Welcome back Bobbi Carducci, author of "Caregiver – You Are Not Alone"

Reposted with permission from AlzAuthors.com

By Bobbi Carducci

Caregivers very often become isolated as the needs of the one-in-care progress. Even well-intentioned family and friends begin to drift away, leaving caregivers wondering if anyone understands what their life has become.

I know that feeling very well. A caregiver for my father-in-law, Rodger, for seven years, I often felt as if the rest of the world had moved on to work and family life, believing my days were easy.

Some questioned how hard could it be to stay at home and cook his meals and take him to the doctor now and then. Surely I exaggerated the difficulty.

Worse was when I doubted myself. Was I the only one who questioned whether my loved one was faking sometimes? Or wondered why someone I cared about and rearranged my life for was suddenly treating me as the enemy? Did anyone else get angry and lose their temper or was that a character flaw unique to me? 

Toward the end, after weeks of little sleep and constant stress, when I prayed for it to be over, I questioned my humanity. I didn’t want him to die. I wanted the pain to end. But still, was I the only one holding that silent wish in their heart?

After speaking with caregivers and interacting with them as caregiver support group leader, and through online groups and as a speaker at caregiver conferences, I heard many caregivers express the same doubts and fears inspiring me to write my second book for caregivers.

Caregiver –You Are Not Alone is an anthology of caregiver stories representing varying ages, genders, and family dynamics all doing the hardest job they ever had to do. Although they may be slightly different from our personal experience, they are our stories too.

Each story is followed by an essay reflecting on my personal experience and feelings while caring for Rodger, when I felt very much alone.

About the Author 

Bobbi Carducci is a national speaker on the subject of Alzheimer’s and dementia, how it affects entire families and how to Prepare to Care – What Adults need to Know about Alzheimer’s/ Dementia Before and After It Strikes Home.

Amazon: Caregiver –You Are Not Alone

Amazon: Confessions of an Imperfect Caregiver

Website: www.bobbicarducci.com 

Twitter: @BobbiCarducci2

Meet Rosalys Peel, author of "Mike and Me"

Reposted with permission from AlzAuthors.com

By Rosalys Peel

Every two minutes someone in America is diagnosed with Alzheimer’s. Most will face this discouraging illness with their wife, husband or partner at their side. And yet the typical “Alzheimer’s couple” has no idea how to make the most of what lies ahead.

This is the predicament my loving husband Michael and I found ourselves in when we discovered that Mike had been diagnosed with Alzheimer’s. Over 45 years of marriage we had always dealt with problems together. But now we were advised to start preparing ourselves for the day when Mike would surely be moved from our home to an outside care facility. We simply weren’t ready to accept that.

“I don’t want to leave you and our home,” Mike told me—and so we made a deal. Despite all the scary stories we were hearing about this disease we decided to stand up to Alzheimer’s and defy the statistics as long as possible. Together we would go right on pursuing our hopes and dreams as husband and wife, confronting the disease together in our own home, and living the fullest life possible…for as long as possible.

Writing a book was the last thing on my mind at that time, but I did start keeping a journal. At first I was just trying to record new information and treatment advice from our doctor. But it turned out that journaling became a very empowering and comforting companion for me over the entire nine and a half years that Mike and I dealt with his Alzheimer’s.

My journal was a safe place where I could give words to my worries, concerns and fears. It’s where I logged the frustrations and setbacks that Mike and I encountered, but also where I recorded and celebrated our many victories, large and small. Day by day, my journal chronicled the astonishing power of mutual love, patience, compassion and stay-at-home care. Over time I became convinced that other couples and caregivers might be able to benefit from some of the new approaches Mike and I were learning.

Despite Mike’s illness we eventually exceeded virtually every typical Alzheimer’s expectation. Together, we travelled to several countries, helped care for our granddaughter, maintained our romance, kept Mike on his feet, celebrated every milestone, and found new ways to communicate with our friends, family and each other. We also saved countess thousands of dollars by caring for Mike in the familiar surroundings of our own home right up to the very end.

Mike eventually died, but he died as we all wish to die—with dignity and grace. And not before we had enjoyed nearly 10 full years of life, love and, yes, laughter together.

Gradually, there was the birth of a new idea in me. Looking back to when Mike was first diagnosed I could remember how I had searched the bookshelves in vain for a book that would help couples like Mike and me navigate the Alzheimer’s journey together. Later, I had a chance meeting with an experienced and caring writer who gave me this quote by author Toni Morrison: “If there’s a book that you want to read, but it hasn’t been written yet, then you must write it.”

I took that quote to heart and set out to write Mike & Me as my gift to other Alzheimer’s couples and their families who are just now starting their journey. While the word Alzheimer’s usually triggers pessimistic feelings, Mike & Me is an optimistic book, and for good reason. It chronicles the changing face of home care among Alzheimer’s couples. And it shows how the astonishing power of love, patience, compassion and stay-at-home care can help Alzheimer’s patients defy the usual statistics and live a longer, fuller, happier life despite this discouraging disease.

Writing this book has been a work of heart, and I know Mike would be happy that what we learned together on our Alzheimer’s journey is now helping other couples, families and caregivers.

ROSALYS PEEL BIO

Rosalys Peel is a Registered Nurse, a Lamaze-certified childbirth educator, and a Gottman-certified couples’ relationship facilitator. She teaches classes at Seattle’s prestigious Swedish Medical Center and has been featured on NPR and The Today Show. She remains a tireless teacher, writer and speaker, and a caring advocate for Alzheimer’s couples, families and caregivers everywhere.

WEBSITE www.MikeAndMeBook.com

FACEBOOK. https://www.facebook.com/mikeandmebook/

TWITTER: @PeelRosalys

EMAIL: Rosalys@bainbridge.net

Meet Miriam Green, author of "The Lost Kitchen"

Reposted with permission from AlzAuthors.com

By Miriam Green

When my mom, Naomi, was first diagnosed with Alzheimer’s I felt relieved. The doctors had finally acknowledged what our family had surmised for almost a year—Mom was losing her memory. Okay, I thought, what now?

Little in our lives changed at first. Mom still rattled around in her kitchen, was still an avid music lover, conversationalist, and sweet companion. She could maintain her household, and even stay by herself in the evenings when my dad, Jack, was busy. But the signs were everywhere.

There was the day she tried to unlock the front door to her apartment with the wrong key. It didn’t occur to her that she should try another one, or even ask for help. I was waiting patiently on the other side as she jammed that key into the door over and over, swearing in language I had never in my life heard her utter. Daddy rushed from the shower, thinking she’d hurt herself with all the screams. It took a while to calm her down.

What did change dramatically in my life was a commitment I made to visit my parents once a week. I traveled 2½ hours each way by public transportation to be with them. Mostly, I was there for Mom. Those were wonderful mornings. We would do all manner of activities together, ambling around the city, drinking coffee, and enjoying the sunshine. I used those visits to organize my parents’ kitchen and cook them food for the week.

I was privy to Mom’s anxiety over her waning memory. I held her as she cried bitter tears and told me she felt confused. It was the first indication that our roles would soon be reversed, that I was losing my mom by degrees, that the only way forward was a painful decline that inevitably led to death.

It’s been more than seven years now. I’ve learned a few things along the way— to avoid questions in my conversations with Mom; how a person’s gait can define their ill health; that front-closing bras are an Alzheimer’s intimate friend; and how to judiciously use her memory loss for our gain.

I don’t think we can ever be prepared for the strange turns and curves life throws us, but I do know that it helps me to write about them. First came the poetry. Then, what was initially a project I started with my dad as a humorous initiation into the world of cooking and caring for a spouse with Alzheimer’s—we called it “The Man’s Emergency Cookbook”—eventually morphed into its current composition. Thus were born my cookbook and my weekly blog. I didn’t need to be alone in my frustrations, fears and struggles. I could connect with the community of Alzheimer’s patients, their families and caregivers who were only a short click away.

And through it all, I cooked. I took what Mom had taught me when she was still active in the kitchen and used that as a basis to experiment with easy recipes that fed my spiritual and emotional hunger. My book, The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver, is a combination of recipes, poetry, and prose about my family and how we have shared the demands of Mom’s Alzheimer’s.

Miriam Green writes a weekly blog at http://www.thelostkichen.org, featuring anecdotes about her mother’s Alzheimer’s and related recipes. Her blog also appears on the Alzheimer’s Association website, http://blog.alz.org/. Her poetry has been published in several journals, including Poet Lore, The Prose Poem Project, Ilanot Review, The Barefoot Review, and Poetica Magazine. Her poem, “Mercy of a Full Womb,” won the 2014 Jewish Literary Journal’s 1st anniversary competition. Her poem, “Questions My Mother Asked, Answers My Father Gave Her,” won the 2013 Reuben Rose Poetry prize. She holds an MA in Creative Writing from Bar Ilan University, and a BA from Oberlin College. Miriam is a 20-year resident of Israel, and a mother of three.

You can find Miriam on Facebook at https://www.facebook.com/miriam.green.7399, and on Twitter at @thelostkitchen. https://twitter.com/thelostkichen.

Amazon: The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver

Meet Sarah Bearden Smith, author of "Broken Beauty."

Reposted with permission from AlzAuthors.com

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.

Broken 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.

It’s my hope through our story that readers will feel the power of love. No matter the disease, struggle, or difficult circumstance, you are loved and can get through anything with God. My story is not so much about losing the mother I knew, as it is an honest story of a family who has chosen life, not death, and who celebrates victory over tragedy. I show complete vulnerability and give readers who may be facing similar situations important insights into the lives of family, friends, and caregivers; memory care facilities; emotional and mental suffering; and heartbreak. But above all, it’s a story of searching for and finding hope in the storm, and finding forgiveness, restoration, and reconciliation in the process.

Also, for anyone going through early-onset Alzheimer’s, I hope they feel that this book gives them an authentic glimpse into the power of the disease and what is to come, and that no matter what they may tell themselves, they are not alone and there is no shame or guilt for any of the feelings they feel. It’s normal, and it’s okay. I want people to know there is purpose through pain, and I hope our journey opens every reader’s eyes to a unique kind of love. It is a love that is everywhere within the pages of this book and within the walls where Beauty resides.

And as for me, I don’t want to live with any regrets. I will continue to look into her heart, and eyes, and facial expressions, and will do my best to co-labor with God in her new world each day, being grateful that He is allowing me to shine light during this strenuous and laborious time. Mom is a human being with a name, and although this disease is a mystery and I want it to be cured, her life and my relationship with her are important, significant, and worthy of attention. Life matters, and every human being’s life should be valued.

 

About the Author

Sarah Bearden Smith is a housewife, mother of three, and a woman of deep faith, who has lived in Texas all her life. Sarah’s childhood was anchored by her family’s faith and their participation in church activities. She was a gifted athlete and reached elite status in competitive gymnastics by the time she was thirteen years of age. Sarah was born and raised in the Houston area and remained there until her departure for the University of Texas at Austin, where she was a speech communications major, a varsity cheerleader, and a member of Tri Delta Sorority. Following graduation, she remained in Austin, working in the soft ware and high-tech industry. After her marriage to Thad Smith in 2002, the couple moved to Dallas, Texas. Through their years in Dallas, Sarah and her husband have served on various boards and committees, including the Greer Garson Gala, the Presbyterian Hospital Healthcare Foundation, East-West Ministries, AWARE Dallas, and the Providence Christian School of Texas. They actively serve with their children in assisted living and memory care facilities and support organizations such as Council for Life, the Alzheimer’s Association, the Women’s Alzheimer’s Movement, and Community Bible Study. Sarah and her family are members of Watermark Community Church.

Follow Sarah’s journey on Facebook (Beauty in Alzheimer’s), on Instagram @beautyinalzheimers, or visit www.brokenbeautybook.com.

Purchase a copy of Broken Beauty on Amazon.

Meet Barbara Smith, author of "Still Giving Kisses"

Reposted with permission from AlzAuthors.com

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:

1. Friends and loved ones are scared and confused about the person’s decline

2. Friends and family do not know how to relate to a person who may no longer speak or seem to recognize them.

3. And most sadly, friends and family think that the person has so little awareness that their presence is of no value.

My 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 . . .

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.

Please visit the following links for information on resources including my books, courses, educational videos and social media.

Buy the book: Amazon

Website: http://www.RecyclingOT.com

Blog: http://www.recyclingot.blogspot.com

Educational Videos https://rumble.com/user/RecyclingOT

Facebook https://www.facebook.com/RecyclingOT/?ref=ts

Twitter https://twitter.com/barbarasmithotr

Meet Michelle Spray, author of "Lost Memories, Found Hope"

Published with permission from AlzAuthors.com

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 that 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.

I 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.

An important thing to note during the book is that I (or Jillian, the granddaughter in this novella) tried to do it all myself until I almost broke. So one thing I can’t stress enough to caregivers is to get help early. Take help when offered, ask for help, set appointments for someone else to take over so you can have a break and leave the house without worrying. Even small moments of respite can do wonders. Don’t be afraid to ask for help. It doesn’t make you incapable, it can only help you be a better caregiver.

All of my reviewers agree that Grandma would be proud of the work I’ve done with this book, bringing her story and memories to life. The overall consensus is that I’ve been able to reflect hope out of difficult moments while always remaining true to Grandma’s personality, love, and feistiness. She was a true pillar in my life. I stepped up when she needed me without question just as she had done for me. For that, I am truly grateful and proud.

Lost Memories, Found Hope is dedicated to all those in the thick of their own Alzheimer’s journey. Stay hopeful, ask for help, and keep a journal which may very well be the next AlzAuthors book to help end the stigma of Alzheimer’s.



Michelle Spray is an additional needs mom living in Connecticut. She’s proud to supply an underlying theme of hope and inspiration in all of her books.

Connect with Michelle on:

Amazon: https://amzn.to/2Qld5n5

Facebook: https://www.facebook.com/LostMemoriesFoundHope

https://www.facebook.com/SprayBooksEtc

Twitter: https://twitter.com/grandmasalz

Instagram: https://www.instagram.com/Grandmas_Alz

https://www.instagram.com/SprayBooksEtc

Pinterest: www.pinterest.com/MichelleSpray3

Meet Carol B. Amos, author of “H.O.P.E. For The Alzheimer’s Journey”

Reposted with permission from AlzAuthors.com

By Carol B. Amos

“H.O.P.E. for the Alzheimer’s Journey: Help, Organization, Preparation, and Education for the Road Ahead.”

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.

I learned about Alzheimer’s disease through reading, attending workshops, observing caregivers, and from on-the-job training. I have learned from my successes and my failures during this eleven-year period. I have shared my learning, experience, and encouragement with friends, family, and colleagues as they embarked on their journey. I found that a little information made a big difference in their caregiving, so I wrote the book “H.O.P.E. for the Alzheimer’s Journey.” Help, organization, preparation, and education can make the Alzheimer’s journey less stressful and more rewarding.

“H.O.P.E. for the Alzheimer’s Journey” equips caregivers for their journey. The book is a combination of structured information, insights, and personal narratives to demonstrate the concepts. The concepts are conveyed in an open, honest, and creative manner using original family email communications. These emails provide insight into our thoughts, concerns, emotions, and deliberations as we realized our mother’s memory loss, sought a diagnosis and treatment, selected housing options, and developed care strategies as our mother continued to deteriorate. The book introduces The Caregiving Principle™, a simple and novel approach that provides a deeper understanding of the person with Alzheimer’s and a framework for the caregiver’s role. The Caregiving Principle™ statesthat the amount and type of caregiving required is directly related to the needs and capability of the person requiring care. In other words:

“Needs of the Person” – “Needs Filled by the Person” = “Needs to be Filled by the Caregiver(s)” 

Simply put, if a person has needs and cannot provide for all of their own needs, then someone else must provide those needs. The “someone else” is a caregiver. The principle utilizes a holistic approach by using Abraham Maslow’s Hierarchy of Needs to define a person’s needs. Maslow’s Hierarchy of Needs increased my understanding of my mother.

“H.O.P.E. for the Alzheimer’s Journey” has been a blessing to many caregivers since the pre-release in May 2018. My ultimate goal is for the book to become obsolete. I am actively involved with fundraising and advocacy efforts to increase research so that a cure is found for Alzheimer’s disease.

About the Author:

Carol B. Amos started her Alzheimer’s journey when her mother started having memory problems. Carol has immersed herself in Alzheimer’s education by reading and attending conferences, workshops, and support groups. Carol is a CARES Dementia Specialist and is Alzheimer’s Association essentiALZ Plus certified. She was the winner of the 2012 “Your Favorite Memory” essay contest sponsored by the Delaware Valley Alzheimer’s Association. She has a passion to share her knowledge and make the journey for Alzheimer’s caregivers less stressful and more rewarding. She is also working to help eliminate Alzheimer’s disease as an Alzheimer’s Association volunteer, fundraiser, and advocate.

Carol has a B.S. and M.Eng. in chemical engineering from Cornell University. She retired from a thirty-five-year career at The DuPont Company. She is active in her church (youth ministry, women’s ministry, usher board, and construction committee). She has been married to her husband, Alvin, for nineteen years. She enjoys tennis, travel, and gardening at her home in Delaware.

Connect with the Author:

Buy the book: Amazon

Website: www.carolbamos.com

Twitter: @Carolbamos

LinkedIN: www.linkedin.com/in/carol-b-amos-a18b9a158

Facebook: https://www.facebook.com/carol.b.amos.3

Amazon Book Page: https://www.amazon.com/HOPE-Alzheimers-Journey-Organization-Preparation/dp/168350903X/ref=cm_cr_arp_d_product_top?ie=UTF8

Publication: https://www.delawareonline.com/story/opinion/contributors/2018/06/19/alzheimers-caregivers-remember-there-h-o-p-e/714534002/