Tag Archives: Elder Care

AlzAuthors Publishes its 2nd Anthology “Alzheimer’s and Dementia Caregiving Stories: 47 Authors Share Their Inspiring Personal Experiences”

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As World Alzheimer’s Month begins I’m pleased to announce that AlzAuthors has published its second anthology, Alzheimer’s and Dementia Caregiving Stories: 47 Authors Share Their Inspiring Personal Experiences, Vol. 2.

I am a founding member and manager of this organization, the global community of authors writing about their personal Alzheimer’s and dementia experiences to light the way for others. My novel, Blue Hydrangeas, an Alzheimer’s love story, is one of 200+ titles featured on our website AlzAuthors.com. The stories included in this volume represent the writings published on the website from June 2017 through May 2018.

1566344163.pngThis collection of stories is a labor of love. The stories are personal and enlightening, poignant and hopeful. The six daughters of dementia who manage the organization and its editorial team assembled them with great care and love and released them into the world in a convenient book form to provide a soft-landing spot for those living with Alzheimer’s and dementia and those who care for them.

One of the more beautiful aspects of this book is that its authors are not famous. They’re not celebrities. They’re ordinary people who have lived with dementia as caregivers or as persons with dementia, and opted to share their stories. They’ve “walked the walk” and offer loads of wisdom.

We are grateful to our Special Projects Editor Jay Artale for all of her hard work and patience in designing and formatting  this book. We could not have brought it to life without her.

We are also grateful to our authors, those who are included in this volume and those who have written for our blog. Writing such deeply personal stories is also a labor of love, requiring courage and fortitude. We applaud your strength and selflessness.  AlzAuthors would not exist without you.

The book is available in Kindle format on Amazon.  Purchase Anthology Volume 2  now for the introductory price of 1.99. Don’t delay. The price will rise to its regular price of 4.99 over the next week or so. Paperback and audiobook versions are planned for future releases.

AlzAuthors, a 501 (c) (3) organization, features a new book or blog each week. With authors now spanning the globe, the site includes memoirs, novels, caregiving guides, books for children and young adults, and more, all written by those who have experience with Alzheimer’s or dementia.

AlzAuthors was created in 2015 after I connected online with Ohio author Jean Lee (Alzheimer’s Daughter), and Montana author Vicki Tapia (Somebody Stole My Iron: A Family Memoir of Dementia) and realized we could fill a need for overwhelmed caregivers by vetting books and blogs about the diseases. Since then, Kathryn Harrison from Ontario, Canada (Weeds in Nana’s Garden), Ann Campanella from North Carolina (Motherhood Lost and Found), and Irene Olson from Washington State (Requiem for the Status Quo) have joined our all-volunteer management team.

Our goal is to help dementia caregivers and others find quality resources that will provide knowledge, support, understanding, and comfort during what is often a difficult and stressful time.

Sharing our stories makes us strong.

For more information about AlzAuthors visit AlzAuthors.com.

AlzAuthor Eleanor Cooney Reveals a Cautionary Tale of Alzheimer’s in her Memoir “Death in Slow Motion”

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Cooney CanvaBy Eleanor Cooney

In the third grade, I was kicked out of show-and-tell for three weeks. I told a story that the teacher, Mrs. Fitz, had specifically asked me not to tell. She knew about it because she heard me blabbing a preview to some of the other kids early that morning. “I don’t think that’s the sort of story to share with the class,” she’d said, shocked.

Mrs. Fitz was a gentle soul, and we loved each other, but my story upset her. She didn’t want me to tell it, and I hardly blame her. It was pretty terrible. Roaming around the woods and river near my house in Connecticut, I’d spotted something snagged in the shallow water: a burlap bag. I dragged it ashore, opened it, and found a drowned dog. I remember what it looked like: A brown-and-white Bassett hound. Even though Mrs. Fitz was shaking her head sadly in the back of the room as I stood in the front and she saw that I was about to spill it, I went ahead anyway. I had to. It’s not that I wasn’t sad for the dog. I was, and still am. But I just had to tell that story.

slowmotionI know that some will find the story I tell in my book Death in Slow Motion shocking and terrible, and they’ll think I shouldn’t have told it. When my mother came down with Alzheimer’s and I undertook (in vain) to save her, a calm dispassionate voice, quite separate from the desperate babble of other voices in my head, whispered: Here’s your next book.

This is not to say my motivations were identical to those of that headline-grabbing eight-year-old. But I still know a good story when it comes along. In this case, though, I wouldn’t be telling the dreadful truth for its mere gratuitous shock value; the subject matter begged for a brutally frank telling, something as pitiless and unladylike as the disease itself. I was, by that time, a seasoned, published novelist, figured I had the “chops” to do the job. My writerly sensibilities tend toward the “noir” anyway, and you can’t get much more “noir” than Alzheimer’s. It was a match.

I started with an article, published in Harper’s magazine. Serendipity led me to an editor at HarperCollins, who said: “I don’t want the book to be just a longer version of the article. I want background and character development. I want to know who your mother was, who you are.”

The possibilities were tantalizing: My mother was a writer, and I’m a writer exactly because she was a writer. We lived in a town right out of Cheever. She’d had three husbands and plenty of lovers. Even without Alzheimer’s shuffling onto the stage, her life, the life my brother and I had because of her, would have been the stuff of literary memoir or a roman à clef. The illness added a classic dimension of tragedy to the story, but it was not the whole story. This is not a “help” or a “how to” book, nor even really an “Alzheimer’s” book, though there’s plenty to be learned about the disease, and about failure, including what I learned the hard, hard way. It’s a cautionary tale, and it’s also the story of a woman, my mother, a superb writer, anything but ordinary, brilliant, beautiful, and sometimes dangerous. I wrote it the way I did because of the writer she was. I wanted to bring her to life so that the reader will know, really know, what’s been lost.

About the Author


Eleanor Cooney is the author of the T’ang Trilogy, historical novels set in 7th- and 8th-century China. This September, her nonfiction memoir, written for Frank Gregory Ford, Midnight in Samarra (Skyhorse, NYC), will be released, the searing account of an intelligence agent and medic who went into Iraq in the ’03 invasion and witnessed high crimes and misdemeanors on the part of his countrymen. She’s completing a new novel, a literary thriller set in the 19th and 21st centuries in Wisconsin, plus a collection of essays, No Country for Old Women. Her work has been published in Harper’s magazine and Mother Jones magazine. She lives in coastal northern California.

Connect with Eleanor Cooney

Facebook
Website
The Tang Trilogy
Facebook/TangTrilogy

The links below are for her long essay “No Country for Old Women,” a new “final chapter” to Death in Slow Motion. The editor divided it into four parts because of its length. They should, of course, be read all together, as one piece. They’re in order here:
https://www.theava.com/archives/84373
https://www.theava.com/archives/84659
https://www.theava.com/archives/84904
https://www.theava.com/archives/85174

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For more vetted books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore. Reposted with permission from AlzAuthors.

AlzAuthor Judy Cornish On Providing Dementia Care with Dignity

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By Judy Cornish

It’s been nine years since I left my law practice in Portland, Oregon, thinking I would semi-retire and spend most of my time gardening, skiing and enjoying the outdoors. Instead, I’ve been busier than ever before, with a task I just can’t walk away from. A friend asked me last summer why I’ve taken on so much and am working so hard. “I saw a mess and I saw a broom,” I replied, “and I couldn’t help picking up the broom and doing my best to clean up the mess.”

The ‘mess’ I saw is that we have a senior care industry well equipped to support people experiencing physical frailty, but that offers people with forgetfulness and confusion little more than misunderstanding, psychotropic drugs and locked doors. The ‘mess’ is that we, as families, don’t know how to help our loved ones cope when their cognitive skills begin to fade, and unwittingly cause them more pain and distress. And the ‘mess’ is that we, as a society, seem to have forgotten that life has three stages, not two: childhood and adulthood are followed by elderhood, and being an elder is no less valuable a role than being a child or an adult. The ‘broom’ I saw and picked up is what I learned from my clients—the many people I’ve worked with and come to love.

When I wrote and published my first book (The Dementia Handbook) in the spring of 2017, my dementia care business in Moscow, Idaho was keeping me very busy as the sole case manager, supervisor, accountant, lawyer and administrator. I had started providing dementia care in 2010, and founded DAWN (the Dementia & Alzheimer’s Wellbeing Network®) in 2014—because I wanted to help other families begin caring for their loved ones in the same way. I began developing a training program that would help families provide truly strength-based care at home. I’m still very busy; I’m running both businesses, teaching the DAWN Method, and developing a set of short, dementia care videos for families to subscribe to and access online.

Dementia with DignityBut at the same time, I began writing Dementia With Dignity – Living Well with Alzheimer’s or Dementia Using the DAWN Method® , and published it in January 2019. My first little book had explained the principles of the DAWN approach—what I’d learned from my clients here in Moscow as I strove to help them retain not only dignity and autonomy but also to continue to live rich and happy lives. But this second book is truly a work of love, from my heart. I knew I needed to give families not only the principles of DAWN care, but also the specific tools and techniques my clients have shown me are the kindest way to support their skills. Dementia With Dignity is filled with stories from my years with my clients—stories of their courage, wisdom and perseverance.

I’m still not retired. I’m still running both businesses, but I’m beginning to see that many of us have become aware of the ‘mess’ I saw back in 2010, that I’ve been joined by many who are also using their hearts and minds to the utmost—making a better world for those who experience dementia. We’re not there yet, but we’ve made great progress. Many families are now providing wise and supportive dementia care, at home, and our elders are beginning to enjoy more respect and autonomy, even with dementia. Once again—thank you! AlzAuthors, for the opportunity to share my vision with you and your readers.

About the Author

JudyJudy Cornish is an elder law attorney, geriatric care manager and author who has spent the past nine years working with families and people experiencing dementia in northern Idaho and Eastern Washington. Prior to her law practice and founding the Dementia & Alzheimer’s Wellbeing Network® (DAWN), Judy had worked in vocational rehabilitation and as a psychosocial skills trainer with the mentally ill. With her varied background—and education in literature, languages, fine arts and the law—she discovered a unique and truly effective approach to dementia care. The DAWN Method® enables families to recognize and meet their loved ones’ emotional needs, so they can live comfortably and safely at home for longer. Today, Judy runs Palouse Dementia Care, providing case management and care services on the Palouse, and DAWN, through which she consults and provides training in DAWN care.

Connect with Judy Cornish

Dementia With Dignity on Amazon
The Dementia Handbook on Amazon

Judy’s TEDx talk

Dementia & Alzheimer’s Wellbeing Network® (DAWN):

judy@thedawnmethod.com
www.thedawnmethod.com
The DAWN Method Facebook Page
The DAWN Method Twitter
The DAWN Method LinkedIn

Judy Cornish, JD:
Judy Cornish Public Figure Facebook Page
Judy Cornish Twitter
Judy Cornish LinkedIn

Judy’s dementia care company in Moscow, ID:
www.palousedementiacare.com
Palouse Dementia Care Facebook Page

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For more vetted books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore. Reposted with permission of AlzAuthors.

Timothy Scott Honors His Grandfather in “Don’t Forget,” an Alzheimer’s Novel

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I wrote Don't Forget as a reminder to myself and to all of us of the responsibility we have to the memory of those who made us who we are, and an inspiration for us to be that positive force in the lives of the

By Timothy Scott

Almost everyone I know has experienced the pain of having someone in their life affected by Alzheimer’s. The names and faces are different, but the stories are eerily similar. As is the impact and the pain. Forgetting is a terrible cruelty. For me, that someone was my grandfather.

My grandfather was a very special man. He was a larger-than-life figure to me as a child, and a constant source of encouragement and joy in adulthood. He was the same powerful influence on so many others in my family. Alzheimer’s took my grandfather’s mind, and it was hard for all of us to watch as the powerful man we knew slowly faded away.

But I treasure the memories I have of him, and to share his influence with continued generations, his stories have become my stories. The memories that slipped away from his mind have found a firm, honored place in mine. That is my tribute to him.

This isn’t a memoir of my grandfather, but it is a poignant story about the power of presence and memory in the relationships that shape all of us.

My greatest satisfaction in writing this book has been hearing from readers how they found themselves and their loved ones in the pages, and how the story stirred within them deep memories of joy and a commitment to cherish and carry their loved one’s memories.

I’d be honored if you read it. I hope it helps you to remember and keep the memories of those you love.

Purchase Don’t Forget

About the Author

Timothy Scott is a husband and father, and storyteller. He writes stories that celebrate the power of family and relationships in order to make a difference in the lives of others.

Timothy has climbed the corporate ladder, working in the recruiting and talent development functions of Dr Pepper/Seven Up, Inc., Trane Commercial Systems, Yum! Brands/Pizza Hut, and Southwest Airlines. He built a dynamic NextGen Ministry at a growing church, and served two terms as a city councilman.

Whether one-on-one, or on stage in front of thousands of people, Timothy is an engaging and effective story-teller, and has the ability to harness the power of story to inspire and motivate others.

Timothy and his wife, Stephanie, have a daughter in college and two spoiled dogs.

Connect with Timothy Scott

Website

Twitter

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For more vetted books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore. Reprinted with permission of AlzAuthors.

Blogger Lickety Glitz Invites Us into Life with Vascular Dementia in “Stumped Town Dementia”

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By Lickety Glitz

I started…

… to worry that Mom’s behavior wasn’t old age quirky-ness, but possibly a much more serious problem.

I started…

… a new career that required relocating away from family, friends, and the region I loved best.

I started…

… to consult with Dad on my visits home about how long we thought it might be before he needed me back permanently to support him in Mom’s care. Another year? Three? Five?

I stopped…

… breathing when the ER doctor announced on conference call that Dad had stage 4 pancreatic cancer. I could tell that those who were there in-person had stopped breathing too.

I started…

… sharing 24/7 care for Mom with my sister when Dad died three weeks later.

I started…

… blogging about our dementia adventures a year later as a way to keep far off friends and family engaged in Mom’s life. I’ve been writing for over a year now, and…

… I’ve started to realize it’s so much more.

It’s a lifeline for me. An umbilical cord to a not-so-distant universe of word-weaving creativity; now a tiny galaxy of curling and curving locution that tethers me to the world of my present.

It’s a permanent record of a journey I don’t want to forget. An autobiography of dementia certainties: misplaced items, misplaced poop, mismanaged emotions. A sweeping saga of dementia unknowns; tremendous courage, epic failures, colossal comedies.

It’s a connection to a massive universe of dementia caregivers who see their journey mirrored in ours. It’s a connection to a smaller cosmos of family and friends who can’t always be with their beloved Gloria but want to stay informed. It’s a connection to my sister, The Other Girl, a relationship sometimes fragile and strained, but united in a never-questioned bond of love for our mother.

And lastly, it’s a connection to myself; my devastating defeats, my soaring successes, my inherited joy of hilarity in the tragically absurd – a gift from Mom and Dad who shared the same comedic sensibilities. When I write a post, whether dire and dark or laugh-out-loud light, I have to relive my emotions, examine my responses, assess my behavior with unflinching honesty. If I shrink from that often-painful task, then I am doing everyone who follows our adventures a disservice in telling a dishonest tale.

A year ago, I sat down at my computer to inform family and friends of Mom’s dementia progression. A year later I rise in realization that I’m actually telling myself about myself.

About the Author

Stumped Town Dementia is a personal blog chronicling the dementia adventures of Girl and The Other Girl, sharing hilarious, heartbreaking, bittersweet and courageous moments of life with our Mom who has vascular dementia. We celebrate the insanity and relish the laughter of this long, strange journey. It helps us make it through the days when there are no smiles to be had.

Stumped Town Dementia has been featured on The Caregiver Space, Family Caregiver Alliance, Being Patient, and Alzheimer’s Society UK.

Lickety Glitz has been a former just about everything from non-profits arts administrator to cabaret performer to post-production professional to Crappiest Daughter of the Year award winner about 40+ years in a row. She recently broke that winning streak by stepping up to the plate, hand-in-hand with The Other Girl, to provide their dementia mom with the best end-of-life care possible.

Connect with Lickety Glitz

Website

Facebook 

Twitter

Instagram

Email: licketyglitz@stumpedtowndementia.com

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For more vetted books and blogs about Alzheimer’s and Dementia please visit AlzAuthors.com. Reprinted with permission of AlzAuthors.

Laura Mansfield Shares Her Journey into Eldercare in “Geezer Stories: The Care and Feeding of Old People”

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By Laura Mansfield

Suddenly, five years ago, my world fell apart as my parents tumbled headfirst into old age. It was a pivotal time in my life. I was remarrying after a decade of being a single parent. My son was leaving the nest, starting college, while a special-needs stepson was landing unsteadily in my new nest. I was leaving my successful career at a high-powered advertising agency to start my own consulting business, which would allow me greater flexibility to care for my parents, my new family, and to watch over my son as he spread his wings into early adulthood.

It seemed doable. I was living the life of my generation—Gen T—the Taffy Generation, because “sandwich” just doesn’t cut the mustard. My friends and I are pulled like saltwater taffy as we have children later, our parents live longer, and we blend families in non-traditional ways. We’ve long since quit believing in the myth of work-life balance.

Untitled designI started writing about my journey into eldercare on Facebook in what I called #GeezerUpdates. The Facebook posts quickly gained traction and morphed into a blog at geezerstories.com and ultimately a book—my bittersweet memoir, Geezer Stories: The Care and Feeding of Old People.

There’s no how-to manual for taking care of old folks. We’re all flying blind here as our parents slide into their second childhoods. My book has a bite to it, with a backward glance at my own childhood. It’s a survival story about how to persevere in the face of inevitable hardship. It’s about choosing to age gracefully, despite the pain and the pathos. As my father, aka DooDaddy, famously said, “Growing old is not for the faint of heart.”

Over the past five years, my second marriage failed, my business faltered, and my son lost his way, as I found myself torn apart by the seemingly endless demands of caregiving. I moved three times and changed jobs four times, ultimately ending up back with the agency I left five years ago. And I lost both my parents agonizingly to cancer, which they faced with courage and dignity. My son graduated from college and has become his own person. My life has come full circle.

One of the many blessings of this tumultuous time was my father holding court at my Geezer Stories launch party. He had read the book—which was not always kind to him—three times. He could no longer walk or stand or even sign his name. I had a stamp made of his iconic scrawling signature, which he gamely stamped on each copy as he shook hands and gregariously greeted his fans that afternoon at Union Ave Books. It was a triumph. We sold out. It was DooDaddy’s last public outing. Continue reading →

Mother-Daughter Team Collaborate on Alzheimer’s Caregiving Guide “If Only You Would Ask: A Guide to Spending Quality Time with the Elderly”

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Sometimes questions about ‘food’ or ‘vacations’ or ‘school days’ will ignite a memory, creating a source of comfort and delight

For five years, Joan Berger Bachman and her 92-year-old mother, Eileen Opatz Berger teamed up to write, If Only You Would Ask, A Guide to Spending Quality Conversation with the Elderly. This easy-to- use book is a conversational resource, a manual and a tool for all those who struggle to carry on meaningful, enjoyable conversations. How did this book come about?

Here’s Joan’s Story:

When my father-in-law Bill was nearing the end of his life, I would visit him quite regularly. He had made the decision to stay in his own home until the end. Winters in Minnesota are long, cold and lonely, especially for someone who is afraid and/or unable to venture out. Being the dutiful daughter-in-law that I was, I felt compelled to make the 100-mile drive from Rochester to St. Paul to visit him. We would sit at his kitchen table, and I would tell him about what the kids were up to… and what I had been doing. His major topic of conversation was the rabbits he saw as he stared for hours out the back window of his house.

During this time, I shared with my mother how difficult visits with Bill were becoming. He had so little to share, and I wondered if the visits even mattered. Continue reading →

“The Story of AlzAuthors,” or “How 3 Daughters of Dementia Started a Global Community of Authors Sharing their Alzheimer’s & Dementia Caregiving Stories”

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The Story of AlzAuthors

Join me as I tell the story of AlzAuthors, the global community of authors sharing their Alzheimer’s and dementia stories to light the way for others, on Friday, June 21st at 2 pm at Middletown Thrall Library, Middletown, New York. This is my fundraising and awareness effort for the Alzheimer’s Association’s The Longest Day, an annual event. You can read more about my personal Alzheimer’s story on my Longest Day Participant Page. 

eReader BHAfter publication of my novel Blue Hydrangeas, an Alzheimer’s love story,  I reached out to two other authors I met online who also published books on this deeply stigmatized subject. What happened next was totally unexpected: We created a movement that includes 200+ authors, a website, bookstore, anthologies, community outreach, and more. Our mission: To bring carefully vetted books and blogs to caregivers and others concerned about Alzheimer’s and dementia and to break through the silence that often accompanies these diseases.

Sharing our stories makes us strong, but sadly too many of those with dementia and their loved ones caring for them are isolated, as shame and stigma often prevent them from disclosing their diagnosis. My  presentation will include a discussion on the power of telling our stories to make change – personally, globally, and legislatively – and how those overcoming or facing dementia and its caregiving can tell their own stories. Continue reading →

AlzAuthor Daniel Kenner Shares How He Used an Oral History Project to Preserve His Parents’ Life Stories & Legacies

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Kenner, Daniel

By Daniel Kenner

After many long months of exhaustive family struggles, cognitive and behavior changes, and a lengthy process of medical evaluations and tests, my dad, Buddy, received the devastating diagnosis of Frontotemporal Lobe Dementia (FTD). It was Valentine’s Day, 2013. FTD is a rare neurological disease that affects personality and social behavior, speech and language comprehension, and executive functions involved in reasoning, decision-making, and planning. Never to be outdone, my mom, Maureen, always the fierce competitor, was diagnosed with Stage 4 colon cancer only four months later.

That year, my best friend’s parents died in a terrible plane crash and that sudden tragedy struck me in such a profound way. “I am going to lose my mother and my father,” I remember thinking, “but I still have time.” I don’t know which is worse: losing parents instantly or watching them slowly deteriorate, but I knew I wouldn’t squander the chance to say goodbye.

Dad was a natural storyteller, and through that he became my favorite story to tell. He was my hero. The highest compliment I can give of my dad was he had a son that idolized him. Everything he loved I was determined to love just as much or more: Bob Dylan, Lenny Bruce, Marlon Brando, absurdist theater, and the San Francisco 49ers. But dementia made him quiet and apathetic; he no longer expressed an interest in the things we used to do together. Continue reading →

AlzAuthor Leah Stanley on Surviving Double Dementia Duty: A Story About Two Loved Ones Needing Care Simultaneously

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By Leah Stanley

I began writing Goodnight, Sweet: A Caregiver’s Long Goodbye in 2001. For me, committing the story to print was a cathartic experience following the deaths of my grandparents two years earlier. Edward Meade had battled an unspecified dementia while his wife Clara was afflicted with Alzheimer’s. As their designated caregiver, a role which I had gladly—and sorrowfully—taken on, I walked alongside them down that tedious road while loving, caring for, and protecting them.

Every afternoon when my then almost two-year-old son would go down for his nap, I would sit at my computer and write diligently, reliving the moments which, when put together, told the full story; I would laugh and I would cry as I remembered the decisions and recalled the words, reactions and facial expressions of those around me. I felt it was imperative that my experience as an Alzheimer’s/dementia caregiver not fade away with time, but that it be shared because I came to realize there were so many others following that same winding trail I’d walked, and I remembered how I was always encouraged when I could talk with someone who had been engulfed in a similar circumstance. I believe it’s one of the ways God designed us, being able to meet on the common ground of shared events. Continue reading →