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

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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 Tracie Bevers, Author of "Dancing Around the Chaos," an Alzheimer's Love Story

By Tracie Bevers

In the early days of the disease, when I heard stories of others in later stages, I actually thought… "Well, I know that will never happen." Little did I know what the future held; I was very naïve. Many times along the way, I would remember something a friend had shared with me two or three years prior, and reality would settle in. We were there; those things were happening. It was hard, no doubt, but at least I knew others had been down this road.

As we journeyed through Alzheimer's with Mom and Dad, I regularly took notes, sent emails to our kids, took pictures…that sort of thing. Somewhere along the way, I decided that one day I could write a book with all the notes I was taking. I had become passionate about sharing the story and encouraging others, and I wanted to share our journey with people who needed to hear about it.

My reasons for telling the story are:

1.) To help others beginning the journey – to share information that may be helpful to them, even if it is hard to tell…and hard to hear.

2.) To make it clear to those who don’t understand what Alz is…it is a cruel disease of the brain affecting 5.7 million Americans. According to the Alzheimer's Association, that number could rise to 14 million by 2050.

3.) To share a sweet story of two people who loved each other to the end. Their journey made it possible for others to witness a true, one-of-a kind love story and raised the bar for many.

It's not an easy story to tell, but the truth is – Alzheimer's is not easy. If I didn't tell the real story, even the parts that make us uncomfortable, then I'm not sure any of my three goals would be accomplished. I have struggled…hoping others don't think I shared too many intimate details, but mostly praying that Mom and Dad would approve. Now, I know that if they could hear the stories about how their journey is helping others, they would be pleased. 

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: 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: Vina Mogg Blogs about Life as an Alzheimer's Caregiver in "Seaglass Life"

By Vina Mogg

Not Alone

At a caregiver’s conference in Orlando I read a poem I had written during the opening assembly. Three things that happened there marked my writing journey.

A Florida State Representative, Mark Pfaford, key advocate for the Florida's Alzheimer's Disease Initiative (ADI), a bill that provides services to meet the needs of individuals and families affected by Alzheimer's disease, spoke to me after the reading, saying, “Your words give a face to the bill we support.”

An elderly man in the audience stood up and asked, “Where can I go for help? Who can help me care for my wife?”

Three women approached me in the lobby, telling me, “Your poem says exactly what I am feeling inside.”

Each cry isolated calls out the same question:

Am I alone?

Who will help me?

At that moment I asked myself, Who will be a voice for these people?

A voice deep inside me answered, “Here am I. Send me.”

From the AlzAuthors Blog: Barbara Ivey Blogs about Alzheimer's at "The Perfect Thing"

by Barbara Ivey

I never cared for my mother during her Alzheimer’s.

My Dad considered Mom’s care to be his duty as her husband. To Dad’s credit, he took full command of Mom’s care and served her with honor. 

Still, from the start, I knew there were ways I could contribute. My challenge was to figure out how to do so, from where I lived ninety miles away. Having had remarkable results using Lean in my consulting practice, I wondered how I could apply those principles to this situation. 

In Lean, processes can be improved when defects and other kinds of excess are identified. I set my mind to contributing in different ways and learning from the results.

Defects in the contributions I made were easy for my Dad to spot and point out. I overstayed my welcome several afternoons, unaware that Dad was clearing the decks before Mom began sundowning, and Dad exploded in anger. I pushed Dad to consider care options that he had yet to believe would benefit Mom, and Dad pushed back.

Each time, I improved on the defects that Dad identified, and tried again. Each time, the lessons I learned by identifying and addressing the defects were treasures. I learned that at times my father knew best. I learned that at times I knew best. I learned that Dad needed more patience, more compassion, more forgiveness, and more love during caregiving than I ever imagined. And I learned that at times I needed the same from my husband as he supported me in my unique brand of Caregiving.

The Perfect Thing blog is for you if you are in a similar place in your life. If you have a parent diagnosed with Alzheimer’s and a parent who is a Caregiver. In the blog, I share true stories of my family events during my Mom’s Alzheimer’s. I share my defects and what I learned by identifying and improving on them. I offer questions you can ask yourself to challenge your assumptions. I share things that improved my family’s journey, or that would have had they been available back then.

From the AlzAuthors Blog: Dr. David Davis and Joko Gilbert's "Support the Caregiver"

By Dr. David Davis and Joko Gilbert

As anyone who has walked in our shoes knows, there is a vast hole in the heart of a caregiver who, by a twist of fate, must tend to the needs of a Loved One suffering from Alzheimer’s. A hole that has the power to reshape and redefine who we are, for the rest of our lives. So, if we can approach this incredibly difficult challenge with the awareness that caregiving can be an opportunity for healing and growth, it allows us to step back from the precipice, where frustration, sadness and exhaustion await.

My sweet wife Linda was diagnosed with Early Onset Alzheimer’s in 2009 at the age of 51 years old. She survived for 7 years until her death last year. We are simply not given the tools and strategies to deal with the burden of caregiving and the toll it takes on every aspect of our lives. Having practiced chiropractic for  many years, I had a strong grasp on the principles and practices of healthy living, which was the fuel for my desire to come through this experience as a better version of myself, and to embrace the profound lessons as a caregiver, allowing me to more fully integrate into the world.

The thought that we can bring insight into the community of caregivers to ease our collective burden, as well as  provide inspiration and information to elevate the conversation from one of support to one of empowerment was the motivation to create our book, Support the Caregiver, 9 Strategies for turning the stress of ALZHEIMER’S CAREGIVING into Transformational Growth.

From the AlzAuthors Blog: Catherine Hodder. Esq. and "Estate Planning for the Sandwich Generation"

By Catherine Hodder, Esq.

I was a corporate and banking attorney when my father began experiencing mini-strokes and having difficulty with his memory. We didn’t know at the time he was embarking on a ten-year battle with Alzheimer’s disease. And what a battle it was.

Even though I was well versed in law and finance, it wasn’t until I faced my father’s illness that I understood the importance of having proper estate planning documents. The more I learned, the more I realized there is a great deal of information most people (even attorneys) don’t know.

From the AlzAuthors Blog: Meet Minna Packer, Blogger, Artist, and Filmmaker Living with Early-Onset Alzheimer's

By Minna Packer

I was a teacher, professor, artist, filmmaker, mother of two adult children, a wife, a former American Fulbright, and an active member of my community. I am now 63. I was diagnosed twice, first in September 2016 with a Spect scan, then again in January 2017, when another neurologist ordered an FDG Pet scan. Twice I was told the pattern of the images was that of Alzheimer's. The changes and symptoms of what appears to me to be a rapid form of the disease have been radical.

The neurologist recommended I retire. I pushed myself to continue through the term, and then resigned from my twenty year teaching career last summer. There was no recognition for my many years of service. People I had known for decades, friends and colleagues, disappeared.

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: 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: Our 3rd Anniversary and Alzheimer's and Brain Awareness Month Book Sale, Giveaway, and Raffle

It's Alzheimer’s and Brain Awareness Month, and AlzAuthors is celebrating its THIRD ANNIVERSARY! To celebrate this achievement, and in support of those living with Alzheimer's and other dementias, we have put together a book sale and giveaway, and a raffle, where one lucky winner will win a collection of 14 books from our authors.

Starting today through June 12 you can take advantage of this excellent opportunity to check out some of our books at reduced prices or FREE. We offer a variety of genres, from fiction, children's, memoir, and non-fiction in digital, paperback/hardback, and audiobooks. 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. And they make great gifts!

Visit AlzAuthors to check out the sale

To enter the raffle click here NOW!

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From the AlzAuthors Blog: Wendy Mitchell and "Somebody I Used to Know," on Living with Young Onset Dementia

By Wendy Mitchell

My name is Wendy Mitchell and I was diagnosed with Young Onset Dementia on the 31st July 2014. Who would have thought, on that day of diagnosis, over 3 years ago, that I would now be publishing a book, Somebody I Used to Know? But, on the other hand, why not?

When people hear the word dementia, they often think of the end stages. Well, it has to have a beginning and a middle and I’m someone heading for 4 years into living with the condition. We all had talents before a diagnosis, we don’t suddenly lose all those talents overnight the day we receive that diagnosis. We simply have to adapt them to use in different ways, and with support can often achieve something remarkable.

I wanted to write this book to show people how there is a life to be lived after a devastating diagnosis.

From the AlzAuthors Blog: Miki Klocke, Photographer and Author of "Alzheimer’s - Beyond Caregiving"

by Miki Klocke

My Mom was diagnosed with Alzheimer’s when she was 56 years old and still working two jobs. I was 33 and became her full-time caregiver. A few years into our journey, when Mom still occasionally had coherent moments, we talked about how difficult this path is and what limited resources there were to help us. There wasn’t anyone for us to talk to. During that conversation I promised Mom that I would share our story so that it could help others. I had no clue how I would accomplish that as I had a degree in photography and limited writing experience.

Many very overwhelming years passed where that promise remained a passing thought. During what would be Mom’s fourth year on hospice, I finally had the time to get serious about keeping my promise. I wrote, I shared, I rewrote many, many times. Photography has always been a part of my life, a lifeline, in fact, during the difficult years of caregiving. Through encouragement, I was led to combine my photography and writing into a visual and poetic expression of the trials and tribulations of caregiving that became Alzheimer’s: Beyond Caregiving.