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 Bobbi Carducci, author of “Confessions of an Imperfect Caregiver”

Caregiver CoverPrintBy Bobbi Carducci

“What’s going to happen to Rodger?’ was the first thing most people asked upon hearing of my mother-in-law’s passing.  Extremely introverted, unable to drive, and not in good health, he’d been dependent on her to care for everything it took to run a home for many years. Fortunately my husband and I had talked about taking in one of our parents when and if the time came. We had both the room and the desire to do it. We knew it would be hard at times, but were convinced we would make it work.

We didn’t know how sick he was, how hard it would be, or how long it would last. The first surprise for both my husband and I was learning that he was schizophrenic and had been since 1947. It certainly explained a lot about his odd behavior over the years, but until the medical records arrived, no one in the family had ever mentioned the 13 years he’s spent in mental hospitals from 1947 to 1960. In addition to being mentally ill he developed dementia, Parkinson’s disease, congestive heart failure and dysphagia.

I did what I could to educate myself about the various diseases and how to help him have the best possible life as long as possible. It was harder than I ever thought it could be. I called it creative problem solving on the run. All day, every day and night was a challenge. I doubted myself so many times. Why couldn’t I figure this out? Why couldn’t I make him understand I loved him and wanted the best for him?

I often heard caregivers ask the same questions, express the same frustrations, and cry for help. “Why doesn’t someone write a book that tells people what it’s really like to care for someone with dementia at home?” I decided to write that book.

Confessions of an Imperfect Caregiver is the true story of one family coping with one of the most difficult, and fastest growing issues of our day.  It’s raw and it’s real. I invite readers to cry, shout, despair and laugh with me as I did the best I could to save him from himself, while he did everything he could to convince everyone I was crazy and he could take of himself.

I had one patient for seven years, my father-in- law, and became fearless when taking doctors, nurses, and other health care providers to task to make sure he always got the care he needed.

After Rodger passed away, I decided to become a caregiver advocate and do all I can to support caregivers. I am now a caregiver support group leader, blogger and national speaker on issues dealing with Alzheimer’s and dementia.

Caregivers have thanked me for writing the book and expressing in vivid detail what it takes to be caregiver and the toll it takes on those who do it.

Confessions of an Imperfect Caregiver perfectly encapsulates the human experience, not just the caregivers. When we live in a world of worry, stress, and self-doubt, where do we go to find the strength to go on? Bobbi’s retelling of her caregiving years unfold in a beautiful answer to the questions posed by sickness, health, care, and loss.” Alexandra Axel, Media Director, The Caregiver Space.

About the Author

Bobbi - Transparent imageBobbi  Carducci as a national speaker on the subject of Alzheimer’s and Dementia, how it affects entire families and how to Prepare to Care – What Adults need to Know about Alzheimer’s/ Dementia Before and After It Strikes Home.

Brutally honest and written from the heart, Carducci’s intimate chronicle of caring for her father-in-law is a poignant story of strength, compassion, and humor that will linger with you long after you read the last page. Highly recommended for anyone caring for an elderly parent.” Jan Neuharth, author of the Hunt Country Suspense novels

Confessions of an Imperfect Caregiver is available on Amazon and through Open Books Press and her website www.bobbicarducci.com @BobbiCarducci2 @BobbiCarducci

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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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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.

Brian had attempted to meet me at two earlier book signing events. The first one came and went because, well, he forgot about it. The second one, there was some confusion about which Barnes & Noble I would be at, so we ended up missing each other.

The third time was the charm. When Brian walked into the dining room of the memory care facility, I recognized him immediately from photos I’d seen on Facebook and Twitter. I asked him to join our group that had gathered around a long table. I was struck by Brian’s kind smile, his intelligence and wisdom and the fact that he and I were almost the same age.

AlzAuthor Ann Campanella with Brian Kursonis

At the time, Brian was 55 and I was 56. We connected instantly, perhaps because I had experienced 14 years of my mother’s Alzheimer’s, and he was at the beginning of his journey. According to research studies, he may only live 8 to 12 more years, and his cognitive function will likely decline within 2 to 4 years.

During the reading, I asked Brian tentatively if he was comfortable talking about his condition. He cleared his throat and said, “Sure. I’d be happy to.”

Brian told the story of being diagnosed after “blanking out” repeatedly at his job where he was a process analyst of retirement accounts. The work load was heavy, with lots of number crunching, and he was used to being good at it. But suddenly he was on the verge of being fired.

He went to the doctor for Vertigo, expecting an easy fix. Brian’s fiancé, who accompanied him, mentioned in passing to the doctor that his memory was terrible. This led Brian to a seeing a neurologist. The diagnosis came in stages, and his doctor used the word, “dementia.”

“I was stunned beyond stunned,” said Brian. “I didn’t even know that was a possibility.

Brian with one of his dogs

Brian’s life changed dramatically. Suddenly, he was no longer working and, instead, spent his days in an easy chair, caring for the dogs. Gradually, Brian realized he could waste the rest of his life feeling depressed with nothing to live for, or he could move forward. He began reaching out and connecting with others in the Alzheimer’s world.

By the end of the evening, I felt as if I’d met a sibling, someone who knew what it was like to stand on the precipice of Alzheimer’s and still have hope.

Recently, I set up an interview with Brian, and he shared more of what happened after  his diagnosis.

After the Diagnosis

After his period of grief and adjustment, Brian realized that helping others made him happy. So he set about finding ways within the Alzheimer’s world to do just that. He drew from his experience in a former line of work as a counselor and created a website called withALZmyHEART. The website walks people through an early-onset diagnosis and offers hope.

“I stumbled into being an advocate for Alzheimer’s,” Brian said. He met people online and at conferences. With the awareness that he was running out of time, he reached out to more people through social media. Because of his unique ability to articulate about a disease that is a mystery to many, he has been offered speaking engagements and interviews with national publications.

Brian has become the face of Alzheimer’s in PhRMA’s National GoBoldly Campaign, a public service announcement that runs on many television channels. Men’s Health Magazine and The L.A. Times ran stories on him, and he’s been interviewed by CBS Evening News and for a PBS documentary coming out in 2018.

Faith2Care

However, the project dearest to Brian’s heart is Faith2Care, an innovative plan to connect caregivers, people of faith and those in need. The idea came to him after spending time on several Facebook caregiver groups. “The posts broke my heart,” he said. “I had to find a way to help.”

Brian wants to find all the caregivers that need help – anything from mowing a lawn to giving someone a ride or providing respite care – and match them up with those in the faith community who want to help.

“Caregivers are a hidden group,” said Brian. “They don’t have time to have a voice. The faith community wants to help, but they don’t know how to find the caregivers.”

“I want to do this on a grassroots level,” said Brian, “bringing people together.” His Faith2Care website would be the hub, and he has hired a company to help him manage all the data.

Brian has not allowed his disease to define him. “I don’t care how people see me,” he said. “I just want to help.”

The future does not concern Brian. He’s focused on the present and doing everything he can to make the world a more compassionate place for caregivers and those who are living with Alzheimer’s.

Ann Campanella recently joined the management team of AlzAuthors. She is the author of Motherhood: Lost and Found, a memoir that tells the story of her mother’s descent into Alzheimer’s at the same time Ann was trying to become a parent and experiencing infertility.

Connect with Brian on his social media:

Websites: withALZmyHEART and Faith2Care

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

Instagram: https://www.facebook.com/kursonis

Twitter: https://twitter.com/WithAlzMyHeart

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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/

Twitter https://twitter.com/healthmn1

Facebook   https://www.facebook.com/harriet.hodgson.7

Linked In   https://www.linkedin.com/pub/dir/harriethodgson

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Contributing writer www.thecaregiverspace.org/authors/hhodgson

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Meet S. R. Karfelt, author of “Nobody Told Me: Love in the Time of Dementia”

By S. R. Karfelt

Writing about memory loss wasn’t something I’d planned to do. I’m a fiction writer. But when my mother-in-law could no longer live on her own she moved in with me and my husband, her son.

That same husband and son had to go work in Asia soon after she arrived, leaving me alone with Gummy for a short but difficult while. His parting words were, “Do whatever it takes to survive it.”

What do writers do to survive? They write.

Even then I didn’t plan to write a book. I had my next fiction book lined up. My grand plan was to get Gummy settled, on medication, and used to her life here. Then I’d get back to writing. I’d blocked off a couple months to accomplish this.

Is it even possible to get someone used to losing their memory? I was so young and naïve last year. Gummy couldn’t remember where she was or why. She packed to go and asked questions non-stop until she’d drop from exhaustion, and later wake up panicked and deep into sundowning in the middle of the night.

At some point I wrote a desperate post on Facebook. The tsunami of support that came from others who were going through the same thing, or had, surprised me. It helped knowing I wasn’t alone. I continued writing about Gummy privately. Eventually I told my publisher the expected book wasn’t going to happen. I could barely take the time to go into the bathroom alone, let alone write.

Saffi? Saffi? Where’d you go?

     I’m in the shower, Gummy! I’ll be right out!

Hello? Is anybody here?

My publisher is the first one who said, “Why don’t you put those Facebook posts into a manuscript and see if you can turn it into a book?”

It makes me laugh now to remember my thoughts then. Wow. I could do that. I’ll just whip out a little memoir, and fulfil my publishing obligation in no time. That won’t be too hard. Talk about naïve. I rewrote that book eighteen times before it even went to the editor. Then there were another ten revisions with her. I cried over that book, and occasionally laughed like a lunatic.

Trying to help Gummy during the day and then write about it at night was an emotional bloodbath. Pawing through my memories of us and laying them bare for the world made this the hardest thing I’ve ever written.

Gummy is one of my favorite people. I adore her. As I say in the book, I’ve been married to her son for eighty billion years. I know her. She knows me. Even now, as bad as the disease has progressed, I cannot look her in the eye and lie. She knows. Over the years we’ve had little in common but our dry humor and stubbornness, and that is the one thing that hasn’t changed. That’s why it took so long to write.

By the time I began writing the book, Gummy had gone into a local memory care facility. Then I turned my focus and time into helping her get comfortable there. At night I wrote and rewrote that book until I found hope and humor in this godawful situation. It may have taken a few years off my life, but I found it.

* * *

Update: The humor Gummy and I shared feels like it went with her because she died at Thanksgiving. Her ending came abruptly. A UTI took her down a notch and she quickly lost the ability to swallow and then breathe. It was the worst of times and the echo of it is still very fresh. I remind myself that we were lucky to have had such a good-natured soul in our lives, lucky the very worst didn’t drag on, lucky the disease (Alzheimer’s and vascular dementia they say) didn’t make her mean. I almost believe me.

Now my hope lies in the future and a cure for everyone else’s Gummy.

About the Author

An entrepreneur, wife, mother, and novelist, S.R. Karfelt helps care for her mother-in-law, Gummy. S.R. authored a memoir about their relationship, for better or worse—a daughter-in-law’s journey, it’s entitled NOBODY TOLD ME: love in the time of dementia.

Amazon: Nobody Told Me: Love in the Time of Dementia

Website: http://www.srkarfelt.com/

Blog: http://www.theglitterglobe.com/

Twitter: @SRKarfelt

Instagram: srkarfelt

Google+: S.R. Karfelt

Pinterest: S.R. Karfelt

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

email: Author@SRKarfelt.com

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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 Lynda Everman, editor of “Seasons of Caregiving: Meditations for Alzheimer’s and Dementia Caregivers”

By Lynda Everman

“To all of you, I repeat: Do not let yourselves be robbed of hope! Do not let yourselves be robbed of hope! And not only that, but I say to us all: let us not rob others of hope, let us become bearers of hope!” – Pope Francis

I really can’t tell the story of our book, “Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers” without first telling the story of ClergyAgainstAlzheimer’s and the Faith United Against Alzheimer’s Coalition, as they are the result of the following loosely connected series of events. Continue reading

“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

Meet Lisa Skinner, author of Not All Who Wander Need Be Lost

LisaSkinnerBy LisaSkinner

I wrote the book, Not All Who Wander Need Be Lost, Stories of Hope for Families Facing Alzheimer’s and Dementia for those who are coping with loved ones afflicted with a dementia-related illness, and crumbling with the anguish of helplessly standing by, watching your loved one decline, and not knowing how to make it better for all who are affected. Continue reading