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
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
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.