Meet Lisa Wingate, author of “Tending Roses”

Reprinted with permission from AlzAuthors.com

The Gap

By Lisa Wingate

In every story I write, there are bits of real life, nibblets of sheer invention and  sprinkles of serendipity. Readers often ask me which parts are which. Sometimes, it’s hard to dissect. Our way of looking at the world comes from our experiences in it. Our passions, the things we care about enough to examine, do as well.

I’ve talked about caretaking and the Alzheimer’s journey quite a bit in my books. It’s an issue I know intimately. My first novel, Tending Roses, was in part walking that path with my grandmother. She was a storyteller, a keeper of stories. She could wear you out with her stories, but they always came with a lesson at the end. And then, the stories, one-by-one, piece-by-piece, faded away. The newest ones vanished first. It’s a bittersweet journey, the road of memory loss. My straight-laced, sometimes overbearing grandmother lost some of her inhibitions as she lost those stories. There were funny times, tender times, funny things she said that made us laugh until we cried.

There were times we just cried. When laughter seemed an impossible luxury.

It’s difficult, being with a loved one who is physically able but fading mentally. It’s often a lonely occupation, a painful one. Even friends and family members who would like to help frequently don’t know how to contribute.  My hope is that my stories build bridges and create dialogue between primary caretakers and surrounding friends and family members. Just a few hours out of the house, while a friend or family member takes over the duties, can be an incredible gift.

There’s something to learn from the journey of memory loss, I think. Just like my grandmother’s stories, all journeys come with lessons. Preserve the family stories while you can—that’s the first lesson. Listen. Hear. Record. Write down. Be patient. These are treasures. They’re worth your effort. Later, you’ll be glad you took the time. I could fill a dozen shoeboxes if I had a nickel for every time a reader has said to me, I wish we’d gotten the stories down when we had the chance. Now it’s too late.

Those are the saddest words. I hate those words.

Another lesson from the Alzheimer’s journey — it’s hard. Most of us go through life watching heroic acts on the news and wondering if we’d have what it takes to do the right thing, to do the hard thing. To be heroic ourselves. It’s important to remember that true heroism doesn’t manifest itself only in those who run into burning buildings or cross battlefields to save the wounded.  Heroism exists in quieter forms, in entirely unremarkable places, in everyday efforts and little battles. It’s found in those who sacrifice day after day, who love someone who can’t always demonstrate love in return. Someone who can be frustrating, frustrated, sad, confused, unfamiliar, repetitive. Who can’t say, I love you. Thank you for doing this for me.

Don’t leave me.

I need you.

Caretakers are heroes. Straight up. They stand in the gap between this disease and its victims.

I look forward to the day when they’ll no longer be needed.

Copyright 2018 Wingate Media, LLC

About the Author

Lisa Wingate is a former journalist, inspirational speaker, and New York Times Bestselling Author of thirty novels. Her work has won or been nominated for many awards, including the Pat Conroy Southern Book Prize, the Oklahoma Book Award, The Carol Award, and the Christy Award. Her blockbuster hit, Before We Were Yours remained on the New York Times Bestseller List for over ten months, was Publishers Weekly’s #3 longest running bestseller of 2017, and was voted by readers as the 2017 Goodreads Choice Award winner for historical fiction. Before We Were Yours has been a book club favorite worldwide and to date has sold over one million copies.

Lisa’s website: www.Lisawingate.com

Twitter:   http://twitter.com/#!/lisawingate

 Facebook:  https://www.facebook.com/LisaWingateAuthorPage?ref=br_tf

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 Lisa’s blog: http://theuntoldstory.guru

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Meet Miki Klocke, Photographer and Author of “Alzheimer’s: Beyond Caregiving”

by Miki Klocke

My Mom was diagnosed with Alzheimer’s when she was 56 years old and still working two jobs. I was 33 and became her full-time caregiver. A few years into our journey, when Mom still occasionally had coherent moments, we talked about how difficult this path is and what limited resources there were to help us. There wasn’t anyone for us to talk to. During that conversation I promised Mom that I would share our story so that it could help others. I had no clue how I would accomplish that as I had a degree in photography and limited writing experience.

Many very overwhelming years passed where that promise remained a passing thought. During what would be Mom’s fourth year on hospice, I finally had the time to get serious about keeping my promise. I wrote, I shared, I rewrote many, many times. Photography has always been a part of my life; a lifeline, in fact, during the difficult years of caregiving. Through encouragement, I was led to combine my photography and writing into a visual and poetic expression of the trials and tribulations of caregiving that became Alzheimer’s: Beyond Caregiving.

One of the photos in Miki Klocke’s book.

Through 17 years of caregiving, my greatest source of support came from Caregiver Support groups offered by the Alzheimer’s Association. Hearing the stories of others who had gone before me and those navigating a similar path gave me hope and strength to continue on. They also gave me the permission I needed to express my fears, shed tears and verbalize the anger and shame at not being able to do enough. I want to make not only Alzheimer’s, but also caregiving, a topic we can all freely talk about.

The stigma and misunderstandings of both Alzheimer’s and caregiving open us up to misguided suggestions that can hurt more than help. When you are a full-time caregiver, you have little to no time for yourself. Well-meaning friends and acquaintances often say to “take care of yourself first.” I found it hard not to cry, scream and/or laugh every time I heard this advice. I grew to despise those words. They made me feel more alone – proof that no one understood what it was like caring for Mom.

However, I also grew to understand that taking time doesn’t have to be a physical act as I first imagined, but it can be a mental act. My photography often shows what can seem to some a lonely place, but to others a place of solace. Our perceptions can be foggy in the trenches of caregiving. You can feel trapped by circumstances, but they can also be a place of introspection and an opportunity for a connection beyond words that is simply love.

My time of reflection led me to discover that we never really have control. Therefore, I was able to not only accept – but embrace – the changes that are inevitable in Alzheimer’s. The minute-by-minute changes, as well as the daily, weekly and monthly changes. And the big change, the one that Alzheimer’s always leads to, because there is no cure.

But there is, if not a cure for the loneliness of caregiving, at least good medicine — sharing our stories openly with each other, without censure or shame. There’s a whole community out there waiting to talk about the grief, the pain and the hardships that are part of this devastating journey.

When I began Alzheimer’s: Beyond Caregiving, I knew I wasn’t alone in my challenges and concerns of caregiving, but the greatest validation came in this comment:  “… this book is like sitting down with a friend who knows what it’s like.” I couldn’t have put into words what I wanted the take away of this book to be, but that is it.

About the Author

Miki Klocke is a photographer and author. Her images mirror what is going on in her heart and soul. During the 17 years of taking care of her mom, her images reflect a lonely time, an introspective time, a longing for peace and solitude….

www.MikiKlocke.com

Instagram: @AlzStories

Alzheimers: Beyond Caregiving is available on Amazon.

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Meet Vicki Tapia, AlzAuthors Admin and Author of “Somebody Stole My Iron”

3-D Book CoverReprinted with permission from AlzAuthors.com

By Vicki Tapia

In 2004, both my parents were diagnosed with dementia, Dad with Parkinson’s-related dementia and Mom with moderate Alzheimer’s disease. Even though symptoms had become increasingly obvious by the time of diagnosis, hearing the words dementia and Alzheimer’s disease really knocked the wind out of my sails. We now faced the stark reality of terminal diagnoses.

Trained as a teacher and looking for answers, I sought information to describe what to expect and how to best navigate what lay ahead. I searched for books written from the family caregiver’s perspective, but found few, and none that actually proved very helpful. I could cry on my husband’s shoulder or unload my anxiety on a close friend only so often. In a deviation from my usual handwritten journals, I began tapping away at my computer keyboard on a near daily basis.

When I began writing about dementia, it was merely a vehicle to help me cope with family caregiving. My diary became the place I sought solace at the end of a long day. It didn’t talk back or demand anything of me. However, after a year or so of writing, an awareness slowly took shape inside my brain and I realized I was in the midst of writing a book. I began to recall memories of Mom’s dementia-like behavior from years previous and it amazed me how many recollections remained vivid in my mind. Scene after scene from both the past and present came alive on the computer screen.

I continued to write and refine my memoir over the next several years. All told, nine years passed from the time I started to write and publication of Somebody Stole My Iron. This includes ignoring the manuscript for nearly three years during a fierce internal battle that raged within me between sharing the story or protecting our family’s privacy.

During that time, parents of three different friends received an Alzheimer’s diagnosis, so I offered each of these friends my manuscript. All gave positive feedback and encouraged me to seek publication. I finally realized that despite my trepidation, someone needed to speak up and be the written voice I couldn’t find during my parent’s journey.

Publication has brought me bountiful blessings far beyond sharing our family’s story with others. I have been fortunate to have had the opportunity to speak about dementia awareness in many different venues in my city and the surrounding area. I have encountered readers from around the world who have offered feedback that my shared lessons have also been helpful for them. Through social media, I have become friends with authors of other books about dementia. In 2015, Jean Lee from Ohio and Marianne Sciucco from New York joined together with me to cross-promote our books. And from this collaboration sprung AlzAuthors. There is no way I could have predicted that writing a diary about my struggles to cope with my parents’ dementia would blossom into friendships across the globe and lead me on a mission to educate and provide resources for others affected in some way by dementia. I truly believe all the AlzAuthors are part of a wave that will help to end the stigma associated with this devastating disease.

About the Author:

After teaching somewhere around 10,000 mother/baby pairs the art of breastfeeding, Vicki found her energies redirected to the other end of life, after both parents were diagnosed with dementia. A diary written to help her cope with caregiving morphed into Somebody Stole My Iron: A Family Memoir of Dementia. This memoir was a finalist in the 2015 High Plains Book Awards.

Vicki’s second book, Maggie: A Journey of Love, Loss and Survival, is a tribute to the intrepid life of her great-grandmother, written in remembrance and recognition of a time when women had few rights. In a different time, Maggie might have been part of the #MeToo movement.

A co-founder of AlzAuthors, Vicki wishes every dementia caregiver had access to the AlzAuthors Bookstoreand looks forward to the day when Alzheimer’s is no more. When not busy writing, you are apt this native Montanan out walking her dog or off on an adventure with her husband on their tandem bicycle.

vickitapia.com

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Meet Jean Lee, AlzAuthors Admin and Author of “Alzheimer’s Daughter”

Alzheimer'sDaughter_2

Reprinted with permission from AlzAuthors.com

By Jean Lee

Both of my parents were diagnosed with Alzheimer’s on the same day. They were in their mid-eighties. I was the hometown daughter, working full time as a third grade teacher. My only sibling lived 1,000 miles away.

That sounds like a recipe for disaster, but my far-away sister was my greatest support­­­­‑‑my therapist by phone. Early on, about five years before our parents’ diagnosis, conversations with my sister usually started with me talking about vague, weird things I was observing. Those concerns became more specific, like rotting food in the refrigerator and hushed stories whispered by neighbors that Mom and Dad had gotten lost on the way home from the mall. During those conversations my sister suggested I begin a journal to document frequencies and specifics. Like a traitorous spy, I kept the journal for two years. It became an integral part of our parents’ diagnosis.

Our parents were a tight team. Never did they tattle or express concern about one another. Mom never said things like, “Your dad glides through stop signs.” Dad never implied Mom couldn’t remember how to start the washer or move clothes to the dryer. They experienced a simultaneous decline, hand in hand, just like they’d faced everything else in life. I couldn’t rely on one to help me make decisions to safeguard the other. Those painful decisions fell to my sister and me. My sister was willing to come home with the intention of being the bad guy, delivering the bad news when we moved them from their home to a senior care facility. She allowed me to remain the loving caregiver. I can never thank her enough for being there for me, and I know she can never thank me enough for being there for Mom and Dad.

Over the course of five years and three moves, eventually to a locked memory care unit, our parents died peacefully within one year of each other. Mom died first. When I told Dad, he said, “She was just here, saying she’d wait for me in heaven.” In the year following her death, even though he couldn’t remember he’d had a wife of 66 years, he’d randomly wave at the clouds and say, “I’ll be there soon.”

I told only a hand full of friends and coworkers about our situation. Those I confided in told me I should write a book about this dual decline. I brushed that off, thinking, I’m drowning, I barely have time to write my lesson plans. However, when I sat with my father only one week after my mother’s death and Dad said, “Where is that woman I admired?” I came to realize our story could help others.

Are you at peace with what you wrote? 

Many people ask me if writing our story in Alzheimer’s Daughterhas been cathartic. Nothing could be further from the truth.  My parents gave me everything in life, and during the Alzheimer’s process, I felt like I took everything from them. So, even after working on my book for four years, I released our personal story with great guilt. I really believed I could be struck by lightning as I pushed the final ‘publish’ button.

However, in the aftermath, reader’s reviews have brought peace. During the final cleanout of my parent’s home, while trying to sort treasure from trash, I found my parents’ WWII love letters. I used these letters as chapter beginnings. Readers say the passion and devotion in the letters show the glue that held them together until their last breath. I believe my parents’ writing is the most beautiful part of the book. To have used their words along with my own, I know I pay tribute to them.

Does your book help end the silence and stigma of Alzheimer’s and dementia?

As a career educator, I read to learn and solve problems. Reading also guided my way through our Alzheimer’s journey. Each book, each voice, helped strengthen me for difficult times. No story was exactly like mine in that both parents were diagnosed at the same time. So, I added my voice to the choir, writing my story so it may help you through your own journey.

About the Author
jean lee

After the publication of Alzheimer’s Daughter, Jean connected with other authors of Alzheimer’s books, to co-found AlzAuthors.com. Their mission is to eliminate the stigma and silence often accompanying a diagnosis while enabling caregivers and those living with memory impairment to find written resources – memoirs, novels, nonfiction, or blogs – which educate and enlighten.

In slightly over a year, the site is now managed by five administrators, and has posted weekly essays from nearly 150 authors with direct links to their books.

You can order a copy of Alzheimer’s Daughterto read Jean’s story. Please browse the nearly 150 titles about Alzheimer’s and dementia at AlzAuthors Bookstore.

Growing from her years of teaching elementary school, Jean has recently published two children’s books, Lexi’s Triplets and Lexi’sLitter of Three about her grandchildren and their beloved pets. She’s busy writing the third book in that series, Julia’s Journey to Her Forever Home.

Follow Jean Lee:

Alzheimersdaughter.com

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Mary Ann Drummond Shares Grandma and Me – A Kid’s Guide for Alzheimer’s and Dementia

By Mary Ann Drummond

Nearly five years ago, after presenting at an Alzheimer’s caregiver conference, a seed was planted in my heart to write a children’s book about Alzheimer’s and dementia. When the conference was over one of the attendees came up to purchase one of my books. As she was leaving she asked if I could recommend a book to help her young child with the changes her family was experiencing since her mother was diagnosed with dementia. I was at a loss. I had been so focused on education for adults that I had not researched current literature for children. Continue reading

Welcome Sisters Susan Kiser Scarff & Ann Kiser Zultner, Authors of Dementia: The Journey Ahead

51meTGNSoXLBy Susan Kiser Scarff

Within a year of my husband receiving his dementia diagnosis, I had a classic case of caregiver burnout. I couldn’t concentrate at work and most of my time was taken up with worrying about my husband’s uncharacteristic and impulsive behavior. I was petrified and intimidated about the future…overwhelmed with basic day-to-day activities. Further, I was apprehensive about making the transition from wife to protector, nurse, and mother. Continue reading

Finding My Tribe

Aren’t you curious to know more? Why do you find this boring? If you could peer into my brain, you might observe these questions bouncing around.

DetailsI remember being admonished as a child for acting “too inquisitive” or alternately, “too sensitive.” As an adult I’m sometimes told that, in conversations, I either give too many details or ask for too many details, depending on whether I’m telling the story or listening to one. Or worse, I confess to interrupting someone else’s story (my husband) to add more details when I don’t feel he’s imparting enough information. Okay, so I like details! Watching movies, it’s not uncommon for me to be so engrossed in the details of the room decor or the characters’ clothing in period piece dramas, that I forget to listen to the dialog. My husband might call a movie a “yawner,” while I found it completely captivating in its minutia. And yes, I can be a bit on the obsessive side when it comes to journaling, particularly when traveling. I’m driven to record the details of our travel days, which actually sometimes comes in handy when we’re trying to remember the name of a particular place or where we stayed in any given city. While other people seek entertainment on their iPad, I’m busily recording the day’s events.

MI FarmI’ve long collected family memorabilia, particularly photographs. Some of these photos date back to the mid-1800s. I thoroughly enjoy studying the details in these old photos, imagining myself in that time period. My current work in progress is a fictional biography of my great-grandmother Maggie. For Continue reading

Turn Around, Red Robin

Last week I was reminded that answers or solutions aren’t necessarily what or even where they initially appear…

UnknownI opened the pedestrian door from our garage onto our patio to sounds of frantic fluttering and flapping, coming from our next-door neighbor’s yard. My first thought was “Oh, no, an injured bird.” As I walked closer to the fence dividing our yards, that’s indeed what it appeared. I saw a robin hopping about and frantically flapping his wings. However, when I looked more closely, I realized that wasn’t it at all. The robin was “imprisoned” inside a loop of chicken wire mesh.

In an attempt to keep his dog away from a section of our shared fence, my neighbor had installed a few feet of chicken wire. The wire had detached from one end and was partially curled over, forming an empty cylinder. Somehow the robin had skittered into this unintentional birdcage, and was now trying his utmost to batter the chicken wire into releasing him to freedom. It was easy to see the effort was causing the bird a great deal of stress and would ultimately exhaust him.

If only we could only redirect the bird to reverse direction and look behind him toward our shared fence, he’d see there was a wide opening in the chicken wire where he could easily hop out and escape his self-made prison. My husband retrieved a broom from the garage Continue reading

In the Limelight with Jennifer Brush

9781452590738_COVER.inddThis week, I’d like to welcome guest blogger Jennifer Brush, M.A, CCC/SLP. She and Kerry Mills are the authors of I Care: A Handbook For Care Partners Of People With Dementia.

Jennifer, it’s great to have you back for your second appearance on my blog. First of all, I’d like you to know how much I enjoyed reading your handbook I Care. It’s a true little gem of a book. I certainly would have appreciated having such a wealth of practical information at my fingertips after my parents were both diagnosed with dementia back in 2004.

I’d like to start our interview with you sharing an overview of I Care, along with some of the topics covered in your handbook.

The goal of I Care is to help families have fulfilling, loving, and nurturing relationships and to minimize any depression and stress they might feel when caring for someone with dementia. Every chapter has many useful and practical suggestions to help families feel empowered, rather than defeated, while dealing with the daily trials of dementia.

I Care discusses how to prepare for the future while living in the present, how to make the most of your day, where to look for help when you need it, how to communicate effectively with someone with memory loss, and where to make changes in your home so it is safe. I Care clearly explains the essential information you need to be the best care partner you can be.

Can you explain what motivated you to the write this handbook?

I’ve been working with people living with dementia and their care partners for 25 years. Although there’s a lot of information now available on the Internet for people to read about dementia, family members still have a real need for practical advice to help them Continue reading

Aged Appreciation

UnknownAppreciation: thankful recognition or gratitude

Although Mom passed away 8 years ago from complications of Alzheimer’s disease, a belated appreciation of her has slowly blossomed, especially in the past couple of years. At random moments, I’ve experienced an unmistakable yearning to hug her tenderly and voice my gratitude one more time. In earlier years, I sometimes seemed to lack the ability to show my appreciation in a way that she could relate.

She was born in a time of little. As a child, farm work was the only extra-curricular activity she experienced outside of school. On the other hand, while I was growing up as the only child still at home, it was quite the opposite. Mom did everything in her power to offer me as many experiences and opportunities as possible in our small town. At various times Continue reading