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”

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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.

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Welcome back, Joy Johnston, author of “The Reluctant Caregiver”

Pageflex Persona [document: PRS0000038_00069]By Joy Johnston

Not everyone is born a natural caregiver.

Unlike some caregivers who can draw upon their experience as a parent or time spent taking care of siblings when they were younger, I had no such reservoir of caregiving knowledge when my parents fell ill. An only child who lived 1,300 miles away from my parents, my father began showing signs of dementia while I was in my mid-thirties. Assuming the role of long-distance caregiver, I helped my mother by paying bills, sending supplies, and researching care options.

It was not until six months after my father’s death, when my mother suddenly fell ill and was diagnosed with colon cancer, that I became a primary caregiver. I was woefully unprepared and frankly, reluctant to step into the role. My mother required emergency surgery and faced a lengthy recovery. I ended up quitting my job and temporarily moving to New Mexico to care for her. What followed was a crash course in caregiving, with all the ups and downs that comes with the territory, like the most terrifying roller coaster in the world. (I’ve always hated roller coasters.)

For the next several months, I served as my mother’s caregiver and patient advocate. My mother suffered complications and required rehab in a skilled nursing facility. I filled out copious amounts of paperwork, ensured my mother was getting proper care, and made modifications to her home for her eventual return. Caregiving is physically, mentally, and emotionally the most challenging job I’ve ever had, and it gave me a whole new appreciation for caregivers.

I began writing essays about caregiving when my father was in the memory care center during the last year of his life, and continued writing through my mother’s battle with cancer. The essay writing was both therapeutic and empowering. I submitted some of these essays to online outlets and found they generated a passionate response. Fellow caregivers seemed to appreciate my nontraditional perspective and opened up about their own difficult caregiving experiences. This encouraged me to release The Reluctant Caregiver, a collection of these personal essays. My brutally honest writing style contains language that some may find objectionable, but the essays also depict the love, humor, and heartbreak that accompanies the caregiving journey.

There are many wonderful books for dementia caregivers and about family caregiving in general, but I felt that there are few books that speak to the Generation X and younger crowd in a realistic manner. For those familiar with the book, Sh*tty Mom: The Parenting Guide for the Rest of Us, I wanted to capture a similar tone, but for caregivers. I also wanted to be inclusive of those who may have reservations about caring for a family member and that it’s okay to have feelings of reluctance, fear, and resentment. If I survived and even became pretty darn good at caregiving, then you can too!

Note: The Reluctant Caregiver contains profanity and graphic descriptions of medical care.

The Reluctant Caregiver on Amazon

Joy-Johnston Updated PhotoAbout the Author:

Joy Johnston is an experienced digital journalist who is a National Content Editor for Cox Media Group, where she specializes in creating viral content that drives web traffic and social engagement.

Joy received the 2015 Rick Bragg Prize for Nonfiction from the Atlanta Writers Club. Her work has been published in Chicken Soup for the Soul and other anthologies. Joy also works to raise awareness of Alzheimer’s and caregiving through her blog, The Memories Project, and through essays that have appeared in digital and print formats. The Reluctant Caregiver is her first book.

Social Media:

Facebook: https://www.facebook.com/TheReluctantCaregiver/

Twitter: https://twitter.com/reluctantcare

Website: http://www.joyjohnston.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

Meet Kathi Macias, author of “To The Moon and Back”

CoverFrontFinalSmallBy Kathi Macias

As a fulltime writer/editor, I was blessed to be able to work at home and take care of my mother during her last few years of life. I was also blessed that even up until her death at the age of ninety, she was clear-minded. Sadly, so many others are not, making their caregiver’s job so much more difficult.

Though I didn’t have to deal with the issue of Alzheimer’s with either of my parents, I have countless friends and acquaintances who have done so in the past and are doing so Continue reading

Brian Kursonis: Early Onset Alzheimer’s Patient and Advocate Has a Heart to Help

by Ann Campanella

Brian Kursonis, who has early-onset Alzheimer’s, and I met for the first time back in April. He showed up at the memory care facility where I was doing a reading from Motherhood: Lost and Found, a memoir about my mother’s descent into Alzheimer’s. He had reached out to me a few months earlier after seeing some posts on social media about my mother’s illness. Continue reading

Meet Crissi Langwell, author of “Come Here, Cupcake,” a novel

By Crissi Langwell

Come Here CupcakeThe story of Come Here, Cupcake focuses on an aspiring baker, Morgan Truly, and the magical ability she’s discovered that allows her to infuse her baking with feelings. If she feels sad while baking, anyone who eats it will feel sad. If she feels happy, her baking will make people feel happy. And if she bakes while feeling romantic…well, you can guess what happens to anyone who tries it. This new ability, along with finding new love, is confusing enough. But adding to Morgan’s life changes is caring for her mother, Karen Truly, who is suffering from Alzheimer’s. Continue reading

Meet Irene Frances Olson author of “Requiem for the Status Quo”

Requiem for the status quo eimageMy name is Irene Frances Olson, and I survived being an Alzheimer’s caregiver for family members…twice.

My father, Don Patrick Desonier, to whom my novel Requiem for the Status Quo was dedicated, was the first such family member. The second family member was my sister-in-law, who was diagnosed with mixed dementia just one month after my father’s death in 2007. My brother was an extraordinary caregiver for his wife; I was just the go-to person for advice, direction, and the occasional caregiving day. I guess having been front and center on my father’s three-year Alzheimer’s path gave me an “edge” on experience. Continue reading

Meet author and blogger, Wendy Mitchell

By Wendy Mitchell

Wendy Mitchell at her home in York. 2015

Imagine yourself being given a diagnosis of Young Onset Dementia. Your life falls apart, you feel worthless, and of no use to anyone any more. Services are nonexistent, so you feel abandoned

That’s what happened to me in July 2014, when I was diagnosed with young onset dementia at the age of 58, and still working full-time in the NHS. I retired at the age of 59, due to ill health, thinking there was no alternative. Then I sat waiting for services to kick in, but, of course, nothing happened. There were no services.

I could have given up and gone into a deep state of depression, but I knew there must be more. We all had talents before a diagnosis of dementia; we don’t suddenly lose all those talents overnight when we get a diagnosis.

Opportunities started to come my way, first with research. That was once I’d gotten over the barrier of health care professionals thinking it was their right to deny me the option. Taking part in research gives me hope and I need hope. I could be helping create a better future for my daughters, so taking part in research was a no-brainer for me. Many people, when they hear the word ‘research’ have an image of men in white coats handing out dodgy drugs. That couldn’t be further from the truth. Social and technological research is equally important while we await that elusive cure. I’ve taken part in drugs trials, but also social research to find the best ways to live with dementia and care for those no longer able to care for themselves. I’ve tested apps, I’ve commented on web sites. Yes, me a person with dementia. After all, how do the so-called ‘experts’ know they’re getting it right if they don’t ask the real experts – those of us living with dementia now?

My blog, whichmeamitoday.wordpress.com is for me, simply “my memory.” I couldn’t tell you what I did yesterday unless I read my blog. That other people all over the world choose to read it is humbling, plus it’s enabled me to raise awareness. All I’m doing in my own little way is to show others what can be achieved and not to give up. I also hope it will help others look at dementia differently.

Oh, and I’ve just finished writing my book, Somebody I Used to Know, which is due out in the UK in the New Year and America in May, along with a little “firewalking” in October for my local Hospice.

So, as you can see, I’m a great believer in concentrating on what I still CAN do and not dwelling on the issues that dementia throws at me.

About the Author

I was diagnosed with Young Onset Dementia on the 31st July 2014 at the age of 58 years young. I might not have much of a short-term memory, but that’s one date I’ll never forget.

I have two daughters and live happily in Yorkshire.

Website/Blog: www.whichmeamitoday.wordpress.com

Twitter:  @WendyPMitchell

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