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.

Like many others, I was away from organized religion for many years. Late in 2009 a neighbor invited me to attend Sunday services with her. I had just reluctantly and painfully moved my husband to an assisted living facility.

Early the next year George and Trish Vradenburg launched their non-profit, UsAgainstAlzheimer’s. I was immediately drawn to their bold vision of stopping Alzheimer’s by 2020 and joined them as a founding member of both the Activists and Women’s Networks. Over the next few years, I came to believe that a network of interfaith clergy would offer an important and powerful voice in our efforts to advance better care, prevention, and ultimately, a cure for this merciless disease.

In 2014 UsAgainstAlzheimer’s Director Ginny Biggar and I set out to create ClergyAgainstAlzheimer’s and were quickly joined by an amazing team of passionate volunteers: Max Wallack, Rabbi Steven M. Glazer, Rev. Dr. Richard L. Morgan, and Dr. Daniel C. Potts.

We initially hoped to recruit about 20 interested clergy to be founders; but in just 4 months, we had over 110 founding members and went on to recruit additional clergy, laity and faith organizations.

With our interfaith network in place, it was Dr. Potts who suggested the idea for a book of meditations with these words, “Here is something to think about…” Literally, overnight, our thoughts melded into this project with an outline, a book title, original artwork, and a strategy for implementation; and in 5 months we published “Seasons of Caring.”

Our book was written to offer hope, encouragement, compassion and empathy to those on the difficult journey of caring for loved ones with Alzheimer’s disease and other dementias.

The book is organized around themes and metaphors of seasonal transition, with each of the four seasons paralleling the various stages of life. The 141 entries open with quotes from scripture, sacred text or other inspirational text. The original writings by 72 authors representing a great diversity of spiritual traditions range from thoughtful meditations to poignant personal stories, moving poems and meaningful songs. Each is followed by a prayer and words of comfort and encouragement.

We are grateful to our authors, caregivers themselves, who so generously gave of their time, experience and counsel.

The words of Pope Francis bear repeating as they well describe the intent of ClergyAgainstAlzheimer’s and “Seasons of Caring”, “Do not let yourselves be robbed of hope! And not only that…let us become bearers of hope!” Visit www.SeasonsofCaring.org to learn more about our mission and work, and to find resources for faith communities, including sermons, books, programs, and actions you can take that will help us defeat Alzheimer’s.

Seasons Editors

About the Author

Lynda Everman has spent most of her adult life – 24 years – as a caregiver, first for her mom who was paralyzed by a stroke and later died from complications of diabetes, then for her dad who, in 1994, showed symptoms of vascular dementia, and finally for her husband who was diagnosed with Mild Cognitive Impairment in 1997 and passed away from Alzheimer’s Disease in 2012.

It was because of these experiences, especially those related to the relentless individual and societal toll of dementia that Lynda was called into advocacy for increased awareness, better treatment, prevention, and, ultimately, a cure for Alzheimer’s and related dementias.

She and fellow advocate Kathy Siggins have mounted a national campaign for a semipostal (awareness and fundraising) stamp for Alzheimer’s research and have created the Help Stamp OUT Alzheimer’s facebook community to further this effort.

Lynda is a board member of B.A.B.E.S. (Beating Alzheimer’s By Embracing Science), a founding member of ActivistsAgainstAlzheimer’s,  WomenAgainstAlzheimer’s, and has recently served as founder and convener to ClergyAgainstAlzheimer’s.  She is an editor and contributor to “Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers”, an interfaith volume with more than 140 original meditations from seventy religious leaders and care specialists representing seventeen faith traditions. She and her husband, Dr. Don Wendorf, have served as editors for the Leader’s Guide for Seasons of Caring and Treasure for Alzheimer’s, both written by Dr. Richard Morgan, a fellow Clergy Network founder and well-known author on issues of aging and caregiving. Because of her relentless advocacy, she has been recognized by Maria Shriver as a woman of  influence in the Women’s Alzheimer’s Movement and included on Maria’s “Big Wall of Empowerment”.

A retired Human Resources professional from the University of California, Lynda is determined to change the trajectory of Alzheimer’s disease through public policy, increased funding for biomedical research, and recruitment of volunteers for clinical trials. Lynda is honored to speak on behalf of those with dementia and their loved ones and has addressed caregivers with her powerful message of being “The Voice: Advocating for your Loved One.” She may be contacted via the Help Stamp OUT Alzheimer’s facebook page, on Twitter @helpstampoutalz or by email @ ldeverman@icloud.com.

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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.

Mom always said her children kept her young. There was a span of ten years among us, and I had vivid memories of my mother hiking, playing tennis, swimming and sailing at the upstate New York lake we visited each summer.

My grandmother and great aunts lived into their nineties. I had imagined my mother would always be there for me, at least until she was well into her eighties. But it wasn’t to be.

My mother’s mind began to unspool at the same time I was trying to become a mother and struggling through a series of miscarriages. At first her memory became slippery and she began repeating stories. Her emotions seemed out of proportion to what was happening in her life. Her words no longer matched her behavior.

Mom’s descent into Alzheimer’s was heartbreaking and beautiful at the same time. Heartbreaking because she was aware that “something wasn’t right.” It was painful to see her struggling to present a healthy face to the world when her memory was disintegrating. Beautiful because my mother’s spirit showed through her trauma, and the disease became a stage upon which the love in our family could be illuminated and acted out.

Poetry has long been a way for me to attempt to express the inexpressible. When the jagged edges of loss threatened to undo me, writing poems provided a way to hold onto pieces of my mother. Each poem or “stage act” allowed me to bathe my mother’s life in light and meaning.

What Flies Away is a collection of poetry that tells the story of my mother’s illness, my father’s sudden death and the miraculous birth of my daughter. This collection of poems won second place in the Oscar Arnold Young Book Award for the best book of poems in North Carolina in 2007. I was also honored that two of the poems, “The Chase” and “How to Grieve,” earned the Poet Laureate Award.

Now, ten years later, my collection, The Beach Poems, has been published. I consider it a sequel to What Flies Away, as this group of poems shares the story of what “comes after.”

I’ve always loved Anne Morrow Lindbergh’s Gift from the Sea, a book where the author reflects on the patterns of her own life. I was able to do this at the beach.

My mother had Alzheimer’s for fourteen years, and her disease changed me. After a decade and a half of caretaking, it took time for me to find myself again.

During a series of retreats, I spent time walking the sand and absorbing the rhythm and beauty of the coastline. Gradually, held in the arms of the wind and waves, I was able to release my grief and begin to heal. Memories of my mother and the time before she was ill slowly trickled in. To my surprise, joy washed over me and I felt my spirit come alive again.

Writing about my mother’s Alzheimer’s experience, whether through poetry or prose has been a privilege. I spent 20 years working on my memoir, Motherhood: Lost and Found, which was featured on this site on January 18th, 2017. My memoir has been recognized internationally and my poems have received many awards.

But I’m most grateful to have had the opportunity – through readings and speaking engagements – to meet and link hearts with those who are walking their own difficult path through Alzheimer’s. The Beach Poems is my gift to them.

 

I am hereBookWhatFliesAway

at the edge

of the earth

face down

on a mat of sand

wind cups the curves

of my body, waves

a constant roar

in my ears

blue belt of sky

presses against the horizon

I think of my mother –

all that was and never will be –

cry out into the void

nothing

but wind and sand and sea

my mother is here

and not here

and always will be

I hug the earth.

(from The Beach Poems, Main Street Rag Publishing Company)

 

20170531_220159000_iOSAnn Campanella is the author of the award-winning memoir, Motherhood: Lost and Found. Formerly a magazine and newspaper editor, her writing has been widely published. She blogs about her life and horses at Fields of Grace and has been a guest on many blogs and podcasts. Ann’s poetry has been featured on Garrison Keillor’s The Writer’s Almanac. Twice, she has received the Poet Laureate Award from the North Carolina Poetry Society. She lives on a small horse farm in North Carolina with her family and animals.

www.anncampanella.com

Fields of Grace

https://www.amazon.com/Ann-Campanella/e/B001JOWQ3A (Amazon Author page)

https://mainstreetragbookstore.com/?product=the-beach-poems (Main Street Rag Online Bookstore)

@authorAnnC (Twitter)

@anncampanella.author (Facebook)

horse_2nd_time_around (Instagram)

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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:

www.facebook.com/marita.golden

www.maritagolden.com

Amazon

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Meet Philip D. Sloane, MD, author of “Alzheimer’s Medical Advisor: A Caregiver’s Guide”

The Alz Medical AdvisorBy Philip D. Sloane, MD

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

Meet Niki Kapsambelis author of “The Inheritance”

The Inheritance book cover FINALBy Niki Kapsambelis

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

Meet Candy Abbott, author of “I’ve Never Loved Him More”

9781938796081 COVER - Front RGBBy Candy Abbott

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

Meet Christina Britton Conroy, author of “How to have Fun with your Aging Parents”

978-1934912-77-5 cvr 2By Christina Britton Conroy

When I was twenty-seven, my sixty-year-old mother died of cancer. I was left to care for my temperamental, over-controlling, eighty-year-old father. While grieving for my mother, I was also angry with her for dying young. Taking care of her elderly husband was supposed to have been her job, not mine.

Dad was bored, lonely, and wanted me to come over daily. I was a fulltime musical theatre performer struggling to build a career, find a husband, and a start a family of my own. An aging father did not fit into that equation.

We had never had fun together, and I didn’t know what to do with him. I finally figured out that the only thing he enjoyed was talking about himself. I didn’t know it, but reminiscing with him was the start of my work as a Creative Arts Therapist. Continue reading

Meet Lori LaBey, founder of Alzheimer’s Speaks

A Gift in a Strange Package

LoriLaBey

By Lori La Bey, founder of Alzheimer’s Speaks

I have to admit caring for my Mother with dementia was not on my bucket list. In fact, the possibility never crossed my mind. Dementia crept into our lives slowly. Its visits were spontaneous and behavior changes subtle, giving me the perfect excuse to live in denial. Continue reading