Meet Daniel Kenner, author of “Room For Grace”

Reprinted with permission from AlzAuthors.com

By Daniel Kenner

After many long months of exhaustive family struggles, cognitive and behavior changes and, a lengthy process of medical evaluations and tests, my dad, Buddy, received the devastating diagnosis of Frontotemporal Lobe Dementia (FTD). It was Valentine’s Day 2013. FTD is a rare neurological disease that affects personality and social behavior, speech and language comprehension and, executive functions involved in reasoning, decision-making and planning. Never to be outdone, my mom, Maureen, always the fierce competitor, was diagnosed with Stage 4 colon cancer only four months later.

That year, my best friend’s parents died in a terrible plane crash and that sudden tragedy struck me in such a profound way. “I am going to lose my mother and my father,” I remember thinking, “but I still have time.” I don’t know which is worse: losing parents instantly or watching them slowly deteriorate but, I knew I wouldn’t squander the chance to say goodbye.

Dad was a natural storyteller and through that, he became my favorite story to tell. He was my hero. The highest compliment I can give of my dad was he had a son that idolized him. Everything he loved, I was determined to love just as much or more: Bob Dylan, Lenny Bruce, Marlon Brando, absurdist theater and the San Francisco 49ers. But dementia made him quiet and apathetic, he no longer expressed an interest in the things we used to do together. To the outsider, it looked like he stopped caring. Mom would go for chemo and when she’d come home he wouldn’t ask how her day was or how she was feeling. She constantly worried that neither of them would be strong enough to keep their vows. The life they worked toward was not there; it had changed past the point of recognizing and the reality of what they retired to was obvious. What would happen to Dad when something happened to her? What was going to happen to Mom when something happened to him? But the silver lining was that the doctors had promised aggression and there was none of that. Dad was content and experienced joy. When we’d ask him what he liked about a situation or an event, his response always revolved around describing somebody’s smile. So, for three years Mom continued to be Dad’s main caregiver and, during that time, she completed sixty-three rounds of chemotherapy.

Sixty-three rounds of chemotherapy.

There was an onslaught of doctors and nurses and family and friends and volunteers and neighbors who never said no and extended every possible resource to us. I needed my own way to help, to keep me close, to feel protected. Not wanting to lose my parents’ voices, I planned and organized an oral history project for their thirtieth wedding anniversary. We recorded thirty hours of interviews and conversations. Room for Grace became my way to preserve their stories and their legacy. The project prepared me for a life with them gone but, a life of peace and with no regrets.

Then, a week after Father’s Day, Dad slipped on the steps bringing up the laundry. He fell down six stairs onto hard basement concrete. The man we loved spent the last seven months of his life basically paralyzed with an incomplete spinal disorder. And, because they were soul mates on a timeline so interconnected, on August 10, my thirtieth birthday, the doctors recommended Mom to Hospice. She was out of options.

I spent the last fall and winter by their bedsides. It was so painful but when I was called to act, I did. I jumped in. Full speed ahead. Until the end, Dad was able to be the father that he wanted to be. Tragedy showed me what kind of man I am, or at least, the potential of the man I can be. By participating fully, I left myself open to heartache, but also open to great joy and happiness and deep and meaningful connections. My patience, my humor, my work ethic, my love, all the traits a father would want for his son, brought out the best of my parents. I learned to never miss an opportunity to do something good for someone else. Room for Grace was a gift we shared together and it became my strength and my armor. It saved me countless times from heartache and desperation because I knew I would never lose them. My parents are going to miss out on a lot of my life; I am going to have to find symbolic gestures and signs to fill that emptiness, but I know that they were truly proud of me and that they had countless chances to watch me grow. I am so eager to share their story with you.

About the Author:

Daniel Kenner is an actor, playwright and co-author of  Room for Grace. Through anecdotes and hard-earned lessons, a family tackles challenge after challenge and reframes daily struggles with a positive outlook allowing them to transcend and conquer mortal fears with dignity and room for grace. More information can be found at www.RoomForGrace.org. Room for Grace partners with different organizations and 10% of each book purchased will be donated. The first organization receiving donations is Eye to Eye which began in Maureen Kenner’s Room 4 classroom. Eye to Eye fulfills their mission by supporting and growing a network of youth mentoring programs run by and for those with learning differences.

www.RoomForGrace.org

https://www.facebook.com/Room4Grace

https://www.instagram.com/silverbootimprints

@TheDanielKenner

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The Power of Community

by Irene Frances Olson, AlzAuthors Global Outreach Coordinator

The quickest method to connect with someone is the virtual, social media connection with which we are all familiar. But unless a person crosses the precipice from virtual to real, there is no way to truly understand the benefit of in-person relationships.

That was the case for the AlzAuthors Management Team when all six of us convened at the 2018 National Caregiving Conference in Chicago. The team was generously gifted with the opportunity to gather from the corners of the world from which we hail: the states of Washington, Montana, Ohio, North Carolina, and New York, and the Canadian province of Ontario. Meeting for the first time was a highly anticipated emotional event that proved beyond beneficial to me. You think you know someone after spending months or years emailing, texting, and video-calling, but what I discovered is you can’t truly know a person until extended “facetime” occurs.

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AlzAuthors In-Person Connections. Upper Left: Lisa B. Capp, Jean Lee, Vicki Tapia, Irene Frances Olson; Upper Right: Florrie Munat & Ann Campanella; Lower Right: Bobbi Carducci & Marianne Sciucco; Lower Left: Kathryn Harrison & Jean Lee

I met with as many conference attendees as I could and having done so, I came away concluding that community is everything. Like-minded individuals – at least 250 of them – gathered together for several days to feed the spirit, nourish the soul, and further the mission of being a support to the weary caregiver.

Regardless of which disease renders a person in need of care – Alzheimer’s, cancer, ALS, and the like – caregiver heroes need as much support as can be given. A powerful community goes a long way toward lessening a person’s burden, and as AlzAuthors has been known to say:

One can sing a lonely song, but we chose to form a choir and create harmony.

Six-pack Winner
Winner of the NCC18 AlzAuthors 6-Pack Giveaway

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New Release! Alzheimer’s and Dementia Caregiving Stories, Volume 1, an AlzAuthors Anthology

AlzAuthors AnthologyThe AlzAuthors management team is pleased to announce the publication of Alzheimer’s and Dementia Caregiving Stories: 58 Authors Share their Inspiring Personal Experiences, Vol. 1. This poignant collection of stories grew out of the first year’s blog posts on AlzAuthors.com, from June 1, 2016 through May 31, 2017. Within its pages, you will be immersed in a world of writing about Alzheimer’s and dementia.

The contributing authors have all been touched by Alzheimer’s and dementia, whether they live with the disease, are caregivers, or simply care. They reveal the story behind their books, what made them sit down and painstakingly share their story, and what they have gained from doing so.

This year-long project was made possible through the international collaboration of seven women, all daughters of dementia, your AlzAuthors management team.  We have worked tirelessly to find and vet resources – memoir, novels, nonfiction, poetry, children’s books, and blogs – to provide those living with dementia a friendly place to find the support and knowledge they need. We believe that by sharing our stories we open a dialogue that not only reduces the stigma surrounding a dementia diagnosis, but enlightens others to the reality that “I made it through. You can too.”

Heartfelt thanks go to our Special Projects Editor Jay Artale, author of  A Turbulent Mind: A Poetry Collection of a Mother’s Journey with Alzheimer’s,  who  donated countless hours to the design and formatting of this beautiful book.

In early 2019, we will begin the process of creating Volume 2, which will consist of posts from June 1, 2017 through May 31, 2018.

This book would make a wonderful gift for a caregiver you may know who is in need of knowledge, support, and comfort. Please keep it in mind as you do your holiday shopping. It is currently available on Amazon in Kindle format. Purchase here. A paperback is in the works and should be published within the next week or two.

All proceeds from anthology sales will be used by AlzAuthors.comto maintain our site and promote our authors’ books.

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