Many thanks to @blipiq for inviting me to write a post in appreciation to long-term #caregivers. https://blipiq.com/media/blog/thank-a-caregiver/?utm_source=referral&utm_medium=web&utm_campaign=engagement&utm_term=caregiver&utm_content=Jean-Lee

Meet author and blogger, Wendy Mitchell

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 31^st 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

Meet Dr. Don Wendorf, author of "Caregiver Carols"

By Don Wendorf

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. So, I told my/our story and shared a wide range of my experiences and emotions, including some of the hardest and least discussed, particularly anger, guilt, shame, sexuality (gasp) and grief. One selection even talks about my wishing she might die, which she actually prayed to do. And, I don’t imagine I’m the only one who ever fantasized about that. Despite being a psychotherapist myself and “knowing all about this” I got massive burnout and I didn’t want anyone else to go through that.

I wrote the book in a combination of regular prose and song lyrics/rhyming verse to make these difficult, scary, often painful reflections or topics more easily absorbed, processed, retained, recalled and used. I hoped the humorous, artistic, metaphorical, creative, entertaining format would help people deal with their own “stuff” but I also found that the creative, expressive arts may be as helpful to caregivers as they have been increasingly found to be with persons living with dementia.

The process of composing these songs or lyrics gave me a nurturing, safe retreat to go to; a place to step back from my daily stresses and emotional struggles and look at things from another perspective; a source of insight into what was going on with me (and us); and even enjoyment in the act of creating. I found I would jump into a passage I was working on in my mind as I ran for exercise or did errands or cleaned up or cooked or dressed Susan or changed diapers. I would have verses or rhymes pop into my head when I was upset or tired or anxious or bored with the routine or frustrated with her. So, I’ve become an advocate for the expressive arts for caregiver self-care as well as for caregivees and I push it as much as healthy diet, regular exercise, restorative sleep, seeking help, staying socially involved and constantly challenging our brains to learn and grow. I perform several pieces from the book when I speak at conferences or to support groups, as well as quoting some passages to demonstrate what I mean.

Verse

Where’s my road map, my directions? Where’s my GPS? How will I know where I am going? Trial and error? Guess? Where’s a road sign? Find a landmark. What am I to do? I’m just groping in the dark and haven’t got a clue.

Chorus

Caregiving comes without handbooks or rules, No set of instructions, no box full of tools.

I want to choose rightly, I want to do well.

But making decisions is caregiving hell.

Dr. Don Wendorf on Facebook.

Don Wendorf, Psy.D. is a retired psychologist and marriage & family therapist, who practiced over 40 years, specializing in marriage therapy. He retired in 2013 to be the full-time caregiver for his increasingly stroke-disabled wife Susan, after taking care of her and working for 15 years. She passed away in March 2014. He also helped to take care of his mother-in-law (cancer), father (Parkinson’s) and mother (Alzheimer’s). Don has been a professional musician since his high school days, playing in a variety of jazz and bluegrass bands as well as writing songs. He combined all these interests and experiences in two books, one on marriage (Love Lyrics: The Musical Marital Manual) and one on the emotional struggles in caregiving (Caregiver Carols: a Musical, Emotional Memoir), both written primarily in song lyric (rhyming light verse) form to be most easily accessed, absorbed, recalled and applied. He has two sons, two daughters- in-law and five marvelous grandchildren. Don and his wife Lynda are also avid hikers and advocates for increased funding for Alzheimer’s research. They met when he contributed to her book, Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers and together they have edited several additional books for caregivers.

Meet 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 two basic needs: affirmation that caregiving is not in vain, and reassurance that the lives of those for whom they care are not being lived in vain. We also believe that care receivers need more than medical attention; they need tender care, involvement in the community, and a sense of connection with a loving God.

This book, based on personal stories of caregivers and receivers, shows how each plays a major role in acts of love that bring transformation to both. Our perspective is that caregiving is an extension of spiritual life, and we hope our book will aid families and professionals to look beyond day-to-day routines and chores and accept their role as an opportunity to serve the total person in body, mind, and spirit. We offer suggestions for the spiritual care of persons with dementia, and helpful tips for leading support groups and worship services for persons with dementia. Our goal was to move beyond the medical model of care and provide the missing piece for caring for persons with Alzheimer’s or other forms of dementia. No act of love is ever wasted as every act of love brings positive transformation to the recipient, to the giver, and to the world.

Drawing on 60 years of experience as a pastor, hospice chaplain, volunteer, and a friend to dying persons, I wrote At the Edge of Life: Conversations when Death Is Near, to offer perspective and counseling for people coping with a family member, friend or patient who is approaching the time of death. Serving in these roles, I learned either to be still or to carry on a conversation with those who are dying. The 30 meditations offered take us from accepting our own mortality, to the impending death of someone we care about through making preparations, to finding closure, and the dying moment.

Each meditation contains personal stories and quotations from scripture which lead into reflective questions and prayer. I wrote At the Edge of Life to help us listen, talk, and relate to each other so that those of us who remain behind are able to both give and receive the gift of this final conversation. I hope that the book will bring a sense of peace that gives readers confidence as companions to the dying. Since its publication in 2014, At the Edge of Life has been on the Amazon list of 100 Best Seller Books on Death and Dying and has received the Illumination Book Award.

About the Author

Richard L. Morgan, Ph.D., a retired Presbyterian (USA) pastor, stays busy writing and volunteering in pastoral care at the Redstone Highlands retirement community where he lives with his wife, Alice Ann. In addition to his seminary training, he has an MA in Counseling and training in clinical pastoral education. He is the author or co-author of 20 books, including best sellers: No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia and Pilgrimage Into the Last Third of Life, both written with Dr. Jane Marie Thibault, and At the Edge of Life: Conversations when Death Is Near. He was honored with the 2013 Legacy Award by the Older Adult Ministry Network of the Presbyterian Church (USA) and is a founder of the ClergyAgainstAlzheimer’s network.

Connect with Richard L. Morgan, PhD
Upper Room Book

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 seventy-two 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.

"The Beach Poems" poetry by Ann Campanella

 

By Ann Campanella

Expressing the Inexpressible through Poetry

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 here

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)

Ann 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)

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 of the Gender Studies Program at the University of Utah, trouble remembering what I had prepared for class while teaching, embarrassments such as asking people in a meeting to introduce themselves when they had already done so.

Given my suspicions, my diagnosis came as a relief: I was not just being lax or not trying hard enough, or imagining things. The white spots on my MRI and 20-point drop in my IQ were very real. The diagnosis was also a wake-up call: how was I going to live with joy and engagement during the 15 years I probably had left? How was my family—husband Peter and children Marissa and Newton and their spouses—going to live with and care for me?

From the time my children were small, our family had talked about what each of us thought of as a worthwhile quality of life and how to consciously live during each of its stages. Questions arose: What does a worthwhile life look like for someone with dementia? What will be the markers for when my life no longer has the kind of quality I value? Will my family be prepared to support the legal assisted death I wish for when my life no longer meets my criteria for a meaningful life? Our family talked about end-of-life issues and how each one of us interpreted a worthwhile life. In my book I list some of my criteria for a worthwhile life and share how my children and their spouses have given me their support in my quest for a legal self-death, and how we formalized our arrangements with my doctors and a lawyer.

Completing my end-of-life plans was enormously comforting. I could get on with my life. I could participate in family activities, figure out how to get around after I gave up my driver’s license, enjoy reading (which includes a lot of re-reading, because I forget), working in my garden (many bruises attest to my lack of balance)—in other words, live joyfully each day. Might I even be able to fulfill my retirement goal of writing a book?

When I retired after my diagnosis, I started a journal to document my daily difficulties. With a wink at my bachelor’s in science, I called it Dementia Field Notes. I would be an anthropologist, following the life of one member of the tribe of Dementers—myself. My journal entries led to essays that tackled the questions: What, actually, is memory, personality, identity? What is a self? Will I still have a self when my reason is gone? How come I can’t make coffee without mishaps, but can still write? My essays became the chapters of Memory's Last Breath.

The purpose of my book is this: to add my personal story to the vast body of science about dementia accumulated by the lifetime efforts of neuroscientists, neuropsychologists, other medical researchers, and healthcare providers.

My book is for you, whether you pick it up because you or someone you love has dementia, or because you’re a medical professional, or a person searching for your own self after a huge life change, or someone just plain curious, who—like me—feels that the more you know, the better you love.

About the Author

GERDA SAUNDERS grew up in South Africa, where she obtained a B.S. in Math and Chemistry from the University of Pretoria. After working as a research scientist at the South African Atomic Energy Board for three years, she taught Science and Math at Kempton Park (Afrikaans) High school and Math and Physics at the Kempton Park Technical Institute. In 1984, she settled in Utah with her husband Peter and two children. While enrolled in an English PhD at the University of Utah in 1996, she taught Business- and Creative Writing. After graduation, she worked for seven years in the business world as a technical writer and program manager. In 2001, she became the Associate Director of Gender Studies at the University of Utah. In addition to her administrative role, she taught classes in gender studies and English Literature. In 2002, SMU Press published her stories Blessings on the Sheep Dog, about which Nobel laureate J.M. Coetzee said, “With cool intelligence, laconic wit, and deep feeling, Saunders explores the moral chaos of South Africa and the pain of a new generation of…exiles.” At the time of her sixty-first birthday, she received a diagnosis of microvascular disease, a precursor of dementia. Having retired shortly after her diagnosis, she now enjoys time with her family, including three grandchildren. Other interests are community work and writing. In Winter 2013, The Georgia Review published her essay about the effect of her brain’s unraveling on her identity, “Telling Who I Am Before I Forget: My Dementia.” The essay was reprinted in other publications, including in the online magazine Slate. From Saunders’s essay grew a memoir, Memory’s Last Breath: Field Notes on My Dementia (2017).      Gerda’s website
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