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 even now. Because I write novels about current issues, it seemed a natural choice to base one of my books on the heart-rending topic of Alzheimer’s.

As I planned the book, I realized I wanted it to be about more than what the caregiver experienced; I wanted it to be told (primarily) from the viewpoint of the person actually experiencing Alzheimer’s. And so the idea for To the Moon and Back was born.

Rachel, my primary character, is in her late sixties and also in the early to mid-stages of Alzheimer’s. At times she is clear-headed, but more and more often she finds herself slipping into what she considers “the darkness,” where she begins to lose herself and the memories of a life she once considered happy and fulfilling.

With the increasing darkness comes more and more confusion and fear—and yes, even anger. Her husband of nearly forty-five years, dealing with health issues of his own, is perplexed at the changes he sees in Rachel. Their grown daughter, who comes home to help out, is the first to suspect the problem, but she tries desperately to come up with alternate explanations for her mother’s erratic behavior.

As this family takes its first tentative steps toward acceptance and working through this devastating diagnosis and debilitating disease, readers are drawn in and better able to view and understand the issues related to Alzheimer’s because they can “feel” those issues through the eyes and hearts of the book’s characters. That’s why I felt it was important for me to write about this issue in a fictional setting; the feedback I’m getting from readers confirms I was right. Many, in fact, have told me they’ve found numerous helpful nonfiction books about Alzheimer’s, but To the Moon and Back is one of the few fictional resources available.

In addition to the moving story of a family dealing with Alzheimer’s, I’ve added a “Making It Personal” section at the end of the book, containing thought-provoking questions that can easily be used by individuals or in a group setting. These questions are followed by a section of resources for caregivers and friends/family members of those with Alzheimer’s. This particular disease, perhaps more than most, is definitely a “family affair,” and I believe it is important to approach and deal with the topic with that fact in mind.

0019 Kathi Macias - EDITED emailedI can be reached via my website: www.kathimacias.com

On Facebook: Kathi Macias—personal page; https://www.facebook.com/Kathi-Macias-75996188045/ –author page

On Twitter: @alandkathi

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Meet blogger, Amie McGraham “Taking Care”

IMG_2283LIFE, REPURPOSED

By Amie McGraham

The year I turned fifty, I transitioned from a successful thirty-year sales and marketing career to the role of primary caregiver for my mother, returning to the island home of my childhood three thousand miles away. Mom has had Alzheimer’s for the past few years and, while she’s aware that she’s slowly slipping away, refuses to recognize this because of her religious beliefs. Disease of any type is a topic we never talk about. For her, to acknowledge dementia would be to admit that disease is real: that God’s plan has been altered.

I was raised in this religion. Based on faith healing, it rejects medicine, doctors and hospitals; prohibits alcohol, tobacco, caffeine and drugs. My parents divorced when I was eleven and I divorced myself from religion, beginning a twenty-five year spiral into a life of alcoholism, half measures and wanderlust; unfulfilled careers and relationships. Eventually, I clawed my way out and began rebuilding my life.

Repairing the relationship with my mother is part of my recovery. Immersion into the world of Alzheimer’s caregiving initially felt like a labyrinth in which all roads seemed to lead to frustration, anger and impatience. Sometimes it seemed more like a duty. But caregiving, I’ve discovered, is truly the best form of service. It’s taken a while to embrace this; longer to actually live it. In caring for my mother — actually living with her for the first time since my reckless departure from her life at age thirteen — I have developed real compassion. For my mother. For others. And for myself.

Now, I’m giving back by writing about the Alzheimer’s caregiving experience. My writing roots go back nearly a century; both grandparents were published authors. At age eight, I aspired to be a famous novelist, furiously scribbling stories in my office in the garage. But life happened, and my future dreams of a writing career were shelved until now.

I’ve transferred my passion for writing into purpose, with a flash blog launched in 2017. As the only child, long distance caregiver to my mother whose faith-based religion disallows acknowledgement of her Alzheimer’s, I offer a unique perspective in caregiving. My words take the reader on a holistic journey beyond the clinical aspects of the disease and into the emotional core of caregiving.

My audience includes caregivers and caregiving organizations worldwide. Since a caregiver’s free time and attention span is limited, I keep my message laser-focused; every post is 140 words or less. Although I’m active on various social media platforms, promoting my blog and website is an intentionally understated effort, out of respect for family privacy and due to time constraints as Alzheimer’s rapidly progresses.

As caregivers, we, too, live this disease. Untethered in time and space, we become the mirrors of our carees’ emotions. And through our shared experiences, together we can strengthen the bond of compassionate caregiving.

Recent Feedback

“I’ve been loving your recent posts, bittersweet as they are.”

–Michelle Seitzer, Eldercare storyteller & advocate

“Your blog reminds me of my own caregiving journey. You have a way with words.”

–Melody Leavitt, caregiver to parents with Alzheimer’s

“A brief and important post . . . often the caregiver and young carer roles are far more than personal care. It’s those other tasks that can be your undoing.”

–Lillian Lake, caregiver and young carers advocate

About the Author

Amie McGraham grew up on a small island off the coast of Maine. She has written and published more than 300 articles on animal advocacy for Best Friends Animal Society, the largest no-kill animal sanctuary in the nation and is currently writing her first novel. She received her BA in English from Arizona State University. Now a family caregiver and occasional pet sitter, she splits her time between Maine and Arizona. Her article, “Staying in the Okay Part,” was a featured Caregiver Story on The Caregiver Space. Her blog, Taking Care, shares her journey as caregiver to a mother with Alzheimer’s and is read in ten countries.

Follow her on Twitter, Facebook, Instagram, and on the Taking Care website.

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Harriet Hodgson writes a new book, “Smiling Through Your Tears: Anticipating Grief”

Layout 1Anticipatory Grief: Powerful Feelings for Alzheimer’s Caregivers

By Harriet Hodgson

After my father died, my mother moved to Florida to be near her older sister. Two years later her sister died, and Mom felt lost without her. To fill her days, Mom went on a variety of trips, often with a friend. One day she called to tell me she was “out West.”

“What state are you in?” I asked.

“I don’t know.”

What town are you in?”

“I don’t know.”

“Well, where are you now?”

“I’m in a phone booth!” she replied in an angry voice. (Phone booths still existed then.)

Was my mother with a tour group? Did she have enough money? When would she be home? I didn’t have a chance to ask these questions because Mom blurted, “But I can’t talk to you now because the boat is going down the Colorado.” Then she hung up.

I stood in the kitchen, with the phone in my hand, and started laughing. Always interested in the world, I pictured Mom in a pith helmet, clad in waterproof gear, sitting in an inflatable boat with tourists, and shooting over rapids. Minutes later my laughter turned to tears. During our regular phone calls I realized the intelligent, dependable, funny mother of my childhood had become a different person—confused, impatient, and angry.

On the morning of my father’s funeral Mom had suffered a mini stroke. The strokes continued in Florida. When she was found wandering in a Sears store (Mom was looking for her car), I moved her to my hometown, Rochester, Minnesota. I found an apartment for her in an assisted living community. Mom was quite happy there, but, as the years passed, her dementia worsened. According to her doctor, Mom’s mini strokes added up to Alzheimer’s.

He didn’t order cognitive tests for her because, as he noted, “We already know the results.” Cell-by-cell, my mother was dying right before my eyes. Witnessing her decline was heartbreaking. I felt like a black cloud followed me everywhere I went. A friend of mine, who is a certified grief counselor, asked how I was feeling. I told her I was stressed and exhausted. “You’re going through anticipatory grief, and it’s very powerful,” she explained.

Her comment led to my research on anticipatory grief, and my research continues to this day. What is anticipatory grief?

Anticipatory grief is a feeling of loss before a death or dreaded event occurs. Everyone goes through anticipatory grief, yet many have never heard the term. I decided to write a book on the topic and worked on it for a dozen years. I sent the outline, along with a cover letter, to my New York City publisher, and waited anxiously for a reply. Nothing. Finally, I called the acquisitions editor. Yes, she had read my letter and outline. “I don’t get it,” the editor said. “I just don’t get it.”

From the sound of her voice, I could tell the editor was young and hadn’t experienced anticipatory grief yet. There was no way I could make her “get it.” Still, the editor gave me some smart advice: get a medical co-author. I followed her advice and contacted Dr. Lois Krahn, a Mayo Clinic psychiatrist who lived in my neighborhood. Dr. Krahn was willing to read the manuscript, vet the contents, and contribute to it.

With patience and skill, Dr. Krahn wove her points into the existing manuscript. We tried to find a publisher, but struck out. The traditional publishers weren’t interested in grief, so we turned to CreateSpace, Amazon’s publishing company. After the book was released Dr. Krahn called me. She said she hadn’t thought about anticipatory grief before working on the book. “Now I realize it walks into my office every day.”

Anticipatory grief may have walked into your life. Smiling Through Your Tears may be just the help you need. It focuses on anticipatory grief’s uniqueness, grief of terrorism, anticipatory grief as a reaction to change, factors that shape this grief, symptoms and stages, responses to anticipatory grief, complications, coping tips, and how early grief may help you. Each chapter ends with Healing Steps you may take.

Amazon reviews of the book are rewarding:

  • A life changing book.
  • Anticipatory grief is very hard. Good guide to get through it.
  • They have provided a guide for the emotional dynamic and healing path to wholeness.
  • Very good book about a painful subject.
  • If you are a long term caregiver, as I am, this book is a must.

You don’t have to go through anticipatory grief alone. Smiling Through Your Tears may serve as your guide and companion. Most important, it can lead you to the future. I give workshops about this form of grief. At the end of a workshop an audience member thanked me for doing it. “I didn’t know what was happening to me,” she admitted. “Now I know and can give it a name.”

harriethodgson2014-websize-squareWriteLife   http://writelife.com/product/the-family-caregivers-series/

Amazon https://amazon.com/Family-Caregivers-Guide-Harriet-Hodgson/

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Contributing writer www.thecaregiverspace.org/authors/hhodgson

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“The Beach Poems” by Ann Campanella

CvrBeachPoems_AdExpressing the Inexpressible through Poetry

By Ann Campanella

When I was in my early thirties, my mother began showing signs of Alzheimer’s. She was 41 when I was born, so I suppose it shouldn’t have been a shock to see her aging in this way. But it was.

I always knew she was an “older mom.” She had been a fount of wisdom for me during my adolescence and early years of marriage. Continue reading