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 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

Meet Barbra Cohn, author of Calmer Waters

COVER.inddI spent a decade caring for my husband Morris, who died from younger-onset Alzheimer’s disease in August 2010. Afterward, I was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” to help other caregivers feel happier, have more energy and time for themselves, sleep better, feel more relaxed and confident, and experience inner peace . . . Continue reading

Meet author and Alzheimer’s caregiver advocate, Joy Johnston

 

Joy Johnston 1I write about Alzheimer’s because my father’s experience with the disease turned me into an advocate, not just for those with Alzheimer’s, but for their caregivers as well.

My father lived with Alzheimer’s disease for about four years. In that time, my father went from fully independent to living in a memory care center. My mother went from healthy and active to stressed and exhausted, and I believe the prolonged period of stress contributed to her colon cancer diagnosis, just six months after my father died. Continue reading

Meet Deborah Shouse, author of Connecting in the Land of Dementia: Creative Activities to Explore Together

unnamed-1Fingers on the Keyboard, Heart on the Page

By Deborah Shouse

As my mother moved deeper into dementia, I treasured every moment of connection with her. Often it was only a minute or two, sitting shoulder to shoulder on the bench in the courtyard of the memory care unit, watching the community bunny rabbit nibble on grass. Leafing through a celebrity magazine and Mom pointing to George Clooney Continue reading

Meet Kathryn Harrison, author of Weed in Nana’s Garden

Weeds in Nana's Garden_Cover_1024px“To plant a garden is to believe in the future.” Anonymous

It was a spectacular day in my mother’s beautiful garden. And despite her recent decline from dementia, my mom, or “Nana”, walked happily together with my young daughter and I. My active 5-year-old girl skipped ahead through the now somewhat overgrown beds, but soon circled back with freshly picked blooms to share. Continue reading

Meet Tracy Vanderneck, author of The Risk of a Fall

theriskofafallFlorida is the retiree mecca of the United States. As residents, we are used to conversations that begin with, “You live in Florida? My parents retired there…”. Yes, we know. Everyone’s parents retire here. My family was no different; we migrated after my grandparents retired here in the 1970s. Continue reading

Rose Lamatt, author of “Just A Word”

by Rose Lamatt

Just a Word coverWhen I found Carol’s little black date books in storage and my recordings of Carol’s fight with Alzheimer’s, I knew I needed to combine the two and write a book. That’s what I did, so others would know this awful disease.

In 1990 little was known about Alzheimer’s when the doctor called saying, “I’m sorry, Carol has a dementia disease known as Alzheimer’s.” She was sixty-four years old and I didn’t believe it. I had to fight my way in and out of the disease’s process to learn it. Being a gay couple, we didn’t run into many folks like us at caregiver support groups and felt this story needed telling. Continue reading

Author Marie Marley Shares Tips for Caregivers

Carolyn is an 85-year-old retired school teacher living independently in Houston, Texas. She is beginning to need assistance managing her affairs and caring for herself. She’s having problems with bathing, dressing, cooking, getting to doctor appointments, doing her shopping and paying her bills. Her only child, Ralph, lives in Dayton, Ohio. He worries about his mother constantly and wishes he lived closer so he could help her out. He knows he needs to take action; he just doesn’t know what to do.

Martha is another 85-year-old whose needs are different from those of Carolyn. Martha’s memory and mental functioning are declining at an alarming rate, and she’s received a diagnosis of Alzheimer’s. It’s obvious that she isn’t safe living on her own. Her daughter, Susan, who lives nearby, hired a home-care company to help care for her mother. But Martha hated the arrangement and fired the caregiver the company had sent. Continue reading