From the AlzAuthors Blog: Meet Jane Mullins, author of "Finding the Light in Dementia, a Guide for Families, Friends and Caregivers"

By Jane Mullins Ph.D., from Cardiff, U.K.

I am a nurse who has worked with people who have dementia for over 25 years. This has included nursing in a care home where I have helped support people during their transition from home. This has included finding out about their life stories and getting to know them, working together in understanding their past, identifying their present needs and future wishes. 

I have also cared for people who have dementia in hospital and seen the impact that an admission can have on the person and their dementia. Here, I recognised the importance of involving families and keeping familiar meaningful objects with them when in unfamiliar places.

From the AlzAuthors Blog: Meet Susan Soesbe, author of "Bringing Mom Home: How Two Sisters Moved Their Mother Out of Assisted Living to Care For Her Under One Amazingly Large Roof"

By Susan Soesbe

How do you write an honest story about a real-life tragedy without being so tedious and somber that nobody wants to read it? This was my challenge in writing Bringing Mom Home: How Two Sisters Moved Their Mother Out of Assisted Living to Care For Her Under One Amazingly Large Roof.

When Mom was in her seventies, the idea that she had dementia sort of came and went, like back pain. My suspicions would flare up when she did something out of character, like purchase an expensive juicer, though she had not one shred of interest in healthy eating. But then she was still able to drive, email, and play Rummikub, a math game.

However, the dementia eventually became obvious. My sister and I convinced Mom to move to an assisted living facility, and then to a memory care unit. Even there, she was constantly in danger of falling. We were able to move her home to live with our two families. Hence, the title of my book.

I started to write then so I could share the knowledge I was gaining. I had thought Alzheimer’s Disease was just memory loss. Now I was learning it involved a loss of executive function, personality changes, hallucinations, and loss of bladder and bowel control. If I had known this before, I thought, I would have shown more concern for caregivers. I would have been better prepared myself.

I knew my story would benefit others, but how could I make it readable?

From the AlzAuthors Blog: Martin Schreiber and "My Two Elaines - Learning, Coping and Surviving as an Alzheimer's Caregiver"

By Martin J. Schreiber

If there’s one thing worse than Alzheimer’s, it’s ignorance of the disease.

Count me among those who were ignorant. Over the past decade, I’ve learned more about Alzheimer’s than I ever thought was possible. To be sure, I’m no expert on the science of the brain. But I know what Alzheimer’s did to my heart – it broke it when it struck my wife Elaine some 14 years ago.

I’m striking back against Alzheimer’s by speaking out, to wipe out some of that ignorance of the disease. My book, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver, came out in November 2016. Loved ones of those with dementia say it resonates with them. I’ve done more than 150 presentations in four states, with lots more coming up. I’m energized by these audiences.

Following a recent event in Wisconsin, a man who is a caregiver for his wife with dementia approached. He wanted to thank me for writing the book. 

“It turned my life around,” he told me, tears welling in his eyes – and soon in mine, too. “You saved me.”

From the AlzAuthors Blog: Mary Edwards Olson and her Memoir "When the Sun Shines Through"

By Mary Edwards-Olson

I wrote When the Sun Shines Through because of my personal journey. I was a caregiver for my mother and watched first hand as Alzheimer's slowly stole her from us.

My mother, Elizabeth Edwards, lost her fight with Alzheimer's on October 23, 2017.

Caring for my mother was a roller coaster of emotions. You go from crying so hard that every inch of your body aches, to being so overwhelmed with joy when a piece of them perks through the mask of Alzheimer's. I was ignorant to this disease and its cruelty until I watched it slowly take my mother, piece by piece. It was hard as a caretaker to understand that Mom wasn't Mom anymore in terms of behavior. There were days I thought she was being lazy or difficult on purpose and I would get so upset. It breaks my heart I ever thought that. It was the disease, in those moments. Please remember it's the disease. Your loved one is in there, scared and confused. Show compassion and remember to take time for yourself. As a caregiver, we often take a back seat, but remember your loved one needs you to be happy, and emotionally and physically healthy. They may not express it but they understand.

From the AlzAuthors Blog: Vicki Kaufmann, Author of "Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion"

By Vicki Kaufmann, MA, MPSt

“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.

From the AlzAuthors Blog: Linda Brendle, Author of "A Long and Winding Road: A Caregiver's Tale of Life, Love, and Chaos"

The Accidental Author 

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 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 very 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.

From the AlzAuthors Blog: Joy Johnston, Author of "The Reluctant Caregiver"

By Joy Johnston

Not everyone is born a natural caregiver.

Unlike some caregivers who can draw upon their experience as a parent or time spent taking care of siblings when they were younger, I had no such reservoir of caregiving knowledge when my parents fell ill. An only child who lived 1,300 miles away from my parents, my father began showing signs of dementia while I was in my mid-thirties. Assuming the role of long-distance caregiver, I helped my mother by paying bills, sending supplies, and researching care options.

It was not until six months after my father's death, when my mother suddenly fell ill and was diagnosed with colon cancer, that I became a primary caregiver. I was woefully unprepared and frankly, reluctant to step into the role. My mother required emergency surgery and faced a lengthy recovery. I ended up quitting my job and temporarily moving to New Mexico to care for her. What followed was a crash course in caregiving, with all the ups and downs that comes with the territory, like the most terrifying roller coaster in the world. (I've always hated roller coasters.)

From the AlzAuthors Blog: Linda Jenkins and "To Helen with Love, A Memoir of a Daughter’s Caregiving Journey"

By Linda Jenkins

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.

From the AlzAuthors Blog: S.R. Karfelt, author of Nobody Told Me - Love in the Time of Dementia

By S. R. Karfelt

Writing about memory loss wasn’t something I’d planned to do. I’m a fiction writer. But when my mother-in-law could no longer live on her own she moved in with me and my husband, her son.

That same husband and son had to go work in Asia soon after she arrived, leaving me alone with Gummy for a short but difficult while. His parting words were, “Do whatever it takes to survive it.”

What do writers do to survive? They write.

Even then I didn’t plan to write a book. I had my next fiction book lined up. My grand plan was to get Gummy settled, on medication, and used to her life here. Then I’d get back to writing. I’d blocked off a couple months to accomplish this.

Is it even possible to get someone used to losing their memory? I was so young and naïve last year. Gummy couldn’t remember where she was or why. She packed to go and asked questions non-stop until she’d drop from exhaustion, and later wake up panicked and deep into sundowning in the middle of the night.

At some point I wrote a desperate post on Facebook. The tsunami of support that came from others who were going through the same thing, or had, surprised me. It helped knowing I wasn’t alone. I continued writing about Gummy privately. Eventually I told my publisher the expected book wasn’t going to happen. I could barely take the time to go into the bathroom alone, let alone write.

       Saffi? Saffi? Where’d you go?

             I’m in the shower, Gummy! I’ll be right out!

       Hello? Is anybody here?

From the AlzAuthors Blog: Don Wendorf, and Caregiver Carols - A Musical, Emotional Memoir

By Don Wendorf

I wrote CAREGIVER CAROLS: A Musical, Emotional Memoir to cope with my own emotional struggles as a caregiver for my late wife Susan with her strokes and vascular dementia, and to help other caregivers deal with their feelings. I wanted them to see that their emotions, while often complex, intense, or unpleasant were normal; to know they were not alone; to encourage them to ask for even more help than they thought they needed; and to suggest very practical things for them to try to manage their feelings better. I told my/our story and shared a wide range of my experiences and emotions, including some of the hardest and least discussed, particularly anger, guilt, shame, sexuality (gasp), and grief. One selection even talks about my wishing she might die, which she actually prayed to do. I don’t imagine I’m the only one who ever fantasized about that. Despite being a psychotherapist myself and “knowing all about this,” I got massive burnout and I didn’t want anyone else to go through that.

I wrote the book in a combination of regular prose and song lyrics/rhyming verse to make these difficult, scary, often painful reflections or topics more easily absorbed, processed, retained, recalled and used. I hoped the humorous, artistic, metaphorical, creative, entertaining format would help people deal with their own “stuff,” but I also found that the creative, expressive arts may be as helpful to caregivers as they have been increasingly found to be with persons living with dementia.

AlzAuthors: World Alzheimer's Month eBook Sale & Giveaway!

September is World Alzheimer’s Month, the international campaign by Alzheimer's Disease International (ADI) to raise awareness and challenge the stigma that surrounds Alzheimer's and other dementias. In recognition of this event, AlzAuthors has put together an eBook sale and giveaway!

Starting today through September 30th you can take advantage of this excellent opportunity to check out some of our books at reduced prices, ranging from free to $2.99. We offer a variety of genres, including fiction, memoir, non-fiction, and children's literature. Many of our books are also available in paperback and audio, so check them out too.

Our books are written from a deep place of understanding, experience, knowledge, and love. May you find one – or two, or more! – to help guide you on your own dementia journey.

Visit the AlzAuthors eBook Sale & Giveaway

What I Read on My Summer Vacation

Summer is my favorite season, and my favorite activity during summer is catching up on my reading. This time, I have an extra large stack of books to get through because I picked up 25 additional titles at Book Con, some of my favorite authors recently published, and a number of titles about Alzheimer's and dementia are on my list because I'm an administrator for the AlzAuthors website. Here I'll share a few of the books that made me think, made me laugh, and /or made me wish that I had written them. 

AlzAuthors: Suzka Collins, 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.

AlzAuthors: Peggy Bushy and Lewy, Mom and Me:A Caregiver's Story

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.

AlzAuthors Alzheimer's and Brain Awareness Month eBook Sale!

AlzAuthors was founded in 2016 by myself and three other daughters of dementia who met over the internet because of our books. We formed a friendship and a mission to create a space where caregivers can find solid support, and those who share their stories can find the proper audience. I'm proud of our work and how we've grown from a 30-day awareness mission in June of 2016, to a weekly blog showcasing books and blogs about Alz and related dementias, a bookstore, Facebook group, and active Twitter presence.

You may have heard that June is Alzheimer's and Brain Awareness Month, and today, June 21st, is The Longest Day. Sponsored by the Alzheimer's Association, these important events increase awareness of Alzheimer's, related dementias, and brain health. In recognition of these events, AlzAuthors has put together our very first eBook sale!

Starting June 21 through June 28, you can take advantage of this excellent opportunity to check out some of our books at reduced prices, ranging from 2.99 to free. We offer a variety of genres, from fiction, memoir, and non-fiction. Many of our books are also available in paperback and audio, so check them out too.

Our books are written from a deep place of understanding, experience, knowledge, and love. May you find one - or two, or three! - to help guide you on your own dementia journey.

Enter the AlzAuthors eBook Sale!

Meet Cynthia Hamilton, author of "Finding Ruth"

By Cynthia Hamilton

It took a life-altering crisis to make me realize that despite having known my mom for 50+ years, I didn’t know who she was as a person in her own right. I had firsthand knowledge of many of her trials and heartaches, but that only gave me a one-sided view of what her life had been like, with many gaps.

Nothing I knew about her had prepared me for what I found prior to her move into a nursing home. In the process of rummaging through eight decades of possessions, I came across an old photo album under her bed. As I opened it, an insert slid out, revealing a photo taken when she was 19 years old. The sight of her hamming it up for the photographer, so happy and confident, completely knocked me for a loop. Who was this person? Why didn’t I know anything about that time in her life? How could I know so little about my own mother?

AlzAuthors: Elaine Pereira, I Will Never Forget

By Elaine Pereira, MA OTR/L CDC DP

My mother’s was a story that needed to be told. She was a kind, brilliant and talented woman all of my life until dementia took hold distorting her persona and leaving an agitated, bewildered and compromised person in its wake.

In what would be her final months, as my mother continued her rapid descent into Alzheimer’s clutches, her once strong voice faded away. Our quiet visits together afforded me the opportunity to reflect on the vivacious life that defined her. I was determined to remember her as the strong, courageous and gifted lady who was my mom.I Will Never Forget was written in tribute not only to my mother but to everyone going through this struggle. Too many sons and daughters have witnessed their parents’ very essence evaporate as their memories are chipped and chiseled away. My mother’s story is everyone’s story. I simply chose to put in black and white the colorful stories of her life for all to remember.

I was not a full-time caregiver for my mother. She had made it crystal clear that she never wanted to live with her “kids” if she could no longer care for herself, even when her “kids” were whittled down to one - just me - after the premature deaths of both of my brothers.

Regardless of whether you’re caring for a loved one at home or allocating daily care to an assisted living facility, Alzheimer’s leaves a permanent mark on everyone. You are forever changed, no matter how you experience the journey.

AlzAuthors: Gela-Marie Williams, author of Green Vanilla Tea

By Gela-Marie Williams

I remember the evening my youngest son came to me in my bedroom holding a rather dog-eared manuscript of Green Vanilla Tea. I had worked on this family story with my two boys over a few years. I’m not sure how many, exactly. We simply worked on it until we’d tussled with it enough and one day it was done. My son leaned against the doorframe, favouring one leg as his dad would have done. I remember noticing how much space he took up in the doorway. No longer the boy he was when this story all began, but a strapping 19-year-old. He was the age I was when I met my husband, the man readers would later get to know as Dominic. I thought he might ask what was for dinner. Like most teenagers, he was perpetually hungry and ate more than I thought humanly possible. But he said,

“Thanks Mom, I think this will be the most powerful story I’ll be able to share with my life partner one day.”

I leaned back against my pillows and thought, Wow, we did it; my job is done.

The manuscript my son held in his arms is a story I wrote that followed our family journey though Dominic’s illness with Younger Onset Dementia and ALS/MND. Dom died in 2007 aged 45. There is heartache and there is humour. But at its core, Green Vanilla Tea is a love story. A story of love and life in a world where so much was amiss, written as an offering of hope to my two [then] teenage sons.

My writing started out as a spontaneous, creative response to grief, with no thoughts of placing this part of our life on display. Amidst the demands of caring for Dom and parenting my sons, writing kept me anchored. It held still the paradox, where life was both empty and full, together and falling apart and the simplest things were the most extraordinary. I wrote of love and loss and finding hope in inexplicable times.

After Dom died, I collated my musings together for the boys. Dementia in a young person is a slippery beast. So much of what they experienced felt invisible and without words. They asked me to write our story. To “try and capture it somehow” and “give it form.” We had no intention to publish. It was enough that my writing provided a wonderful launching pad for rich conversations with my sons.

AlzAuthors: Cynthia Toney, author of 10 Steps to Girlfriend Status

By Cynthia Toney

Alzheimer’s is a cruel prison that held my dear mother-in-law in chains for approximately three years, taking her freedom and her mind until it finally took her body. I understood little about the disease before watching a once brilliant, witty, and loving lady wither before my eyes.

I was shocked by how quickly my mother-in-law forgot how to communicate with me and then forgot who I was. We’d had so many interests in common that our conversations had always been easy. I missed her intelligence and laughter, and she no longer spoke the customary “I love you” in parting. But if I was saddened and worried by her condition, my husband and his brother were devastated. They had to learn to manage the life of the matriarch who’d always done the managing for our family and had handled it as well as she had her jobs as a bank vice-president and a high-level position in state government.

The emotional toll that this reversal of fortune for her had on the rest of us needed to be fully expressed. I decided to write about Alzheimer’s and its effects on both victim and family by using one of the characters in my fiction series for teen girls.

Mrs. Villaturo first appears in book one, 8 Notes to a Nobody. She is the healthy, elderly next-door neighbor of my main character, Wendy, who is a young teenager. Mrs. V (as Wendy calls her) becomes a surrogate grandmother to the girl, who grows to love her neighbor. In book two, 10 Steps to Girlfriend Status, Wendy is in high school, is forming a romantic relationship, and is becoming part of a blended family. During the changes all this brings, she discovers something wrong with her beloved Mrs. V.

AlzAuthors: Marie Marley, author of Come Back Early Today - A Memoir of Love, Alzheimer’s and Joy

By Marie Marley

I took care of my beloved Romanian 30-year life partner when he developed Alzheimer’s. The disease began very slowly, and for the longest time I just couldn’t understand the changes he’d been displaying. He’d become short-tempered, often confused and sometimes unusually forgetful.

Then one night he was found driving on the wrong side of the road. Realizing what he’d done, he pulled over and stopped. A wonderful lady pulled up behind him and asked if he needed help. Seeing his bewilderment, she gave him a ride home, and he told her to call me. That’s when I began to wonder if he might be getting Alzheimer’s.

I took care of him for four years. When he could no longer live safely at home, I was regretfully forced to place him in a nursing home. It was an excellent facility dedicated exclusively to the care of people with Alzheimer’s and other dementias.

He lived there for nearly three years before passing away. During that time, I often couldn’t reach him. Then one day I was in Walgreen’s and saw an aisle with stuffed animals. With great hesitation, I decided to buy him one. It was a tiny chick that peeped when you pushed a button on its chest. I was afraid my brilliant former lawyer and subsequent professor of French would be insulted that I’d taken him a child’s toy.

Quite to the contrary, he loved it, and immediately began caressing and kissing it. He named it “The Little Yellow One.” Then we began playing little games with it. We laughed like a mother playing with her small child. After that I took him more stuffed animals. He loved each more than the one before. I realized I’d made him magnificently happy. What’s more, I’d discovered a way to interact with him that was meaningful to us both.