It starts small. Misplaced keys that turn up in odd places, making you wonder if gremlins have taken up residence in your home. Forgotten appointments you’re sure you didn’t make, until someone points them out on your calendar. Other odd happenings disregarded, still niggling in the back of your mind.
More time passes, and you begin to think someone rewrote your familiar cookie recipe in an alien language, because the words have begun to lose their meaning. They look like a jumble of disconnected letters. You walk into the laundry room to wash a load or two, but have no idea how to operate your washing machine; you then ask yourself, what are all those buttons for, anyway? You become lost walking your dog around the neighborhood you’ve lived in for over 40 years and spend over an hour finding your way home. A truly frightening experience! Would this be the day your anxiety turned to panic?
Envision a decline that begins without permission and chips away at all you hold dear. Would you, should you tell anyone? Or, do you simply whisper your fears to the wind, hoping that if you ignore this apparent glitch in your brain, it will disappear and you’ll soon be back to your old self? Until that time, surely it wouldn’t be too hard to fake it…would it? Then, a chilling thought--it couldn’t possibly be the beginnings of dementia…could it? And, what if you did tell someone and they locked you away in a special care facility? Is this a risk you’d be willing to take?
My mother entered this world sometime in her late 70’s or early 80’s. To this day, our family remains unsure exactly when her cognitive decline began, largely because of our naïveté in recognizing the decline, combined with Mom’s
resourcefulness in covering it up.
One of the most glaring incidents our family overlooked early on occurred the weekend of a family reunion held at Mom and Dad’s house to celebrate Dad’s 90th birthday. Mom and Dad’s 2 oldest granddaughters, Katie and Deanna, arrived from the west coast as a surprise. We prearranged for them to come to the front door individually in order to draw out that surprise…
Katie was the first to ring the doorbell. Mom answered the door, “Oh my goodness! Look who is here; it’s Katie!” Katie walked into the living room to greet and hug her Grandpa.
“Hello Grandpa! Happy Birthday!”
“Well, Katie! What a surprise!” he said, returning the hug with obvious pleasure.
After a few minutes the doorbell rang again.
“Now, who could that be?” asked my mother as she hurried across the room. There in the doorway stood Deanna.
My mother, looking a bit confused, stared at her granddaughter and said, “Who are you?”
Deanna’s face fell. The rest of us looked on in shocked disbelief. “Who am I? Why, I am Deanna, your granddaughter,” she replied in a perplexed and somewhat shaky voice.
It was another clue that we somehow brushed off, attributing it to the stress of taking care of Dad and the commotion of having so many visitors all at once. Looking back, it is now obvious to me that our minds are well-tuned to rationalizing strange events or behavior in our attempt to normalize life.
(Excerpted from Somebody Stole My Iron: A Family Memoir of Dementia)
Sometimes I wonder how far along this journey Mom traveled before realizing her abilities and her sense of self had begun to gradually slip away. What must that have been like for her to silently endure, alone with her thoughts and fears for the future? I imagine it as terrifying.
Only later, following her doctor’s official diagnosis of Alzheimer’s (the most common form of dementia), after she’d been “outed,” did she allude to the disease, and even then, only a few times. In one conversation, she forbade family members from speaking the dreaded word “Alzheimer’s” in her presence. Once in awhile, she’d anxiously comment to me, “I’m losing my mind!” She knew, without a doubt, of what she spoke. One excruciating memory at a time, she was losing her mind.
June is Alzheimer’s and Brain Awareness Month, providingan opportunity to bring Alzheimer’s disease into the limelight. It’s gratifying to see more people coming forward to talk about this disease, but there’s work yet to be done. Let’s come together to fully remove the stigma associated with memory loss, by continuing the dialog. After all, millions of people are already afflicted and this number is only predicted to increase as we boomers age. Learning to recognize the warning signs and removing the stigma will improve chances of an early diagnosis.
How about you? Would you ‘fess up or cover up?
About the Author
Vicki Tapia cared for both parents diagnosed with dementia. 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," Vicki 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."
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