my father traveled through ten states on his sales business (he was home a grand total of twelve weeks a year, which to him was a generous "vacation time" but in retrospect, left her as a virtual single mother). She shoveled the snow from the driveway and raked mountains of leaves from the half-acre yard. She worked in the front office at my elementary school and at night, sat at the dining room table with towering piles of "paperwork." I remember the sound of the adding machine, trilling like a third heartbeat through the house. When the hot water heater exploded, she dealt with it.

It is hard to take when she asks the same question twelve, or fifteen times, and to answer it gently, as if it is the first time. "When is M coming home?" "Tuesday night." Twenty minutes later. "When is M coming home?"

My daughters will answer those questions a hundred times if they must, and they do not roll their eyes or heave sighs from their chests. It doesn't make them angry or sad or frustrated. This is just Nana. They love her. She asks questions, they answer.

It's different for me. I want to know where my mother went, the tough little woman who could do anything. She trained to be an EMT when she was sixty years old. She leaped into a pool and learned how to deliver a baby on a sidewalk. She could swim miles in choppy ocean water. She always beat me at racquetball.

She is still tough. She can still accomplish amazing things, for an eighty-four year old woman. She bowls. She quilts. She makes rice. She walks two miles downhill to town to buy herself a candy bar at the drugstore, and she walks two miles back up. She cracks jokes and goes to basketball games, following the orange ball with rapt attention.

I think I live with a lot of fear, and fear makes me angry. I fear losing her, to death or dementia. I fear that one day she won't wake up. I fear that one day she won't remember my name.

I went away for a weekend not long ago, and when I came back she said, "I missed you." She gave me a ragged little hug, something that was not a frequent occurrence during my childhood. I took it, and it felt good.

The uncertainty is hard to live with. But it's really all we have. I don't know if she's just getting older, or if that scarlet A has embroidered itself into her brain. Part of me doesn't want to know. Time marches on, around the corner, and it will tell us, or maybe it won't. We'll continue to live each day, taking care of each other, making memories that one day we'll all, eventually, relinquish. But for now, I hold them tight, here in my pocket.


Susan Ito has served Literary Mama as a Fiction Editor, CNF editor, and columnist of “Life in the Sandwich.” She edited the literary anthology, A Ghost At Heart’s Edge: Stories & Poems of Adoption. She is the author of the SheBook, The Mouse Room. Her work has appeared in CHOICE, Hip Mama, the Bellevue Literary Review, MSN.com, Making More Waves, Growing Up Asian American, the Kartika Review, and elsewhere. She is a former Fiction Editor, Columnist, and Creative Nonfiction Editor for Literary Mama.


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Hello Susan--what a moving piece. I'm forwarding it to my mom, who is worried that my stepdad has early ALzheimers... You are such an amazing writer! (I hope your mom knows this!) K.
Susan, this is so beautiful and so sad. Thank you for sharing this with us.
Beautiful.
Susan, Thank you for sharing this part of your life. My father's memory is failing -- has been for several years -- but recently it is more noticeable. I relate to all your fears and feel a kinship with you.
This is a very eloquent piece. Many of us complain, with more or less justification, about being sandwiched and stressed and pulled in too many directions. But at some point, part of the sandwich will be gone. And that will be very, very sad, and we will look back and miss that stress.
My name is Kathy, and I am the primary caregiver for my 79 year old Dad who has Alzheimer's disease and lives with me in North Carolina. I am writing a daily blog that shows the lighter side of caring for someone with dementia. Please pass this link along to anyone you feel would enjoy it. www.KnowItAlz.com Thanks, Kathy
This is a beautiful, poignant column, Susan. We went through this briefly with my mother-in-law, just in the year or so before she passed away; it was hard not to be impatient with her questions, her repeating of stories, her unpredictable abilities and inabilities. I'm wishing you so much patience and love in the years to come...
Your article is touching -- it brought tears to my eyes. Yes, this is a sad and scary situation for you. As a word of hope, I worked with Alzheimer's and dementia patients this past summer. Of course, it was easier for me, because I am not a daughter or a niece or an old friend who knew them before. But, the thing that always amazed me was the beautiful person inside. Should your mother's dementia grow deeper, she may not remember being your mother; but you might be able to see the young girl that she was. You might be able to hear stories you've never heard. There may be moments of real joy and delight even through the tears. I hope there will be for you -- but that also, it will be along time before all of that comes. Thank you for your beautiful, heartfelt article.
I'm living this with my 70-year-old Mom now--diagnoses upon diagnoses of early stages of Parkinson's, or Alzheimers, or normal pressure hydrocephalus, or dementia due to strokes, etc...there's nothing sadder. It's life with a toddler without the joy and wonder. And she is too young I think for this. You are not alone, and neither is your mother. Thanks for sharing your story.
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