When my parents
first began to have memory problems, I was in denial. As a psychologist teaching
university classes on aging, I had always emphasized the positive aspects of
growing older. Alzheimer’s disease had never been on my radar. It is now.
Mom and Dad were
relatively young and quite healthy in 1978 when they moved from their small
town in Pennsylvania to live near my three siblings and me in southern
California. For the next ten years, my
husband Ed and I socialized with my parents frequently––even taking vacations
together. Then Ed and I moved to the San
Francisco Bay area, and with more time between visits, I began to notice
gradual differences in my dad. He called
it “slowing down.” He was almost eighty when he made the decision for him and
Mom to follow my only brother and move near Las Vegas. It seemed logical enough; my brother was not
only the youngest in our family and a medical doctor, he was divorced and had
no children. My father gave him power of
attorney and basically turned himself and my mother over to my brother’s care.
When my father
died at the age of 87, my mother was 85 and showing signs of mild cognitive
impairment (MCI). A year later, my brother and one sister moved Mom into a
senior residence without a family discussion.
My mother was distraught; she had never lived apart from her family
before.
I became a
long-distance caregiver with no authority, influence, or even information (no HIPPA
reports). For the next two years I visited Mom in Nevada as often as possible,
brought her to Puerto Vallarta with us twice and to our home in CA three times.
But then the
first of three dramatic changes occurred.
My brother found Mom delirious and dehydrated after she was left alone
for an unknown time. She was quickly
diagnosed with Alzheimer’s and transferred to a memory care unit. Now there would be no more trips for
her. I called her often to give her comfort
and stimulation; her conversations included the hope of escaping and the fear
of losing her identity. Her feelings were so poignant that I wrote down her
words after each call.
The next two dramatic
changes involved her losing her sight for several months and then, two years
later, breaking her hip. She passed away at the age of 96, after living in
institutions for ten years.
Sometime between
Mom’s eye and hip incidents, I began to write her story, including the feelings
she had shared. I was learning so much
about AD through my research, but I was powerless to change her circumstances
of loneliness, depression, lack of nutrients, and losses (even of vision). As
much as I wanted to help her avoid the risks of AD, I soon realized I was too
late.
Yet I’m not too
late to fight for myself––and the millions like me who are also at risk for AD,
by age and genetics and even by sex. Hence
the title of what became my book: Not Going Gently: A Psychologist
Fights Back against Alzheimer's for Her Mother. . .and Perhaps Herself.
In talks with
groups, radio interviews, and blogs I emphasize three key areas in fighting Alzheimer’s
disease: First prevention––the individual’s role; Second––planning, for the family; Third, protection––the role of society for research, education, and better
care. My YouTube video elaborates the
first need: New Directions in Preventing AD. https://www.youtube.com/watch?v=TYLijPyemQE.
Most readers feel the story “needs
to be told—so many others will identify with this.” One said, “You’ve given me a lot of
information—regarding nutrition, etc.—that I’ve already started trying to put
into practice with my own family. And your encouragement to have conversations
with family and to be prepared for the worst has prompted me to start broaching
these subjects with my parents as well.”
I have been fortunate to receive
almost all five star reviews such as
this:
“.
. .a touching and harrowing narrative combined with the latest
scientific/medical facts about the disease. Most practical books are slow
reads. Yours is so personal and compelling. Most of us, in our lives, will need
a book like this to help us through the tough times when a friend or family
member may be diagnosed with dementia or Alzheimer's.”
One reader said: “As a primary caregiver
for a family member in the first stages of this disease, I found this book
extremely helpful and enlightening and would highly recommend it to all baby
boomers who are or might possibly be caring for aging loved ones.”
Website: http://www.drclvincent.com (includes podcasts)
Link to book: Not Going
Gently
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