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Lost & Found: Navigating the Labyrinth of Dementia

Jan 12, 2023

By Adrienne MacIain

They call it "the longest goodbye".

When a loved one is suffering from dementia, it isn’t just their memory that starts to slip away, it's their identity, and the relationship you and others had with that identity.

"For the longest time, I felt as if I continued to lose my mom time and time again", says Jessica Goldmuntz Stokes, author of the new release Seeking Clarity in the Labyrinth: A Daughter's Journey through Alzheimer's (Red Thread Publishing, 2022). "The gift--which I really discovered with my work with the labyrinth, incidentally built by my mom and her sister--is that at each stage, each version of her was still her. A different version of her, perhaps, but she was still there. It isn’t our job to try to save our loved ones, only to see them for who they are, and hold space for them. In doing so, we honor our loved ones and their memories. They may seem like the walking dead, but they are not. They're simply standing in a different light. Perhaps, in their silence, they choose their path, and perhaps we can find our own path too".

Jessica´s writing journey began while cleaning her parents’ garage. "There was a box of letters written from my mom to her mother (my grandmother)", she explains, "they spanned from when she left home at 17 to when I was in high school. Over 25 years. My grandmother had saved the letters and my mom had kept them. At the time, I was increasingly upset and frustrated with my parents, and the tasks at hand. I had to help them make sense of their lives, but I was annoyed and sad as I was losing more and more of my mom. When I found the letters, I realized I had been given a gift: the gift of her voice. That's how I started down this path: to recover her voice and tell her story. To tell our story".

Jessica's story is not unique. Dementia is not new. Alzheimer's is not new. And it isn't going away. Despite years of study and some remarkable breakthroughs in recent years, we are far from fully understanding the human brain and how dementia affects us.

For those in the thick of the journey, we have to find tools to help us.

I say "we" because I, too, have a loved one who suffers from dementia. My father. The last time I visited, when I walked into his bedroom, he looked very confused and said, "A.D. (my childhood nickname)! How did you find me here? You've never been to this hospital"... I didn't bother trying to explain that he was no longer at the hospital, but back home in bed. Honestly, I was just so delighted that he recognized me, I considered that a win and just gave him a great big hug.

Jessica wrote this book for us. To help us navigate the slow, leaking loss of dementia and stay sane in the attempt.

I wrote Seeking Clarity in the Labyrinth to help anyone going through the loss of a loved one, so that they can find some peace and solace in a difficult journey, by showing how to shift from anger and frustration to love and acceptance.

The tool Jessica discovered to help her process, grieve, and accept, is walking the labyrinth.

I have worked with labyrinths since my 20s. My mom and aunt built an enormous labyrinth in my mom's backyard. Little did I know how much I would need it as a tool and place of solace and release through Mom's 13 year-long journey through Alzheimer's.

But her relationship with the mother she had grown up with wasn't the only loss she would have to navigate in the course of those thirteen years.

"In the middle of that journey", explains Jessica, "we lost my Aunt (her sister) to Alzheimer's, and my Uncle to Parkinson's. We also lost my dad's sister to cancer. I navigated multiple stages of illness and disease, and the different ways people go through it, and the labyrinth was my saving grace throughout. I am now a trained Veriditas labyrinth facilitator which supports the intent of the labyrinth as a spiritual tool".

Jessica's workshop, "Seeking Clarity with the Labyrinth: A Guide for Support, Connection, and Healing", provides support for people with Alzheimer's as well as loved ones to understand and work with their disease.

However, Jessica wants to make it clear that the labyrinth is only one of many tools that readers can use to process their grief and stay sane on the winding journey of dementia. In fact, there's another tool Jessica made use of throughout hers: writing.

"I wrote a lot as we were going through our journey. The first version has so many stories of memories and love for mom. That will be the short storybook I plan to publish sometime next year! At times, writing this book was really hard. I would break down in tears. I was also running my janitorial and house cleaning business, raising my teenage kids, and supporting my parents. It was a little crazy. A few people have said my writing is sort of like being in my innermost thoughts or reading a journal. In many ways, a lot of the writing was just like that- journalling my way through Mom's journey".

Watching a loved one slip away little by little, becoming more and more dependent on others and more and more resentful of that dependence, is a special kind of torture. Jessica does not sugar-coat the challenges involved, but she does remind readers of the light at the end of the tunnel, and of the tools we have at our disposal to help us through.

"It is terrible and it sucks", says Jessica, "and you will survive. You are not alone".

We are unlikely to see the eradication of Alzheimer’s or dementia within our lifetime. This journey is one that many of us will walk on eventually. So the best we can do is prepare ourselves and remind ourselves and each other to find the moments of light in the darkness.

"I believe in love and light", Jessica insists, "I believe we have to find ways to see the positive, even in the ugly icky yucky part of life. Like that day when I was wiping my mom's ass because she had soiled herself; she looked at me with irritation--she hated it--but also with love. She hated being in that position, but she loved that I was helping her. It was a tiny glimmer in her eye, but it was there. If we can just take the tiny glimmers and exponentially expand on them, think of how much love and light we can spread through one another, through the universe!"

To continue your journey with Jessica beyond the book, please visit her website www.JessicaStokesAuthor.com. There, she has a wealth of information on Alzheimer's Dementia and Parkinson's, as well as information on the Labyrinth, and how you can hire her to lead a workshop or speak on navigating the challenges of Alzheimer's, Parkinson's disease, dementia, palliative care, Hospice, grief, loss, healing and so much more.


Connect with Jessica: https://linktr.ee/jagstokes

Watch her full interview: 


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