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, January 25, 2017

Meet Cathie Borrie, author of The Long Hello-Memory, My Mother, and Me

In an almost Zen-like poetic form, my mother revealed the changing landscape of her mind:

“Listen, Cathie . . . a bird!" 
“What are the birds saying?’
“They’re chirping.”
“In a language?”
In their language. In an upside down language.”

She expressed an imaginative, artistic perspective many times during her experience of living with Alzheimer’s, and her comments were so often full of insight, humor, and an astonishingly poetic sensibility that I started to tape our conversations. Between us, a wondrously poetic dialogue developed, which I further illuminated with childhood memories of our family and my struggle to maintain a life outside caregiving responsibilities. 

I pursued the writing because I felt the world needed to hear her voice. Needed to know that people with Alzheimer’s are stigma-busters. She was not an empty shell, there was no long forgetting of her, she was not my long goodbye. 

“What do you think about the sky?”
“Oh, I don’t know about the sky . . . I don’t really know about it. 
But you have to wear gloves because it puts fingerprints on it--and you don’t want that.” 

Although I had two publishers who were interested in presenting The Long Hello as a work of fiction, 
the book took the form of a memoir--where would be the stigma-busting if it was a fictional account? It was her magical voice, weaving throughout the book, which I loved so dearly and wanted to share with others. Amidst many unhappy moments, as there are with any neurological chronic disease, she shone a much needed light on the experience with a hopeful perspective. 

The feedback on the book from noted writers and Alzheimer's experts like Maya Angelou and Lisa Genova has been rewarding, and I have been heart warmed by responses from the dementia community who welcome the verbatim voice of someone living with Alzheimer’s. The lyrical, poetic form of the work seems to appeal to people looking for something other than a “how-to” book. I think our story “shows” rather than “tells.” 

“Cathie was up here and she said to me, ‘Mum, I’m not going to offer to give them my shadow.’”
“Really? Where was this?”
“Somewhere . . . on the other side of here.”

Published in Canada with Simon & Schuster; USA: Skyhorse (Arcade)

Twitter: @cathieborrie

Wednesday, January 18, 2017

Meet Ann Campanella, author of Motherhood: Lost and Found

By Ann Campanella

In my early 30s, I learned that life can change direction when you least expect it. My husband Joel and I had moved from Houston to North Carolina in order to be closer to my parents. We both had successful careers – he as a businessman and me as a writer and editor. We were looking forward to building a barn for my horse Crimson and excited about starting a family. Life was humming along. Then I had my first miscarriage at the same time my mother began her slow spiral into Alzheimer’s.

Motherhood: Lost and Found tells the story of losing my mother while I was trying to become a mother and suffering through infertility. For almost a decade, I walked a painful path of questioning who my mother was becoming and if I would ever be a mother myself.

Most of my friends had children of their own and spent their days caring for them. I was thrust into the role of caretaker for my parents, while I yearned to focus on my own children. My mother had always been kind and compassionate, so it was a shock when she wasn’t able to comfort me in my pregnancy losses.

A long-time horsewoman, I was blessed to have a surrogate family of riding students – young girls who, like me, were in love with horses. I spent afternoons at the barn teaching lessons or riding Crimson.

In the beginning of her illness, my mother became angry and upset at her own confusion. I made regular trips across the state to spend time with and try to understand what was happening to her. I often came home to an empty house because my husband traveled frequently. 

Horses and writing were my solace. Seeing my mother’s anguish was heart wrenching. I wrote poems and poured my emotions into my journals. Writing provided a way for me to put some distance between myself and the grief I was feeling. When the pain was too much to bear, I would go to the barn. Some days, I could do no more than lean my head against my horse’s neck. Crimson would stand like a statue absorbing my emotions.

Amazingly, despite this decade of loss, a part of me felt more alive than I’d ever felt before. A sense of compassion for others and appreciation for each moment grew within me as I experienced the ragged edges of life – my mother’s illness and my own miscarriages. And I couldn’t help but be inspired by my mother’s will to live, communicate and love even as her faculties slipped away.

My faith, which had lain dormant for years, became a bigger part of my life. While the losses I experienced were heartbreaking, I also received incredible gifts of grace from my husband, family and friends, moments of intimate connection with my mother and the final miracle of a beautiful daughter.

My writing about Alzheimer’s has been received with more warmth than I could have imagined. After reading my memoir, Former North Carolina Poet Laureate Fred Chappell wrote, “I found this story valuable in an intensely personal way,” and my mentor Tony Abbott, professor Emeritus at Davidson College, said, “Motherhood: Lost and Found has much to teach us all as human beings.” I’m pleased and honored to share my story with others in the hopes of offering them comfort on their journey.

Ann Campanella is the author of the award-winning memoir, Motherhood: Lost and Found. Formerly a magazine and newspaper editor, her writing has been widely published. She blogs about her life and horses at Fields of Grace and is a guest blogger about Alzheimer’s at, a blog created by Kim Campbell, wife of country music singer Glen Campbell. Twice, Ann has received the Poet Laureate Award from the North Carolina Poetry Society. She lives on a small horse farm in North Carolina with her family and animals.

@authorAnnC (Twitter) (Facebook)

horse_2nd_time_around (Instagram)

Wednesday, January 11, 2017

Meet Molly LeGrand, dementia advocate, caregiver and blogger

I’ve worked in Long Term Care as an Activities Assistant for ten years. This role has offered a unique perspective on Alzheimer’s as I typically will meet the person after a diagnosis. And just like I would with a new friend or colleague, I begin to get to know them, and I get to know them with Alzheimer’s.  I was fortunate to start my career in the aging services with a mentor dedicated to the teaching of resident’s rights and the promotion of quality of life. These concepts have become my foundation as I grow in the field.

My motivation to write about Alzheimer’s is personal.  This diagnosis can be an extremely emotional time not only for the person but also their family and loved ones. I saw writing as an opportunity to not only join in on a well-established conversation but as a possibility to share my more positive experiences with people living with Alzheimer’s.   I don’t offer medical advice, but I do hope to bring some clarity to an often misunderstood disease.
As adults, we are always being told to live in the moment. And when we are with our parent or loved one who has Alzheimer’s this sentiment couldn't be truer.  Caregivers are often left to focus on the medical and physical care of their loved ones. But they deserve to be able to spend time with their loved one and to get to know them during this new phase of their lives.

The feedback I’ve received so far is quite positive, and I think there is a growing collective of families and advocates who realize the same thing, that their loved one is so much more than a medical diagnosis. That although painful, this does not mean that their lives with us have become unimportant nor does it mean we won’t have more special moments with them now.

Some of the most extraordinary people I have met were living with Alzheimer’s. I am continuously humbled by their kindness, their joy, and their constant affection. I write about empathy, relaxation, and validation therapy because with understanding; we will find that our loved ones aren’t “behaving” in a particular way because they have Alzheimer’s, but rather they are trying to communicate with us in a new way.

Comprehending a life without memories is difficult. Memories mean so much to us. They provide us with a sense of self and stand as a reminder of the journey we have taken in this life. And the memories we share with the people closest to us become an intricate piece of our identity. Alzheimer’s may take these memories away from us but, the inability to remember does not mean that it has to redefine who we are nor does it diminish the importance of the many moments  we have collected over the years.

I am always hopeful that a cure will be found, but until that joyous day comes, I will continue to write and promote the upside to aging.

Molly LeGrand has cared for older adults living with dementia and Alzheimer’s for over ten years. She is a recent graduate of the Erickson School, UMBC where she received her M.A. in the Management of Aging Services. Her blog Upside to Aging is dedicated to sharing an alternative and more positive side to aging.



Wednesday, January 4, 2017

Meet Wayne Evans, creator of "Let's Sing From Memory"

I’ve never had a family member diagnosed with Alzheimer’s, nor have I been a caregiver. I didn’t even know much about the disease until recently. But now I have a “new family” of over 20 people with Alzheimer’s, in addition to their loving caregivers.

My “new family” began in March of 2014 when, with a team of 20 volunteers, I started a ministry called “Let’s Sing From Memory.” This is a community outreach social gathering, held twice each month at Christ United Methodist Church in Chattanooga, TN. People with Alzheimer’s or other types of dementia, who are living at home, attend with their caregivers and other family members for fellowship and group singing of familiar old songs and hymns. 

While on a work assignment in England in 2009, I watched a BBC TV documentary called “Wonderland: The Alzheimer’s Choir.” It featured an outreach program called "Singing for the Brain," sponsored by the Alzheimer’s Society in the UK. I was fascinated as couples spoke about the social support and told how singing renewed old memories and even had an effect on their communication after they returned home. The documentary was my introduction to Alzheimer’s Disease and as it touched my heart, I knew that I wanted to find a way to help. 

While searching in vain for similar programs in the USA, I learned that nearly 5.5 million people in this country have Alzheimer's Disease and about 4 million of them are living at home with caregivers who are struggling to do their best every day. So with the successful program in the UK as our inspiration and model, and with support and training from the Alzheimer’s Association in Chattanooga, we started "Let's Sing From Memory." It’s a unique kind of support program where people with dementia and their caregivers can relax and have fun with others who share their circumstances. While their circle of friends and even family may have drifted away, here they can make new friends and enjoy this social experience together. Some participants have said that it is one of the few enjoyable things that they can do anymore as a couple. And many others have said something like; “I wish there had been a program like this when my mother was alive because she loved to sing.”

Sadly, our “new family” has lost 7 members to Alzheimer’s Disease in the past two years. But it continues to grow, as more people are diagnosed and learn about our ministry. My vision is that others will be encouraged to learn from our experience and begin their own outreach ministries. My prayer is that "Let's Sing From Memory" will become recognized as an important resource to improve the quality of life, and bring joy to thousands of people across the country. 

Wayne Evans graduated from Purdue University, served in the US Navy Civil Engineer Corps, and retired from a career in engineering and manufacturing. His passion for helping caregivers, and their loved ones with Alzheimer’s Disease, led him to start the “Let’s Sing From Memory” ministry and now he is focusing on encouraging others to do the same.

Alzheimer’s Association Walk to End Alzheimer’s - Team Page: