Somebody Stole My Iron

A Family Memoir of Dementia — by Vicki Tapia

Category Archives: Blog

Meet Elaine Pereira, author of “I Will Never Forget”

IWNF Cover Original 300By Elaine Pereira, MA OTR/L CDC DP

My mother’s was 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 what would be her final months, as my mother continued her rapid descent into Alzheimer’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 to remember her as the strong, courageous and gifted lady who was my mom.

I Will Never Forget was written in tribute not only to my mother but to everyone going through this struggle. Too many sons and daughters have witnessed their parents’ very essence evaporate as their memories are chipped and chiseled away. My mother’s story is everyone’s story.  I simply chose to put in black and white the colorful stories of her life for all to remember.

I was not a full-time caregiver for my mother. She had made it crystal clear that she never wanted to live with her “kids” if she could no longer care for herself, even when her “kids” were whittled down to one – just me – after the premature deaths of both of my brothers.

Regardless of whether you’re caring for a loved one at home or allocating daily care to an assisted living facility, Alzheimer’s leaves a permanent mark on everyone.  You are forever changed, no matter how you experience the journey.

I believe I Will Never Forget resonates with readers, caregivers and families in part because I admit my denial, ignorance and transparency reveal my unwitting mistakes.  I saw my mom as the glass half-full, with intermittent episodes of puzzling remarks and goofy behaviors, when in fact she was more the glass half-empty, with occasional bright moments.

Caring for someone with dementia is a unique undertaking compared with other conditions. They all demand patience and special training, but none requires the exhaustive and creative redirection that Alzheimer’s does.

For someone with dementia, there is no expectation that the person will improve. Alzheimer’s is a progressive, fatal neurological disease with no cure.

There is no expectation of consistency. Awareness in people with dementia fluctuates from one moment to the next. Bright rays of lucidity are peppered amidst increasingly longer periods of distorted judgement, outbursts, memory loss and more.

I offer Community and Professionally Based Presentations.  At one seminar a few years ago, an older gentleman, tears welling in his eyes, expressed guilt for having just moved his wife into a memory care facility.  He was questioning his decision and felt like “a failure” for needing to relinquish to others what he perceived as his “job”.

My reply:  “Whatever decisions you make out of genuine love in behalf of someone else is the right decision.”

About the Author:

DSC_4740cElaine Pereira earned her Bachelor’s Degree in Occupational Therapy and Master of Arts from Wayne State University.  Most of her professional career as an OT was with special needs children.  She also worked in Home Health Care, hospitals and private practice.  In addition to actually living the incredible drama and the sometimes humorous journey with her mother through dementia, Elaine holds certificates as a Certified Dementia Practitioner and Caregiver.

Today Elaine works extensively to advance Alzheimer’s awareness through her Award Winning/Best Selling memoir I Will Never Forget, community and professional presentations and pertinent articles.

A native of Kalamazoo, Elaine Pereira and her husband Joseph live in South Eastern Michigan with their two big dogs and two new cats.  Together they have five adult children and five young, adorable grandchildren.

Amazon: I Will Never Forget

Book Web Site:  www.IWillNeverForgetBook.com

Twitter:       https://twitter.com/ElaineColette

Facebook:            https://www.facebook.com/ElainePereira.IWillNeverForget?fref=ts

Linked-in:  http://bit.ly/1qLy9oA

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Meet Pippa Kelly, author of “Invisible Ink”

invisibleinkcoverBy Pippa Kelly

Before signing off the final proofs of my debut novel I read the manuscript for the first time in over a year and realised that it was not just laced, but saturated, with guilt.

Invisible Ink tells the story of Max Rivers, a young London lawyer who seems to have it all: a beautiful girlfriend, a burgeoning career, an enviable address – but he harbours a secret. Continue reading

Meet Rachael Wonderlin, author of “When Someone You Know Is Living in a Dementia Care Community”

book-screenshotBy Rachael Wonderlin

I started my blog, Dementia By Day, three years ago. I had no idea, then, that it would become such a huge part of my life. At the time, I was working for Brookdale Senior Living in North Carolina. I had just finished my Master’s degree in Gerontology at UNC Greensboro, and I was thrilled about my first full-time job in dementia care. My title was “Memory Care Program Manager,” but I did a lot more than manage the activity department. I helped to redesign the community’s look and feel. I completely redesigned the calendar. (In fact, I checked online, the current calendar is still very similar to the first one I made!)

I loved working there, and my friends and family enjoyed hearing my stories about dementia care. “You should write a book,” people kept saying. I had always wanted to write a book, but I never pictured it would be a book on dementia care. Finally, I decided to look into it. Instead of publishing it myself, which was my first plan, a professor from my alma mater told me to look into professional publishers. Johns Hopkins University Press was very interested in my book because they have found much success with their book, The 36-Hour Day. My book is designed as a companion piece to The 36-Hour Day, and I am very proud of that fact.

There are not many resources out there for families who are considering long-term dementia care communities for their loved ones. While there is a lot of information about caring for someone at home, there really isn’t much for those trying to decide on community care. That is why I focused so much on care communities in my book. I really wanted a way to teach caregivers that they didn’t need to feel so guilty about moving a loved one into a care community. I wanted to create a book where caregivers could get the answers to their tough questions.

I have had a lot of caregivers reach out to me about the book and about my blog. Overwhelmingly, my readers have told me that they feel less guilty about making tough decisions on their loved ones’ behalf. I love that I can help them. Dementia caregiving is hard enough, and it is a lot more challenging when you’re internalizing a lot of guilt.

When you know one person with dementia, you know one person with dementia. I have met hundreds, if not thousands, of people with dementia. I tell a lot of true stories in my book, and many of these stories are directly from my experience with my residents in care communities. I think this can really help caregivers relate. A number of readers have contacted me to say, “Wow, this one part really reminded me of my mom,” or, “There were a few chapters that described what I am going through perfectly.” That is exactly the type of reader experience I was going for.

About the author

Rachael Wonderlin has a Master’s in Gerontology and owns Dementia By Day, LLC. Her aaeaaqaaaaaaaadhaaaajgixzgjiymvilwixnwutngvhmc05ztcylwrjzdvkngu4owe3ngbook, When Someone You Know is Living in a Dementia Care Community, was published in November 2016 with Johns Hopkins University Press. Rachael’s blog can be found at www.dementia-by-day.com. She is a consultant, speaker, and community designer.

Connect with Rachael:

www.dementia-by-day.com

www.rachaelwonderlin.com

https://www.linkedin.com/in/rachaelwonderlin/

www.facebook.com/dementiabyday

www.pinterest.com/rwonderlin11

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Jack Fussell, Fighting Alzheimer’s One Step at a Time

By Jack Fussell

On Janujack-fussellary 12th, 2013 I left Skidaway Island State Park near Savannah Georgia.  I traveled westward to Monterey, California. 2,594 miles were on foot pushing a jogging stroller.  458 miles were in a car. The reason I did this was to raise awareness concerning Alzheimer’s disease and raise money for the Alzheimer’s Association.

My dad passed away on June 30th of 2000. I was holding his hand. He died with Alzheimer’s disease. Prior to that, prostate cancer had taken a huge toll on both his physical and his mental health. He was a Continue reading

Meet Harriet Hodgson author of “The Family Caregiver’s Guide”

family-caregivers-guide-netBy Harriet Hodgson

If you told me I would write a series for family caregivers, I would reply, “Thanks, but I think you’re delusional.” I would say this gently and go on my way. Although I’ve written about my caregiving experiences, I never thought of writing a series. This is odd because I’ve cared for three generations of family members.

My mother had a series of mini strokes and, according to her doctor, they added up to Alzheimer’s. I was her family Continue reading

Meet Gela-Marie Williams, author of “Green Vanilla Tea”

usa_green-vanilla-tea-cover-2By Gela-Marie Williams

I remember the evening my youngest son came through to me in my bedroom holding a rather dog-eared manuscript of Green Vanilla Tea. I had worked on this family story with my two boys over a few years. I’m not sure how many, exactly. We simply worked on it until we’d tussled with it enough and one day it was done. My son leaned against the doorframe, favouring one leg as his dad would have done. I remember Continue reading

Meet Cynthia Toney, author of 10 Steps to Girlfriend Status

10-steps-to-girlfriend-status-fc-medBy Cynthia Toney

Alzheimer’s is a cruel prison that held my dear mother-in-law in chains for approximately three years, taking her freedom and her mind until it finally took her body. I understood little about the disease before watching a once brilliant, witty, and loving lady wither before my eyes. Continue reading

Meet Marie Marley, author of Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy

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By Marie Marley

I took care of my beloved Romanian 30-year life partner when he developed Alzheimer’s. The disease began very slowly, and for the longest time I just couldn’t understand the changes he’d been displaying. He’d become short-tempered, often confused and sometimes unusually forgetful.

Then one night he was found driving on the wrong side of the road. Realizing what he’d done, he pulled over and stopped. A wonderful lady pulled up behind him and asked if he needed help. Seeing his bewilderment, she gave him a ride home, and he told her to call me. That’s when I began to wonder if he might be getting Alzheimer’s.

I took care of him for four years. When he could no longer live safely at home, I was regretfully forced to place him in a nursing home. It was an excellent facility dedicated exclusively to the care of people with Alzheimer’s and other dementias.

He lived there for nearly three years before passing away. During that time, I often couldn’t reach him.  Then one day I was in Walgreen’s and saw an aisle with stuffed animals. With great hesitation, I decided to buy him one. It was a tiny chick that peeped when you pushed a button on its chest. I was afraid my brilliant former lawyer and subsequent professor of French would be insulted that I’d taken him a child’s toy.

Quite to the contrary, he loved it, and immediately began caressing and kissing it. He named it “The Little Yellow One.” Then we began playing little games with it. We laughed like a mother playing with her small child. After that I took him more stuffed animals. He loved each more than the one before. I realized I’d made him magnificently happy. What’s more, I’d discovered a way to interact with him that was meaningful to us both.

After he passed away, I published a memoir about our life together, focusing on the time when he had Alzheimer’s. “Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy” is quite popular with readers. Those who are caregivers say it helped them very much, and those who are former caregivers say they wished they’d had it when they were caregivers. The memoir has been a finalist for five literary awards.

Since then I have published more than 450 articles on the Huffington Post, the Alzheimer’s Reading Room and Maria Shriver’s website. All deal with Alzheimer’s caregiving.finding-joy-front-cover

Then in 2011, I met Daniel C. Potts, MD, FAAN. We discovered we shared a mutual interest in helping Alzheimer’s caregivers, and decided to write a book exclusively for them. “Finding Joy in Alzheimer’s: New Hope for Caregivers” has also received positive reviews from readers.

From my sometimes difficult experience with Ed, I unwittingly developed a new career—that of helping caregivers of people who live with Alzheimer’s or other dementias. My new career is deeply meaningful to me, and I plan to continue it for many years into the future.

 About the author

marie-marley-phdMarie Marley is the author of ‘Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy,’ which was a finalist for five literary awards: The Eric Hoffer First Horizon Awards, The International Writer’s and Editor’s Awards, The Santa Fe Writer’s Project Literary Awards, The Reader’s Choice Awards, and The Indie Excellence Awards.  She is the co-author (with Daniel C. Potts, MD, FAAN) of ‘Finding Joy in Alzheimer’s: New Hope for Caregivers.’ She has also published more than 450 articles about Alzheimer’s caregiving on the Huffington Post, the Alzheimer’s Reading Room, and Maria Shriver’s website. She lives in Kansas City with her two adorable little Shih Tzus, Joey and Christina.

Facebook – https://www.facebook.com/mariemarleys

LinkedIn – https://www.linkedin.com/in/mariemarley/

Huffington Post – http://www.huffingtonpost.com/author/marie-marley

Maria Shriver – http://mariashriver.com/blog/architect/marie-marley/

Books’ Website – http://www.comebackearlytoday.com/

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Meet Daniel C. Potts, physician, author and dementia advocate

unnamedMy Colors Came Alive

 By Daniel C. Potts, MD, FAAN

“The true worth of a (person) is not to be found in (that person) him/herself, but in the colours and textures that come alive in others.” – Albert Schweitzer

My motivation to write about Alzheimer’s disease and other dementias was my father, Lester, an artist who had Alzheimer’s. A neurologist and only child, I found myself struggling in a dark place in 2002, just after my father’s diagnosis. I felt like a restrained bystander bearing witness to a crime I could do nothing about. Continue reading

Meet Susan Suchan: “This Disease Does Not Come With an Instruction Manual”

thanksgiving-2014By Susan Suchan

When I look at the faces of my grandchildren and see the joy and blessing that they and my family and friends bring to me, I am determined to share this dementia experience! They love me just the way I am.  What may at times look or sound silly, different or even disturbing, is explained and discussed, so we all work together, bringing mutual joy and learned compassion for the best quality of life, for everyone involved. Continue reading