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
I wrote CAREGIVER CAROLS: A Musical, Emotional Memoir to cope with my own emotional struggles as a caregiver for my late wife Susan with her strokes and vascular dementia and to help other caregivers deal with their feelings. I wanted them to see that their emotions, while often complex, intense or unpleasant were normal; to know they were not alone, while encouraging them to ask for even more help than they thought they needed; and to suggest very practical things for them to try to manage their feelings better. Continue reading
By Richard L. Morgan, PhD
Listening to the needs of caregivers as a facilitator of Alzheimer’s support groups for many years, I became aware that care giving and receiving are opportunities for mutual spiritual growth.
Collaborating with gerontologist, Jane Thibault, Ph.D., we wrote, No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia. It is our belief that caregivers have Continue reading
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
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
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
Silent 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:
Co-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:
Connect with Marita:
I was six years into my medical training – a second year resident in family medicine – when I saw the first patient who I now know had Alzheimer’s disease. A middle-aged man brought her in, explaining that she was his mother and that the family was at wits end. His mother didn’t seem sick, he explained, but she couldn’t remember “anything,” made poor decisions, and would wander off and get lost if left alone. In the examining room, she wouldn’t sit down. From my limited Continue reading
On a drizzly April day in 2009, I walked into a hotel suite in downtown Pittsburgh to meet members of a North Dakota family stricken with a rare genetic mutation that guarantees early-onset Alzheimer’s disease.
My life changed profoundly that day. Up to that point, I knew precious little about Alzheimer’s. I was a journalist on assignment for the University of Pittsburgh, whose Alzheimer’s Disease Research Center had been studying the
DeMoe family for a few years. I was stunned by the magnitude Continue reading
A Husband’s Alzheimer’s, A Wife’s Devotion
“Mom,” my daughter Kim said, “You know you’re going to have to write a book about how you’re dealing with Dad.”
I recoiled at the thought. It was all I could do to get through each day of unknowns and added responsibilities. “No, hon. I have to live this before I can write about it. I have no energy to think about ministering to others right now. Maybe after it’s all over—maybe then, I could think about writing—but not while I’m dealing with all this raw emotion. I’m still finding my way.” Continue reading