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.
Tuesday, April 24, 2018
Meet Paul Toolan, Author of "A View From Memory Hill," a Collection of Short Stories on Memory, the Past, Ageing, and Loneliness
Wednesday, April 18, 2018
I have read the book, seen the last page, read the last line, I know what happens and know what can happen unless they find a cure for this awful disease. So when I was diagnosed myself nine years ago, aged just 50, I was absolutely petrified, and with good reason.
No cure, no sign of a cure on the horizon and after checking out what help there was available for somebody my age with dementia, which turned out to be practically non-existent, I was at a loss at what to do. I was so lucky in one way because my wife Elaine had been, and still is a carer for 30+ years and it was her who helped me get my diagnosis as she recognised the signs.
So what’s changed in the last nine / Ten years? A huge amount actually, we now have memory cafes all over the world, we have so many groups globally connecting up and beginning to talk about this disease. We have TV adverts, politician’s talking about it in Government’s and generally a better understanding, so why, oh why, is it still in the shadows when it comes to
TELLING THE TRUTH ABOUT THIS DISEASE!!?
It is only because relatives of those with Dementia and those actually living with dementia have started to write books about it are we starting to know the real truth about this disease, and this is exactly what this book is all about. This is a book written by someone who has Lewy Body’s type dementia but is still lucky enough to have the abilities, with a LOT of help, to write it, but let’s make one thing clear
This book is not for the faint-hearted.
This book is not about Clever Medical Terms or graphs.
This book doesn’t wear Rose tinted glasses.
This book is about not only about how hard it is to live with this awful disease, how hard it is to get help etc., but ALSO a book of helpful hints about HOW to get help, what to do when you go for a diagnosis and what to do after. It’s a book of hope, but most of all it’s a book of truth, and about, as they say,
“Hearing it right from the horse’s mouth.”
I am at peace with my illness, I believe every day is a bonus and every breath I take is a blessing, and no matter what happens, if I can give a little back to all those around me who have helped me along my way, then so be it.
Best wishes, Norrms Mc Namara, Founder of Global Purple Angel dementia awareness Campaign
Now recognised in 55 Countries around the world with 860 Global Purple Angel dementia ambassador’s.
To find out more please contact
@Norman Mc Namara
Amazon book also availiable on Amazon USA and Amazon EU
Wednesday, April 11, 2018
“Cobwebs in my mind!” was how my mother depicted the disease that ravaged her brain. Mom was diagnosed with Alzheimer’s and vascular dementia in May 2000, after episodes of TIA’s and early signs of dementia. She was 82 years of age. This was a major turning point in the life of our family. For me, it was the birth of a challenging new creative phase.
I was in my 50’s, at the top of my professional career as CEO of a large social service agency. Even with professional training and master’s degrees in family studies and family counseling, I was not prepared to take on the role of daughter caregiver, looking after my frail, elderly parents.
I began to write poetry and keep a journal, jotting down what worked for me as each new trial unfolded in dealing with an unsympathetic health care system and the bewildering assisted living scene. I made a promise to myself that, when I had the time, I would write a book for family caregivers, filled with tips and ideas that I found helpful during my seven years of caregiving. Nine years later, after the deaths of both parents and shortly after I retired, I fulfilled this promise, completing my book, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion, November 2015. On August 6, 2016, my book won gold and silver medals at the “President’s Awards” event of the prestigious Florida Authors and Publishers Association.
Being retired, I can now give back to the community in other ways. In June 2015, I initiated a website, “CaregiverFamilies.com,” along with a free e-newsletter dedicated to providing tips and resources to family caregivers of loved ones with dementia. I blog twice a month on aspects of dementia caregiving, and I maintain a “Caregiver Families” Facebook Page, an Author Facebook Page, and a “Caregiver Families” Pinterest Page. I also volunteer with my local Alzheimer’s Association for their Speakers’ Bureau, and make myself available for other speaking engagements.
Two of the greatest compliments I could ever receive about my memoir came from the national Dementia Action Alliance’s Board Chair, and from Alzheimer’s advocate/author Maria Shriver. “It’s outstanding! It was so inspiring, so warm! I don’t have the words to describe your book,” claimed Jackie Pinkowicz of the Dementia Action Alliance, leaving this message on my cell phone in the spring of 2016. This past December, after Ms. Shriver read my book, her assistant made a request to post one of the book’s chapters on their website, “The Women’s Alzheimer’s Movement.” I invite you to read Chapter 11.
A decade ago when I was caring for my mother there were few resources to support my role. I am glad that caregivers and those living with the disease are coming forward to write and discuss their challenges, joys and heartaches, and advocate for a cure. I hope that my writings and contributions are making some impact for good in the lives of fellow caregivers.
Purchase Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion
Through CaregiverFamilies.com and her award-winning book, Elegy for Mom: A Memoir of Family Caregiving, Alzheimer’s, and Devotion, Vicki Kaufmann hopes to provide “tender loving care,” support for the caregiver, and practical tools and resources to educate family members about Alzheimer’s and related dementia. Her mission is to provide information on the stages of Alzheimer’s, better coping methods, and assurance, so you know you are not alone in this journey.
Vicki Kaufmann, MA, MPSt, is a retired certified family life educator and counselor. She discovered great joy and blessings in the seven- year period, from 1999–2006, when she was a caregiver for her elderly parents. Her mother suffered from vascular dementia and Alzheimer’s. Read about Vicki’s journey.
Vicki knows the importance of a family support system, having counseled hundreds of couples and families during her twelve years as a certified family life educator, and marital and family counselor. In addition, she has over thirty years experience in nonprofit management, professional fundraising, community and public relations, and collaborating with numerous social service and ecumenical organizations.
Connect with Vicki Kaufmann
Caregiver Families Website
Caregiver Families on Facebook
Facebook Author Page
Wednesday, April 4, 2018
Friday, March 30, 2018
Meet Linda Brendle, Author of “A Long and Winding Road: A Caregiver’s Tale of Life, Love, and Chaos”
by Linda Brendle
My goal in life was not to become a writer. I enjoyed writing when I was younger, and I toyed with the idea of making a career of it until I received my first negative review from an English teacher. I don’t take criticism very well, and I took her comments personally. Years later, though, after the sting of her rejection had faded, and especially when I became a caregiver, the need to express myself resurfaced.
Becoming a caregiver was not one of my ambitions either. When I was in the seventh grade and was asked to write an essay on “What I Want to Be When I Grow Up,” my choice of careers was not caring for my aging parents. However, when a loved one has a need, you step in to help. Then, whether by small increments as the need progresses, or all at once because of a catastrophic event, you realize that you have become a caregiver.
When I became a real hands-on caregiver, I often went to Aunt Fay for advice. She’s Mom’s younger sister, and she cared for both her mother and her husband for many years. One thing she told me was to keep a journal, because one day my experiences might be of help to someone else, and I took her advice. I didn’t write every day, but after a particularly trying episode, I’d write about it and post it on Facebook. It was a safe way to vent, people responded positively, and I was encouraged to continue to write.
Later, my husband David and I bought a motor home and fell in love with the RV life. We were both retired, so we decided to take an extended trip through the southeastern part of the United States. Mom and Dad were living with us by then, so they were included in the plans. I knew that sharing a tiny living space with two people with Alzheimer’s, even two people I loved dearly, would lead to many trying episodes, so I took along several of my favorite pens and a spiral notebook.
Initially, I had no larger purpose in mind than to keep a record of our travels and perhaps gather material for a few Facebook posts. But situations that can be overlooked in a 2,600 square foot home are in your face in a 40-foot RV, and I began to pay closer attention to what was going on. I discovered more than I wanted to know about how much Alzheimer’s had taken from Mom and Dad. I realized that the simple tasks of taking a shower or shaving had become overwhelming, and simple decisions like ordering from a menu were impossible. I also recognized my own denial of our new reality.
By the time our journey was nearing its end, I began to wonder if my journal might be more than just a practice exercise, and visions of a book danced in my head. Once we were home and settled, I transcribed the handwritten manuscript onto my computer and polished it a bit. I asked my son, who had already published several books, to take a look at it. His response went something like this:
“You tell a good story, but where is your story? Why are you in Florida; why are you caring for your parents; and who is David?”
I went back to the keyboard, and for the next several years I edited again and again. I worked hard to break through the protective barriers I had built around my own feelings and to share the harsh realities of this horrible disease and the good, the bad, and the ugly of how I dealt with being a caregiver. When I finally went public, my readers said my story made them feel less alone. By exposing my own fears and failures, I had given them permission to accept their own shortcomings, and to tell their own stories.
I began to write because it was personally therapeutic, but I continue to write because my stories touch others. People who have little joy left in their lives laugh with me at the antics of my sweet family; those who have shed an ocean of tears are encouraged when they discover that someone else understands; and some who feel like caregiving is a dead-end are inspired to keep living in spite of their situations. My book isn’t a best-seller, but as it helps ease the burden of those who are dealing with Alzheimer’s, it somehow gives a sense of meaning to Mom and Dad’s struggle – and that is all the success I could hope for.
About the Author
I cared for my mother and father, both of whom had dementia, for fifteen years. After that season of my life passed, my husband David and I moved to the country where I work part-time at my church, garden when the notion strikes, tend to the whims of the feral cat who took over our home two years ago, and write about all of the above.
Connect with Linda Brendle
Wednesday, March 21, 2018
Meet Meg Foster, author of “7 Spiritual Steps for Caregivers: A Path to Meaning and Hope in Alzheimer’s & Dementia Caregiving”
Wednesday, March 14, 2018
Wednesday, March 7, 2018
After five years in the making, writing this memoir has been one of the most intense endeavors I’ve ever taken on, but well worth it.
While I was writing this memoir I discovered how much pain I still had deep inside of me. Pain from some of the experiences. Pain from not knowing what or how to deal with dementia. Pain of not understanding what caregiving entails. Pain from dealing with the healthcare field. Finally, pain when it’s all over.
Many times through my caregiving years I felt lonely inside. Even after my Mother’s death I felt loneliness. You know what I mean if you are a Caregiver or have been one. Even though I was surrounded by family and people I loved, there was still a sense of loneliness.
Pouring through my journals to capture information for my memoir was like going back in time and reliving the experiences. Some of my entries were humorous and other entries were screaming, “Help! I don’t understand.” Still others were filled with sadness and torment. I even found myself in tears while typing the manuscript! I began to realize I wasn’t “done” with my grieving, not even close. That’s when I discovered I had not had any closure; I had no idea how much I needed that. Personally, I don’t believe we ever truly “get over” the death of someone we love, we just learn to accept it; we never really forget. My loved ones are still close to my heart.
My intention for writing this memoir is to help other caregivers know they are not alone in their journey; to let them know it’s an ongoing learning experience all the way to the end. There’s no magic wand to free up the pain and sacrificing a caregiver deals with.
In my personal experience, my faith was my saving grace throughout my caregiving years. The Lord carried me through some rough and turbulent seas, without Him I would have drowned.
A scripture that came to me during the writing of my memoir, and is included inside the book is: “Weeping may remain for a night, but rejoicing comes in the morning.” Psalm 30:5.
The feedback I’ve gotten from my book has been one of encouragement, hope and most of all keeping the faith. This is confirmation of the need caregivers are searching for.
Purchase To Helen with Love, A Memoir of a Daughter’s Caregiving Journey
About the Author
Linda Jenkins has been in the skin care field for 18 years. Time spent with individual clients taught her how deep a relationship can go with genuine caring and the importance of touch. Having a nurturing character and personality helped her as she became the primary Caregiver for her mother after a diagnosis of Alzheimer’s. Living the role as a caregiver, journaling along the way, Linda was compelled to share her experience with others after the death of her mother in 2011. To Helen With Love, A Daughter’s Caregiving Journey offers information, support and inspiration.
Connect with Linda Jenkins Facebook Blog
Wednesday, February 28, 2018
Meet Rick Lauber, author of “The Successful Caregiver’s Guide” and “The Caregiver’s Guide for Canadians”
Wednesday, February 21, 2018
Nearly five years ago, after presenting at an Alzheimer’s caregiver conference, a seed was planted in my heart to write a children’s book about Alzheimer’s and dementia. When the conference was over one of the attendees came up to purchase one of my books. As she was leaving she asked if I could recommend a book to help her young child with the changes her family was experiencing since her mother was diagnosed with dementia. I was at a loss. I had been so focused on education for adults that I had not researched current literature for children.
I soon learned there were several great titles available to help children understand the dementia journey. What motivated me to add to the existing collection was the growing need to help young children not only understand this difficult topic in a sensitive, age-appropriate way, but also a sincere desire to give families tools to help maintain connections for as long as possible.
Last year, I was blessed to partner in this project with a talented co-author, Dr. Beatrice Tauber Prior, and a brilliant illustrator, Julia Walther. The imagery in the beautiful artwork of Grandma and Me helps to capture the child’s imagination. My grandson liked the book so much he took it everywhere with him for two days, even into the movie theater!
Together with Beatrice and Julia, my vision for this book came to life in a much greater way than I could have done alone. Children aged five to nine are drawn into the story, learning how to help their loved ones while maintaining a loving relationship. There is a special counseling section for parents at the end to guide them as they continue to work with their child. Grandma and Me helps to address a young child’s feelings, provides tools to help them feel successful in their interactions, and provides answers on how to maintain the connections between family members, despite the disease.
The first review I received was from a young reader who bought the book to help explain dementia to her little brother. Both Beatrice and myself were deeply touched by her words: This book is about a sad topic, but it explained very well about the Alzheimer’s disease. The pictures are very entertaining and captivating. We were drawn right into the book with the exciting story. Now I know more about this, and I can help explain it to my younger brother.
I am thankful for the partnerships that brought this book to life. From the caregiver who planted the seed in my heart several years ago, to my co-author Beatrice, our illustrator Julia, our publisher Morgan James, and most of all, the many special people who have dementia that we have had the pleasure to care for, learn from, work with and know. You are all part of the tapestry that has made Grandma and Me – A Kid’s Guide for Alzheimer’s and Dementia one of the newest resources available for the dementia care family.
Amazon: Grandma and Me – A Kid’s Guide for Alzheimer’s and Dementia
Wednesday, February 14, 2018
On Facebook (Kathi Macias—personal page; https://www.facebook.com/Kathi-Macias-75996188045/ --author page).
On Twitter (@alandkathi).
Wednesday, February 7, 2018
“What’s going to happen to Rodger?’ was the first thing most people asked upon hearing of my mother-in-law’s passing. Extremely introverted, unable to drive, and not in good health, he’d been dependent on her to care for everything it took to run a home for many years. Fortunately my husband and I had talked about taking in one of our parents when and if the time came. We had both the room and the desire to do it. We knew it would be hard at times, but were convinced we would make it work.
We didn’t know how sick he was, how hard it would be, or how long it would last. The first surprise for both my husband and I was learning that he was schizophrenic and had been since 1947. It certainly explained a lot about his odd behavior over the years, but until the medical records arrived, no one in the family had ever mentioned the 13 years he’s spent in mental hospitals from 1947 to 1960. In addition to being mentally ill he developed dementia, Parkinson’s disease, congestive heart failure and dysphagia.
I did what I could to educate myself about the various diseases and how to help him have the best possible life as long as possible. It was harder than I ever thought it could be. I called it creative problem solving on the run. All day, every day and night was a challenge. I doubted myself so many times. Why couldn’t I figure this out? Why couldn’t I make him understand I loved him and wanted the best for him?
I often heard caregivers ask the same questions, express the same frustrations, and cry for help. “Why doesn’t someone write a book that tells people what it’s really like to care for someone with dementia at home?” I decided to write that book.
Confessions of an Imperfect Caregiver is the true story of one family coping with one of the most difficult, and fastest growing issues of our day. It’s raw and it’s real. I invite readers to cry, shout, despair and laugh with me as I did the best I could to save him from himself, while he did everything he could to convince everyone I was crazy and he could take of himself.
I had one patient for seven years, my father-in- law, and became fearless when taking doctors, nurses, and other health care providers to task to make sure he always got the care he needed.
After Rodger passed away, I decided to become a caregiver advocate and do all I can to support caregivers. I am now a caregiver support group leader, blogger and national speaker on issues dealing with Alzheimer’s and dementia.
Caregivers have thanked me for writing the book and expressing in vivid detail what it takes to be caregiver and the toll it takes on those who do it.
“Confessions of an Imperfect Caregiver perfectly encapsulates the human experience, not just the caregivers. When we live in a world of worry, stress, and self-doubt, where do we go to find the strength to go on? Bobbi’s retelling of her caregiving years unfold in a beautiful answer to the questions posed by sickness, health, care, and loss.” Alexandra Axel, Media Director, The Caregiver Space.
About the Author
Bobbi Carducci as 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.
"Brutally honest and written from the heart, Carducci’s intimate chronicle of caring for her father-in-law is a poignant story of strength, compassion, and humor that will linger with you long after you read the last page. Highly recommended for anyone caring for an elderly parent.” Jan Neuharth, author of the Hunt Country Suspense novels
Confessions of an Imperfect Caregiver is available on Amazon and through Open Books Press and her website www.bobbicarducci.com @BobbiCarducci2 @BobbiCarducci