How Saying “Yes” Helps Caregivers: Introducing “Start With Yes!”

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From the AlzAuthors Blog

By Cathi Braxton and Tami Neumann

Janna, a resident in a memory care facility, woke up one night and found a few staff members congregated around the nurses station.  When a nurse asked Janna what was wrong, Janna told the group that there were alley cats outside her window making all sorts of ruckus.  Several of the nurses seemed dismissive of  Janna with their sideways glances and eye rolling, but one staff member, Terry,  approached Janna with a kind but concerned smile on her face.

“Janna, let’s go see what all that ruckus is all about.  I suspect alley cats get hungry at this time of night.”  With that the two of them headed back down the hallway and disappeared into Janna’s room. Continue reading

From the AlzAuthors Blog: Sarah B. Smith Shares her Mother’s Alzheimer’s Story in “Broken Beauty”

It’s my hope through our story that readers will feel the power of love. (4)

By Sarah Bearden Smith

Writing a book was never a dream of mine. A stay-at-home mom driving an SUV, aka “shuttle bus,” I carpool kids to and from school, soccer, flag football, lacrosse, basketball practices, games, and tournaments. As I became a caregiver to Mom, God began drawing me closer and closer to Him through my pain and sorrow.

BOOK COVERBroken Beauty is the story of my mother—known as “Beauty” to our family— and our family’s journey through the devastating world of early-onset Alzheimer’s. I was a young mother in my thirties when my mother’s illness struck, and our family’s shock and pain at the disease’s manifestations has been nearly unbearable. At the time of her diagnosis, Beauty was still young and fit and my best friend. It’s a powerful and personal story about a daughter facing the unthinkable and the love I found to carry her through. Continue reading

From the AlzAuthors Blog: Occupational Therapist Barbara Smith Teaches Alzheimer’s Caregivers New Skills in “Still Giving Kisses”

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By Barbara Smith

I am an occupational therapist, specializing in developmental disabilities. I had never planned to work in the area of geriatrics. But when my mother developed Alzheimer’s disease, I was thrust into the world of home care, Medicare, assisted living and nursing homes. I read numerous books and learned the lingo of lawyers, the health care bureaucracy and gerontology.

Fortunately, as an occupational therapist, I have years of experience adapting environments and creating activities to promote functional skills and quality of life. I wrote this book to share how I helped my mother enjoy her life as best as possible, as she regressed through the stages. I could not help but notice that the residents in my mom’s assisted living and then her nursing home had few visitors.

I believe that there are many reasons for this, but common ones are:

  • Friends and loved ones are scared and confused about the person’s decline
  • Friends and family do not know how to relate to a person who may no longer speak or seem to recognize them.
  • And most sadly, friends and family think that the person has so little awareness that their presence is of no value.

still giving kisses copyMy primary goal in writing Still Giving Kisses: Helping and Enjoying the Alzheimer’s Victim You Love was to offer an alternative to the above situations. Like many others, I was in the “sandwich generation.” My son was a tween and teen during these years and had many developmental and social challenges related to autism. The time crunch from work and family obligations naturally made spending time with my mom difficult–as I’m sure is true for millions of other caregivers. However, when loved ones learn how to help and actually enjoy being with this person, the relationship takes on a beautiful and mutually beneficial meaning. Given the right information and support, family and friends can learn how to spend quality time with a loved one that will create positive memories.

The title of this book reflects one of the few remaining motor acts my mother was able to perform during the last few months of her life. When she was no longer speaking, non-ambulatory and unable to eat independently, she was still able to pucker up her lips to communicate “I love you, come over for my kiss.” This was a highly significant motor act, one that symbolizes a continuing connectedness between myself and the Alzheimer’s victim I loved.

There are many books on the market that describe the symptoms and stages of Alzheimer’s disease and behavioral interventions that promote function. Often this information is dry and overwhelming. There are also many highly readable memoirs that give the spouse, adult-children or the victim’s point of view. In writing, Still Giving Kisses, I strove to provide both.

You will read a compelling memoir of a woman whose earlier mental health problems compounded the many challenges of memory impairment. The many therapeutic techniques, adaptations and teaching tools I share are all tricks of the occupational therapy trade, along with my own unique touch. Extensive resources and medical, legal and care-giving information provide survival tools.

Although I wrote this book primarily for friends and family of Alzheimer’s victims, Still Giving Kisses provides a framework for health care professionals entering the field of geriatrics. Indeed, I wish this resource had been available when my mother began showing the earliest symptoms. I hope that my book helps you to enjoy a journey that nobody chooses to take . . .

Purchase Still Giving Kisses

About the Author

Barbara Smith is an occupational therapist specializing in developmental disabilities. She discovered a penchant for creating highly effective therapeutic activities out of household materials such as detergent bottles, cardboard boxes and newspapers. Her book The Recycling Occupational Therapist describes how to fabricate and use these activities.

Barbara’s second book From Rattles to Writing: A Parent’s Guide to Hand Skills (published by Therapro, Inc. 2011) is written for parents with typically developing children from ages birth through five years to help develop the skills needed to read and write. In addition, the activity adaptations make learning easier for children with sensory, motor or sensory challenges.

From Flapping to Function: A Parent’s Guide to Autism and Hand Skills is written for parents of children who have or they suspect may have an autism spectrum disorder. Readers will learn how autism impacts the development of hand skills and to use the teaching strategies and adaptations that help children reach their potentials to perform everyday functional activities and academic skills in school.

Connect with Barbara Smith: books, courses, educational videos and social media

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For more extraordinary books about Alzheimer’s and dementia
please visit the AlzAuthors Bookstore.
Reposted with permission of AlzAuthors, the global community of authors
and readers whose lives have been touched by Alzheimer’s and dementia.
I am a co-founder and admin.

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From the AlzAuthors Blog: Michelle Spray Writes About Her Novel “Lost Memories Found Hope: A Granddaughter’s Story of Love throughout Alzheimer’s”

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By Michelle Spray

I truly feel honored to be included as an integral part of the AlzAuthors group. Not only have I written a book with will make my grandmother proud, I have lived the caregiving experience one hundred percent. I was Grandma’s primary caregiver for seven years and got my on-the-job training simply because I lived there. It was up to me. I learned how to cope, distract, exercise patience, and lean on hope to get through all the emotions of dementia and eventually an Alzheimer’s diagnosis. I understand the stress that families are going through, including worrying and grieving for the Grandma I knew even though she was still alive. The day she no longer recognized me is a moment that will forever be etched on my heart.

Lost Memories front cover 2018I didn’t want to write a sad book about Alzheimer’s because that had already been done, so I used the opportunity to write a fictional story based on Grandma’s Alzheimer’s. I included the funny things she’d say, or how sometimes, even in the midst of it all, she would have a quick reply or joke, that always took me by surprise. At the end of the day, it would be these funny moments that helped me through all times I felt like crying; waiting for the mailman who already came, having her accuse me of stealing her teeth, telling me that the golden years weren’t really golden but instead a little rusty. When I’d ask her how she was feeling, she would tap the table and say, “with my hands.” Oh, how I miss her. Continue reading

From the AlzAuthors Blog: Carol B. Amos Shares “H.O.P.E. for the Alzheimer’s Journey”

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By Carol B. Amos

My two brothers and I were devastated when our mother began displaying signs of Alzheimer’s disease in 2002. She lived alone in her home and her nearest adult child lived four hours away. We banded together to face this challenge head-on. We began a period of observing, investigating, collaborating, and careful listening to gain insight into the situation. We visited and called our mother more often. We each solicited advice from caregivers we knew and visited our local Alzheimer’s Association office.

My brothers and I worked hard to help our mother maintain her independence and remain in her home. We worked with her doctors, and after multiple attempts Aricept was prescribed. We hired a social worker and nurse to assist her. When “issues” arose, we never knew if an event occurred as she explained. This was extremely frustrating to us. Eventually a dangerous incident demonstrated that she could no longer live alone. It was difficult taking responsibility for our strong, independent mother. Continue reading

From the AlzAuthors Blog: Meet Tamara Prosper, author of “The Elders,” a Collection of Short Stories

Elders are not merely old people. Regardless of their current condition, at heart they’re still parents, spouses, teachers, veterans, housekeepers, artists, entrepreneurs, farmers, neighbors, caregivers, and friBy Tamara Prosper

Ever since I can remember trying to navigate through grief, frustration, anxiety, anger and sometimes even joy, writing has been the compass that lead me to equilibrium. Seven months after uprooting my family by moving from our home in a major southern city to take what I expected to be my dream job as the Administrator of a beautiful nursing home in rural North Carolina, I was exhausted, frustrated, angry and depressed. My children had quickly adjusted to our new environment. My husband seemed to be moving forward in his business endeavors. He and the children appeared to be quite content with everything except for the fact that I spent very little time with them. My friends lived far away and I had little time to make new friends so I poured my feelings into journals.

When saddened by the unexpected death of a resident, I wrote. When I was frustrated by demands from the corporate office, I wrote. When angered by the unrealistic expectations of resident’s family members and when my character was questioned, I wrote. When my staff was mistreated and when we celebrated our first deficiency-free annual state survey, I wrote. I wrote of individuals that I worked with before moving to North Carolina. I wrote my imagined explanations for the exasperating behavior of certain residents and their loved ones. I placidly withstood and gently addressed blatantly disrespectful behavior from a resident’s family member, then filled pages with the fury that had been veiled behind my calm demeanor. Hurt feelings, sweet memories, righteous indignation, joy, sorrow, celebration, dread, and voracious hope flowed from my spirit to my journals.

book cover (1)In nine months I had written and edited more than a dozen stories, finally choosing those that I believed were worthy of sharing with the world. I wanted people to see the humanity of elders and their caregivers. Elders are not merely old people. Regardless of their current condition, at heart they’re still parents, spouses, teachers, veterans, housekeepers, artists, entrepreneurs, farmers, neighbors, caregivers, and friends. They want what everyone wants – to enjoy a good meal, to laugh at a funny story, to spend time with loved ones, and to contribute to the world. Caregivers, whether professionals or responsible loved ones, are among the unrecognized heroes of our society. They give far more than they receive, simply because they know it must be done. By sharing varying perspectives and situations I seek to make these truths known.

By having a glimpse into the lives of The Elders, people may recognize someone they know or have a frame of reference for someone in the future. I want people to feel a connection with The Elders so they will empathize with and advocate for the elders in their communities.

Purchase The Elders

About the Author

Tamara G. ProsperI’m an Aging Services Professional with a sincere love for older adults and a resolute desire to see them thrive throughout all stages of life. I work directly with elders in organizations that support their care. I share as much information as possible with as many elders and caregivers as possible, to prepare, inform, educate and encourage them as they experience aging. I’m thankful to have received very positive feedback from readers.

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For more extraordinary books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore.  Reposted with permission of AlzAuthors, the global community of authors and readers whose lives have been touched by Alzheimer’s and dementia. I am a co-founder and admin.

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From the AlzAuthors Blog: Ellen Smith Discusses Her Alzheimer’s Novel “Reluctant Cassandra”

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By Ellen Smith

Reluctant Cassandra came to me first as a title. I’ve always been fascinated by Greek mythology and especially with the character of Cassandra. She was given the gift of prophecy along with the curse that her warnings would never be believed. In Greek mythology, Cassandra’s story ends with the fall of Troy—a tragedy she foresaw but was unable to prevent.

What would it be like to see the future and still be helpless to change the outcome? Unfortunately, I’ve lived that experience. Many of us have. When I wrote my own version of a modern-day Cassandra story, I imagined a woman whose father had been diagnosed with Alzheimer’s. She could see clearly that his health was deteriorating, but it was still so hard for her and her family to accept the future that was unfolding.

Reluctant Cassandra LargeThe journey that my characters took through anticipatory grief was very similar to what I had just been through in my personal life. I actually wrote Reluctant Cassandra the year after I lost my son. Living through his diagnosis and passing was a heartbreak I hadn’t been able to put into words, but when I stepped into this fictional world, the pain of my own Cassandra experience poured out.

While writing Reluctant Cassandra was cathartic, the story continued to take on a life of its own after publication. Only a week after my release date, I received my first letter from a reader. She had connected strongly with the story because it mirrored her own experience after her father was diagnosed with Alzheimer’s. I was so touched that she reached out to share that with me—in fact, I still have her email printed out and pinned over my desk! Her letter was later joined by more notes from other members of the Alzheimer’s community. Here I had written this story at a time when I felt so alone and now it was connecting with readers from all over.

In the three years since Reluctant Cassandra was published, I’ve continued to write and advocate for those with Alzheimer’s. I released a short story collection loosely based on the setting of Reluctant Cassandra on Channillo for Charity, with all proceeds going to benefit the Alzheimer’s Association. Even though I didn’t know anyone with Alzheimer’s when I was first writing Reluctant Cassandra, this disease now has many faces for me. I see those who have been diagnosed with Alzheimer’s themselves, as well as their families, friends, and caregivers. I’m grateful to them for telling me their stories, and honored that they are willing to hear mine, too.

This is the true gift of a story: it reaches across the barriers of time and place and circumstance and allows us to connect with each other. The Greek myth of Cassandra was first told hundreds of years ago, and yet the story still impacted me as a 21st century reader. My novel was inspired by a grief I couldn’t put in to words, but writing this story allowed me to become a part of the Alzheimer’s community. I could never have imagined where the book would lead me when I first thought of the title years ago. I am beyond grateful that it brought me here.

author headshotAbout the Author

Ellen Smith is the author of Reluctant Cassandra, Every Last Minute, and the Channillo for Charity series Ghosts of Eagle Valley, which benefits the Alzheimer’s Association. When she isn’t busy writing, Ellen can usually be found reading, crafting, or playing piano. No matter what she is doing, Ellen is always wondering, “What if?” Ellen lives with her family near Washington, DC.

 

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From the AlzAuthors Blog: AlzAuthors Launches Its “Inspiration Collection” During Cruise Dementia Conference

AlzAuthors is thrilled to join a new cruise and conference designed for those living with early-stage Alzheimer’s, their caregivers, and their loved ones. The AlzAuthors Inspiration Collection: Extraordinary Books about Alzheimer’s and Dementia will sail to the Caribbean April 6-13 during the inaugural Connecting Circles of Care and Building Bridges of Hope Cruise & Conference, an empowering 7-day retreat experience that offers respite and education.

Lisa Chirico

“Our cruise and conference provide an opportunity for attendees to benefit from a wide range of programming created for their complex and stressful lives,” says Lisa Marie Chirico, Dementia Caregiver Cruise and Conference Producer. “Additionally, the tropical wonders and beauty of the Caribbean offer healing for both the body and the spirit, so it’s a perfect pairing.” Chirico was a full-time caregiver for her father, who had Alzheimer’s disease, and is passionate about supporting dementia caregivers and their families. She currently works as a Nursing Home Navigator Coach for clients experiencing long-term care at Nursinghomeology.com. Continue reading

From the AlzAuthors Blog: Jessica Bryan Returns with “The Mighty Ant – An Anthology of Short Stories for Seniors”

_just like the little ant, whose size is disproportionate to its strength, so can stories have strong impact, regardless of their length._
By Jessica Bryan

I am an author of over 28 books who has always shared my stories with my mother. Sadly, Mom suffers from Alzheimer’s, and as the disease has progressed she no longer comprehends more intricate plots, nor can she focus on longer, more detailed stories.  As a consequence, I began reading short stories to her. I noticed that after reading something more easily comprehended, there was often something in the tale that sparked a memory and conversation.  “Do you remember gardening?” I asked her after reading about a gardener. It brought a sweet reminiscent moment that included smiles and even laughter. That spawned my idea for a book of short stories specifically dedicated to the elderly with cognitive issues and their caregivers who often search for activities that will provide quality time with their loved ones. Continue reading

From the AlzAuthors Blog: Florrie Munat Shares her Lewy Body Caregiving Story in “Be Brave”

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Love Remains

By Florrie Munat

“Are you going to write about this?” Chuck asked.

I stopped sorting the pile of laundry that a nursing home aide had just left on his bed and turned to look at my husband. Had we not been married for thirty-six years, I might not have known what he was talking about. But in addition to our long marriage, for the last two years I’d been supplying him with words he could no longer remember. So it took me only a few moments to figure out exactly what he meant.

He was referring to the soul-shattering changes that followed his stroke and Lewy body dementia diagnosis. Those changes had ended the chapter of our marriage when we lived together in equal partnership under one roof, and had begun the current chapter in which Chuck was a nursing home resident and I was his daily visitor. He was asking if I was going to write about those changes.

Back when I worked as a librarian and writer, and Chuck taught high school English and then edited a national classroom newspaper, our married life included some major changes (a cross-country move from Connecticut to Washington) as well as some tragedies (the death of his ex-wife, which led to my adopting his three young children).

But those changes seemed simple compared to this one because I felt alone now. I had become the sole repository of many of our once-shared memories, which left me with a profound sense of loss.

By asking this question, Chuck was giving me permission to document and reflect not only on the cataclysmic events of the past two years, but also on however many years lay ahead of us. His question: “Are you going to write about this?” was also a request. If he’d been able to frame it differently, Chuck might have said, “It’s up to you to tell our story now because you’re the only one who can. And others may be helped by knowing what happened to us.”

Four more years passed before we had to say our final goodbyes, and during that time he continued to remind me, “Are you going to write about this?”

be brave cover imageHis question planted the seed that grew into my memoir, Be Brave: A Wife’s Journey Through Caregiving. He even gave me the title on the day he decided to stop eating and drinking and told me to “be brave.”

With the exception of one chapter about our family’s celebration of the Irish New Year shortly after Chuck’s dementia diagnosis, I wrote the first draft of Be Brave after Chuck died in 2009. Then, with the assistance of an insightful developmental editor and a talented book designer, I spent three years rewriting that draft—and in December 2017, Be Brave was finally published. Kirkus Reviews chose it as one of its Top Indie Books of 2017, calling it “a beautiful, richly panoramic book that should reassure caregivers and delight memoir readers.”

While I worked on Be Brave, I was processing my grief by writing and rewriting our story until I found some meaning in those six nursing home years by placing them in the context of our forty-year marriage. This is not to say I discovered a reason why our lives played out the way they did. That remains an unknowable mystery. And if I could have an intact, healthy Chuck back right now, I’d do it in a heartbeat.

But by writing our story, I did find some consolation embedded in our suffering. And that is that no matter how difficult life became during the caregiving years, our love for one another was never in doubt or in danger. In fact, had we not lived through those last six years, we would not have known the depth and magnitude of our love.

Like all good teachers, Chuck asked questions; he didn’t provide the answers. He wanted me to figure out why “writing about this” would be a good idea. I think he knew his question would lead me to the understanding that even after much is taken, much abides. Now his illness is gone. But our love remains.

florrie munatAbout the Author

Florrie Munat is the author of Be Brave: A Wife’s Journey Through Caregiving (2017), a memoir focusing on the years she was a caregiver for her husband Chuck who suffered from Lewy body dementia. Florrie has published several children’s books, articles, stories, and over 150 young adult book reviews. She’s worked as a reference librarian, English teacher, and university press worker. She lives near Seattle, Washington, where she records audiobooks for the Washington Talking Book & Braille Library, and is writing a YA novel and a memoir about grieving. Learn more about Florrie and Be Brave at www.florriemunat.com.

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