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 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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Norman McNamara lives with Lewy Body dementia and has written “The Lewy Body Soldier”

Untitled design-13My name is Norrms McNamara. Someone once told me having Lewy Body`s Type Dementia is like having two diseases, you HAVE Dementia, and you KNOW you have Dementia. The same person, a Consultant, also told me that right up to the end of life, the person with Lewy Body’s will still have moments, if not hours/days of clarity. I lost both my Father and incredibly wonderful grandmother to Dementia. (I say that because she brought me up, I am who I am today because of her)

I have read the book, seen the last page, read the last line, I know what happens and know what can happen unless they find a cure for this awful disease. So when I was diagnosed myself nine years ago, aged just 50, I was absolutely petrified, and with good reason.

No cure, no sign of a cure on the horizon and after checking out what help there was available for somebody my age with dementia, which turned out to be practically non-existent, I was at a loss at what to do. I was so lucky in one way because my wife Elaine had been, and still is a carer for 30+ years and it was her who helped me get my diagnosis as she recognised the signs.

So what’s changed in the last nine / Ten years? A huge amount actually, we now have memory cafes all over the world, we have so many groups globally connecting up and beginning to talk about this disease. We have TV adverts, politician’s talking about it in Government’s and generally a better understanding, so why, oh why, is it still in the shadows when it comes to

TELLING THE TRUTH ABOUT THIS DISEASE!!?

It is only because relatives of those with Dementia and those actually living with dementia have started to write books about it are we starting to know the real truth about this disease, and this is exactly what this book is all about. This is a book written by someone who has Lewy Body’s type dementia but is still lucky enough to have the abilities, with a LOT of help, to write it, but let’s make one thing clear

This book is not for the faint-hearted.
This book is not about Clever Medical Terms or graphs.
This book doesn’t wear Rose tinted glasses.

This book is about not only about how hard it is to live with this awful disease, how hard it is to get help etc., but ALSO  a book of helpful hints about HOW to get help, what to do when you go for a diagnosis and what to do after. It’s a book of hope, but most of all it’s a book of truth, and about, as they say,

“Hearing it right from the horse’s mouth.”

I am at peace with my illness, I believe every day is a bonus and every breath I take is a blessing, and no matter what happens, if I can give a little back to all those around me who have helped me along my way, then so be it.

Best wishes, Norrms Mc NamaraFounder of Global Purple Angel dementia awareness Campaign

A A A A A A A b Smiling

Now recognised in 55 Countries around the world with 860 Global Purple Angel dementia ambassador’s.

To find out more please contact

https://www.purpleangel-global.com/

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https://www.facebook.com/norm.mac1

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@Norman Mc Namara

Amazon book also availiable on Amazon USA and Amazon EU

https://www.amazon.co.uk/Lewy-Body-Soldier/dp/1536805874

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Meet Vicki Kaufmann, Author of “Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion”

Elegy-for-Mom_BookCvrBy Vicki Kaufmann, MA, MPSt

“Cobwebs in my mind!” was how my mother depicted the disease that ravaged her brain. Mom was diagnosed with Alzheimer’s and vascular dementia in May 2000, after episodes of TIA’s and early signs of dementia. She was 82 years of age. This was a major turning point in the life of our family. For me, it was the birth of a challenging new creative phase.

I was in my 50’s, at the top of my professional career as CEO of a large social service agency. Even with professional training and master’s degrees in family studies and family counseling, I was not prepared to take on the role of daughter caregiver, looking after my frail, elderly parents.

I began to write poetry and keep a journal, jotting down what worked for me as each new trial unfolded in dealing with an unsympathetic health care system and the bewildering assisted living scene. I made a promise to myself that, when I had the time, I would write a book for family caregivers, filled with tips and ideas that I found helpful during my seven years of caregiving. Nine years later, after the deaths of both parents and shortly after I retired, I fulfilled this promise, completing my book, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion, November 2015. On August 6, 2016, my book won gold and silver medals at the “President’s Awards” event of the prestigious Florida Authors and Publishers Association.

Being retired, I can now give back to the community in other ways. In June 2015, I initiated a website, “CaregiverFamilies.com,” along with a free e-newsletter dedicated to providing tips and resources to family caregivers of loved ones with dementia. I blog twice a month on aspects of dementia caregiving, and I maintain a “Caregiver Families” Facebook Page, an Author Facebook Page, and a “Caregiver Families” Pinterest Page. I also volunteer with my local Alzheimer’s Association for their Speakers’ Bureau, and make myself available for other speaking engagements.

Two of the greatest compliments I could ever receive about my memoir came from the national Dementia Action Alliance’s Board Chair, and from Alzheimer’s advocate/author Maria Shriver. “It’s outstanding! It was so inspiring, so warm! I don’t have the words to describe your book,” claimed Jackie Pinkowicz of the Dementia Action Alliance, leaving this message on my cell phone in the spring of 2016. This past December, after Ms. Shriver read my book, her assistant made a request to post one of the book’s chapters on their website, “The Women’s Alzheimer’s Movement.” I invite you to read Chapter 11.

A decade ago when I was caring for my mother there were few resources to support my role. I am glad that caregivers and those living with the disease are coming forward to write and discuss their challenges, joys and heartaches, and advocate for a cure. I hope that my writings and contributions are making some impact for good in the lives of fellow caregivers.

Purchase Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion

About the Author

Vicki-Kaufmann-1Through CaregiverFamilies.com and her award-winning book, Elegy for Mom: A Memoir of Family Caregiving, Alzheimer’s, and Devotion, Vicki Kaufmann hopes to provide “tender loving care,” support for the caregiver, and practical tools and resources to educate family members about Alzheimer’s and related dementia. Her mission is to provide information on the stages of Alzheimer’s, better coping methods, and assurance, so you know you are not alone in this journey.

Vicki Kaufmann, MA, MPSt, is a retired certified family life educator and counselor. She discovered great joy and blessings in the seven- year period, from 1999–2006, when she was a caregiver for her elderly parents. Her mother suffered from vascular dementia and Alzheimer’s. Read about Vicki’s journey.

Vicki knows the importance of a family support system, having counseled hundreds of couples and families during her twelve years as a certified family life educator, and marital and family counselor. In addition, she has over thirty years experience in nonprofit management, professional fundraising, community and public relations, and collaborating with numerous social service and ecumenical organizations.

Connect with Vicki Kaufmann

Caregiver Families Website

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https://www.pinterest.com/caregiverfami/?eq=Caregiver%20Families&etslf=4787

Facebook Author Page

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Meet Linda Brendle, Author of “A Long and Winding Road: A Caregiver’s Tale of Life, Love, and Chaos”

CoverThe Accidental Author

by Linda Brendle

My goal in life was not to become a writer. I enjoyed writing when I was younger, and I toyed with the idea making a career of it until I received my first negative review from an English teacher. I don’t take criticism very well, and I took her comments very personally. Years later, though, after the sting of her rejection had faded, and especially when I became a caregiver, the need to express myself resurfaced.

Becoming a caregiver was not one of my ambitions either. When I was in the seventh grade and was asked to write an essay on “What I Want to Be When I Grow Up,” my choice of careers was not caring for my aging parents. However, when a loved one has a need, you step in to help. Then, whether by small increments as the need progresses, or all at once because of a catastrophic event, you realize that you have become a caregiver.

When I became a real hands-on caregiver, I often went to Aunt Fay for advice. She’s Mom’s younger sister, and she cared for both her mother and her husband for many years. One thing she told me was to keep a journal, because one day my experiences might be of help to someone else, and I took her advice. I didn’t write every day, but after a particularly trying episode, I’d write about it and post it on Facebook. It was a safe way to vent, people responded positively, and I was encouraged to continue to write.

Later, my husband David and I bought a motor home and fell in love with the RV life. We were both retired, so we decided to take an extended trip through the southeastern part of the United States. Mom and Dad were living with us by then, so they were included in the plans. I knew that sharing a tiny living space with two people with Alzheimer’s, even two people I loved dearly, would lead to many trying episodes, so I took along several of my favorite pens and a spiral notebook.

Initially, I had no larger purpose in mind than to keep a record of our travels and perhaps gather material for a few Facebook posts. But situations that can be overlooked in a 2,600 square foot home are in your face in a 40-foot RV, and I began to pay closer attention to what was going on. I discovered more than I wanted to know about how much Alzheimer’s had taken from Mom and Dad. I realized that the simple tasks of taking a shower or shaving had become overwhelming, and simple decisions like ordering from a menu were impossible. I also recognized my own denial of our new reality.

By the time our journey was nearing its end, I began to wonder if my journal might be more than just a practice exercise, and visions of a book danced in my head. Once we were home and settled, I transcribed the handwritten manuscript onto my computer and polished it a bit. I asked my son, who had already published several books, to take a look at it. His response went something like this:

“You tell a good story, but where is your story? Why are you in Florida; why are you caring for your parents; and who is David?”

I went back to the keyboard, and for the next several years I edited again and again. I worked hard to break through the protective barriers I had built around my own feelings and to share the harsh realities of this horrible disease and the good, the bad, and the ugly of how I dealt with being a caregiver. When I finally went public, my readers said my story made them feel less alone. By exposing my own fears and failures, I had given them permission to accept their own shortcomings and to tell their own stories.

I began to write because it was personally therapeutic, but I continue to write because my stories touch others. People who have little joy left in their lives laugh with me at the antics of my sweet family; those who have shed an ocean of tears are encouraged when they discover that someone else understands; and some who feel like caregiving is a dead-end are inspired to keep living in spite of their situations. My book isn’t a best-seller, but as it helps ease the burden of those who are dealing with Alzheimer’s, it somehow gives a sense of meaning to Mom and Dad’s struggle – and that is all the success I could hope for.

About the book:

A LONG AND WINDING ROAD: A Caregiver’s Tale of Life, Love, and Chaos is the story of the chaos that happens when four people, two of whom have Alzheimer’s, spend fifty-three days in a 400-square-foot box on wheels.

Linda Brendle takes you on a roller-coaster ride of emotional and spiritual challenges that many families are facing right now. Co-dependency, mental breakdowns, and finding love after divorce are just a few of the issues weaved into this journey of caregiving.

About the Author

Head Shot - Leaning on Hand

I cared for my mother and father, both of whom had ementia, for fifteen years. After that season of my life passed, my husband David and I moved to the country where I work part-time at my church, garden when the notion strikes, tend to the whims of the feral cat who took over our home two years ago, and write about all of the above.

Connect with Linda Brendle

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Meet Meg Foster, author of “7 Spiritual Steps for Caregivers: A Path to Meaning and Hope in Alzheimer’s & Dementia Caregiving”

1st 7 Spiritual Steps for CaregiversBy Meg Foster

According to Alzheimer’s International, globally, there are nearly 44 million people that have Alzheimer’s or a related dementia.

In America alone, there are 5.3 million living with Alzheimer’s disease. 74% of caregivers of people with Alzheimer’s disease and other dementias reported that they were “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver.

Certainly these caregivers and their loved ones are in a health care crisis

The immediate needs of these families in crisis are practical care coordination support and resources. But as those needs are sought by families, which is no easy task unto itself, there are also emotional and spiritual needs of the caregiver that cannot be overlooked, but are, in most instances.

I summarize that need as Spiritual Health — the emotional, physical, spiritual and social well-being that is critical for caregivers to sustain this caregiver journey.

I was the caregiver to my husband Dean, who was diagnosed with Frontotemporal Dementia (FTD).  It was a tough, long path of seven years for Dean. But for me, as his caregiver, I was on a different but related path — the caregiver path.

Often Alzheimer’s and dementia caregivers feel lost, alone, and overwhelmed. I wrote 7 Spiritual Steps for Caregivers: A Path to Meaning and Hope in Alzheimer’s & Dementia Caregiving to alleviate those feelings with a self-awareness process and tools.  This is a straight-forward structured guidebook for family caregivers to discover and build upon their spiritual health foundation which will strengthen them for this arduous journey.

Through growth in self-awareness and the strengthening of a spiritual foundation, caregivers can then experience ease, meaning, and hope in the reality of their daily caregiving duties with their loved one, thus reducing stress, anxiety, and feelings of being lost, alone and overwhelmed.

The feedback on the book has been positive and I’m excited to share this information. A recent Amazon book reviewer said, “Good resource and worksheets for caregivers. It gets you through the process with more grace and forgiveness, so that you can be the calm in the storm.” I hope many others can have easy access to spiritual help and that gives me satisfaction that my experience can be useful for others. There’s an ebook, paperback and expanded journal paperback available on Amazon.

Wishing you Light on your Caregiver Path,
Meg Foster

Purchase 7 Spiritual Steps for Caregivers Journal: A Path to Meaning and Hope in Alzheimer’s & Dementia Caregiving 

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Connect with Meg Foster

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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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Meet Linda Jenkins, Author of “To Helen With Love: A Memoir of a Daughter’s Caregiving Journey”

Cover To Helen With Love_By Linda Jenkins

After five years in the making, writing this memoir has been one of the most intense endeavors I’ve ever taken on, but well worth it.

While I was writing this memoir I discovered how much pain I still had deep inside of me. Pain from some of the experiences. Pain from not knowing what or how to deal with dementia. Pain of not understanding what caregiving entails. Pain from dealing with the healthcare field. Finally, pain when it’s all over. Continue reading

Meet Rick Lauber, author of “The Successful Caregiver’s Guide” and “The Caregiver’s Guide for Canadians”

Front Cover Shot - The Successful Caregiver's GuideBy Rick Lauber
What motivates a writer to write a book? It could be to share a story, educate/help the reader, or to entertain. I wrote both my books to support readers, raise awareness for a growing issue, increase understanding, and also to personally cope.
Before becoming a twice-published book author, I was a former co-caregiver (working with my two sisters) for my own aging parents (Mom had Parkinson’s disease and Leukemia while Dad had Alzheimer’s disease). This was not a job I was Continue reading