AlzAuthors: Karenna Wright and her memoir, "The Grapes of Dementia"

by Karenna Wright

It used to be that nine months or so after a traditional wedding, couples would announce they were pregnant. Not with Alan and me.

Nine months after we were married, and before our first honeymoon year was over, we were instead adjusting to the symptoms of Alan’s newly diagnosed dementia.

He passed less than five years after that diagnosis. He was 67 years old, I was 59.

Since then, I've been writing about our lives with early onset dementia, as well as my grief process.

I'd been writing all my life, had published in journals and magazines, so the thought of writing our story came naturally to me. And really, it wasn't an idea at all. It was something I did as instinctively as a mother loves her child.

At first I randomly jotted down brief notes, a shorthand to capture all my memories.

Several years later, Alan fell at home, then had a bad reaction to an anti-anxiety drug given him in the hospital.

He suffered disorienting, disturbing hallucinations and excruciatingly painful muscle spasms. Under the influence of the drug, he clawed at me, grabbed me, pulled me close to him, and fought me off—all at the same time. He squeezed my hand so tight I thought it would break.

When I got home at eleven o'clock that night, physically beat up and emotionally broken, I wrote down everything that happened that day.

My writing was raw, uncensored. I wrote for my own mental health. I needed to share my agony, to find a glimmer of hope in it, then offer it to others.

AlzAuthors: Deborah Shouse, Fingers on the Keyboard, Heart on the Page

By Deborah Shouse 

As my mother moved deeper into dementia, I treasured every moment of connection with her. Often it was only a minute or two, sitting shoulder to shoulder on the bench in the courtyard of the memory care unit, watching the community bunny rabbit nibble on grass. Leafing through a celebrity magazine and Mom pointing to George Clooney saying, “He’s good looking.” (Her first sentence in days—dare I tell my father?) Looking into her eyes and singing “Oh What a Beautiful Morning” and other songs from favorite musicals. I was always looking for new and creative ways to feel close to her. 

After Mom died, my partner Ron's parents each lived with dementia and we continued our quest for connection. 

This quest was extremely meaningful for me and I wanted to write about the creative possibilities inherent in being a care partner for someone living with dementia. But I didn’t know how or where to start. The documentary film, Alive Inside, pointed the way. When I watched this powerful movie about music transforming the lives of those living with dementia, I instantly knew I wanted to write about this subject. 

I contacted a national magazine and suggested an article. The editor asked, “How else are people communicating with those living with memory loss?” As I researched the question, I discovered a whole new world. Across the globe, writers, painters, musicians, gardeners, dancers, expressive therapists, and other innovators were using the arts, creativity, and imagination to tap into the spirit that thrives in those living with dementia. I was intrigued and I knew family and professional care partners would benefit from their ideas. 

My final motivation came from a friend, who plaintively asked, “What are we going to do all day?” Her husband was living with dementia and their normal activities were becoming harder to do. She helped me understand that whatever I wrote about needed to be accessible, adaptable, intriguing and easy to implement, for friends and care

partners, both family and professional. 

For me, this book was a work of the heart. I had already written about my experiences with my mother in Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. I knew the emotional healing, the joyous sense of connection, the widening of my heart, and the expansion of my thinking that came from sharing my stories with others. 

Before I began writing, I asked various family and professional care partners, “What do you think of this idea: a book about staying connected through creativity and imagination?” They were excited by the hope and engagement the book promised. So I started reaching out, often cold calling visionaries in the field. Every person I approached was excited by the subject matter and each interview inspired me and enriched my book. After each conversation, I asked, “Who else should I talk to?” By following the flow of ideas, I talked to dozens of creative experts in all areas of the world, collecting their ground-breaking ideas, and translating them into easy, meaningful activities both partners could do together. 

This writing project is now complete and I am still following the flow as I seek ways to share and market the book. The cascade of ideas opens my mind and heart and reminds me to live in curiosity and wonder, a great state of mind for a writer.

About the Author

Deborah Shouse is a writer, speaker, editor and dementia advocate. Deborah’s newest book, Connecting in the Land of Dementia: Creative Activities to Explore Together, features dozens of experts in the field of creativity and dementia. These innovators share ideas that engage the creative spirit so care partners and people living with dementia can continue to experience meaningful moments of connecting. Deborah and her partner Ron Zoglin raised more than $80,000 for Alzheimer’s programs by donating all proceeds from her initially self-published book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, to dementia-based non-profits. Central Recovery Press has since published an updated version of Love in the Land. To learn more about Deborah and her work, visit DementiaJourney.org

Today's Guest: Samantha Seeley - Blogger, Photographer, Foodie, Teacher

Today's guest is blogger and food fanatic Samantha Seeley, a self-described food-obsessed, camera clutching nerd who has given us Sweet Remedy,  a food and lifestyle blog that focuses on home cooking made with real food and fresh, local, and seasonal ingredients. Its pages are graced with almost edible photos of original kitchen creations shot by the author. In June of 2013, she spoke at the BlogHer Food conference on a panel titled Pro Food Photography on the Fly. She covers Restaurant Week in the Hudson Valley and has been published in a variety of publications, most notably The Valley Table magazine. She's currently pursing her BA in Multimedia Production. I have the pleasure of working with Samantha at SUNY Orange, where she will present a master class, "Blogging and Online Presentation for Creative Endeavors: How to Market Yourself as a Working Artist," on Monday, March 30, from 6 to 7:30 p.m. During this class, she will teach you how to “present yourself digitally in a professional way and how to be seen in the crowd.” A question and answer session will follow. The class is free and open to the public, and will be of interest to anyone using or planning to use social media to further an artistic endeavor, whether writing, art, music, theater, etc. Welcome to Adventures in Publishing Samantha! Please tell us about Sweet Remedy. What got you started?

Thanks for inviting me to meet your readers, Marianne. I started Sweet Remedy as a vendor at the Pine Bush Farmers' Market in 2008/2009. I made cupcakes mainly, but also brownies and cookies. I began the website as a way to let customers know when I'd be at the market and as a way for them to see what flavors I had baked that week. Eventually it turned into a recipe blog, and I started to post everything I made in my kitchen.

Why food?

It inspires me: The aromas, vibrant colors of fresh produce and of course the many tastes. Once I started selling baked goods at the farmers market, the food community drew me in. 

How do you create the recipes?

I start out with an idea or a flavor and take it from there. I have a small notebook that I carry with me everywhere and I write down almost every idea that pops into my head throughout the day. The other day, someone mentioned a person named "Rosemary" and all I could think about was the herb rosemary in fresh baked bread! It also comes down to a lot of trial and error and multiple test runs in the kitchen! Rarely is a recipe good enough on the first try. 

Were you always a foodie?

Not always, in high school you wouldn't find me in the kitchen at all. A lot of food bloggers have cute stories about baking cookies with their grandma. Not me!

Who's your target audience?

My target audience for Sweet Remedy is anyone who wants to learn how to cook. I'm currently working on a video series on kitchen basics. I want to make cooking seem approachable and less intimidating to the novice. For my photography blog, my audience is two-fold: Other photographers looking to learn and magazines, publishing houses, restaurateurs, cookbook authors, etc. It is still in the beginning stages and all will unfold as I create more content.

How do you build your audience?

You have to know your audience before you build it up. If you aren't creating content that they want to read, they won't come back to your blog, subscribe or follow you on social media. The first step is to understand them and their needs and then to promote those posts where they "hang out" online. I also firmly believe in sharing knowledge and teaching someone something new. It doesn't hurt to post on a regular schedule! Also, a lot of time and patience.

Which tools do you depend on to create your blog? i.e software, cameras, cookbooks, websites, etc.

I use quite a few tools for my site:

•    Self-Hosted WordPress
•    Adobe Creative Cloud (Premiere Pro for videos, Lightroom and Photoshop for digital images)
•    Lots of camera equipment: Canon 6D, Tripod, Cables, SD Cards, Flash Drives, etc.                  
•    Pinterest, Twitter, Instagram, YouTube
•   The Flavor Bible: The Essential Guide to Culinary Creativity, Based on the Wisdom of     America's Most Imaginative Chefs by Karen Page and Andrew Dornenburg
•   Ratio: The Simple Codes Behind the Craft of Everyday Cooking by Michael Ruhlman

This list could go on forever so I'll stop there! 

What is your ultimate goal?

To help people navigate their kitchens and become better home cooks! I also started my photography blog to help teach photography fundamentals. I have multiple personal goals:

•     Write a cookbook
•     Photograph food for other cookbook authors, restaurants and magazines
•     Teach workshops (photography related)
•     Design online courses
•     Finish my degrees

Are you doing a book?

Not yet. I hope to have more time for this when I finish up my bachelor's degree. I currently have too many ideas for a cookbook. 

How did you train for this line of work?

I don't think I "trained" for it, I sort of just fell into it. I threw myself into Sweet Remedy head first and learned a lot along the way. I am currently pursuing my bachelor’s degree in Multimedia Production and in turn have taken many design, photography and new media courses. As for the cooking side of it, I've mostly learned by trial and error and now consider myself a pretty good cook! I learned from my mistakes in the kitchen, and try to help others learn by sharing those mistakes! 

Do you consider this a hobby or a profession?

I have two other gigs which are my main sources of income. I suppose I am walking the line between hobby and profession as I do a lot of freelance work through recipe development and photography. 

I see you're an affiliate. With what company(ies) and how does this benefit you?

I am an affiliate with a lot of companies, most notably Amazon. I receive a small monetary percentage of each sale made due to a link to Amazon from my blog.

What advice do you have for new bloggers?

If you're going to start a blog, have a clear focus and a narrow niche. It's also a good idea to absolutely love what you are going to write about, otherwise you will get bored and that will show through your work. 

Lastly, who gets to eat the delicious food after the photo shoot?

Mostly my boyfriend. Sometimes my neighbors! 

Thanks for stopping by Samantha! I'm looking forward to your class. If you'd like to attend her class, please visit SUNY Orange Cultural Affairs. 

Follow Samantha on:

Sweet Remedy 

Samantha Seeley, Food & Lifestyle Photographer

Twitter

Facebook

Google+

Pinterest

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