Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.


Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Wednesday, December 6, 2017

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.

Tuesday, November 28, 2017

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.
Morgan cover 1Collaborating 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.
Morgan cover 2Drawing 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

Wednesday, November 22, 2017

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.

Wednesday, November 8, 2017

"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.





@authorAnnC (Twitter)

@anncampanella.author (Facebook)

horse_2nd_time_around (Instagram)

Wednesday, November 1, 2017

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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Wednesday, October 25, 2017

Meet Peter Maeck, author of "Remembrance of Things Present"



By 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 stay calm, the decline would be gradual, and maybe some good might come from this. What good, I wondered, could come from shock, grief, and despair? The good that came was a new dimension to my father's relationship with his family, and a revelation to me that dementia’s grip is loosened by the power of poetry, pictures, music, and love. I wrote Remembrance of Things Present – Making Peace with Dementia to celebrate my father's brave, good-humored journey through Alzheimer's, and to show how such an affliction can actually draw loved ones closer together instead of driving them apart.

Viewed as a biological deterioration of the brain, Alzheimer’s is terrifying. But seen as fermentation which is not spoilage but transformation – grapes into wine, for example, or milk into cheese ­– it can enhance the caregiver-patient relationship. Indeed, my father and I moved from a prose relationship into one of poetry which was no better or worse, just different, where we engaged more in rhyme than in reason, freezing time then melting it and joining in a lyrical realm between past and future where, instead of fighting dementia, my father and I embraced the changes it provokes.

When presenting my story at TEDx events, Alzheimer’s Association gatherings, and mental health conferences in the U.S. and abroad, I hear caregivers, familial and professional, confess their frustration, regret, despair, and even rage when dementia is diagnosed. Clearly, caregivers need and deserve care giving as much as their patients do. People attending my presentations and reading my book have been comforted, consoled, and buoyed in their efforts to care for their dementia-afflicted loved ones.

My book tracks my passage through the Kübler-Ross stages of grief, from resistance to acceptance of my father's dementia. At Dad's passing I sense that he is in a state of peace. My own peace is achieved by reflecting upon our shared experience, and ultimately by writing my book.

If art can offer no more than symptomatic and palliative relief from the effects of Alzheimer’s Disease, that is no less than modern medicine has done to date. Ideally, art and science can work together to reduce dementia’s effects and ultimately to reach a cure.


Social media links

Website: http://www.petermaeck.com
Photography website: http://www.petermaeckphotography.com
Pinterest: https://www.pinterest.com/petermaeck/
Twitter: https://twitter.com/PeterMaeck
Facebook: https://www.facebook.com/peter.maeck.1
Facebook- Photography Page: http://www.facebook.com/pages/Peter-Maeck-Photography/253144378061964?skip_nax_wizard=true
Facebook- Author Page: https://www.facebook.com/Peter-Maeck-Author-414391928926496/
Instagram: https://www.instagram.com/petermaeck/

Wednesday, October 18, 2017

Meet Marita Golden, author of "The Wide Circumference of Love"


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:

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

Connect with Marita:

www.facebook.com/marita.golden

www.maritagolden.com

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Wednesday, October 11, 2017

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


By 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 history and examination, it was clear that she had a problem involving memory, judgment, and communication. This was not a little forgetfulness, it was a progressive problem that the family was struggling to understand and cope with. I asked my faculty preceptor what to do, and he had no idea. I still remember how helpless I felt, because something was so wrong and yet I had nothing to offer. It was 1977.

In the forty years since then, so much has changed and yet so little. Back then we called it senility and knew almost nothing about it; today we can talk at great length about the different cognitive disorders, of which Alzheimer’s disease is the most prominent, and about amyloid precursor protein, tau microfilaments, PET image studies, and so on. Back then it seemed rare; today it’s a leading cause of death and disability – widespread and widely recognized. But the impact on families hasn’t changed at all.

Since then, much of my career and life has focused on aging, Alzheimer’s disease and other dementias. I obtained certification in geriatric medicine; worked in nursing homes, assisted living and home care settings; authored 18 books, including a textbook of geriatric medicine; and conducted numerous research studies on Alzheimer’s care. My mother, who died at 98, and my father-in-law, who died at 87, both had cognitive disorders and died after a long period of illness. I developed training programs for doctors, nurses, nursing assistants, and other professional caregivers on diagnosis and management of persons with dementia. All of this was part of a general awakening among health professionals of the challenges family caregivers face providing day-to-day care of a loved one.

The Alzheimer’s Medical Advisor: A Caregiver’s Guide was written to help share with family caregivers the practical knowledge that has accumulated during the past 40 years. A major focus of the book is helping family caregivers know what to do when confronted with new or worsening symptoms – from medical problems like abdominal pain, cough, and diarrhea; to behavioral symptoms such as hitting, hollering, or refusing care; to more vague issues like not eating well. It also contains sections on working with the health care system, medications, watching for conditions such as pain and dehydration, and self-care advice for caregivers. An advisory group of nine family caregivers helped shape the book. Dozens of health professionals and students contributed background research, thanks in part to financial support from the National Institutes of Health. To make the book attractive and easy to read, we partnered with a nationally-prominent graphics designer. To field test an early version of the book, 50 family caregivers used it for six months and told us what they liked and what needed to be changed. Our final book was published in July of this year (2017) by Sunrise River Press. Feedback has been gratifyingly positive.

About the Author

Dr. Philip Sloane is the Elizabeth and Oscar Goodwin Distinguished Professor of Family Medicine at the University of North Carolina at Chapel Hill. Jointly certified in family medicine and geriatric medicine, he has served as medical director of a skilled nursing facility, medical director of an Alzheimer's Unit, national advisor on Alzheimer's care for a major nursing home chain, director of a nursing home teaching service, and physician and quality consultant to a Program of All-Inclusive Care for the Elderly. As a researcher, he’s conducted over 20 studies in nursing homes and assisted living, including the research that developed two award-winning training programs, Bathing without a Battle and Mouth Care Without a Battle. He was the recipient of the prestigious Pioneer Award from the national Alzheimer’s Association.

The Alzheimer’s Medical Advisor (Sunrise River Press, 2017) is available from major retailers like Barnes & Noble and Amazon, and from the Sunrise River Press website.

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Sunrise River Press

Wednesday, October 4, 2017

Meet Niki Kapsambelis author of The Inheritance


By 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 and extent of their courage. Here was a family straight out of middle America, committing itself across generations to serving as research subjects for the most baffling disease of this generation. What science had not been able to solve in more than a century, the DeMoes vowed to defeat – or die trying.

Just as Alzheimer’s has been a formidable enemy hiding in plain sight, here now were its heroes, living next door in relative obscurity. Nobody knew what they were doing, save a few close friends. I wanted to change that.

My book, The Inheritance, took five years to research. Not only did I track multiple branches of the family across different states, I also had to retrace the history of the disease from Alois Alzheimer’s discovery in 1906 to the human clinical trials of today. In the process, I met several brilliant people I now consider friends, and was awed by the depth of their commitment.

I also gained a family. The DeMoes were more than any journalist could ever hope for: honest, charming, forthright, and welcoming. Their trust in me was at times overwhelming, and I felt an acute sense of responsibility to be worthy of that trust and to tell their story as faithfully and completely as I could. Not all of the people who started this journey with me lived to see its conclusion, but I felt their presence keenly as I wrote. I was there for births, deaths, weddings, graduations, divorces, goodbyes and new beginnings. I celebrated with one young woman as she learned she did not carry the mutation, and I delivered the eulogies at two funerals for those who did.

As each surviving family member held the book in their hands, I sensed that my task was complete, but my journey was only beginning. Through the sacrifices of this family, I hope to educate the world about the public health crisis we all now face, and inspire them to come together to finish what the DeMoes – and others – have started.

Niki Kapsambelis may be reached at www.nikikaps.com, via Twitter at @nikikaps, or on Facebook.

Author’s bio:

Niki Kapsambelis’ work has appeared in publications around the world, including the Washington Post, Los Angeles Times, People, and the Associated Press. A native of Boston, she now lives in Pennsylvania. The Inheritance is her first book.

Wednesday, September 20, 2017

Meet Candy Abbott, author of I've Never Loved Him More


 



By 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.”

A couple of weeks later, I shared my struggles as an Alzheimer’s caregiver with Delmarva Christian Writers’ Fellowship. During the coffee break, Claire Smith touched my arm and looked deep into my eyes. “Candy, you need to write a book about this, you know.”

I flinched and felt my face flush. “That’s what Kim said, but I don’t think so. Not for years, anyway. I have to get through this first.”

She tilted her head and said with a knowing look. “We’ll see.”

I wanted to smack her encouraging prophetic face. Instead, I smiled sweetly. But a seed had taken root. I felt it in the core of my soul.

And then came the phone conversation with my writing mentor, Nancy Rue.

“Everywhere I turn, people are telling me that I need to write about this, and I don’t have the time, energy, or inclination.”

“Well,” she said, “don’t think of it in terms of writing a book. Just try capturing some scenes now and then that seem significant. I think it could be therapeutic for you. No pressure, no goals, just get some of these things out of your head and heart and onto paper where you can look at them. It’ll give you a little bit of control, and it won’t be hard. Just capture some scenes.”

Nancy was on target. Right from the beginning, my manuscript began teaching me things about myself as I recorded my raw emotions and the mysterious changes taking place in Drew. I shared parts of the manuscript with Sara Lewis, and she said, “Candy, people need this NOW. You have to publish this as soon as possible.”

And so I did. Drew is still in the moderate phase of Alzheimer’s, and I have to hide all evidence of the book as he thinks he’s perfectly fine. But I have peace that I’m doing the right thing by releasing our story while he’s still living.

One woman said the first few pages brought healing of unresolved grief over her grandfather. Another said she overcame guilt over how she had cared for her husband until she recognized herself as a Proverbs 31 Woman. A seven-year-old granddaughter with severe anxiety reads the book with her grandmother every night. “She may not understand everything,” Sharon said, “but she feels the love.”

What pleases me most is that people see hope between the pages. I suspect my hardest days are yet ahead, and I’m still writing. But this I know: Alzheimer’s doesn’t have to break you. It can make you trust God more and teach you to appreciate living in the moment. It’s all about finding a depth of love you didn’t know you had in you.

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www.fruitbearer.com

Wednesday, September 13, 2017

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


By 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.

I bought Dad a small cassette tape recorder and he recorded his stories. Every time he held a finished tape in his hand, he felt happily fulfilled. He died peacefully at the age of 92.

The next Christmas, I was hired to sing carols at a nursing home. I took my small Irish harp and entertained a half-dozen residents at a time in several locations around the building.

Unlike singing on a stage with a faceless audience in the dark, these few, frail people stared vacantly. I started singing Hark the Herald Angels Sing. Suddenly, like wilted flowers given water, they seemed to bloom with new life. Shouting out the lyrics, they sat up singing with pure joy. For the first time, I realized that music could be much more than just entertainment.

That night changed my life. I applied, auditioned, and was accepted into NYU’s Music Therapy Master's Degree program.

Years later, I was the director of a senior center for the well-elderly. One member was 67-year-old Bill, crippled from polio and wearing leg-braces. He had never attended academic school, but only a trade school where he learned make costume jewelry. He was shy and bored, had little musical ability, but enjoyed singing in my chorus, and playing in musical improvisation sessions.

After about a year of improvising, Bill and a few other center members asked me to start a band. Shocked, but intrigued, I carefully explained that playing “real music,” meant they had to learn to play musical instruments. They were still adamant, so the band was formed.

Bill played the bass drum, loved it, and his self-esteem grew. He became so proud of himself; he volunteered to teach a jewelry-making class. Before long, his two-dozen elderly students opened a store and were selling jewelry. The sales made money for the center, and he was suddenly a very important guy. If Bill had never tried playing a drum, he might never have gained the personal confidence to teach a jewelry-making class, rediscover his old passion, and create a product that benefitted so many.

Learning a new skill can rekindle passion in an old one. Sharing a passion, can ignite passionate joy in others.

* *

"To all adult children, caregivers, professionals read this book! Conroy's approach aligns with 'Positive Psychology' – focusing on one's passions and strengths.

Gerald Solk, Ph.D., CUNY, Psychologist, Gracie square Hospital

"…an insightful, unique approach to helping people cope with the demands of dealing with the elderly." 

John J. Daly, M.D., NYC Police Surgeon, St. Vincent's Hospital, NYC

"…social workers, nursing home and community center staffers, psychologists and family members… could all benefit from this information."

Judy Foust, R.N., U.S. Army Hospital, retired, Low Vision Specialist, Lighthouse, NYC

About the Author


Christina Britton Conroy, M.A., L.C.A.T., C.M.T. is the founder and Executive Director of Music Gives Life, bringing musical performing into the lives of senior citizens. Many of her elderly showstoppers, ages 60- 101, never performed in public before joining Christina’s program. NY1 - TV NEWS named them NYers of the Week. A former senior center director, nursing home music therapist, and primary caregiver for two elderly family members, Christina has unique insights into the joys and frustrations shared by geriatric patients and their caregivers. Also a classically trained musician/actor, Christina toured the world performing musical theatre. She lives in Greenwich Village, NYC with her husband, actor/media-coach/cartoonist Larry Conroy.

Wednesday, September 6, 2017

Meet Lori LaBey, founder of Alzheimer's Speaks

A Gift in a Strange Package




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.

Mom’s dementia symptoms began our thirty year journey down the yellow brick road. We were off to see the Wizard. Yet along the way, I found I had the answers I needed: acceptance, forgiveness, compassion and unconditional love. All were tools my Mother taught me growing up. I also needed to acknowledge and embrace our new lives. You see, dementia was not just my Mother’s disease. It was “our disease,” hers, mine and everyone she encountered. I found each of us has a choice on how we are going to live with dementia.

Will it Be a Gift or a Disaster in Your Life?

Through illness, I was taught life lessons I wouldn’t have experienced otherwise. The beauty of each lesson can’t be put into words, but each is embedded in my heart and my soul. Each is a memory of magnificent proportion. Each was brought forth by a simple question I would ask myelf.

“What’s the Lesson?”

Each lesson was wrapped in a love deeper than I previously knew. By asking this simple question when I felt pushed up against a wall, simple answers came.

Answers Changed My Career and My Life

I felt strongly that the old ways of caring and serving those with dementia wasn’t working, and for me working in a broken system wasn’t an option. So, in 2009, Alzheimer’s Speaks was born. My goal was to raise all voices, share knowledge and empower all to shift our dementia care culture from crisis to comfort.

Today, we are an advocacy group and media outlet making an international impact. We provide education and support for those dealing with all forms of dementias. Two of our educational platforms are: Alzheimer’s Speaks Radio believed to be the first program dedicated to dementia in the world and a webinar series called, “Dementia Chats™” whose experts are those diagnosed with some form of dementia.


Maria Shriver honored La Bey as an “Architect of Change” for Humanity.


Named the “#1 Influencer Online for Alzheimer’s” by Sharecare and Dr. Oz 

People kindly refer to me as the spark igniting the first Dementia Friendly Community in the United States and for helping expand the UK’s Memory Café concept in America.

There is nothing like finding your purpose and passion in life which allows you to help others. This fall we are setting sail with a Dementia Friendly Symposium and Cruise which will be an exceptional experience as we live gracefully together with dementia.

Makers of the Hollywood film, “His Neighbor Phil,” consulted with me to design a marketing plan. I was thrilled they were willing to try something new. The response has been remarkable as I have taken the film around the country doing talk backs. The film has proven its extraordinary ability to connect with audiences, remove stigmas and give hope.

As for the future, I will continue to keynote, speak, train, write, advocate, collaborate and push innovation forward developing new delivery systems and attitudes towards those living with and dealing with dementia.

For additional information, resources or to be a featured guest or sponsor visit: www.AlzheimersSpeaks.com

Wednesday, August 30, 2017

Meet Margo Rose, author of "Body Aware Grieving"


The Last Christmas Present

By Margo Rose

The first client with advanced Alzheimer's who I worked with as a fitness trainer was named Gwen.

When I met her, she was 92 years old and had already lived for five years in the dementia section of an assisted care facility.

I never met Gwen’s adult daughter, who had seen on the internet that I work as a fitness trainer doing on-site senior wellness. My only point of contact was a phone call from the daughter asking me to help her frail mother stay as strong as possible, and a monthly check that arrived in the mail.

I didn't know much about Gwen’s personal life, or what she had been like before Alzheimer's had influenced her personality.

Gwen was so sweet and easy to love! She never remembered me, but was happy to meet me twice each week. Since she was physically so weak, we would do some exercises from her bed and others from her wheelchair and still have time remaining in our one hour session.

“Would you like to go explore the garden, Gwen?”

The answer was always "yes," so I would roll her wheelchair out to a shady spot on the beautiful patio.

It was hard for Gwen to make conversation and since I didn't really know her, I would guess at what keywords might trigger happy and fond memories for her. Do you like to have picnics? Have you been to the beach? What are your favorite drinks? Do you enjoy lemonade?

Soon after my first Christmas with her, I was surprised, but not really, to get a phone call from her daughter letting me know that Gwen had passed away peacefully.

What the daughter said next remains to this day, my favorite and most touching compliment ever as a fitness trainer. She told me that after five years of extremely depressing Christmases with Gwen’s declining conversation skills, during this recent and final visit Gwen had been more able to talk with her family.

I do not claim to be responsible for the improvement in Gwen's communication abilities. Her daughter, though, said to me, "You've given our family a beautiful gift. Our last memories with our mother and grandmother are very loving, and we will cherish them.”

Wow. It is such an honor to be invited into people's families and to meet their parents, who are still so beautiful, despite their decline and challenges.

I send love to each of you reading this who are caring for someone. One thing I have seen in every caregiving circumstance so far, is that your friend or family member who is struggling with the frustrations of aging and/or illness appreciates your help much, much more than they are able to express to you directly.

About the Author:

Margo Rose is a fitness trainer, author, and radio podcast host.

She has created a system of self-care called Body Aware Grieving that helps people avoid accidents, injuries, and stress-related setbacks during times of loss or grief.


More info, blog and podcasts on her website: https://www.bodyawaregrieving.com/ 

For bulk discounts on books, or personalized consulting Margo can be reached by email: https://www.bodyawaregrieving.com/contact/ 

Twitter: @BodyAwareGrief

Wednesday, August 23, 2017

Meet H.A. Robinson, author of The Pebble Jar



By H.A. Robinson

When I sat down to write The Pebble Jar around this time last year, I had no idea of the personal journey the book would take me on. In March of 2016, my little Nana passed away at the age of ninety-one after a long and painful battle with Alzheimer’s. By the time she fell asleep for the last time, we had almost completely lost the essence of who she had once been, leaving us with a shell of the person we loved.

As a child, I remember her being this amazing force of life, so vibrant and always happy. She was the life and soul of every party she went to, and I can still hear the infectious sound of her laughter even though it’s been so long since any of us really heard it.

In a way that none of my other books have, this one tore me apart and sewed me back together as I wrote.

At its heart, it is a love story about two teenagers, Abigail Costa and Elliot Peterson, who have been best friends for as long as they can remember. When the teenage years start to come thick and fast, their dynamic changes and our old friends, the hormones, begin to take over. While Abbi is dealing with the usual teenage angst that everybody goes through, though, she also finds herself struggling to cope with the changes she sees in her beloved grandmother, Nonna. As Alzheimer’s slowly but surely steals away the person she loves most in the world, she is left feeling alone and frightened, unable to truly cope with what’s happening in front of her eyes.

Alzheimer’s isn’t a glamourous Hollywood disease. It isn’t something that receives a great deal of attention in the media, yet it has to be one of the most heartbreaking things to watch a loved one go through. In writing The Pebble Jar, I really wanted to communicate that feeling of isolation you experience while watching somebody you loved being torn away from you. Of knowing that the person you once knew is effectively gone, even though they’re still there in front of you. That gut-wrenching pain of having them look at you as though you’re a stranger when they’ve known you your entire life.

The response I’ve received since releasing the book has absolutely blown me away. I’ve had messages from people I’ve never spoken to before telling me how deeply the book resonated with them. People who have been through similar experiences have contacted me to say thank you. I’ve always believed in the power of literature to support people through hard times and make them feel less alone, but I never in a million years expected my story to be one of them. I’m over the moon that even one person has found the book to be a comfort, and hope it can continue to support those who need to feel like somebody understands and maybe help start conversations about Alzheimer’s.


Social media:


Twitter: @H_ARobinson

Instagram: www.instagram.com/h.a.robinson/

Wednesday, August 16, 2017

Welcome Sisters Susan Kiser Scarff & Ann Kiser Zultner, Authors of Dementia: The Journey Ahead

By Susan Kiser Scarff

Within a year of my husband receiving his dementia diagnosis, I had a classic case of caregiver burnout. I couldn't concentrate at work and most of my time was taken up with worrying about my husband's uncharacteristic and impulsive behavior. I was petrified and intimidated about the future…overwhelmed with basic day-to-day activities. Further, I was apprehensive about making the transition from wife to protector, nurse, and mother.

At the suggestion of a health professional, I began documenting the daily struggles of caregiving. After my husband passed away, I realized my daily journaling could be modified and turned into a valuable and timely resource for other caregivers in similar situations. Writing the book, and in turn helping others in similar situations, helped me to feel that my husband’s illness and my own caregiving struggles were not in vain. Something positive was able to come from the horrific disease called Dementia. Hopefully, the book, written with the help of my sister, Ann Kiser Zultner, will help fill in the huge gap between medical and in-home care for dementia patients.

Our book is intentionally designed as a practical guide for dementia caregivers. It begins with the diagnosis, and then moves into dealing with behavioral issues, managing daily living, safety concerns and late-stage. It also includes an assortment of caregiver tools and an extensive list of caregiver resources carers can use to find additional information on a variety of topics. Finally, the paperback version of the book (as opposed to the Kindle version) includes an Index that readers can use to go straight to any topic. I felt this was important since caregivers do not have time to sit down and read anything from start to finish, let alone spend hours researching. Every section also includes how I resolved many of the daily issues while caring for my husband…honestly, I learned everything by trial and error.

My husband, Red, proved to me that patience is a prerequisite, laughter is the best medicine, and a smile is worth a thousand words.

Purchase Dementia: The Journey Ahead - A Practical Guide for In-Home Caregivers, available on Amazon in Kindle and paperback.

About the Authors


Susan Kiser Scarff

I was born and raised a California girl. I live and thrive in Phoenix, Arizona since 1974. I graduated from Northern Arizona University in 1973 with a BS in secondary education with four and ½ years’ experience as a generational hippy and flower child. I come from a lineage of doctors, psychiatrists, and nurses. Our father and brother were both diagnosed with debilitating disorders shortly after I graduated from high school. I believe the culmination of our/my life experiences and family dynamics prepared me for the imminent role in life as a caregiver, aka, mother of all. I just can’t help it. My collective societal roles range from flipping burgers at the San Diego Zoo, multimedia artist and business owner, coaching junior’s tennis, tennis coordinator, volunteer and staff member at Desert Botanical Garden and last but most challenging …caring for my husband, diagnosed with FTD, for roughly 15 years in our home. It was a very long and difficult labor of love. Candidly, high school lesson plans, country club newsletters, botanical garden training manuals, several magazine articles, and one book sums up my prolific writing expertise. I believe our text is a wonderful starter book for novice dementia caregivers. If you have been a caregiver for a number of years...you can undoubtedly write your own book by now or already have.

Ann Kiser Zultner

I learned about dementia and caregiving through my sister, Susan, and her husband, Red. After Red’s dementia diagnosis, Susan and I would have weekly telephone conversations where she would describe Red’s new behaviors as the disease progressed and her ingenious ways of managing and coping with the resulting chaos and stress. Dementia: The Journey Ahead is designed to be a reference guide for dementia caregivers providing helpful and creative ideas on how to manage daily living. The book also includes some humor since that is the way our family seems to deal with just about everything. (Thanks, Mom.)

Follow Susan Kiser Scarff & Ann Kiser Zultner

Our Facebook page, Dementia: The Journey Ahead Caregiving 101, provides caregivers with much needed advice, support, and guidance, to help prepare and take charge of the challenging and demanding journey ahead.