Contact me at email@example.com
March 6, 2014
INTERPRETING THE WORDS OF SOMEONE WITH ALZHEIMER’S
Don’t Take Them Quite So Literally.
Our ability to use language, specifically the spoken, read and heard word, is what defines us as humans.
Language, real meaningful reciprocal dialogue, is intricately complex. It involves precise synchronicity in the brain of hearing what is said, processing the meaning of the spoken word and executing a response, all in microseconds.
Conditions and diseases that affect the brain impede the delicate flow of language.
Consider the changes in Dick Clark’s articulation post stroke, Gabrielle Giffords after her gun shot injury to her head, or how Multiple Sclerosis impacted Annette Funicello’s speech abilities.
And then there’s Alzheimer’s, an insidious, neurological disease that pretzel twists the gray matter as it gobbles up brain cells. Deteriorating communication skills is just one of many abilities adversely affected by Alzheimer’s Disease.
Even as many with Alzheimer’s still talk, what they say and how they say it also “speaks volumes” and we need to “listen” with a different set of ears!
I’d like to share the following true story with you. Clearly the message needs to be interpreted less literally and more figuratively.
David’s widowed mother Mariam was experiencing significant decline from Alzheimer’s. Neither he nor his sister Carolyn lived anywhere close geographically to their mom, so they decided to move Mariam into an assisted living center near David’s family in Newport. In that way, his wife, the grandkids and he could then visit Mariam more regularly.
David clearly witnessed his mother’s steady decline. She needed increasing help with all self-care, was wobbly and often confused.
David accepted that his mother probably knew he was important or familiar to her, but Mariam had ceased referring to him by name for some time.
Then one weekend Carolyn came into town to see her mom and family. As soon as Carolyn walked into her mother’s room, Mariam perked right up, calling Carolyn by name much to David’s surprise.
Naturally he was expecting his mom to acknowledge him by name too, assuming his mother was having one of her rare but wonderfully lucid moments.
Mariam looked at her son and said, “Who are you?”
Masking crushing disappointment he replied, “David.”
“I know a David. He lives in Newport. He use to run track for the Newport high school Huskies, but he’s grown now. He’s about your age, manages his own company, married and has two kids, a son Jonathan. That was my husband’s name, although we called him John; he’s dead now. And a daughter Katherine; Katie they call her. They visit me and bring cookies, my favorite, Snicker Doodles.
Do you know David?”
Mariam’s David was stunned!
She had just described him in perfect detail, except of course for referring to her son as “another David.”
He managed to muster the reply “No, I don’t” before leaving her room to regroup emotionally.
This story was shared with me by a woman – Patricia – at one of my recent presentations and book discussion/signing of my memoir I Will Never Forget-A Daughter’s Story of Her Mother’s Arduous and Humorous Journey Through Dementia.
Pat knows Carolyn personally who had shared the incident with her. Carolyn had very mixed emotions about and was bewildered by her mother’s remarks.
I smiled to what I perceived as a delightful story that the family was probably misinterpreting too literally. Patricia looked perplexed initially until I explained.
Although I can’t guarantee it, I am confident that Mariam was referring to her son when she described “David” with such warmth and accuracy. She may have “articulated” the relationship connection incorrectly, but she was talking about her son and grandchildren.
For someone with Alzheimer’s, words really do get “lost in translation”. What they say and what they mean are not always in synch, but I, like many others, strongly believe the message is the same.
So the next time you engage in a conversation with someone with dementia, broaden your interpretation of what’s said. Think outside the parameters of the literal spoken words and be willing to hear the intent behind them.
“They” are still in there and it’s up to us to find the best way to interact with them.
February 6, 2014
A Mythical Interview with Betty Ward
Please welcome Elaine Pereira as Wednesday’s Guest this week. She had some fun with a mock interview with her mother, Betty Ward, whom Elaine refers to as “the heroine” of her recently released memoir. Sunday I reviewed her book, I Will Never Forget, in which she shared the journey she took with her mother throughout her life, most especially in the years that her mother suffered with dementia. I thought Elaine and her mother might like a Danish and a cup of coffee while they visit. You can join them. There’s more in the kitchen to share.
|Photo Courtesy of Gluten-Free Canteen where you can find lots of gluten-free recipes.|
Thank you, Maryann for inviting us here today and for the refreshments. First I’d like to just give a quick introduction to my mother. In 1945 she graduated with a BS in chemistry then went to work at Upjohn CO in Kalamazoo, MI where she met and married my father, Wayne Ward. They had three children before Betty went back to school for her masters in education. The ‘Life is Good Years’ continued until my father’s stroke in 1995, followed in 2004 by both his death and my brother Jerry’s, and finally my mother’s rapid decent into dementia.
From the ashes of her eventual passing arose I Will Never Forget. I hope you enjoy meeting my mother in this brief interview in which I pretended to be a reporter.
ECP: You and Wayne had three children, two sons Gerald and David and a daughter
Elaine. Tell me a little about her.
BW: Elaine was adorable but spunky and always testing the limits. I use to say about her and at times to her: “There was a little girl who had a curl right in the middle of her forehead. When she was good she was very good, but when she was bad she was horrid”
ECP: That’s funny! She did stay “horrid?”
BW: No, but she did remain spunky, which was an asset when I needed an advocate to speak for me when I no longer could.
ECP: Despite being Catholic, you have some liberal views on certain issues. Tell us what you don’t agree with?
BW: I had three children on the rhythm method of birth control so obviously that doesn’t work. Also, I wanted to have our daughter’s name be Elaine but was told by some opinionated nun that there was no Saint Elaine so I couldn’t use it. Back then the church was pretty strict about using names of saints for our children. We had just buried our 20 month-old son David in August so the idea that the Church would dictate our child’s name while we were experiencing such unspeakable grief, was unacceptable. Our Parish Priest however overruled the nun indicating that Elaine is a derivative of St. Bernadette. I laughed!
Lastly, I am not an advocate of pro-active measures to end life prematurely but I strongly support a quality of life.
ECP: How sad that you lost your son. What happened?
BW: It was a car accident. I was four months pregnant with Elaine when it happened, killing little David. The rest of us were injured and the accident created financial devastation. The only thing I could be thankful for was that I didn’t lose the baby I was carrying.
ECP: You mentioned Elaine was your voice when you couldn’t advocate for yourself. Can you tell us more about that time?
BW: Well due to Alzheimer’s, I don’t remember everything (Ha!) but she was my rock! At times when the dementia fog lifted though, I knew everything she was doing for me and thanked her. When reciprocal communication was beyond my control I “spoke” with my eyes and she listened.
ECP: You wandered from your care facilities on two occasions with dire consequences.
BW: The first time I thought I needed to take the groceries out of the trunk. It was a crazy, misguided notion because I didn’t have a car anymore, wasn’t driving and hadn’t gone grocery shopping in the middle of the night. Alzheimer’s really plays terrible tricks on your mind! I fell hard outside and couldn’t get up.
The last time, my dementia-induced hallucinations had me seeing my own mother, a wonderful woman who died when I was in my 30s. I felt compelled to find her, thinking she was across the street and needed me to take care of her. On a cold winter night, wearing only thin red flannel pajamas, I was able to wander out the front door of my locked facility because someone forgot to reset the alarm. Five hours later I was found literally near frozen to death in severe hypothermia.
ECP: Tell us how you feel about having your life immortalized in a memoir.
BW: Unlike Elaine who shines in the limelight, I’m more private. She has my blessing though because the intent of her book is to support others on their journey through dementia as well as supporting Alzheimer’s awareness.
She and I have always been able to express ourselves verbally and in writing with passion, integrity and honesty.
I am proud that Elaine’s legacy is telling this story, one that had to be told, as it is everyone’s story. I am especially proud that she donates a portion of the proceeds from the sale of each copy of I Will Never Forget to support Alzheimer’s research.
January 22, 2014 IN THE NEWS
Elaine Pereira, Author Of ‘I Will Never Forget’, Concurs With A Comprehensive Approach To Help Delay And Manage Dementia
Author Elaine Pereira believes activity, both mental and physical, is a primary key to delaying the onset of dementia. Pereira has written the one book on dementia that no one else could write. ‘I Will Never Forget – A Daughter’s Story of Her Mother’s Arduous and Humorous Journey Through Dementia’ is a dementia memoir that present her mother’s story told from three perspectives – as a daughter, as an occupational therapist and as a caregiver.
Elaine Pereira, speaker, Certified Dementia Practitioner and Caregiver and author of the award-winning dementia memoir, ‘I Will Never Forget’, promotes a 5 pronged lifestyle approach to help delay the onset of dementia to manage its effects
[Detroit MI January 22, 2014] A recent video on CBS Morning featured CBS News chief medical correspondent Dr. Jon LaPook and Dr. Rudolph Tanzi, professor of neurology at Harvard Medical School and director of the Genetics and Aging Research Unit at Massachusetts General Hospital. In their opinion, clinical trials of medications to treat Alzheimer’s have failed because they target the early stages when in fact researchers now know that by the time someone is symptomatic for Alzheimer’s Disease, they are well past the early stage. Hence the medications don’t work. Elaine Pereira, author of ‘I Will Never Forget’, a compelling and unique memoir on dementia, believes that brain healthy habits, both physical and mental, are of key importance in regards to delaying the onset and managing the effects of Dementia.
“It should come as no big surprise,” Pereira stated, “that, quoting Dr. Tanzi, ‘What’s good for the heart is good for the brain’. The collective ‘we’ have known for decades that a diet low in fat and keeping active physically bode well for cardiac health. It is true for brain health also. In addition Dr. Tanzi sites being mentally and socially active and one more key ingredient, sleep.”
“This five-prong lifestyle approach of Exercise, Diet, Social Interaction, Intellectual Stimulation and Sleep collectively increase brain synapses and the production of endorphins – or ‘internal morphine’ – those awesome analgesic causing peptides that hang out in our brains.”
Elaine Pereira has written the one book on Dementia that no none else could write. She is a daughter who has lived the Dementia drama, an occupational therapist who understands the neurology and an unwavering caregiver. Pereira’s exclusive perspective has enabled her to produce a one-of-a-kind book about Dementia that encompasses several uniquely special approaches.
In addition, while most authors unveil theirs stories chronologically, Pereira’s memoir unfolds in dynamic and creative time shifts, revealing her mother’s decline in a “then and now” format, transitioning beautifully between past and present.
While Dementia is a serious disease not to be trivialized, Pereira believes there are humorous one-liners and anecdotes in all of life’s dramas. She blends her mother’s Dementia induced tragic mishaps, episodes of illogical thinking and agitated behaviors with tasteful hilarity as well as her ridiculous but funny remarks. The end result is a book about Dementia that is unlike any other book on Dementia ever written.
‘I Will Never Forget – A Daughter’s Story of Her Mother’s Arduous And Humorous Journey Through Dementia’ has received numerous, high-level industry awards. These include:
“So walk with your friend(s) to a local café for a light lunch,” Pereira concluded, “discuss the latest news worthy topic and at the end of the day, tuck yourself in for a night of brain refreshing sleep.”
Elaine Pereira is available for speaking engagements and media interviews and can be reached using the information below or by email at firstname.lastname@example.org. ‘I Will Never Forget – A Daughter’s Story of Her Mother’s Arduous And Humorous Journey Through Dementia’ is available at Amazon, Barnes and Noble and other book retailers. More information is available at Pereira’s website at www.IWillNeverForgetBook.com.
January 22, 2014 On MariaShriver.com
Lessons I Learned About Life From Someone Approaching Death
“You were so polite,” I said to my brother Jerry as he hung up the phone from yet another solicitor.
Technically one of the three calls that weekend had been a survey, but regardless Jerry was very pleasant with the anonymous person on the other end.
“And why not?” He replied rhetorically. “They’re just doing their job.”
Of course they were.
I dropped my head and turned away as I fought back the cascade of tears welling up in my eyes, again! My husband, mother and I had traveled to Atlanta from Michigan to visit him.
Jerry had scheduled some appointments for us earlier in the day to introduce me to “key people,” the bank liaison for his estate and his insurance agent. We also popped in the grocery store for a few things and consistent with his gregarious nature he chatted with the cashier, bank officer and waved at the mail lady.
Despite everything he had already and was still going through, he was the pillar of kindness and an amazing role model for everyone.
Our family had experienced devastating personal losses and crushing news since 2001. Married for more than twenty-five years, Jerry’s wife Wendie was diagnosed with inoperable brain cancer, glioblastoma, on New Year’s Day, 2001. She lived only a month from diagnosis to death. Jerry’s world imploded with the passing of his beloved wife and despite my brother’s professions to the contrary, I’m convinced he never really recovered.
As the months passed, even under crushing emotional loss, my brother always projected an upbeat demeanor, camouflaging his inner hell. He never retreated into a cave of self-pity or wallow in depression, not that he wasn’t entitled. In time he even expressed hope that he would find another special lady. I wished that for him too.
But it was not to be.
Our lives and consequently schedules were fairly different, so we corresponded mostly by email. In late winter 2003, Jerry started alluding to “some news” but kept me dangling with innuendos and vague comments. Finally in early April, I was convinced he was up to something and pressed for more information. This time he wrote back, “I’ll call you tonight with the news.”
Then like a truck it hit me; he was getting married!
“That stinker,” I thought. I couldn’t wait for his call that night. I was so happy for him and simultaneously a little miffed he had been keeping “her” a secret.
“So what’s up?” I asked quickly when I saw his name on the caller ID. Jerry could ramble on forever so I hoped he would fast-forward to the punch line. He did.
“I saw my doctor today,” he said. “I have stage four esophageal cancer with perhaps a year …” I never heard the rest. I had gone from being so ecstatic for him to complete devastation in the three seconds it had taken him to tell me. Stunned. Shocked. Horrified. Words could not describe what I was feeling. And my poor brother! To have suffered Wendie’s loss and now his own impending demise was simply not fathomable!
When the initial shock subsided, Jerry discussed his treatment regimen including chemo and powerful medications designed to wage war on his cancer’s destructive demons. As an Occupational Therapist with a strong medical background, I validated his positive efforts, but was very guarded about any likelihood of remission.
A year later in April 2004, our dad died from stroke complications. Our mother had been his selfless caregiver for nine years post stroke. Free to travel, she accompanied us on our trip to Atlanta.
Jerry’s ability to project an outward appearance of composure was remarkable. But beneath his façade of strength, lurked the insidious, proliferating cancer that had been stealthily cloaked by his grief. Jerry either ignored or couldn’t distinguish the symptomatology of his disease from the real physical pain caused by Wendie’s tragic death.
“How do you do it?” I asked him one time. To his blank look I added “How do you project such a positive attitude with what you’re going through?”
He smiled and shared his wisdom.
Jerry died December 30, 2004. My husband and I were at his side when he took his last breath.
A few hours later, still very numb and fragile, we left Jerry’s hospice facility for the last time and stopped in a local restaurant for some dinner. Some details are still sketchy but I distinctly remember how patient the waitress was as I struggled to talk or decide what to order.
In the schema of life, and death, food was so trivial. We place such inordinate value on insignificant “things” sometimes. And then I smiled at her the way Jerry had smiled at me months before and remembered his reply.
“Always treat others with kindness. You never know what they are going through. People can’t look at me and know that my wife died or I have terminal cancer.” He had said.
Although truthfully, near the end, no one could look at Jerry’s completely pale, ashen face, distended abdomen and bald head, and not suspect that something was terribly wrong.
Regardless, his words ring true! I try hard to remember that when the receptionist is abrupt or the teller curt as I don’t know what they might be going through either.
January 1, 2014
Five Reasons to Keep Records on Your Loved One with Memory Issues
Being a Parent to your Parent is an uncomfortable responsibility. We are accustom to being cared for by them, not the other way around. But if your parent is experiencing memory issues, ignoring or excusing them puts them at risk on so many levels, the most significant of which is their safety.
As difficult as it can be, keeping tabs on them, their medications, appointments, whether they still drive or not (another dramatic issue with significant safety ramifications), etc is critical. It’s important to keep a log, journal, post-it notes, or the techies might prefer their iPhone, but no matter how you accomplish it, do it!
Posted on the Alzheimer’s Reading Room
Author Interview with Elaine Pereira by Kristina Aziz
Abbreviated for content. Read the entire interview @
Book that changed your life: Honestly? Mine!
Why any human should plunk down cash money for your book:
(I’m chuckling reading the question and trying to think of a funny comeback equal to the task, but …) My book is not a side splitting humorous tale of a crazy dog like Marley and Me; I get that. But it is not a dark, foreboding, depressing, boring story just about someone’s tough life at the end as they’re old and gray anyway.
I Will Never Forget is a powerful, true account of a kind, brilliant, trailblazing woman who earned her BS in chemistry, of all things, in post WWII and then uprooted as a single woman to move across state lines for a new job! We are an international world today, but it was very, very different in the late 1940s.
This memoir is rich in descriptive detail, character development and presents honest and sometimes humbling stories of a family in various stages of crises alternating with happiness and calm.
In a society where we think nothing of spending $4.00 on a cup of coffee – well many Starbucks patrons do it, although I’d rather have a draft – in three or four days, you could have a real, tangible, meaningful, wonderful and real book! And not an empty cup to recycle.
There are many good books on dementia but mine is one of the great ones!
Based on the description of “I Will Never Forget” I know there may be some touching scenes as well as a little tragedy. But can you tell us what more to expect?
I Will Never Forget details superb stories of the author’s childhood through which her mother, Betty’s wonderful character is revealed. From the controversy about Elaine’s name, tales of smokin’ dragons, the feisty teenage years and her near paralyzing accident, a woman of great character and depth of soul is portrayed.
Their strong mother-daughter relationship gradually evolves as Elaine matures, marries and becomes a mother herself, of twin girls no less! But as the years advance, Betty’s characteristic kindness wanes. She starts to exhibit flashes of hostility, paranoia and gradually begins her one-way journey through the dark corridors of mind zapping Alzheimer’s.
Although clearly mystified by her mother’s goofy behaviors and bizarre thinking, Elaine does not appreciate the extent of her mother’s decline until one tumultuous explosion of reality. The crazy drama continues as Elaine referees her mom’s uncharacteristic verbal assaults, escapes so exquisite as to impress Houdini, Betty’s fascinating visions of her own mother and finally her stunning rally to take control of her own destiny.
I Will Never Forget is a heartwarming, funny and powerful true story pertinent to anyone touched by the insidious effects of Dementia. Learn from Elaine’s unwitting mistakes as she naïvely weaves through Dementia’s unpredictable haze to capture insightful and effective intervention strategies. Accompany the author through her journey, as her mother’s brilliant mind is slowly and unpredictably destroyed by Dementia’s ravenous appetite for brain cells.
What made you decide to write this book in the first place?
My mother’s rich life but eventual, incredible journey through dementia is a story that needed to be told and, inspired by casual but genuine remarks from friends who said, “You should write a book,” I did!
For far too long, I lived in denial and ignorance, as Mom declined. Despite warnings and information to the contrary, I saw my mom as more functional than dysfunctional. My professional expertise as an OT should have afforded me a better understanding and recognition of my mother’s paranoia and memory issues in the beginning. But like many families, I was too close to the situation.
I felt that if I wandered aimlessly in ignorance, how many other caregivers did too? If I learned by trial and error how best to manage Mom’s tirades, personality changes, agitation and hostility, perhaps in sharing my story openly and honestly, I could help others learn from my unwitting mistakes and know that they are not alone.
What do you hope readers will take from your writing?
I want readers, especially caregivers to learn from my unwitting mistakes. I stumbled in oblivion trying to use logic and reasoning to affect changes in someone devoid of the capacity to process rational thought. It baffled me. Eventually, though, I adopted far more effective strategies that I share in the book.
I want caregivers to know they are not alone in their journey with their parent, spouse or friend, that there is help out there, that they need to take care of themselves first before they can care for someone else, a concept that is, by definition, foreign to caregivers.
What did you like about writing this book, and books in general?
Initially the manuscript served a cathartic purpose. But as I delved into finishing it, I loved writing about who my mom was as seen through my eyes as a child, how she helped to mold a mouthy, feisty teenager into a woman who can and did move mountains in her behalf.
Book Review of I Will Never Forget by Kristina Aziz
December 20, 2013
My Interview by Lorraine Reguly. And a very sincere and complimentary review! Thank you so much Lorraine. The complete interview is on her/this site, but I’ve posted a segment of it.
“Today I’m pleased to have memoir author Elaine C. Pereira as my interview guest. I’ve read her book, I Will Never Forget, and it touched me so deeply that I ended up writing a letter to my son. You may remember Elaine from her guest post two weeks ago. Today, she’s taken the time to answer my questions, and will be available if you have any questions of your own (just ask them in the comment section)!”
LR: ”How hard was it to write this book? Didn’t you cry profusely while writing it? How did you cope?”
EP: ”The book practically wrote itself. It poured out at times. I couldn’t keyboard fast enough sometimes to get the words out. I wrote on loose leaf paper, sticky notes, a dragon dictation (that was a bust for me because I talk too fast), scratch pads, etc. I knew almost all of the facts so research wasn’t an issue.
I cried several times writing the book. Sometimes I had to stop and sometimes I had to just plow through the emotions.”
The Review of I Will Never Forget by Lorraine Reguly
“Here is my review of this moving story, which I posted to both Goodreads and Amazon:”
I Will Never Forget is Elaine Pereira’s beautiful yet heart-wrenching tribute to her mother. Never before have I read a memoir, and I was impressed with the light manner in which this story was written. Infused with humour, the author makes the most out of a difficult situation, making her book enjoyable to read despite the heartbreaking tale she tells. Keep a box of tissues handy – you’ll need them! I teared up many times while reading the author’s touching words, and was bawling when I read the last word. The poem written by the author, found at the end of the book, warmed my heart. It was lovely!
Through the author, the reader gets to know her family, and is able to identify with them as memories are related and glimpses into the author’s personal struggles are revealed. The style in which this book is written provides pieces of the puzzle that many sufferers of dementia face, and the reader can both commiserate with and find compassion for Elaine, the author, a feisty, spunky woman who truly did all she could for her wonderful mother while she was alive. I’m sure her mom is looking down on her only daughter with pride. I would, if I were her!
I highly recommend this book. I Will Never Forget will touch you in ways you cannot imagine or fathom. You will definitely not regret reading it. Besides, shedding a few or more tears is always good for the soul.
I Will Never Forget is Elaine’s powerful award-winning memoir written in loving tribute to her talented mother’s bizarre but humorous journey through Dementia. Elaine donates from each book she sells to Alzheimer’s research.
December 6, 2013
Buckets And Other Lists: A Guest Post from Award-Winning Memoirist,
Elaine Pereira Original article written for Lorraine Reguly by Elaine Pereira
Buckets And Other Lists: Writing A Book Was NEVER On My Horizon
“I’m one of those annoyingly organized people: a multi-tasking extraordinaire who makes lists for practically everything. When my mental To-Do list tops three items, I grab paper and a pen and scribble away.
Yeah, I know, all of you techno wizards are rolling your eyes: paper and pen! How archaic! I’m trying to convert to using the Note section of my iPhone exclusively, but it’s a work in progress. In the meantime, there are far more stashes of pencils, pens, markers and an occasional lipstick tube when I’m desperate and just remembered something important than there are iPhones.”
Having retired from the traditional work force in 2010, the phrase “Bucket List” now occupies a file heading in addition to my never ending To-Do list, which is recycled, rewritten, abbreviated, amended, lost, found and/or pitched constantly.
Truthfully, I’m not a fan of the adjective “bucket” describing my dream vacation, a masterful project still brewing in my creative mind or a once-a-year event like the Indy 500 or Mardi Gras. But it appears to have evolved from the notion of fulfilling a once-in-a-lifetime pursuit before you “kick the bucket.” Since the words “Bucket List” are so universally recognized, I’ll roll with it too.
The Bucket List my husband and I have developed is virtually endless and wonderfully unachievable! For every item we accomplish, we add another and in that way it will go on indefinitely. This year we attended the Detroit Tigers Baseball home opener. We’ve also scratched off hot air ballooning and an exploration of antiquities, specifically the Parthenon in Greece! We each have a personalized sub-list as there are a few adventures unique to us as individuals; he’ll skip hang-gliding and I’ll pass on a wrestling match.
But writing a book was never on either of our bucket lists! For me, it just evolved and practically wrote itself.
My mother’s is a story that needed to be told. She was a kind, brilliant and talented woman all of my life until Dementia took hold, distorting her persona and leaving an agitated, bewildered and compromised person in its wake.
In the shadows of WWII, during an era when very few women attended college, my trailblazing mother earned her Bachelor’s Degree in chemistry and later on acquired a Master’s in Education. Many years later, though, after experiencing a decade of unspeakable tragedies, Mom began to exhibit uncharacteristic and disconcerting changes in her personality. Episodes of irrational behaviors, paranoia, flashes of hostility and illogical thinking, replaced her formally patient, bright, organized and articulate essence.
In what would be her final months, as my mother continued her rapid descent into Dementia’s clutches, her once strong voice faded away. Our quiet visits together afforded me the opportunity to reflect on the vivacious life that defined her. I was determined that she would not be remembered as a withering, mumbling older woman but as the strong, courageous and gifted lady who was my mom!
And thus the book emerged. Rambling drafts became polished paragraphs, punctuated, written, scrapped, rewritten, reorganized and re-edited. A wealth of delightful childhood memories took life in black on white as I passionately chronicled my mother’s story. Superb vignettes from her past and mine were juxtaposed with dramatic, almost unbelievable, events reflecting her steady break from reality under Alzheimers’ spell.
Even as my mom was slipping away to “Rejoin Her Boys” her memory, her story, her journey, were being immortalized for the benefit of others. I am humbled and honored to have been able to give back to the woman who gave so much and blessed to have many great friends and family who supported me in my endeavor to write I Will Never Forget.
Christmas Magic Is Returning Through Mom’s Spirit.
The idea of even opening the too numerous to count boxes of Mom’s hand crafted ornaments and stockings had me in tears.
My mom was an amazing woman. I was incredibly fortunate to be her daughter, a fact I clearly did not appreciate during my feisty teenage period. But except for a few ugly years of my mouthy disrespect when she couldn’t do anything right, Mom and I were best friends!
My mother was truly one of a kind: a petite, poised, beautiful lady with a hint of rebel spirit thrown in. In the shadows of World War II, she earned her Bachelor’s Degree in chemistry and later a Masters in education.
Mom made Christmas magical for the family. Long held holiday traditions from the past were preserved and new ones added resulting in a dazzling Christmas season extravaganza including cookie baking, tree decorating, personalized Christmas cards and much more.
Later Mom expanded her talents and mastered the precise arts of cross-stitch, Hardanger, Black Work and other breathtaking hand skills. Every Christmas, she produced a new ornament design more incredible than the ones of the previous holiday.
After her granddaughters were born, my mother made meticulously detailed (a little ornate for my taste, but nevertheless exquisite) Christmas stockings. Virtually our entire tree was adorned with beautifully detailed hand crafted trimmings Mom had made. At fifteen feet high with a gazillion little lights and Mom’s dazzling adornments, the tree seemed to come alive!
My mother had a devastating year in 2004 with the passing of both my dad my brother. It was then that she started coming to my house every year at Christmastime. Mom enjoyed a few great years before symptoms of Dementia rapidly exploded into debilitating Alzheimer’s Disease and victimized her persona.
Alzheimer’s transformed her once kind, tolerant nature into one of agitation, confusion and hostility. There were times I didn’t even recognize her. Mom’s strained facial expressions communicated terror and bewilderment as her warm smile evaporated under Dementia’s demonic spell.
In July 2011, I got the anticipated but dreaded phone call alerting me that Mom was fading quickly from Alzheimer’s Disease! No matter how “expected” it was, seeing Mom after her last breath, caressing her ashen cheeks and squeezing Mom’s still hands, are indelible memories I will never forget.
The first several weeks after Mom died were a completely surreal fog. I only remember thinking how bizarre it felt to be orphaned as both brothers and my parents were gone!
Gradually summer faded into fall and the crisp mornings triggered thoughts of the impending holiday season. I knew I couldn’t withstand the emotions of decorating for Christmas and the traditions it held. My motto became “anywhere but here” (home). I literally did a “180” and traveled to sunny Florida from snowy Michigan with my husband for both emotional and physical distance.
We were literally “those weird people” on Christmas Eve at the local bar watching professional football on the big screen. It felt both bizarre and emotionally a relief. I wondered how many other people escaped their painful realities during lonely or depressing periods. I said a silent prayer for everyone like me.
The next Christmas in 2012 was better but we still opted to travel abroad. Before we left though, I noticed how the neighborhood glowed at night bedazzled in twinkling lights. I felt a tinge of nostalgia; it was strangely comforting.
I have finally broken free of the grief that held me captive. I’m sure the arrival of my 3 grandkids has helped. Their bubbly excitement has rapidly mended my wounded heart. Eyes wide, they delighted in unboxing, unwrapping, touching and twirling each precious ornament that Mom’s slender hands had once assembled.
I could feel my mother’s spirit as we decorated the tree, looking down on us from heaven smiling in delight and love for all. My grandchildren carefully stood on their tiptoes to pass up to me their treasures to hang, all Mom made.
My mother is free of Alzheimer’s clutches and her real essence has returned!
She has been reunited “with her boys” in heaven, her infant son killed in a devastating car accident, my older brother and my dad. I feel less of an orphan now that my daughter, son-in-law and grandkids are back home after several years overseas.
In a fascinating twist of irony, my brother, dad and mom’s personalized Christmas stockings are now adorned with the three grandkids’ names. Mom had left the exact color of floss, letter chart and specific instructions that I should remove their respective names in thread and replace them with the names of the little ones!
It’s so her to have thought and planned that far ahead!
October 20, 2013
Five Alternative Ways to “Talk” With Someone Living With Dementia.
Read the entire article at:
September 3, 2013
Alzheimer’s Confounding Contradictions
Read the entire article at:
A BIG thank you to Tom Matt from Boomer’s Rock at http://cosozo.com/radio-show/boomers-rock for the great radio interview time.
July and August, 2013 My 5 Part Series:
When Traditional Words Fail, Try Connecting Through The Senses
Endear For Alzheimer’s: http://www.endearforalz.com
Dementia and Alzheimer’s are devastating conditions that rob us of our loved ones. One of the most tragic outcomes is their dissolving memory of events, stories, faces and conversations that connect us as humans. It’s heartbreaking when reciprocal conversation wanes into oblivion. I, and many researches, maintain that for the most part, our loved ones are still in there and it’s up to us to find the connection that “speaks” to them.
Communication takes on many forms and in the subsequent five articles, I will expand on how to connect through the five senses: Touch, Vision, Hearing, Smell and Taste. Elaine C. Pereira, MA OTR/L CDP, CDC
When Traditional Words Fail, Try Connecting Through The Senses, is a 5-part series written by Author and former caregiver; Elaine Pereira. We will post each new article in her series on Friday for the next 5 weeks. Her articles are powerful and extremely helpful if you are trying to communicate with someone with Alzheimer’s or dementia. Please read all 5 articles as they are best used in conjunction with one another. Click the links at the end of the article to read all parts of this dynamic series. Carlos Barrios, Founder Endear For Alzheimer’s
Part 1: Touch 7/28/2013 http://blogforalzheimers.com
Talk More With Touch and Less With Words
Part 2: Sound 8/2/2013 http://blogforalzheimers.com
Speak More With Sound and Less With Words
Part 3: Aroma/Smell 8/9/2013 http://blogforalzheimers.com
The Power of Aromas as Positive Memory Triggers
Part 4: Taste 8/16/13 http://blogforalzheimers.com
Use Your Tongue To Communicate Through Taste
Part: 5: Vision 8/23/13 http://blogforalzheimers.com
A Picture Really Can Say a Thousand Words
Tuesday August 6, 2013
People with Alzheimer’s Say The Darnedest Things
http://bit.ly/15FdE0y on The Alzheimer’s Reading Room
Collectively navigating the uncharted waters of caring for a loved one with Dementia is always a work in progress. The only predictable aspect of Alzheimer’s is its unpredictability. My mom was different from one day to the next and typically within the same day. Her patchwork quilt of reality was a blend of her “real” past and her created present. Read the entire article at: http://bit.ly/15FdE0y
It’s up to us to adapt to our loved ones with Dementia wherever they are at any given moment: past, present or future.
By Elaine C. Pereira +Alzheimer’s Reading Room
Wednesday July 24, 2013
This is a recent post on Ionia Martin’s blog ReadfulThingsBlog.com
Dementia’s Silver Stars Tragically as our Baby Boomer generation matures into the Silver Stars, some of those “stars” don’t shine as brightly as they use to, mostly due to Dementia. Alzheimer’s specifically is a devastating condition that robs us of our loved ones. It’s also allows for some of the most bewildering events, remarks and experiences that defy logic, reasoning and reality. Since I have literally walked, actually more like trudged, in the shoes of a caregiver to my mother with Alzheimer’s, I am able to share the humor with the heartache; explore the mystifying with the plausible; describe the agitation and the calm….. Read the entire article at: http://readfulthingsblog.com/2013/07/24/dementias-silver-stars-a-few-thoughts-from-elaine-pereira/ http://bit.ly/13EN0SS
Tuesday June 4, 2013
And again it’s been a great week for this Michigan author, this time in Dayton Ohio! You can see them by clicking on the links or go the Media Header on my Home Page and see the videos there. Fox 45 – A wonderful opportunity with Megan on Fox 45
And Living Dayton An awesome interview opportunity with Vanessa! http://bit.ly/13FucAO
Tuesday May 28, 2013 on Fox 2 Detroit with Deena Centofanti! See the full interview and the incredible colored MRI brain images comparing a normal and an Alzheimer’s Diseased brain: http://bit.ly/115zLX0
May 28, 2013 WXYZ Detroit, Channel 7 invited me to the studio for a taped interview about my memoir I Will Never Forget and discussion about dementia and aging issues. Getting miked up for the interview. Great exchange with Malcolm Maddox! Thanks so much! Channel 7 Detroit with Malcolm Maddox shown Sunday 6/2/2013 http://www.wxyz.com/dpp/about_us/as_seen_on/dealing-with-a-loved-one-who-suffers-from-dimentia
May 7, 2013 5 Tips for Finding an In-Home Caregiver or Home Care Facility
“Finding a responsible in-home caregiver, or a reputable Home Care Facility, can be a difficult and delicate undertaking,” says Pereira, “but it’s critically important to follow these steps whether you use an agency or hire your own” Read the entire article at:
May 7, 2013 A Tribute to Great Moms Everywhere on Maria Shriver
My older brother and I were fortunate to have a great mom. Growing up, I thought my mom was amazing until my obnoxious teenage period, when she couldn’t do anything right. And, except for those years of my mouthy disrespect, Mom and I were best friends. Read the entire article at:
April 25, 2013 Interview with Jerry Kenney from WYSO, Dayton Ohio http://wyso.org/post/i-will-not-forget-author-recounts-mothers-journey-through-dementia
April 26, 2013 The Story Behind the Poem on Maria Shriver
ALZHEIMER’S AND CAREGIVING MONTH OF POETRY
Have you ever looked up “Alzheimer’s Disease” in the dictionary? noun Pathology . a common form of dementia of unknown cause, usually beginning in late middle age, characterized by memory lapses, confusion, emotional instability, and progressive loss of mental ability. In 28 sobering, apathetic words, a disease so catastrophic is defined with such ridiculous impassion. Read entire article at: http://mariashriver.com/blog/2013/04/the-story-behind-the-poem-elaine-pereira
April 17, 2013
Subtle Signs of Mother’s Dementia on The Alzheimer’s Reading Room
By Elaine C. Pereira
We all need to be circumspect of subtle changes in personality, balance, judgment, memory and anything else uncharacteristic in our friends and family. Be Proactive and we can be less Reactive… read the entire article at:
April 4, 2013
Thank you Tron Simpson @ KCMN-AM News/Talk http://1530kcmn.com for today’s lively and live interview opportunity. And Bill Martinez on Cable Radio Network http://crntalk.com/ for his great questions and sharing his personal empathy. I look forward to his invitation to return for a longer, afternoon show.
Plymouth Observer & Eccentric
Tough road: Book tells of mother’s dementia http://bit.ly/11iQRDw
Written by Julie Brown Staff Writer
Author Elaine Pereira of New Boston wrote “I Will Never Forget: A Daughter’s Story of Her Mother’s Arduous and Humorous Journey Through Dementia.” Pereira’s mom, Elizabeth Ward, was nearly 87 when she died in 2011. She began to show signs of illness in 2005, her daughter said. Pereira’s book came out in May 2012 and is a first book for the retired school occupational therapist who worked with special needs children. “The story needed to be told,” Pereira said. “It’s a daunting responsibility.” Her mom was in a facility, but Pereira lost her brother and dad the same year, and made the decisions on her mom’s care. She agreed issues of dementia and elder care are key as the baby boomers age. “It’s not a European lifestyle here where family takes care of family. Caring for family can be quite an undertaking,” she said. She’s pleased with good reviews and “overwhelmingly positive” reaction to her book. Pereira (www.IWillNeverForgetBook.com) hopes to cover costs and donate to Alzheimer’s research efforts “so my girls don’t have to write a book about me.” email@example.com
March 31, 2013 YouTube Video Book Trailer of I Will Never Forget
Thank you so much to Scott Lorenz, President, and his superb team at Westwind Communications for the poignant promotional Book Trailer of my memoir:
March 30, 2013 Guest Post on Bookingly Yours Blogspot
Please check out the wonderful guest post on Bookingly Yours. Thanks Jenai – I so appreciate the opportunity for such a lengthy promo spot, links and the new YouTube Trailer as well.
February 28, 2013 Rick and Steve from NetCastleStudio Audio Interview http://netcaststudio.com/elaine-pereira-author-of-i-will-never-forget/ This is a wonderful interview with well thought questions from both gentlemen touching on respect of our elders, how dementia’s journey impacts both the individual and the family and so much more!
February 20, 2013 An Academy Award for Caregiver’s on Maria Shriver Blog By Elaine Pereira
Dementia Caregiver’s Survival Strategy – The Humorous Side on The Alzheimer’s Reading Room
By Elaine C. Pereira
November 24 2012
Seatbelt Controversy: Safety or Restraint on The Alzheimer’s Reading Room After more than 35 years working as an occupational therapist, originally in an adult rehabilitation setting but for most of my career as a school therapist, I have received considerable training in maintaining client safety. Seatbelt Safety Therapists perceive and use seatbelts as safety belts. Belts secure physically challenged children and adults in wheelchairs so they can be transported safely or mobilize themselves without the risk of falling out and/or over. Seatbelt Restraint By striking contrast however “seatbelts,” those same innocuous strips of webbing referred to so affectionately as safety belts, are perceived as unacceptable restraints in some populations, mostly non-ambulatory adults with disorienting dementia! Read the entire article at: http://www.alzheimersreadingroom.com/2012/11/seatbelt-controversy-safety-or-restraint.html or http://bit.ly/WL1Bd6
November 6, 2012 Alzheimer’s Changes-It’s Not Just Trains They Forget on The Alzheimer’s Reading Room “I will never forget that train ride,” Mom said. “That was really something.” Ultimately, however, she did forget it, like virtually everything else. Read the entire article at: http://www.alzheimersreadingroom.com/2012/11/alzheimers-changes-its-not-just-train.html
October 29 2012 WGVU Morning Show with Shelley Irwin http://www.wgvu.org/wgvunews/?id=tmsdetail&sty=18719
October 24 2012 Book Goodies with Deborah Carney http://bookgoodies.com/elaine-c-pereira/
October 24, 2012 McNights Long Term Care & Assisted Living Magazine
What a Professional Caregiver Should Never Forget
Regardless of your role providing assistance to another, never forget that the screeching, defiant woman whom you are helping to dress is someone’s daughter, mother or best girlfriend. The man who desperately needs assistance with oral hygiene but has his teeth clenched tight refusing your help, might have been an administrative CEO. Read the entire article at: http://www.mcknights.com/what-a-professional-caregiver-should-never-forget/printarticle/264397/
September 11, 2012 The Reviewing Shelf Pragya Sharma ”I believe it is extremely difficult to write a book like this. Being so close to your loved one, watching them die and then to be able to pour it out into words needs extreme courage. Though it’s beneficial and almost therapeutic to take it all out, it doesn’t mean that it is as easy. Hats off to Elaine for her courage and perseverance to follow through with this book. I love the way this book has been compiled. It is not just about Dementia but so much more. It is about Betty Ward, the woman, the strong, beautiful person that she was. However, sadly, that makes the twist of fate all the more worse. To see such an independent woman in a dependent position is not easy, more so for the loved ones. I am amazed at how Elaine has been able to find some humor in such adverse conditions. It is applaudable. Also, the reverse role of a mother that Elaine plays towards Betty is touching and heart-breaking. Read the entire review at: http://wp.me/p21FJY-19l
August 18 2012 The News Herald by Andrea Blum Elaine Pereira’s relationship with her mother was similar to that of many other daughters. But the last few years of her mother’s life were anything but typical. Those years tested the strength of their bond and taught Pereira the true meaning of unconditional love. Her mother — Elizabeth Ward — suffered from dementia during those years, and Pereira found herself dealing with a person who very often was unlike the loving, accomplished mother she’d known growing up. Read the entire article at: http://thenewsherald.com/articles/2012/08/18/life/doc502e6379328e8788203208.txt
August 2, 2012 Third Age:
Health Close-Up: “I Will Never Forget”
On Christmas morning, 2009, I prompted my mom to join me in the kitchen so that we could begin dinner preparations. Company cauliflower was a long-standing holiday favorite. I got out the coveted recipe card and put it in the recipe holder that Mom had cross-stitched for me years before. I noticed that she was staring at the recipe. Then it hit me: Mom couldn’t process what the recipe instructions were telling her to do. It was mind numbing! This woman had taught high school calculus and now couldn’t read a simple amount like “a half cup of milk” and know what to get out or how much to pour. Read the entire article at: http://www.thirdage.com/caregiving/health-close-up-i-will-never-forget
June 2012 A Caregiver’s Journey on Maria Shriver Blog Growing up, I thought my mom, Elizabeth Ward, was amazing. That was, of course, until I ventured into the obnoxious teenage period, when she couldn’t do anything right. Except for those three or four emotional roller coaster years of my mouthy disrespect, Mom and I were best friends. Now, my best friend is gone. Alzheimer’s has claimed yet another victim, choking Mom’s kind, talented spirit to dust, last July 8, 2011. Read the entire article at: http://mariashriver.com/blog/2012/06/i-will-never-forget-caregiving-journey-elaine-pereira
May, 2012 MLive: Kalamazoo Gazette on-line paper Mother’s Day Tribute For Mother’s Day, Kalamazoo native shares tale of mom’s struggle with Alzheimer’s, focuses on happier times.
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