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, 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 K├╝bler-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

Amazon

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.

Amazon

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.