Alzheimer’s disease came into my
life in January of 2001, and at the time, it seemed like
the lesser of two evils.
“It’s either a brain tumor or
Alzheimer’s disease,” the neurologist said, describing
what he thought was wrong with my mother.
“Can you get Alzheimer’s in your
fifties?” I immediately asked.
The answer was yes. You can get
Alzheimer’s disease in your fifties, in your forties, in
your thirties. The earliest reported case might have
developed in the brain of a 27-year-old. That doesn’t
matter. What matters is that it happened to my mother
when she was 54 and was a vibrant, young, energetic
woman. It happened to my mother when she was in the
prime of her life. In an instant, she was old. In an
instant, she was sick. In an instant, she was dying.
“She has about three to five years,”
the doctor told us.
I used to think it was called Old
Timer’s disease, but have come to master the
pronunciation of the scientist who discovered this
condition. He discovered the more rare form of the
disease, the early-onset Alzheimer’s that my mother has
lived with for the past four years. In that time, she
has lost many of her cognitive abilities, each falling
slowly from her consciousness, piece by piece like tiny
snowflakes that collect on the barren grass. She stopped
driving, stopped cooking, stopped cleaning the house.
She forgot how to dress herself, do the laundry, cook
dinner. Now she is having problems remembering what to
do after she goes to the bathroom. With each change in
my mother, my family and I adapt – trying to accommodate
for everything she is losing, while working to keep her
spirits up, her lips smiling. My father is her
caregiver, and so am I, and so are my brothers, and so
is her sister. We have formed a circle of love and
support around my mother and around ourselves to provide
the best care that we can. This is not easy for any of
us.
I think of my father who is 62 years
old, a dentist who still holds regular hours in his
private practice, and of the life that he planned with
my mother when they reached this part of their lives.
Those plans would have included travel, buying a
vacation home in Myrtle Beach, time with friends and
grandchildren; not dressing his wife every morning,
pulling her sixteen pills from their bottles and then
putting them in pudding so that she can swallow them.
Not arranging for her to attend an adult daycare center
three times a week and then carting her around on the
other days so that she does not get bored staying home
alone with only the television to entertain her. And
then I think of something that he told me shortly after
my mother was diagnosed, something that he repeats to me
time and time again when we discuss any change in her
condition – “Whatever is, is.”
For my family and me, Alzheimer’s
disease is what is. It is what now defines my mother and
her life. It is what has forever altered our family
structure, the way we relate, the way we live. Caring
for her is filled with challenges and struggles, sad
moments that water my eyes with tears and days that
leave me wondering why. Caring for her is also filled
with infinite joy, surprising gratitude, and an insight
that only individuals in similar situations can share.
She was just a mom to me before she
got sick. Not a person, not a friend, not another
woman, just a mom. I was comfortable with her in that
motherly role, giving advice, baking bread, helping with
homework.
Now, Mom is becoming a person for
me. I am learning who Paula Kassolis is. And I am
learning how much I like her. With Alzheimer’s
disease, I cannot expect anything from her. She
cannot disappoint me or embarrass me. She is what
she is. The more time we have together, the more I
appreciate her life and her love and her laugh.
Her laugh is the best, a steady chuckle that begins with
a roaring “Ah ha” and repeatedly peaks and plateaus, up
and down, her hand on her stomach to control the giggles
and her face red with delight. Her eyes tear when
she laughs and I think crying and laughing might be one
and the same because our bodies go through the same
motions: short breath, erratic facial expressions, red
face, tears.
I cycle through so many phases of
coping with her disease. Anger passed quickly, but
sadness resonates above my head. And today I
realize how much I will miss her, not as a mother, but
as a person. And I think I will miss her laugh the
most.
Her three to five years are
dwindling quickly. It’s been four years since her
diagnosis, and now I am just waiting. She is almost
living on borrowed time, and I am never sure of when I
will become a nameless face she cannot identify. Time is
a vacuum to her. It exists and she knows it exists, but
it has no meaning. She wears a digital watch and
can read the time back to me if I ask.
“Let’s see…eight, four,…seven,” she says. “It’s
eight forty-seven. Yep, eight, four, seven.” But
ask her what most people are doing at 8:47 in the
evening and she won’t know. Ask her what time she wakes
up in the morning and she will tell you noon.
Eastern philosophy speaks of time –
of breath time, not clock time. We can measure time by
the ticks of a clock or we can measure time with the
breaths we take to fill our lungs with oxygen. I like to
think that Mom is on breath time where the eight, the
four, and the seven are just numbers that don’t have to
mean anything at all.
A metal plate hangs on her bedroom
wall. The copper was intricately cut to emulate
both the sun and the moon and painted in a bleed of
colors — teal, purple, orange and yellow. The sun’s
exterior has twelve rays shapely carved to look like
flames of fire. Inside the core sits a crescent
moon with a face etched onto its surface. The plate is a
sundial, an archaic way of calculating time. The sun and
moon, working in tandem, depicted through metal that
draws no distinction between when one ends and the other
begins.
Nickolena Kassolis’ writing has
appeared in Sonora Review and Welter. She is currently
writing a book-length memoir about her mother’s
experience with Alzheimer’s disease. Nickolena has a
Master of Fine Arts in creative writing and publishing
and lives with her husband, Scott, in Pennsylvania.
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