Posted 10 April 2008
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Foreword to Living Alzheimer's by Lisa Genova, Ph.D.
Read Interview with Lisa Genova
Now close your eyes. What image do those two words evoke? What do you
think of? Whom do you see? I see an eighty-five-year-old woman
with short, white hair, wrinkled skin, and polyester pants. I see her
forgetting when she ate breakfast and when she was born. I see her
forgetting where the bathroom is and where she lives, forgetting
the name of the United States President and the names of her children.
I see her forgetting her own name. Forgetting me. I see my grandmother.
You might have imagined your own grandmother. Or your elderly parent.
Maybe you don't know anyone with Alzheimer's. Maybe you imagined Gena
Rowlands in The Notebook or Julie Christie in Away From Her.
Most of us know what Alzheimer's disease looks like. Or do we?
Alzheimer's is not a disease reserved exclusively for the elderly.
Early-onset Alzheimer's is Alzheimer's before the age of sixty-five, and
there are currently an estimated 500,000 people in the U.S. who fall
into this category. And, in 2008, this estimate is in all likelihood
remarkably low, as early diagnosis continues to be a challenge. General
practice physicians are often reluctant to diagnose someone so young
with an incurable, fatal illness. They instead point their fingers at
other more common and manageable culprits. Doctors, patients, and
families pass off symptoms, often for years, to too much stress, not
enough sleep, depression, or menopause. And most people believe that
forgetting is a normal part of normal aging. We don't look to diagnose
and treat something that's considered normal.
But what happens in the case of the forty-five-year-old executive parent
who starts forgetting how to get home from work, to go to meetings, and
how to operate the coffee maker? It's easy to imagine that these types
of symptoms—highly noticeable, out-of-character, and disruptive in the
life of someone so young—can only be ignored or mistreated for so long,
and despite the various hurdles to a diagnosis of early-onset
Alzheimer's, it is ultimately found.
Like most people who come to know Alzheimer's in a loved one, I've read
and learned a lot about this disease, from the molecular and clinical to
the self-help and how-to-care-for. But for the most part, what we know
about Alzheimer's is gleaned from experience with elderly people
diagnosed well into the progression of this disease. Because we as a
culture expect eighty-five-year-olds to be normally forgetful, because
retired grandparents are no longer accountable to corporate bosses,
because they don't have to produce a certain number and quality of
widgets each day, because they might be widowed and living alone with no
one to regularly witness the full extent of what is happening, because
it is far easier to deny what is happening well after we suspect it or
even trip over it, we don't usually see Alzheimer's in its beginning.
And unfortunately, once this disease marches past the beginning, we can
no longer really know what that beginning was like. Beyond the
beginning, clogged synapses, faulty neurotransmission, inflammation, and
cell death take the upper hand. Beyond the beginning, those parts of
the brain that mediate memory and language and that inform awareness and
identity become increasingly inaccessible. People with Alzheimer's
who've deteriorated past the beginning stages can no longer remember the
recent time period of their personal history that was 'the beginning.'
They can't describe what it feels like to have Alzheimer's disease
because those communications skills aren't working. And more
confounding, they may no longer be capable of understanding that they
even have Alzheimer's disease.
We know what Alzheimer's disease is like from the point of view of the
caregiver and healthcare professional. We know what it is like from the
view of the Hollywood director. But what is having Alzheimer's disease
like from the point of view of the person with Alzheimer's? What does
it feel like to have Alzheimer's?
This book is an attempt to see what we can further learn about
Alzheimer's from the people who inhabit it, from those who are still
early enough in the disease to communicate the feel and impact of what
is happening to them. The people I interviewed for this book have all
been diagnosed with Alzheimer's, they are all in the beginning stages of
the disease, and they are all young—in their forties, fifties, and
I asked each person questions aimed at understanding what it's like to
live with this disease. I asked questions about the things you might
expect, about the dramatic changes that this disease precipitates—the
abrupt end to fast-paced, high-powered, and personally fulfilling
careers, a shift in or relinquishing of certain responsibilities at
home, and planning for a new kind of future, one they never had imagined
having to age into. I asked questions about loss of status and
friendships. I sat ready to absorb stories of the anger, frustration,
and fear I imagined could be palpable every minute of every day.
We indeed talked about those obvious things, but no one would dwell
there. Their losses comprised only part of the picture, part of what
the beginning is. What each person wanted me to know, what I couldn't
have predicted and what I couldn't steer them away from, were the
significant ways in which they are truly and deeply happy and at peace
in their lives. Even now, I hesitate typing these words. I don't want
to oversimplify or minimize. I don't mean to romanticize this disease.
Alzheimer's is dark and brutal and rips apart neurons and relationships
and dreams for the future. Maybe this is surprising to hear, but there
was very little talk in these conversations of doom and gloom,
heartbreaking sadness, the grim reaper lurking in the shadows behind us.
What I witnessed, without exception and over and over, was a joy and
gratitude for life.
In these individuals living in the beginning stages of Alzheimer's, I
saw a mental calmness and clarity, not denial or despair. These people
are highly focused on the stuff that matters and undistracted by the
stuff that doesn't. They have a laugh-out-loud sense of humor about
their disease. They have a strong sense of purpose and spirituality and
connection to God. They are all extremely present in their lives,
available to their families and loved ones and unafraid of expressing
their love for them. They are all exercising and eating healthy diets.
With pasts that are increasingly difficult to remember and futures that
no one is in a hurry to get to, these people are all choosing to live
now, in the moment. I felt calm, happy, and inspired talking with them.
It certainly was an extraordinary experience, to witness such positive
thinking and peace of mind in minds that are quite literally
They and I realize that this is all for now. For now, Alzheimer's is a
story without a happy ending. For now, this disease eventually laughs
in the face of Aricept and kicks Namenda aside as it marches on its path
of destruction. But for now, Aricept and Namenda are holding their
ground enough for these individuals. For now, these individuals with
Alzheimer's are able to adjust and actively participate in life, to
advocate for people with Alzheimer's, to enjoy their families and
friends and what is beautiful in the world around them, and to love
fully. And they do.
In the following pages, I offer you conversations with ten people who
reveal to us what it means to live in the beginning stages of
Alzheimer's disease. And in doing so, they also reveal to us what it
means to live.
Lisa Genova, Ph.D.
VOICE OPEN MOVE