AlzAuthors: Cathie Borrie and The Long Hello

By Cathie Borrie 

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.” 

Cathie Borrie

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.”

***

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AlzAuthors: Ann Campanella Shares Her Story of Motherhood and Dementia

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.

AlzAuthors: Molly LeGrand and The Upside of Aging

By Molly LeGrand

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 my blog The Upside of Aging 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.

AlzAuthors: Wayne Evans' Music Ministry "Let's Sing From Memory"

by Wayne Evans

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 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.