Alzheimer's Daughter

The Story

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.

Wednesday, July 1, 2020

Reverberations, Book of Personal Essays by Marion Agnew





On a summer day in 1992, my mother told how, more than forty years earlier, my then-baby brother broke his leg. Then she told it again. She told the story four times in one hour, in fact.

But my father and I didn’t talk about it. We couldn’t—not yet, for many reasons.
  • Because my mother, a retired mathematics professor who’d earned her PhD when few women even attended undergraduate school, had always identified with her intellect, her ambition, her drive. Without that, who would she be?
  • Because my father’s ability to cope in the day-to-day depended on denying that anything was wrong.
  • But mostly, because of stigma. 
People in my parents’ community were uncomfortable with dementia, which increased my father’s embarrassment and isolation, and my mother’s loneliness.

In 1997, my mother’s family physician finally diagnosed Mom with “probable Alzheimer’s.” Even then, it took months before eventually—carefully, gently, fearfully—my father and I began talking about twin taboo subjects: health and money.

I lived 800 miles away—close enough to visit my parents every couple of months and be free with unsolicited advice, but too far to be of actual help in their daily lives. Each time I left, I wanted to tell myself, “It’s not so bad.” I needed to soothe my guilt at leaving them. But I knew better.

After Mom’s diagnosis, I wrote about what I’d seen and about the disease itself. I tried to make concrete the general words to describe symptoms like “confusion” and “agitation,” by describing my Mom and our interactions.

After her death, I gained some distance from Alzheimer’s. I drew closer to my father. I began to see the time of her illness as only one part of their lives.

And because I was a professional writer, I kept writing. I tried for years to find the right format in which to tell the story—Mom’s, mine, our family’s—and what I’d learned.

At last, I found personal essays, a form that allowed me to write both “in the moment” of Mom’s illness and in my years-later “now,” with the hard-won wisdom I’d acquired as time passed. I still write, often about the sometimes-surprising moments when I miss both of my parents again, years after their deaths. Over the years, I published essays in literary journals. Some received recognition.

At last, I felt ready to rejoin the conversation around Alzheimer’s and other dementias. Signature Editions released my essay collection, Reverberations: a Daughter’s Meditations on Alzheimer’s, in October of 2019.

I hope readers see that people with dementia and their care partners remain people—unique individuals, with lives that include joys both big and small. I hope readers understand that while a family’s emotions can include guilt, anger, and embarrassment, they can also include love.

I hope that somewhere, a reader gives my book to a friend, and they start a conversation. Because talking about Alzheimer’s and dementia is how we create a more understanding community for all of us.

Marion Agnew lives and writes in an office in the municipality of Shuniah in northwestern Ontario, overlooking Lake Superior.

Instagram: marionagnew

Twitter: @shuniahwriter

Wednesday, June 10, 2020

Michelle Spray Writes a Helpful Children's Book: Waiting for the Mailman

By Michelle Spray

Waiting for the Mailman is a wonderfully written and much-needed children’s book about Alzheimer’s. It details the progression from dementia in easy language from the point of view of Niki, whose Grandma Louise lived with them. Niki loved to have cookie dunking contests with Grandma to see how long the cookie stayed in the milk without crumbling! “Our very favorite thing to do was to laugh and tell stories together while sitting in the kitchen. She taught me the importance of staying strong and being true to my authentic self. … Sometimes Grandma would look all over the house for something that she had misplaced. I lose stuff all the time, but for some reason when Grandma couldn’t find something she would get really upset. I think it was because she was losing things more and more. One day, Grandma even lost herself. The police found her and brought her back home safely. She peeked in the doorway but still looked confused … Grandma loved to wait for the mailman, even if he'd already delivered the mail! She waited and waited and waited. Every time she walked to the mailbox she wore her winter coat and hat, even in the hot summer.”

Niki shares stories about Grandma; the time she left the stove on and the house filled with smoke, how she stopped wanting to play cards and began repeat phrases. The day Grandma didn’t recognize her, she tried not to cry. “I soon stopped trying to make her know me because it made her upset. Instead, I smiled, and tried to make her smile with a song or a poem that she might remember from her childhood. In time, she forgot a lot more things, but that's okay because I knew to expect it.”

To read the remainder of Michelle's post go to AlzAuthors: https://alzauthors.com/2020/06/09/michelle-spray-waiting-for-mail-man/

Tuesday, June 2, 2020



AlzAuthors celebrates 5 years of connecting dementia resources with caregivers this month. I’ve been honored to be a part of the management team from the beginning and am truly amazed both by how this organization has grown, and what it has accomplished. We are now almost 250 authors strong. Learn more about what we’re up to at AlzAuthors here: 
https://alzauthors.com/2020/06/01/5-years-of-caring/



Tuesday, May 26, 2020

Loretta Woodward Veney Updates Her Memoir, "Being My Mom’s Mom"



Being My Mom’s Mom – 2nd Edition – December 2019

Updating Being My Mom’s Mom at the end of 2019 seemed like the right thing to do. When the first edition was published in 2013, it covered the first 7 years of our journey after Mom’s dementia diagnosis in 2006. I wrote the book to help families be more prepared for daily life after the diagnosis so they could avoid some of the mistakes I made. The first edition also provided written history of my amazing Mom pre-dementia and I wanted others to know exactly who she was before the disease slowly began to change the person she was.

The first edition focused on forgiveness, patience, preparation, heartbreak, humor and hope and has been the topics of the content of the more than 300 presentations I’ve given around the country since 2014.

The greatest lesson I learned from the early years after Mom’s diagnosis was the necessity of having all the legal and medical documents together for your loved one and I wanted to ensure that I stressed that in the book. I also wanted to convey that every day is different with this disease, but there is a lot of joy as well if we find the strength to embrace it.

There were many changes in our lives from 2013 to 2019, and while I cover them fully in my presentations, the book didn’t address those changes or how we coped with them.

The second edition includes a new chapter added to the end of the first edition instead of starting from scratch, because I wanted the story to unfold just as it had before the death of my husband and Mom’s move from one group home to another. I wanted readers to know who Tim was, what our married life was like, and especially how much he loved Mom and helped me with her prior to his death.
Read the remainder of Loretta's post on AlzAuthors.com

Wednesday, April 1, 2020

Meet Trish Laub, author of "A Most Meaningful Life"



By Trish Laub

I made a promise to myself that reflected the love of a youngest daughter for the dad that was always there for her. I was told that my dad had been diagnosed with Alzheimer’s in 2002. My mom didn’t tell my two sisters and me for several years. She was trying to protect us and protect her husband and best friend to whom she was married for 69 years. When I finally learned that dad was living with Alzheimer’s, I vowed to maintain his dignity, quality of life and safety until the end. I always knew that I wanted to take care of my parents should they ever need it, but the Alzheimer’s diagnosis added an unanticipated complexity. Just 48 hours after my husband and I moved across the country to be near my parents, my father experienced a medical crisis, setting into motion a two and one-half year journey of care during which my mom was diagnosed with stage-four cancer. I managed the care team and my parents’ medical care, and was a hands-on caregiver on the weekly schedule. My sisters and I delivered the dignified care and end of life our parents desired.

After both of my parents passed in 2014, I was exhausted. At first I needed some time to re-energize and regroup.  Although I had many requests and much encouragement to write about my experience, for the next three years I tried to talk myself out of doing it. I knew that I had amassed an abundance of knowledge from my experience and could help others go through the process thriving instead of surviving. During that time, I was presented more opportunities to both provide care and to teach others how to care for their loved ones. In the end, I could not make myself walk away from the personal mandate to write the books and offer the services that so many caregivers need.

The result was the Comfort in their Journey three-book series that I wish had been available to me during my journey. Rather than narratives, the books weave my story into the quickly accessed nuts-and-bolts caregiving information, tips and resources. The books offer caregivers the opportunity to thrive throughout a process that is often traumatic and stressful and allows little time to research before making critical decisions. The books enable family members and other caregivers the opportunity to know the options and to make informed decisions -- to think and then to take action.

A Most Meaningful Life, my dad and Alzheimer’s is the story of my family’s commitment to ensure a life of quality, dignity and potential for my dad. It was written to replace the unfounded stigma around Alzheimer’s with facts and an understanding of the disease, and to help others see that even with Alzheimer’s, the possibilities are limitless and a meaningful life is possible. Additionally, this book offers my family’s philosophy, goal and strategy; our successes and failures; and special considerations necessary for successful caregiving.

Understanding the nuances of providing dignified care, and the necessary preparation for and process of the end of life  is important for all caregivers, it is even more so for those caring for a loved one living with dementia as their loved one’s ability to self-advocate is diminished over the course of the disease.

A Most Meaningful Life provides a guide to dementia care. The other two books in the series provide guidance for caregivers and for individuals who are facing a life-limiting or life-altering medical condition. Those books are Through the Rabbit Holenavigating the maze of providing care - a quick guide to care options and decisions, and Peaceful Endings, guiding the walk to the end of life and beyond – steps to take before and after.

I have found peace knowing that sharing my experience is helping others thrive on their caregiving journey. Readers have found comfort in having these guides to create a plan for providing dignified care, for carrying out a loved one’s end of life wishes, and in having easily accessible answers to the many questions that may arise during the journey. Most important to me has been feedback from readers who say that A Most Meaningful Life has helped to allay their fears and dispel the stigma regarding Alzheimer’s, allowing them to understand the possibilities and empowering them to be more present and successful caregivers.

Below are the links to my social media:
Website:  wwwTrishLaub.com.
                 https://www.facebook.com/
                 TrishLaubComfortInTheirJourney
Twitter:        TrishLaubAuthor
Instagram:         TrishLaubAuthor

Wednesday, March 18, 2020

Meet Judith Allen Shone author of "Is There Any Ice Cream?"


By Judith Shone



Is There Any Ice Cream?

“I believe it was overcoming the fears that gave me the strength and wisdom to recognize I would be ‘strong enough’ to be a caregiver. I was not trained, but I evolved.”

My Love and I sat in his hospital room, celebrating our twenty-fourth anniversary, playing Go-Fish. Each other’s third partner, we had begun growing old gracefully together. And then our lives were turned topsy-turvy when My Love was diagnosed with COPD, Alzheimer’s disease, vascular dementia, and anxiety attacks, colon cancer and, most recently, elevated calcium, all within four years.

I never asked, What if My Love becomes ill and I, alone, have to become the one to take care of him as his solo caregiver...not in my seventies- not when we were beginning to enjoy retirement!
But that is exactly what happened.

A tenderly written memoir, Is There Any Ice Cream? is a collection of stories of an overwhelmed caregiver who shares the demands and chaos, the joys and despair of the caregiving world. Those who want to learn of a caregiver’s life will accompany My Love and me by way of stories that reveal how heartbreaking, and yet how ultimately beautiful, one caregiving life can be.

Since publication of Is There Any Ice Cream? many people who had no idea what a life of caregiving might be like have offered comments of astonishment that our story could be told with both heartwarming insight and gentle humor. Their disbelief convinced me these stories were an eye-opener for some and that the caregiving life had to be unveiled. I realized those who wanted to learn needed references that reflected the devastating effects of memory loss, but from an emotional, experiencial approach.

One friend asked if I had written a love story. I did not think so at the outset, but as I re-read my journey chapters, they suggested an answer. I found a story of love: a love for My Love, for those who surrounded us, and a love for humanity. It is hard to think of this story without being filled with the love shared with My Love and me by so many people.

Known for changing attitudes, reducing sadness and bringing smiles to faces of "children of all ages," ice cream is more than a response to a craving. It has been reported to alter moods and shift attention in some with memory loss. Thus, the craving for ice cream became an important part of the story of My Love, not just a title reference.

Now, almost eight years in, I have learned two things:
(1) caregiving brings out the heart and soul of one’s life;
(2) caregivers do not have to be alone and without support.


By experiencing intimate moments, by becoming aware and witnessing our unique life together, readers will begin to appreciate the need for encouragement. I hope it will be through understanding a caregiver’s life, by recognizing the special needs and familiar emotions, that stigmas associated with dementia will be erased and future advocates will feel comfortable in offering support to someone they know.

This book will be followed by Part Two, Did You Hide the Cookies? in 2020.

BIO:

Judith Allen Shone unexpectedly became a caregiver, a
commitment she fulfills to this day. Her story reveals reflective moments as  she, alone, cared for her loved one with Alzheimer’s and other illnesses. Using creative ingenuity, as well as an initiative born out of a need to share experiences with others, she was compelled to unveil the role of caregiver for those who wanted to learn.

Shone graduated with a BA in Art from Colorado State University in 1965. Before being a caregiver, this former website designer, writer and art teacher spent over forty-two years in sales, advertising and marketing for exhibit firms and the corporate world in the US and Canada.

She has two grown children, two grandchildren and currently lives with her love and their little dog in Ontario, Canada.

VISIT:
The book website: https://www.CaregiverAlzheimerStory.com
Twitter: Judith Allen Shone @CaregiverStory
Instagram: caregiverstory Judith Allen Shone Author Alz
Facebook: Judith Allen Shone - author
Goodreads: Judith Allen Shone
Blog: Accepting the Gift of Caregiving, https://acceptingthegiftofcaregiving.blogspot.com 

Email: info@CaregiverAlzheimerStory.com

Wednesday, January 15, 2020

Susan G. Miller, a spouse caring for her husband with Early Onset, writes My Life Rearranged

Please read this week's AlzAuthors post by Susan G. Miller. She writes a moving book about caregiving for her husband with early-onset Alzheimer's in  her memoir "My Life Rearranged."
Susan writes:

"When my husband passed, I took a hiatus from both writing and Alzheimer’s. Later on, at the urging of friends and family, and especially my granddaughter, who called it “my purpose,” I returned to writing. I knew I wanted to achieve three things. First, I wanted to support caregivers who are often forgotten, who are the second or silent victims, and who can become isolated by the nature and duration of the disease. As a part of that support, I wanted to give voice to what many givers can’t or are afraid or say."

Read the entire post here.

Wednesday, January 8, 2020

New Children's Book by Mary Edwards-Olson; Grandpa, Is That You?

I'm so happy to share this new children's book by Mary Edwards-Olson featured on AlzAuthors.com this week, Grandpa, Is that You? 

Mary writes: 
"My newest book, Grandpa, Is That You?, is another children’s book about the changes a loved one will go through when facing Alzheimer’s. This book differs from my first book, When The Sun Shines Through, in that instead of focusing on the good moments that shine through, it encourages the reader to continue to include their loved one in activities and social events no matter the changes that are taking effect. I find it so important to encourage children to ask questions, interact, and feel comfortable when Alzheimer’s becomes part of their loved one’s life."

Read the entire post here.