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, 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.

Wednesday, August 9, 2017

Meet Bryan Wiggins, author of Autumn Imago




By Bryan Wiggins

No one I know has Alzheimer’s disease. My parents have entered their eighties with their sharp minds intact. Only one of my four grandparents suffered any kind of dementia, and Granny’s wasn’t that severe. So when I forget a name, lose my car keys, or question what the heck I’m doing standing in the basement after clomping down the stairs, I shrug my shoulders and carry on. I could still get Alzheimer’s, of course, but with no family history of it behind me, I find other things to worry about.

But when I decided to write a novel with a protagonist whose mother was in the early stages of Alzheimer’s, my lack of firsthand experience with the disease threatened to damage the one thing most critical to building the fictive world that readers love to lose themselves within: character credibility. So I set out to do the research that could show me what my own experience had failed to teach me. I went to a talk by a nationally known Alzheimer’s expert at my local memory care center. I dove deep into the web. I read Still Alice to see how someone far more qualified than me—a neuroscientist with a Harvard Ph.D. and a grandmother who had died from the disease—built a book that rang true for the readers I was most concerned about pleasing: those who either suffered from the disease or loved someone who did.


Somewhere between my worries about getting things right and penning the final lines of Autumn Imago, I created Mara, the 70-year old mother of my story’s hero, park ranger Paul Strand. Mara’s condition compels Paul to bring Mara and the rest of the family he’s abandoned to his remote Maine campground for a tempestuous ten-day reunion. After the book was published, I was honored to receive letters from a few family members of Alzheimer victims who shared how moved they’d been by my tale. That response inspired me to go back to examine how the largely intuitive process that guided my writing had worked to shape the woman who became the moral center of my story. What I discovered was that I’d built Mara less from an examination of her disease than of the impact she and it had on the family that surrounded her.


For Paul, the kitchen fire Mara starts in the home she shares with Paul’s sister, Kim and her family is the warning shot that brings him back to his family again. It signals the limited time he has to heal the breach between himself and his mother before she finally slips away. Every conversation with his mother becomes a struggle over whether to share the feelings he’s buried from their past or the compassion that can comfort her as she faces a frightening future. For Kim, Mara’s caregiver, Mara becomes the test of selfless giving mandated by her calling as a pastor. Kim struggles to live up to that divine ideal while battling the all-too-human emotions of anger and frustration experienced by anyone whose attended to an Alzheimer’s victim’s long term care. Kim’s husband, Robert, exploits Mara’s condition, as he challenges her failing memory when her instincts get her too close to the secrets he keeps from his wife and family.


Kim and Robert’s fiery teenage daughter, Aida, lashes out at everyone except Mara, revealing the compassionate heart that beats beneath an angry and conflicted girl. Aida’s tubby, shy, and brilliant 13-year-old brother, Aaron, may be the one who sees Mara, and her situation, most clearly. He diagnoses both the early stage of his grandmother’s disease and the mental acuity that still illuminates her while others can see only the dark shadows of things to come. Finally, Paul’s younger brother Tommy, a recently-recovered drug addict, provides the true litmus test for Mara’s competency. When Mara’s slight-of-hand provides Tommy with protection from the prosecution of a crime Paul believes Tommy should pay for, Paul later learns that his brother deserved the second chance his mother afforded him.


Mara, of course, is defined less by how these family members see her than how she sees herself. She possesses a wisdom and will that become more apparent as the story unfolds. And though the progression of her disease escalates the rate at which she breaks her connection to both her family and her world, that loss of every person and place that she loves is, in the end, one we all must surrender to. If writing Mara taught me anything, it’s how much I have to learn from those with Alzheimer’s Disease. They and their families are people who cherish the core component of our identity that I take so blithely for granted. My discovery of a character struggling to hold both herself and her family together before both slipped away reminded me that every day—and every memory we make in it—is a gift.


For me, that’s a lesson to remember.




BRYAN WIGGINS is a Maine-based author whose works have been published in The Maine Review, Canoe & Kayak, and Sea Kayaker magazines. For the past nine years he has been the host of the Pine Cone Writers’ Den, a Maine novelists’ collective, and a regular speaker on the New England writing circuit. By day Bryan works as an advertising agency brand strategist and copywriter. For the past thirty-four years, he has made annual pilgrimages to explore the rugged mountain landscape of Baxter State Park that is the setting for his second novel, Autumn Imago. That recently published story of family and natural drama was one of only three books selected to launch Harper Legend, a new HarperCollins imprint of “visionary fiction.” Bryan is currently at work on 48, the second book in his “Imago Trilogy.” This latest novel is a cautionary tale of personal ambition that follows its protagonist’s lifelong pursuit of hiking New Hampshire’s 48 4000 foot+ peaks. You can learn more about Bryan and his work at wigginscreative.com


Wednesday, August 2, 2017

"Meet Me Where I am - An Alzheimer's Care Guide" by Mary Ann Drummond


By: Mary Ann Drummond, RN

When I was a young girl I dreamed I would grow up and become a nurse. I seldom left home without my nurse’s kit filled with band-aides, cotton balls, and gum drop pills just in case my services were needed. It seemed so simple in those days to comfort and to heal, or at least that is what my Grandmother led me to believe each time she let me practice my skills on her.

If only caregiving were that easy! The reality is there are wounds a band aid cannot heal, diseases medication cannot cure, and hearts so burdened by the weight of caregiving, comfort cannot be found.

I was motivated to write Meet Me Where I Am – An Alzheimer’s Care Guide to share what I have learned from the greatest teachers of all…those whom I have had the pleasure of knowing and caring for along life’s journey who have dementias such as Alzheimer’s.

Serving many years as an executive in the assisted living industry, my passion for dementia care grew stronger as I continued to see how the application of key concepts created beautiful success stories for the residents, the care givers and their loved ones!

I began to teach my care concepts in support groups, public health seminars and caregiver symposiums. I would often hear from attendees afterward how helpful the information had been and would be asked if I had ever considered writing a book? With this prompting, the seeds to write the book were planted.

Meet Me Where I Am – An Alzheimer’s Care Guide was published in 2014. Writing this book has been a life changing experience. Caring for someone with Alzheimer’s disease requires an abundance of knowledge, patience and love. My goal was to give caregivers a tool that would teach, enlighten, and comfort while preparing them for the journey ahead. I was humbled to hear from the many readers how beneficial they found the book to be. When you have someone bring your book to you with the pages coffee stained, dog eared, passages highlighted, and they tell you it was given to them by a friend of a friend, and the same person is wiping tears from their eyes as they thank you for writing the book that has helped them so much, you say a prayer of thanks for being able to be there when you were needed.

Dr. Lisa Verges of MemoryCare Asheville, North Carolina refers to the book as providing “…useful strategies for navigating this journey with grace. It is an excellent and meaningful book and I highly recommend it.” Dr. Kathleen Hayden of Bryan Alzheimer’s Disease Research Center, Duke University, states “This book will help caregivers and family members understand dementia from the patients’ perspective. Meet Me Where I Am is a must-read for caregivers of all kinds.”

About the Author


Mary Ann Drummond, RN, is the author of Meet Me Where I Am – An Alzheimer’s Care Guide and I Choose to Remember. As the CEO of Angel Tree Consulting, Drummond has a passion for presenting innovative and successful strategies in both caregiver and provider settings to assist individuals with dementia “live their best” each day. With over thirty years of nursing experience and sixteen years as a VP in the assisted living industry developing programs for dementia care, she credits much of her expert knowledge to the greatest teachers of all, those who live daily with Alzheimer’s disease and related dementias. Meet Me Where I Am has entered a third print and has won three IPPY awards including: 2015 Silver Medalist Living Now Book Award for Caregiving, 2016 1st Place Gold Medalist Beverly Hills Book Award for Caregiving, and 2015 CIPA EVVYY 1st Place Book Award for Health and Diet. Ms. Drummond enjoys working with organizations across the country to increase successful outcomes in dementia care.


Twitter@RN4ALZ



Wednesday, July 26, 2017

Meet Suzka Collins, author of Wonders in Dementialand



By Suzka Collins

Ah… the wonders I found living with my mother in Dementialand. It all started almost minutes after she was diagnosed with progressive dementia. The cause was meningitis encephalitis. There seemed to be no choice at the time. I had to leave my bohemian life in the art world in California to return to a Chicago suburb where my mom was living. I am a painter. This had all the markings of a disaster.

After four years living in Dementialand, I returned to California and remember my friends telling me how sorry they were, how horrible it must have been and what a great sacrifice I made taking care of her. I hadn’t a clue what they were talking about. For me, I was on a crazy cruise of chaos and enchantment. I had to write a book. Dementia was getting a bad rap.

Wonders in Dementialand is a quirky, meta-fictional memoir. The book is composed of 350 pages with oddly connected sections that range from flashback memories of something that might have actually happened, to pure fantasy.

The architecture of the book is noticeably whimsical. Parts are pure imaginary. I metaphorically humanized ‘dementia’ mirroring a male character named Skeeter - an uncommon approach. Violet (my mother and main character) meets Skeeter in a port-of-crossing terminal. As Violet attempts to cross the border, she trips and falls in the arms of this handsome suitor. The suitor takes her away to exotic and alluring places that Violet keeps secret. Like a schoolgirl, Violet is smitten and scared. But Skeeter (similar to dementia) is persistent in pursuing Violet. Other parts have dreamlike processions and hallucinatory imagery depicting the facade of life with a fragmented potpourri of characters. Large balloons with cartoon faces of the Cookie monster, Dora, Betty Boop and Miss Kitty parade themselves about everywhere making all the craziness palpable and even mysterious at times. It’s funny and sad and touching at the same time. Yet through this book there shines the light of an authentic truism. Nothing is trivialized. The delusions, the paranoia and the discombobulated conversations are still there.

Wonders in Dementialand breaks through the stigma of dementia, which is now being called the defining medical concern of this generation. Today more than 47.5 million are living with dementia worldwide. Multiply that number by the family members and caregivers affected by dementia directly, day in and day out, and you have a universe of people living in dementialand. It’s a subject that matters.

Amazon > Wonders In Dementialand > Comments 

5.0 out of 5 stars

What wonders you’ll find… By H

I love this book because of its attitude - vibrant, free-spirited, and positive.
A book like this is precious. Reading it gives me the energy I need to tackle the world and notice the colors of what otherwise might be a debilitating tragedy. Dementia can destroy the lives of everyone involved, but in this book, Suzka gives the gift of a new perspective-- accepting, open, and daring enough to have fun.

5.0 out of 5 stars

I loved reading this book By Christi

Suzka explored dementia as only an artist could. As I read her book, I felt that I could actually see what she was seeing and feel the withdrawal from the everyday understanding of the "real" world that was being replaced with an other-worldly view that leaves all the baggage and preconceived notions behind. It is a unique view of dementia from a caring, loving daughter who accompanied her mother as she made this journey. I loved reading this book.


Suzka, painter-author



Facebook: dementialand


Twitter: @Dementialand

Instagram: Dementialand

Dementialand™

Wednesday, July 19, 2017

Meet Emily Page, author of "Fractured Memories"



By Emily Page
Writing about dementia came about fairly slowly and organically. I'm an artist, so when my dad was diagnosed with frontotemporal dementia at the age of 65, my natural inclination was to start doing paintings about our journey as a sort of self-prescribed art therapy. I used an elephant as both a symbol for and a talisman against dementia, because "an elephant never forgets." As I created paintings, I posted them on social media with an explanation of their meaning, and people really responded to them. At the insistence of a friend, I started a blog to help promote my artwork, and it became a kind of online journal. Before long, I was getting tons of great feedback from my readers when I posted about what we were experiencing as we coped with caregiving. "Me, too!" was a phrase I started hearing a lot.
After my dad passed away in early 2016, my readers kept calling for me to turn the writing and artwork into a book, which was a fairly terrifying thought. I don't consider myself a writer, so the thought of sitting down and writing a book was daunting, but I knew that what I'd been writing about on my blog had spoken to people, and I hoped that the book would do the same thing.
When my dad was diagnosed, he was really open about his diagnosis, and so I decided that honesty was paramount if my book was going to do him justice. In our home, honesty meant not just talking about the really hard stuff, but laughing at the ridiculous stuff, too. There's plenty of both. My motto was, "We laugh when we can, we cry when we must." So I talked about the silly things he did as a result of the disease, and I talked about the raw, painful stuff that we were going through in our efforts to give him the best care possible. There are moments when I don't make myself look so great, but I thought it was important for other caregivers to be able to see themselves in the writing and know that it's okay and forgivable to not be perfect. We're all just struggling to do our best for the people we love.
I'm getting some great reviews on Amazon, but even more important to me are the people who've been given the book by a friend and have taken the time to look me up and email me to say, "Thank you. You said all the things I've been thinking."
About the Author
Emily Page is a professional artist and part-time writer. Working out of Raleigh, NC, Page spends most of her time elbow deep in paint, but comes up for air periodically to share her art and thoughts on her blog. She translated her ridiculous musings about her family’s journey through her father’s dementia into a book, Fractured Memories: Because Demented People Need Love, Too, available at http://shop.emilypageart.com/.
Follow her on Twitter at @EmilyPageArt23, and read her blog at https://emilypageart.net/.


Wednesday, July 12, 2017

Meet Ann Hedreen author of Her Beautiful Brain


By Ann Hedreen

Without quite knowing it at the time, I began working on Her Beautiful Brain in 2004, when my husband and I made an award-winning documentary film about my mother called Quick Brown Fox: an Alzheimer's Story, which has had a long life on PBS stations and remains in distribution through Women Make Movies, Amazon and other sites. Making Quick Brown Fox made me realize there was so much more of my mom's story to tell than our film could contain. I also began to understand that, while I love filmmaking (which is what I do for a living), I have been a writer since I could hold a pencil and I longed to write much more than I was then writing as a filmmaker and occasional journalist. 

In 2008, the incredible gift of a two-week residency at the Hedgebrook retreat for women writers got me going and the Goddard MFA program, which I completed in July 2010, kept me going on what became a book-length memoir. 

Her Beautiful Brain is the story of my mother, a copper miner’s daughter who was divorced twice, widowed once, raised six kids singlehandedly, got her B.A. and M.A. at 40 so she could support us as a Seattle schoolteacher—only to start showing signs of Alzheimer’s in her late fifties, taking us all on a long descent we never could have anticipated or imagined. 

The book begins in Haiti, where Mom is visiting two of her daughters, one a Peace Corps volunteer and one—me—a journalist, and where we first suspect that something is wrong. From Haiti back to Seattle and back to the mine-gouged Finntown neighborhood in Butte, Montana where she was born; from her historic Seattle neighborhood to a locked geropsychiatric ward, Her Beautiful Brain travels the terrain of a heartbreaking illness: one that currently affects more than 5.5 million American families—a number that is expected to double or even triple by mid-century. 

The tone of the book is essay-like, not blow-by-blow or how-to or what-to-expect. It is a reflection on the life of one person and how Alzheimer’s disease bent the trajectory of that life. Her Beautiful Brain tells the story of who my mom was, the seismic social changes she and we lived through and how her illness changed not only her life but my life, forever. And not just mine but my whole family’s: my five siblings, our spouses, Mom’s 14 grandchildren. We’re a great example of the ripple effect of this most insidious and quietly cruel of killers. We are the children and grandchildren of a woman who lost not her mind but her beautiful, wonderful brain, as it was called by her high school classmates in Butte, Montana, where she was once known as the smartest girl in the school. 

Since Her Beautiful Brain was published in September 2014, feedback has been so poignant and meaningful. You get it, people say. You don’t try to make it pretty. As a caregiver, I feel less alone now. That’s why I wrote the book. Families living with Alzheimer’s disease are becoming ever braver about speaking out and busting through all the shame and stigma and misconceptions that surround Alzheimer’s and other dementias, and I believe it is because more and more of us are sharing our stories. 


You can find me at annhedreen.com, on twitter at @restlessnest and on Facebook.


Wednesday, July 5, 2017

Welcome Peggy Bushy, author of "Lewy, Mom, and Me"



By Peggy Bushy

When Lewy Body Dementia entered my home, the world as I knew it began to shift, and I found myself in a constant state of confusion. My sweet mother, who lived in our home, was hallucinating, her stories and behavior were becoming more and more bizarre, and I had no idea why - neither did any of the doctors I consulted. Lost and alone, I could feel myself becoming a little more unglued with every passing day while I watched the family rules fly out the window one by one. "Wait! I depend on those family rules." They may not be the same as the neighbor's rules but they're mine, they've been mine forever, and I'm comfortable with them.
 
Written or unwritten family rules become our guidebook. Even as adults when we partner up with someone else who has a different set of rules, it doesn't take long before we meld them together and find comfort and harmony with the new set. When dementia crept into my life and disorder began to rear its ugly head, my home felt like a foreign country and I didn't speak its language. Confusion and disorder visited before. I was used to a little fracture here and there in my routine. My feathers got ruffled, I talked about it, or researched it, and sometimes received a remedy for an outside source. This time, as hard as I looked I couldn't find a single answer and it wasn't long before all hell broke loose and my harmonious routine turned into anarchy. That's when I joined a support group and the company of others. That's when I learned I had to think outside the guidebook.
 
My mother was diagnosed with Lewy Body Dementia years after my search for answers and years after family harmony fell apart. After a few weeks of processing the information, I looked for some comfort in a book. I found a few books related to the topic but they were all medical or clinical. I wanted a memoir. A book that would make me laugh, cry, relate, and feel not so alone. Having found nothing, I gathered up my years of journals, and wrote one.
 
Peggy Bushy Author PhotoWriting Lewy, Mom, and Me was difficult. Re-living the journey over and over was often painful, but also has been enriching. In the end it brought me a huge sense of accomplishment - especially when I hear from my readers. Many people have reached out to thank me for sharing my story and tell me how closely they relate to my stories. I am so happy to be able to offer the kind of support that I was looking for when I was lost and searching for comfort.





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