Hello
Everyone,
So many helpful books and blogs are written about
Alzheimer’s and dementia. I remember spending hours, day after day, searching
online and on Amazon for written material to help me with my caregiving
journey.
During June, Alzheimer's and Brain Awareness Month,
Marianne Sciucco, Vicki Tapia, Shannon Wiersbitzky and I have taken on a
mission – to make it easier to find resources for those whose lives are
affected.
We’ve approached 20 other authors who write
about dementia, asking them to explain why they wrote their books and we will
be posting those articles on a new blog AlzAuthors.wordpress.com.
Those articles will also be cross posted on our own blogs.
As an intro, here is a piece written by Marianne
Sciucco.
We are AlzAuthors, four daughters
who have experienced the pain and loss of a loved one with Alzheimer's disease
or dementia. We know the pain of being forgotten. We have all witnessed decline.
Most of us have provided countless hours of caregiving. Although we haven't met
personally, we have found each other through the books we wrote to share our
experiences and become friends. We have all chosen to write about our personal
and painful dementia stories to help others who may be on their own journeys. Together
we advocate for those with dementia and their families, providing education and
awareness of a disease projected to affect 131million people worldwide by 2050.
Our stories can serve as guides to the disease process, a caregiver's handbook,
or simply the catalyst to much needed conversations among families.
One year ago, we formed a
collaboration to pool our talents, skills, and resources to raise awareness
during June, Alzheimer's and Brain Awareness Month. This campaign resulted in
exposure across dozens of Alzheimer's and dementia websites and blogs and
social media. We have come together again to continue our mission to educate
and enlighten. This time, we are featuring the work of other authors writing on
this subject, to increase exposure of their work and to enable caregivers to
discover work that may help them get through their challenging times. It's also
an opportunity for caregivers and others to share their dementia stories. Let's
start a conversation!
AlzAuthors is:
Jean Lee, author of Alzheimer's Daughter, cared for her
mother and father who were both diagnosed with Alzheimer's on the same day.
"I wrote the book I needed to read while caregiving for my parents,"
she says. Jean lived only one mile from them, and her only sibling, a sister,
lived 1,000 miles away. "She suggested I keep a journal of things that
concerned me about our parents’ health and safety," Jean says. "The
journal allowed us to be proactive rather than react to a crisis. I only shared
my parents’ illness with a handful of friends and coworkers. I remember them
telling me I should write a book about this dual decline. I was too busy trying
to stay afloat to give any thought to writing about the experience, except in
my sister-journal. However, less than one week after my mother died, while
visiting with my dad, I saw he had no memory of Mom or their 66-year marriage.
I was stunned, and at that point came to believe my journal could become the
core of a book honoring my parents’ love story and documenting their
simultaneous decline." Her memoir Alzheimer's
Daughter is a beautiful but poignant tribute to her parents and a source of
support for caregivers.
Vicki Tapia also cared for both
parents. Her mother had Alzheimer's and her father had Parkinson's- related
dementia. Vicki chronicled the days she spent with her parents caring for them
in their home and then throughout assisted living facilities and nursing homes
until their deaths. These diaries became the foundation of her book, Somebody Stole My Iron: A Family Memoir of
Dementia. Filled with personal lessons learned along the way, ideas and
tips for managing the day-to-day difficulties of dementia, and useful
information from experts within the field of Alzheimer’s research, this memoir
is a must read for caregivers. "While I cannot tell you it was easy or
even pleasant traveling down that rabbit hole of dementia," Tapia says,
"for me it was a time of personal growth, as we maneuvered through the
disease’s many challenges. Interspersed with those challenges were moments of
tenderness and brief, fleeting times of lucidity in one or the other parent
that I still cherish. I learned to parent my parents with patience and
compassion; caring for them, much as they’d cared for me as a child, so many
years ago."
Marianne Sciucco is a registered
nurse who assisted hundreds of families on their dementia journeys and watched
three aunts succumb to the disease. She recently became the caregiver to a
family member newly diagnosed with mixed dementia. Her novel, Blue Hydrangeas, an Alzheimer's love story,
is based on many couples she worked with, one in particular. "As a nurse,
I'm the keeper of many stories," she says, "which really are about
the human experience, and because I write and have those skills, and I desire
to do so, I feel I have an obligation to tell these stories." It is ironic
she is now living out a dementia story of her own. "Alzheimer's is always
on my radar, but I did not expect this person to be the one. Suddenly, I am the
one with all the answers, all the responsibility. It's overwhelming. The wealth
of knowledge I have gained from my years as a nurse and writing about it keeps
me sane."
Shannon Wiersbitzky witnessed the
decline of her beloved grandfather from Alzheimer's when she was just a child.
"I spent my childhood summers with my grandparents in a small town in West
Virginia, not totally unlike the fictional town of Tucker’s Ferry in my
book," she says. "As a result, my grandparents became like second
parents. When I was in my twenties, my grandfather was diagnosed with Alzheimer’s.
I hoped and prayed that he wouldn’t forget me. But of course, the disease
doesn’t work that way, and I was forgotten along with everyone else he loved.
The moment I realized he no longer knew who I was is something I will never
forget. It broke my heart. And it was that nugget which inspired my novel, What Flowers Remember." In the
drama of Alzheimer's, children are often overlooked, their observations and
points of view neglected. What Flowers
Remember helps open a discussion with young people about what's happening
with Grandma or Grandpa. It is a heartwarming story of love and loss, of a
young girl coming to understand that even when people die, they live on in our
minds, our hearts, and our stories.
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