Meet Suzka Collins, author of Wonders in Dementialand

By Suzka Collins

Ah… the wonders I found living with my mother in Dementialand. It all started almost minutes after she was diagnosed with progressive dementia. The cause was meningitis encephalitis. There seemed to be no choice at the time. I had to leave my bohemian life in the art world in California to return to a Chicago suburb where my mom was living. I am a painter. This had all the markings of a disaster.

After four years living in Dementialand, I returned to California and remember my friends telling me how sorry they were, how horrible it must have been and what a great sacrifice I made taking care of her. I hadn’t a clue what they were talking about. For me, I was on a crazy cruise of chaos and enchantment. I had to write a book. Dementia was getting a bad rap.

Wonders in Dementialand is a quirky, meta-fictional memoir. The book is composed of 350 pages with oddly connected sections that range from flashback memories of something that might have actually happened, to pure fantasy.

The architecture of the book is noticeably whimsical. Parts are pure imaginary. I metaphorically humanized ‘dementia’ mirroring a male character named Skeeter - an uncommon approach. Violet (my mother and main character) meets Skeeter in a port-of-crossing terminal. As Violet attempts to cross the border, she trips and falls in the arms of this handsome suitor. The suitor takes her away to exotic and alluring places that Violet keeps secret. Like a schoolgirl, Violet is smitten and scared. But Skeeter (similar to dementia) is persistent in pursuing Violet. Other parts have dreamlike processions and hallucinatory imagery depicting the facade of life with a fragmented potpourri of characters. Large balloons with cartoon faces of the Cookie monster, Dora, Betty Boop and Miss Kitty parade themselves about everywhere making all the craziness palpable and even mysterious at times. It’s funny and sad and touching at the same time. Yet through this book there shines the light of an authentic truism. Nothing is trivialized. The delusions, the paranoia and the discombobulated conversations are still there.

Wonders in Dementialand breaks through the stigma of dementia, which is now being called the defining medical concern of this generation. Today more than 47.5 million are living with dementia worldwide. Multiply that number by the family members and caregivers affected by dementia directly, day in and day out, and you have a universe of people living in dementialand. It’s a subject that matters.

Amazon > Wonders In Dementialand > Comments 

5.0 out of 5 stars

What wonders you’ll find… By H

I love this book because of its attitude - vibrant, free-spirited, and positive.

A book like this is precious. Reading it gives me the energy I need to tackle the world and notice the colors of what otherwise might be a debilitating tragedy. Dementia can destroy the lives of everyone involved, but in this book, Suzka gives the gift of a new perspective-- accepting, open, and daring enough to have fun.

5.0 out of 5 stars

I loved reading this book By Christi

Suzka explored dementia as only an artist could. As I read her book, I felt that I could actually see what she was seeing and feel the withdrawal from the everyday understanding of the "real" world that was being replaced with an other-worldly view that leaves all the baggage and preconceived notions behind. It is a unique view of dementia from a caring, loving daughter who accompanied her mother as she made this journey. I loved reading this book.

Suzka, painter-author

suzka@dementialand.com

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Facebook: Suzka Susan Collins

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Dementialand™

Meet Emily Page, author of "Fractured Memories"

By Emily Page

Writing about dementia came about fairly slowly and organically. I'm an artist, so when my dad was diagnosed with frontotemporal dementia at the age of 65, my natural inclination was to start doing paintings about our journey as a sort of self-prescribed art therapy. I used an elephant as both a symbol for and a talisman against dementia, because "an elephant never forgets." As I created paintings, I posted them on social media with an explanation of their meaning, and people really responded to them. At the insistence of a friend, I started a blog to help promote my artwork, and it became a kind of online journal. Before long, I was getting tons of great feedback from my readers when I posted about what we were experiencing as we coped with caregiving. "Me, too!" was a phrase I started hearing a lot.

After my dad passed away in early 2016, my readers kept calling for me to turn the writing and artwork into a book, which was a fairly terrifying thought. I don't consider myself a writer, so the thought of sitting down and writing a book was daunting, but I knew that what I'd been writing about on my blog had spoken to people, and I hoped that the book would do the same thing.

When my dad was diagnosed, he was really open about his diagnosis, and so I decided that honesty was paramount if my book was going to do him justice. In our home, honesty meant not just talking about the really hard stuff, but laughing at the ridiculous stuff, too. There's plenty of both. My motto was, "We laugh when we can, we cry when we must." So I talked about the silly things he did as a result of the disease, and I talked about the raw, painful stuff that we were going through in our efforts to give him the best care possible. There are moments when I don't make myself look so great, but I thought it was important for other caregivers to be able to see themselves in the writing and know that it's okay and forgivable to not be perfect. We're all just struggling to do our best for the people we love.

I'm getting some great reviews on Amazon, but even more important to me are the people who've been given the book by a friend and have taken the time to look me up and email me to say, "Thank you. You said all the things I've been thinking."

About the Author

Emily Page is a professional artist and part-time writer. Working out of Raleigh, NC, Page spends most of her time elbow deep in paint, but comes up for air periodically to share her art and thoughts on her blog. She translated her ridiculous musings about her family’s journey through her father’s dementia into a book, Fractured Memories: Because Demented People Need Love, Too, available at http://shop.emilypageart.com/.

Follow her on Twitter at @EmilyPageArt23, and read her blog at https://emilypageart.net/.

Facebook: https://www.facebook.com/emilypageart

Meet Ann Hedreen author of Her Beautiful Brain

By Ann Hedreen

Without quite knowing it at the time, I began working on Her Beautiful Brain in 2004, when my husband and I made an award-winning documentary film about my mother called Quick Brown Fox: an Alzheimer's Story, which has had a long life on PBS stations and remains in distribution through Women Make Movies, Amazon and other sites. Making Quick Brown Fox made me realize there was so much more of my mom's story to tell than our film could contain. I also began to understand that, while I love filmmaking (which is what I do for a living), I have been a writer since I could hold a pencil and I longed to write much more than I was then writing as a filmmaker and occasional journalist. 

In 2008, the incredible gift of a two-week residency at the Hedgebrook retreat for women writers got me going and the Goddard MFA program, which I completed in July 2010, kept me going on what became a book-length memoir. 

Her Beautiful Brain is the story of my mother, a copper miner’s daughter who was divorced twice, widowed once, raised six kids singlehandedly, got her B.A. and M.A. at 40 so she could support us as a Seattle schoolteacher—only to start showing signs of Alzheimer’s in her late fifties, taking us all on a long descent we never could have anticipated or imagined. 

The book begins in Haiti, where Mom is visiting two of her daughters, one a Peace Corps volunteer and one—me—a journalist, and where we first suspect that something is wrong. From Haiti back to Seattle and back to the mine-gouged Finntown neighborhood in Butte, Montana where she was born; from her historic Seattle neighborhood to a locked geropsychiatric ward, Her Beautiful Brain travels the terrain of a heartbreaking illness: one that currently affects more than 5.5 million American families—a number that is expected to double or even triple by mid-century. 

The tone of the book is essay-like, not blow-by-blow or how-to or what-to-expect. It is a reflection on the life of one person and how Alzheimer’s disease bent the trajectory of that life. Her Beautiful Brain tells the story of who my mom was, the seismic social changes she and we lived through and how her illness changed not only her life but my life, forever. And not just mine but my whole family’s: my five siblings, our spouses, Mom’s 14 grandchildren. We’re a great example of the ripple effect of this most insidious and quietly cruel of killers. We are the children and grandchildren of a woman who lost not her mind but her beautiful, wonderful brain, as it was called by her high school classmates in Butte, Montana, where she was once known as the smartest girl in the school. 

Since Her Beautiful Brain was published in September 2014, feedback has been so poignant and meaningful. You get it, people say. You don’t try to make it pretty. As a caregiver, I feel less alone now. That’s why I wrote the book. Families living with Alzheimer’s disease are becoming ever braver about speaking out and busting through all the shame and stigma and misconceptions that surround Alzheimer’s and other dementias, and I believe it is because more and more of us are sharing our stories. 

You can find me at annhedreen.com, on twitter at @restlessnest and on Facebook.

ann@whitenoiseproductions.com

Welcome Peggy Bushy, author of "Lewy, Mom, and Me"

By Peggy Bushy

When Lewy Body Dementia entered my home, the world as I knew it began to shift, and I found myself in a constant state of confusion. My sweet mother, who lived in our home, was hallucinating, her stories and behavior were becoming more and more bizarre, and I had no idea why - neither did any of the doctors I consulted. Lost and alone, I could feel myself becoming a little more unglued with every passing day while I watched the family rules fly out the window one by one. "Wait! I depend on those family rules." They may not be the same as the neighbor's rules but they're mine, they've been mine forever, and I'm comfortable with them.

 

Written or unwritten family rules become our guidebook. Even as adults when we partner up with someone else who has a different set of rules, it doesn't take long before we meld them together and find comfort and harmony with the new set. When dementia crept into my life and disorder began to rear its ugly head, my home felt like a foreign country and I didn't speak its language. Confusion and disorder visited before. I was used to a little fracture here and there in my routine. My feathers got ruffled, I talked about it, or researched it, and sometimes received a remedy for an outside source. This time, as hard as I looked I couldn't find a single answer and it wasn't long before all hell broke loose and my harmonious routine turned into anarchy. That's when I joined a support group and the company of others. That's when I learned I had to think outside the guidebook.

 

My mother was diagnosed with Lewy Body Dementia years after my search for answers and years after family harmony fell apart. After a few weeks of processing the information, I looked for some comfort in a book. I found a few books related to the topic but they were all medical or clinical. I wanted a memoir. A book that would make me laugh, cry, relate, and feel not so alone. Having found nothing, I gathered up my years of journals, and wrote one.

 

Writing Lewy, Mom, and Me was difficult. Re-living the journey over and over was often painful, but also has been enriching. In the end it brought me a huge sense of accomplishment - especially when I hear from my readers. Many people have reached out to thank me for sharing my story and tell me how closely they relate to my stories. I am so happy to be able to offer the kind of support that I was looking for when I was lost and searching for comfort.

Connect with Peggy Bushy

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Purchase Lewy, Mom, and Me: A Caregiver's Story