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 Marianne Sciucco, AlzAuthors Admin and Author of “Blue Hydrangeas, an Alzheimer’s Love Story”

Reprinted with permission from AlzAuthors.com

By Marianne Sciucco

Writing a book about Alzheimer’s was not something I planned to do when I sat down to write my first novel. It was a lifelong dream to one day write a book, but I had something else in mind when I started typing. That story was going nowhere when I met the captivating couple that inspired me to write Blue Hydrangeas,an Alzheimer’s love story.

She was a beautiful 86-year old who was very confused when I, her case manager, met with her regarding her discharge plan from the hospital. “I’m so mixed up,” she said multiple times, while her frail but dedicated husband sat beside her with a bemused smile. How had these two driven from Florida to New York on their own without any mishap?I wondered, as I reviewed her plan, which was to go to a nursing home for rehabilitation of a pelvic fracture. Seems she had a fall once they arrived at their New York home.

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Their son was present and asked me to make sure his parents not leave the hospital without him the following day, as he planned to accompany them to the nursing home to take care of paperwork and business. I assured him that would not happen and left, spending the next few hours pondering what wouldhappen if they left the hospital without their son. Where would they go? What would they do? These questions became the foundation of my novel. I ditched the story I was working on and started writing Blue Hydrangeasright away. Eighteen months later, I had a complete manuscript.

When a writer falls in love with her story and characters magic happens. I easily stepped into the shoes of Jack and Sara, inspired by the hundreds of couples I helped navigate through their dementia journeys in my role as nurse and case manager. I chose Cape Cod as the setting because it’s my home in my heart, and built them a beautiful bed and breakfast called Blue Hydrangeas because of the gorgeous, fluffy blue flowers all over the Cape. I wrote and rewrote the moving scenes where Sara is at the worst of her Alzheimer’s, and the best. At all times, I infused the story with the deep love and dedication Jack had for his wife, even though nine years of relentless caregiving was affecting his own health.

I put my heart into this story because it was the story of many others living with dementia, and it was important, imperative, that their stories be told in a way that readers could relate to. It was not meant to be a how-to guide filled with advice from a clinical professional. It’s heartfelt and warm. Grab the tissues because you’ll most likely shed a few tears. Readers have written to me personally and posted reviews on Amazon that the story has touched and inspired them, validated their own experiences, and in some cases provided relief. “This story is my story too,” one wrote. Another said, “It was what I needed to let the grief release.”

My personal background with the disease when I wrote the book included my patients and their families, as well as three beloved aunts who succumbed to the disease. I was an observer in these interactions, not responsible for any of these people or the important and heart-wrenching decisions that needed to be made on their behalf. But two and a half years after publication, I started living my own story when I became the legal, medical, and financial representative of my stepfather who was diagnosed with three types of dementia: frontotemporal lobe, vascular, and Alzheimer’s. Although I had written a book about Alzheimer’s, worked as a nurse and case manager, and knew more about the dementias than most people, I soon learned I didn’t know much at all. It was a steep learning curve fraught with frustration and feelings of inadequacy. Without the help of my friends at AlzAuthors I’m not sure I would have come through the experience intact.

I now work in college health where Alzheimer’s and dementia are not the most pressing of my concerns, but my dedication to help educate others about these diseases and chip away at the stigma that surrounds them is stronger than ever. I am coordinating a fundraiser for my local Alzheimer’s Association and an education program for the entire campus in June, and organizing a team for the Alzheimer’s Walk in October. And I will continue to work with AlzAuthors, spotlighting books and blogs that are a source of wisdom, comfort, and support for the caregivers and others who need them.

Purchase Blue Hydrangeas

About the Author

Marianne Sciucco wearing Authors Supporting Our Troops T-shirt at Assateague Island
On Assateague Island

Marianne Sciucco is not a nurse who writes but a writer who happens to be a nurse. A lover of words and books, she dreamed of becoming an author when she grew up but became a nurse to avoid poverty. She later brought her two passions together and writes about the intricate lives of people struggling with health and family issues. Her debut novel, Blue Hydrangeas, an Alzheimer’s love story,is a Kindle bestseller, IndieReader Approved, a BookWorks featured book, a Library Journal Self-e Selection, and a 5-star Readers Favorite. Marianne has also published a Young Adult novel, Swim Season, based on 11 years’ experience as a Swim Mom, and three short stories: Ino’s Love, Collection, Daisy Hunter Story No. 1, and Birthday Party, Daisy Hunter Story No. 2. A native Bostonian, Marianne lives in New York’s Hudson Valley with her patient and reliable husband and beautiful, brainy daughter. They are ruled by Mr. Chance, a cat they rescued who thinks he rescued them. When not writing, Marianne works as a campus nurse at a community college, and teaches classes in independent publishing. She enjoys books, the beach, and craft beer, preferably all at the same time.

Connect with Marianne Sciucco

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Website

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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 Richard L. Morgan, PhD

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By Richard L. Morgan, PhD

Listening to the needs of caregivers as a facilitator of Alzheimer’s support groups for many years, I became aware that care giving and receiving are opportunities for mutual spiritual growth.

Collaborating with gerontologist, Jane Thibault, Ph.D., we wrote, No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia. It is our belief that caregivers have Continue reading