From the AlzAuthors Blog: Meet Blogger Liza Nelson in "Alice in Memoryland"

By Liza Nelson

Before my husband was diagnosed, I had never heard of MCI. Before my husband was diagnosed, we teased each other about our failing memories. Yes, he was weirdly forgetful, but I was worse at names--speaking of which, on my blog Alice in Memoryland I have changed our names to Alice and Ralph at the request of my husband, a private man. He is a man with a sense of humor, a fondness for “The Honeymooners,” and a not infrequent desire to send me to the moon.

In the two years before my husband was diagnosed, as his memory and mood deteriorated, our joking with each other dried up. I was increasingly scared and embarrassed for my husband, more often angry with him. Our long marriage had been passionate, but often out of kilter as our two strong personalities engaged and clashed and re-engaged. Then, in our late fifties/early sixties, we seemed to have found a happy equilibrium and began enjoying our marriage in earnest. Now here was Ralph ruining everything with what I saw as his inattention and disinterest in me and our lives.

Then came the diagnosis: MCI verging on Early Alzheimer’s. It has frankly been a relief to have a name for the still subtle but profound transformation in Ralph’s mental process affecting his behavior and our relationship. For the last five years, since a spinal tap showed the plaque build-up that predicts Alzheimer’s, the changes have been incremental but profound as we wait for his condition to slide into full blown Alzheimer’s, a disease that will strike more and more couples in the next decades.

Every case of memory loss or dementia, or any irreversible illness for that matter, is different. I cannot speak for anyone else going through the early stages of memory loss with a spouse. But having read other blogs and several books, I wanted to do something slightly different in sharing our experience. Starting from the beginning of Ralph and my journey down the memory rabbit hole, I have tried to use both key moments and the smallest details of our life to explore my own reactions, as a caregiver and also as a woman and a wife. After all, marriage is a relationship based on choice and commitment, not to mention the emotions and intimacy of love that poets and philosophers still struggle to understand.

Although I have published in the past as a novelist, poet and journalist, writing the truth about my past and present life with Ralph has been an enormous challenge. While I write about the moments of joy—and those moments do still happen—I also write frankly about my darker moments and feeling. I am frequently afraid that I am going to disgust readers in exposing my selfishness, my lack of patience, my resentments, and sometimes my fury. Instead, whenever I think I may have gone too far, readers respond with enormous support. They seem to appreciate putting a truth they recognize into words, however unpretty it may be.

It’s an incredibly lonely business caring for someone on the Alzheimer’s spectrum. I am so glad I have found a community in which I can speak my truth and be heard, that in helping others I have found help in return.

About the Author

Liza Nelson, who writes her blog Alice in Memoryland  under the name Alice Cramdon, is the author of the novel Playing Botticelli and co-author of the James Beard nominated The Book of Feasts. She has worked as a journalist, dramaturge, real estate manager, wife and mother. She lives on a farm outside Newnan, Georgia.

Connect with Liza

Facebook

Author web page

Twitter: @LizaNelson1

@AliceMemoryLand

*  *  *

For more vetted blogs and books about Alzheimer's 

and dementia please visit the AlzAuthors Bookstore. 

From the AlzAuthors Blog: Alzheimer's and Dementia Caregiving Stories Vol. 1

AlzAuthors, the global community of authors writing about Alzheimer's and other dementias, is pleased to announce the publication of Alzheimer's and Dementia Caregiving Stories: 58 Authors Share their Inspiring Personal Experiences, Vol. 1. This poignant collection of stories grew out of the first year’s blog posts on AlzAuthors.com, from June 1, 2016 through May 31, 2017. Within its pages, you will be immersed in a world of writing about Alzheimer's and dementia.

The contributing authors have all been touched by Alzheimer’s and dementia, whether they live with the disease, are caregivers, or simply care. They reveal the story behind their books, what made them sit down and painstakingly share their story, and what they have gained from doing so.

This year-long project was made possible through the collaboration of seven women, all daughters of dementia. We have worked tirelessly to find and vet resources – memoir, novels, nonfiction, poetry, children's books, and blogs – to provide those living with dementia a friendly place to find the support and knowledge they need. We believe that by sharing our stories we open a dialogue that not only reduces the stigma surrounding a dementia diagnosis, but enlightens others to the reality that “I made it through. You can too.”

From the AlzAuthors Blog: Meet Terri Anderson, Blogger at "The Caregivers Depot"

Sometimes the Caregiving Journey Chooses You

By Terri Anderson

There are several ways where people find themselves as a caregiver. Some by choice, some not. I didn’t choose the caregiving life. It chose me, but God doesn’t give you anything you can’t handle. I thought to myself that I wasn’t up to the challenge, but I was. You see, my estranged father had a combination of Parkinson's and Alzheimer's and at the time, like many people, I wasn’t familiar with the disease.

My dad’s caregiver told me I “needed to see” my father. I remember him not knowing who I was and telling me that he had to “mow the grass.” As a child, my dad had the best-maintained yard in the neighborhood. His caregiver also said that he would “fight her,” and she could no longer care for him. He was placed in a nursing home and passed shortly thereafter. Knowing more about dementia now, I realize he was probably very combative. With nursing homes often short-staffed and nursing assistants overworked, I imagine they did not like caring for him.

From the AlzAuthors Blog: Frank Morelli and "No Sad Songs," a Young Adult Novel

By Frank Morelli

The concept for No Sad Songs had been building since my high school years. Back then, I was living a pretty charmed life. I went to school, played sports, and lived on a nice, suburban street. My life was about as “normal” as any teenage life could be.

Then we started noticing changes in my grandfather. Little things. Like, he’d forget to send birthday cards which he’d been known to send early, or he’d lose his keys or forget an appointment. Then it seemed like we went to sleep one night and woke up the next morning and my grandfather was this completely different person; one who needed assistance just to get through the daily tasks of living.

That assistance came in the form of my father, a man who worked full time and dedicated every other waking second to keeping my grandfather out of a nursing home. He did a good job of masking the toll it was taking on him, but he could never hide it from me. And although I never said it to him, I couldn’t get past the thought: what if it had been me? What would I have done if my father hadn’t been around to absorb the family responsibility before it ever spread in my direction? How would I have responded? Would I have survived?

From the AlzAuthors Blog: Blogger Heidi Hess Saxton

When the Unthinkable Becomes Inevitable: The Awful Dawn of Dementia

By Heidi Hess Saxton

Up to this point in my life, most of my blogging has been for parents of adopted, foster, or special needs children. Back in 2002, when my husband and I first became foster parents (and later adoptive parents), we really had no idea what we were in for. Which was probably a good thing, because I’m not sure we would have had the courage to move forward with it, had we known.

Now, as I’m entering the sixth month of caring for my mother, a dementia patient, I’m realizing that this is a lot like that. Lots of dirty laundry and temper tantrums, interspersed with moments of sweetness and delight. The tumultuous relationship we had during my teen years is gone. These past six months have been the sweetest, yet in many ways also the hardest – for both of us. But even the hard times are not without their rewards. For instance, when my daughter is being her snarky teenage self, she will do for her “Mammy” what she would never do in a million years for “Mean Old Mom.”

From the AlzAuthors Blog: Lisa Hirsch, author of "Letter to My Mom" and "My Mom My Hero"

by Lisa Hirsch

My mom has Alzheimer’s disease for 14 long years. Out of her suffering from this disease not only was my love for her transformed, she also became my hero. My love and compassion for her inspired me to share our journey.

What is amazing was that as a teenager I always wanted someone else’s mother to be mine, yet today I would never trade Mom for any other mother in the world. Each day she continues to touch my heart with a deep pure love. Through the years as the disease has progressed, I have watched Mom as her world has been disappearing. 

I often get questioned if she knows who I am. My answer is always the same. In my heart I know that she knows me. She may not say my name, yet when we are together we hold each other’s hands as if we were “young lovers” never wanting to let go. Our roles have reversed and with that my love for her has only grown.

From the AlzAuthors Blog: AlzAuthors Books are Setting Sail on a Dementia Friendly Alaskan Cruise!

During the week of September 15 - 22, 2018, a cruise specially designed for caregivers and their loved ones living with early-stage dementia is setting sail for Alaska, aboard Holland America's Signature-class cruise ship, MS Eurodam. AlzAuthors is thrilled to be supporting this wonderful trip!

This adventure is a unique CRUISE and CONFERENCE all in one. Families will sail round trip from Seattle, Washington with Elite Cruises and experience the beauty of Alaska with stops in Juneau, Glacier Bay, Sitka, Ketchikan, and Victoria, Canada.

Families will also experience diverse programming during an immersive conference that takes place onboard. This includes: Healing pain and grief through sharing their stories; adapting homes for dementia; creating care partnerships; nutritional care for caregivers and their loved ones; and much more. The cruise organizer, Kathy Shoaf, has put together a wide range of programming created for the complex daily lives of those living with dementia and their care partners. Plus, families will be spending time with others who share many of the same joys and sorrows, providing an opportunity to build new friendships too. Vacationers will return home with a renewed spirit, reconnected to joy and ease in their daily life.

From the AlzAuthors Blog: Meet Ann Balcom, Blogger and Author of "The Blue Velvet Drape - Dealing with Dementia"

By Anne F. Balcom

Mom was diagnosed with dementia in 2006. From the moment my parents told my sister and me the news I began losing sleep, a lot of sleep. The worry of “How were we going to get through this?” was eating me up. I would lie in bed at night for hours thinking and crying while my husband and kids were sleeping.

After many sleepless nights, I began getting out of bed in the middle of the night, going to the living room and jotting down my thoughts in a journal. I had so many thoughts and concerns that I could not write as fast as my thoughts were coming, so I began to type them. I would print out what I typed and tape it into my journal.

From the AlzAuthors Blog: Lisa Wingate, author of "Tending Roses"

By Lisa Wingate

The Gap

In every story I write, there are bits of real life, nibblets of sheer invention and sprinkles of serendipity. Readers often ask me which parts are which. Sometimes, it’s hard to dissect. Our way of looking at the world comes from our experiences in it. Our passions, the things we care about enough to examine, do as well. I’ve talked about caretaking and the Alzheimer’s journey quite a bit in my books. It’s an issue I know intimately. 

My first novel, Tending Roses, was in part walking that path with my grandmother. She was a storyteller, a keeper of stories. She could wear you out with her stories, but they always came with a lesson at the end. And then, the stories, one-by-one, piece-by-piece, faded away. The newest ones vanished first. It’s a bittersweet journey, the road of memory loss. My straight-laced, sometimes overbearing grandmother lost some of her inhibitions as she lost those stories. There were funny times, tender times, funny things she said that made us laugh until we cried.

From the AlzAuthors Blog: "Blue Hydrangeas, an Alzheimer's Love Story"

Writing a book about Alzheimer's was not something I planned to do when I sat down to write my first novel. It was a lifelong dream to one day write a book, but I had something else in mind when I started typing. That story was going nowhere when I met the captivating couple that inspired me to write Blue Hydrangeas, an Alzheimer's love story.

She was a beautiful 86-year old who was very confused when I, her case manager, met with her regarding her discharge plan from the hospital. "I'm so mixed up," she said multiple times, while her frail but dedicated husband sat beside her with a bemused smile. How had these two driven from Florida to New York on their own without any mishap? I wondered, as I reviewed her plan, which was to go to a nursing home for rehabilitation of a pelvic fracture. Seems she had a fall once they arrived at their New York home.

Their son was present and asked me to make sure his parents not leave the hospital without him the following day, as he planned to accompany them to the nursing home to take care of paperwork and business. I assured him that would not happen and left, spending the next few hours pondering what would happen if they left the hospital without their son. Where would they go? What would they do? These questions became the foundation of my novel. I ditched the story I was working on and started writing Blue Hydrangeas right away. Eighteen months later, I had a complete manuscript.

When a writer falls in love with her story and characters magic happens. I easily stepped into the shoes of Jack and Sara, inspired by the hundreds of couples I helped navigate through their dementia journeys in my role as nurse and case manager. I chose Cape Cod as the setting because it's my home in my heart, and built them a beautiful bed and breakfast called Blue Hydrangeas because of the gorgeous, fluffy blue flowers all over the Cape. I wrote and rewrote the moving scenes where Sara is at the worst of her Alzheimer's, and the best. At all times, I infused the story with the deep love and dedication Jack had for his wife, even though nine years of relentless caregiving was affecting his own health.

I put my heart into this story because it was the story of many others living with dementia, and it was important, imperative, that their stories be told in a way that readers could relate to. It was not meant to be a how-to guide filled with advice from a clinical professional. It's heartfelt and warm. Grab the tissues because you'll most likely shed a few tears. Readers have written to me personally and posted reviews on Amazon that the story has touched and inspired them, validated their own experiences, and in some cases provided relief. "This story is my story too," one wrote. Another said, "It was what I needed to let the grief release."

My personal background with the disease when I wrote the book included my patients and their families, as well as three beloved aunts who succumbed to the disease. I was an observer in these interactions, not responsible for any of these people or the important and heart-wrenching decisions that needed to be made on their behalf. But two and a half years after publication, I started living my own story when I became the legal, medical, and financial representative of my stepfather who was diagnosed with three types of dementia: frontotemporal lobe, vascular, and Alzheimer's. Although I had written a book about Alzheimer's, worked as a nurse and case manager, and knew more about the dementias than most people, I soon learned I didn’t know much at all. It was a steep learning curve fraught with frustration and feelings of inadequacy. Without the help of my friends at AlzAuthors I'm not sure I would have come through the experience intact.

I now work in college health where Alzheimer's and dementia are not the most pressing of my concerns, but my dedication to help educate others about these diseases and chip away at the stigma that surrounds them is stronger than ever. I am coordinating a fundraiser for my local Alzheimer's Association and an education program for the entire campus in June, and organizing a team for the Alzheimer's Walk in October. And I will continue to work with AlzAuthors, spotlighting books and blogs that are a source of wisdom, comfort, and support for the caregivers and others who need them.

Purchase Blue Hydrangeas 

For more vetted books on Alzheimer's 

and dementia visit the AlzAuthors Bookstore

From the AlzAuthors Blog: Paul Toolan and “The View from Memory Hill,” a Collection of Short Stories

By Paul Toolan

I live in an English rural village with a demographic weighted towards retirees. I’m one of them, I suppose.

There are young people too, but older bodies tend to fill the shops and the midday streets. I find myself reflecting on these sometimes solitary folk, about their past lives and the people they’ve known. Have they forgotten more than they care to remember – or just forgotten?

Thoughts on the 5th Birthday of My First Novel

Today I’m celebrating the 5th birthday of my first novel Blue Hydrangeas, an Alzheimer’s love story. These past five years have been full of opportunity, joy, and sadness as I learned how to be an independent author, an advocate for Alzheimer’s and dementia awareness, and a daughter of dementia.

Blue Hydrangeas is a story very precious to me as it’s a testament to the hundreds of families I helped navigate through the dementia journey during my nursing career. Little did I know, that three years after publication, I would start living my own story and become the medical, legal, and financial representative of my stepfather, who was diagnosed with three types of dementia. 

When I wrote the book, I thought I knew a lot about the caregiver's role in dementia care. Wrong! I was humbled by my new responsibilities and frustrated by the process of managing his care and business. I don't think anyone is ever ready to step into those shoes, and in spite of my years as a nurse and case manager, as well as the years of research that went into my book, I was still ill-prepared. Without the support and understanding of the fine people at AlzAuthors I would not have come through it intact.

From the AlzAuthors Blog: Angel Smits, Author of "When Reasoning No Longer Works"

By Angel Smits

How does a romance writer end up writing a book about Alzheimer’s care? That question nearly stumped me, not because I don’t know how—I lived it—but because it’s a lot bigger question than it seems.

I’ve always written, always played with words and stories—ever since I was a kid. And romance has long been one of my favorite genres to read as well as write. It was a natural path to write romance when I started to focus on my fiction.

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: Meg Foster and "7 Spiritual Steps for Caregivers - A Path to Meaning and Hope in Alzheimer’s & Dementia Caregiving"

By Meg Foster

7 Spiritual Steps – A Journal to Ease the Way

According to Alzheimer’s International, globally, there are nearly 44 million people that have Alzheimer’s or a related dementia.

In America alone, there are 5.3 million living with Alzheimer’s disease. 74% of caregivers of people with Alzheimer’s disease and other dementias reported that they were “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver.

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: Rick Lauber, Author of "Caregiver’s Guide for Canadians" and "The Successful Caregiver’s Guide"

By Rick Lauber

What motivates a writer to write a book? It could be to share a story, educate/help the reader, or to entertain. I wrote both my books to support readers, raise awareness for a growing issue, increase understanding, and also to personally cope.

Before becoming a twice-published book author, I was a former co-caregiver (working with my two sisters) for my own aging parents (Mom had Parkinson’s disease and Leukemia while Dad had Alzheimer’s disease). This was not a job I was expecting or prepared for and came with a steep learning curve. Not only did I face a quick education about eldercare, I also had to deal with the physical, mental, emotional, and financial impacts of caregiving – it is certainly challenging to helplessly watch your parents decline.

From the AlzAuthors Blog: Mary Ann Drummond Shares Grandma and Me – A Kid’s Guide for Alzheimer’s and Dementia

By Mary Ann Drummond 

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!

From the AlzAuthors Blog: Kathi Macias and "To the Moon and Back"

By Kathi Macias

As a fulltime writer/editor, I was blessed to be able to work at home and take care of my mother during her last few years of life. I was also blessed that even up until her death at the age of ninety, she was clear-minded. Sadly, so many others are not, making their caregiver’s job so much more difficult.

Though I didn’t have to deal with the issue of Alzheimer’s with either of my parents, I have countless friends and acquaintances who have done so in the past and are doing so even now. Because I write novels about current issues, it seemed a natural choice to base one of my books on the heart-rending topic of Alzheimer’s.

As I planned the book, I realized I wanted it to be about more than what the caregiver experienced; I wanted it to be told (primarily) from the viewpoint of the person actually experiencing Alzheimer’s. And so the idea for To the Moon and Back was born.

Rachel, my primary character, is in her late sixties and also in the early to mid-stages of Alzheimer’s. At times she is clear-headed, but more and more often she finds herself slipping into what she considers “the darkness,” where she begins to lose herself and the memories of a life she once considered happy and fulfilling.

From the AlzAuthors Blog: Bobbi Carducci, Author of "Confessions of an Imperfect Caregiver"

By Bobby Carducci

“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 the room and the desire to take someone in. We knew it would be hard at times but we 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 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.