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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Meet Gerda Saunders, author of “Memory’s Last Breath”

By Gerda Saunders

A few days before my sixty-first birthday, I was diagnosed with cerebral microvascular disease, which is the leading cause of dementia after Alzheimer’s disease. My mother also had dementia.

My diagnosis was not a total surprise—for about five years I had a short-term memory loss that led to pots on the stove at home boiling dry, washing my hair twice in an hour, forgetting to bake a casserole I had made the night before. At work, it led to a slowness in my job as the associate director Continue reading

Meet Peter Maeck, author of “Remembrance of Things Present”

0By Peter Maeck

The experience of writing a poem, play, or story, or creating a photograph, is like riding a train through wonderful, unexpected scenery. When I wake up in the morning I hurry to get to work because I never want to miss that train. My train derailed the morning of my father’s Alzheimer’s diagnosis. Dad hadn’t chosen a trip into dementia but here he was on track to forget his friends, his family, and even his own name. Dad told me to Continue reading

Meet Marita Golden, author of “The Wide Circumference of Love”

Golden, Marita CoverSilent Storm: What We Remember, What We Forget, What We Discover

A Novelist Meditates on Writing about Alzheimer’s

By Marita Golden

I didn’t choose. I was called. That’s how inspiration, art, and creativity work sometimes. I am often asked why I wrote a novel about Alzheimer’s disease.

I am not caring for anyone afflicted with it and no one in my family, from what I know, has ever been diagnosed with dementia or Alzheimer’s. So there was nothing in my life, my past or my then-present to explain the fictional expedition I launched. This is what happened: I was trapped inside the wrong story. I had written 100 pages of a novel that was going nowhere very fast. So I stopped, took a breath and gave the process over quite literally to a higher power. I was willing to “let it be.” Two weeks later I was writing the story of a wife who finds herself and the nature and meaning of love transformed as she cares for her husband who has been diagnosed with early Alzheimer’s disease. Sometimes as a writer you get called, summoned to dive in, to plunge into the terrifying beauty of a completely unknown narrative landscape. When you report for duty, that is when you know you are writer.

Four years later, after hearing the stories of those with Alzheimer’s, their caretakers, the professionals who care for them, the families who are burdened and sometimes buoyed by the demands of the disease, the researchers trying to find a cure, the was novel finished. I realized that I had started out as a novelist and ended up as not only a novelist, but an activist/advocate for greater awareness about the epidemic of Alzheimer’s in Black America.

I met adult children who found themselves stunned and incompetent in the face of a parent’s diminished capacity, and others who unflinchingly faced the disease and embraced their parent with the kind of transcendent love and loyalty of which they never knew themselves capable. I gave a 20-minute talk and reading about my life as writer before a group of residents of a memory care unit. They taught me to be here now, the value of the present moment and that they are indeed present, sensitive, intuitive. They remember the most important things–the meaning of human touch, an honest look in someone’s eyes, that a whole story can be told in a fleeting fragment of an iridescent memory of joy, and that words are often overrated.

But it was the statistics that turned me into an activist/advocate, that convinced me that maybe I was the right vessel to capture, contain and pour this story into the hearts and minds of readers. Statistics reveal a “silent storm” raging in the Black community. If Alzheimer’s is a crisis for America, it is an epidemic for Black America. African Americans are twice as likely as whites to develop the disease, are only three percent of those enrolled in trial to find a cure, and could be 40% of all those with Alzheimer’s by 2050.

Sometimes a story asks to be written and then asks to be used as a platform. My novel, The Wide Circumference of Love, about the Tate family, Gregory, Diane, Lauren and Sean is a story for everyone who has been alive long enough to hurt and heal, to feel coursing through their blood the strange strength borne of all we are sure we cannot bear.

All art is political, and social, and at its best engages in a frenzied dance with everything being thought and lived and denied and discovered swirling around it.

A story is never “just a story”. A book is never “just a book.”  A story, a book, can set the world on fire or give a writer, or a reader, something to believe in or fight for.

About the Author:

Golden, MaritaCo-founder and President Emeritus of the Zora Neale Hurston/ Richard Wright Foundation, Marita Golden is a veteran teacher of writing and an acclaimed award-winning author of over a dozen works of fiction and nonfiction. As a teacher of writing she has served as a member of the faculties of the MFA Graduate Creative Writing Programs at George Mason University and Virginia Commonwealth University and in the MA Creative Writing Program at John Hopkins University. She has taught writing workshops nationally and internationally to a variety of constituencies.

Her new novel is The Wide Circumference of Love.  Her other books include the novels, After and The Edge of Heaven and the memoirs Migrations of the Heart, Saving Our Sons and Don’t Play in the Sun: One Woman’s Journey Through the Color Complex. She is the recipient of many awards, including the Writers for Writers Award presented by Barnes & Noble and Poets and Writers and the Fiction Award for her novel After awarded by the Black Caucus of the American Library Association.

Her cover story for the Washington Post Sunday Magazine on African Americans and Alzheimer’s diease can be found here:

African Americans are more likely than whites to develop Alzheimer’s. Why?

Connect with Marita:





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