Elaine Pereira, author of the award winning memoir I Will Never Forget-A Daughter's Story of Her Mother's Arduous and Humorous Journey Through Dementia, will be at the Dayton Book Expo, along with other accomplished authors, Saturday April 27th 11-4. The Expo takes place at the David H. Ponitz Conference Center; 444 West Third Street; Dayton, Ohio 45402.
Pereira shared her story with WYSO Weekend host Jerry Kenney.
Today (April 26, 2013) Maria Schriver posted Pereira's "The Story Behind the Poem" on her blog. With Elain's kind permission we offer the article below.
Have you ever looked up "Alzheimer's Disease" in the dictionary? In 28 sobering, apathetic words, a disease so catastrophic is defined with such ridiculous impassion.
The dictionary reference doesn’t even begin to tell the whole story; how once talented individuals no longer can tie their shoes; how once benevolent people transform like Dr. Jekyll into Mr. Hyde; how brilliant minds whither to dust from Alzheimer’s insatiable appetite for brain cells.
But I can tell you the whole story: actually it is my mother’s story-one that needed to be told.
In post WWII 1945 a young woman, Elizabeth (Betty) Oberle, earned her degree in chemistry from Purdue University.
This trailblazing lady uprooted from her hometown and moved to Kalamazoo, Michigan to take a job at Upjohn Co. Eventually Betty met a serviceman, F. Wayne Ward, and in August 1946 they were married.
Their first child Gerald (Jerry) was born on September 10, 1947, followed by David two years later. Betty was four months pregnant with her third child when tragedy struck, an event of such unspeakable pain no parent should ever have to endure, let alone twice.
In August 1951 their car was T-boned by a young man driving too fast. Betty’s jaw was shattered and she sustained head trauma.
But the real tragedy was the horrendous death of their precious little David. Betty often said that being pregnant had helped her stay focused despite crushing emotional pain and financial ruin.
I was Mom’s unborn child. She named me Elaine.
Gradually with healing, their life metamorphosed from one of heartache into happiness. Jerry and I thrived. We moved into a new house. Mom earned her Master’s in Education eventually teaching high school math.
The “Life is Good” years continued until 1995 when Dad suffered a devastating stroke. For nine long years Mom provided unwavering care for her husband.
"Death by Inches," was how she referred to his demise. Day after week after month Dad's independence and judgment gradually faded into oblivion.
I admired Mom for her noble commitment to his care. But it came at a price: her mental health.
Dad passed away April 2004 from stroke complications. Mom passed out from sleep deprivation leaving his funeral arrangements in my hands.
She had barely recovered when tragedy struck again. Her son Jerry died December 30, 2004 after loosing his twenty-month battle with cancer.
As my mother emotionally slipped down into protective shock, I stepped up to care for her. Thus was the beginning of her journey through dementia.
There were a smattering of memory issues and voids in her logical thinking soon after Dad and Jerry's deaths. I chalked it up to a horrifically stressful year, but in retrospect they were the first indications of Alzheimer's.
In 2005, Mom traveled from Michigan to Arizona to visit her nephew Mike, but she was completely disoriented by the new surroundings, wandering aimlessly about Mike’s house “looking for her apartment in Kalamazoo.”
In the following years, there were increasingly more incidents of paranoia (“Someone stole my pants”), illogical thinking (“Sudoku puzzles have multiple solutions”), poor judgment, driving disasters, checkbook confusion, flashes of hostility, poor memory and so much more.
Her formerly neat and organized apartment looked more like an episode from Hoarders.
Because we lived two hours apart and Mom was deaf from head trauma sustained in the accident, we corresponded by email.
By 2009, Mom was unraveling fast. Her emails rambled; her comments were disjointed and after awhile all electronic communication ceased.
I was driving over increasingly more frequently to handle all kinds of significant issues. Finally a rash of disasters and bizarre, unsafe events in rapid succession convinced me she had to be moved to a more secure facility.
Recognizing that any change in her environment could spark an avalanche of bewildering confusion, moving her closer to me was a distinct advantage.
As I put things in motion for her relocation, I recalled stories of my childhood friends’ grandparents’ not recognizing them.
I remembered back to when my grandfather, Dad’s Dad, was having “memory problems” and might “talk about things from his past.”
Those flashes of past events, which had eluded my comprehension at the time, now came flooding back to me with flawless clarity.
This was now my mom, living out the rest of her life mystified by the simplest of activities and habitually confused to time and place.
My mother’s decline was shockingly rapid. She slipped so far back in time she reported seeing visions of her own mother, who died when I was six.
When my mom defied a locked security door escaping into the night like Houdini, she was probably searching for my grandmother.
But my biggest fear, bigger than mom passing away, was that she wouldn’t know me. I couldn’t fathom her looking right through me, my features no longer distinct.
My smile, my voice, my mannerisms, the same ones she had watched mature for decades might become so unfamiliar to her that they could belong to anyone.
As Mom’s Alzheimer’s continued to chip and chisel away at her memory, I worried that the name Mom had lobbied so hard to have for her infant daughter, might elude her.
For months before she passed away, Mom struggled to recall my name, but she smiled just a little when I entered her room and fixated on my face.
But as her one-way journey into Alzheimer’s hastened, her smile waned as well. Before each visit as I turned the knob on her door, I shuttered and tried to prepare myself that her memory of me might have gone black.
Less than two weeks before Mom died, she rallied a little. I took a chance and asked her “What’s my name, Mom?” as I had done for months without an answer.
She was quiet. Then like an angel had inspired her, she replied “Elaine.” My eyes instantly welled with tears, but I still beamed inside and out!
Mom’s rally only lasted a few hours but her saying my name is a moment I Will Never Forget.
I Will Never Forget
I don’t remember where I am. I really can’t add two plus two. I don’t recall what you just said. I’m sure it’s sweet, if I just knew. You ask me what I did today, but I just don’t have a clue. Yet still, I Will Never Forget How very much I love You.
I don’t know what clothes to wear. I need Depends to hold the pee. My hands tremble when I eat. My hearing’s gone, though I can see. The apartments here all look the same. If I’m in your bed, just let me be. Yet still, I Will Never Forget How very much you love Me.
I don’t know what season it is. The days all seem to be the same. I told God I was ready to go and Soon I’ll join my Boys and Wayne. I think your face is familiar to me, But I don’t always recall your name. Yet still I Will Never Forget That you are my daughter, Elaine.
Elaine Pereira retired in June 2010 as a school Occupational Therapist where she worked with special needs children. She lives in southeastern Michigan with her husband, Joe. Between them, they have five children -- Joe has three sons and Elaine has twin daughters-and soon-to-be five grandchildren. Elaine has a Bachelor’s Degree and Master's Degree in Occupational Therapy from Wayne State University. Elaine is the author of I Will Never Forget. She was inspired to tell her mother’s incredible story in part to help other caregivers coping with memory loss issues in their loved ones.