Alzheimer’s and Dementia Journey’s

Life is full of journeys. Some short, some long. Some enjoyable, and others . . . well, they leave a bitter taste in your mouth.

If your life hasn’t been impacted by Alzheimer’s or another form of dementia, count yourself lucky. The impact of this disease on our generation is staggering.

I’ve watched my beloved Mum do battle with Alzheimer’s for the past five years and it’s heart wrenching to witness the strong, independent, and proud woman she has always been—slowly disappear. Her world gets smaller each year. She’s lost her independence. She struggles to communicate. Where once her words flowed, now it’s frustrating agony for her, and soul-splitting for us.

The woman she once was, is still there inside, and we occasionally get glimpses of her former self. These moments when we connect are reassuring for us, but very painful for her. This raw awareness of what is happening inside her brain, overwhelms her so much, and causes her so much distress, it’s better that they don’t happen. This awareness/oblivion see-saw is cruel. Devastating. Heart-numbing.

Support for Alzheimer’s through words

Every dementia sufferers’ experience is different. No two dementia journey’s are the same. So although there has been a lot written about dementia sufferers and caregivers, some books I’ve read haven’t offered any solace because they’re not relatable. But some memoirs and biographies hit the nail on the head and provide such comfort—you suddenly appreciate the power of the written word.

I’m not the only one who has come to this realization. In 2015, Marianne Sciucco, Jean Lee, and Vicki Tapia became cyber friends on social media after reading each other’s books. Recognizing the power of collaboration, they began promoting their books together and writing blog posts about Alzheimer’s, dementia, and caregiving for different caregiver websites, and eventually set up their own website to gather resources where caregivers and those living with memory impairment could find solid support, and authors could find the proper audience.

Each week they invite authors to write short posts about the story behind their story, and although it’s an opportunity for author’s to showcase their books, the real power is an audience in need of support to help them to cope, now has a source of support—through words.

Collaboration with other Alzheimer’s Authors

I stumbled across AlzAuthors when I reached out to one of it’s founders about beta reading my Alzheimer’s poetic memoir (A Turbulent Mind), and ended up interacting with them on their Facebook AlzAuthors Writer’s group.

Later that year posts started appearing about creating an anthology of their blog posts, as a way to share the stories behind the stories to a broader audience, so I offered to help manage their anthology project.

As well as providing self-publishing input and advice, I formatted the e-book and paperback, and invested in software to help us create the book’s index.

Each of the AlzAuthors team members took on different roles to pull this project together—and it was so rewarding to be part of this dedicated group of volunteers whose mission it is to eliminate the stigma surrounding this devastating, cruel and unpredictable disease.

This project took many months of effort, and the thanks I received from the team in the anthology’s acknowledgement’s section was so heartwarming, it made it all worthwhile. My involvement was an opportunity to give back to a community who give unselfishly.

I hope this anthology helps to connect readers to a story they can relate to. A story that provides comfort and support. A story to bridge that isolation gap. To reassure them they’re not alone—through the power of words.