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