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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Meet Malia Kline, Co-Author With Her Sister Diane Stinson, M.D. of “Sisterly Shove”

Reprinted with permission from AlzAuthors.com

By Malia Kline

When our mama was diagnosed with infiltrating pancreatic cancer and given three-to-six months to live, she was the sole caregiver for our 87-year-old father “Papa,” who was in the early stages of dementia. Over the next 13 years, my sister Diane, a pathologist, and I shared care of them from opposite coasts and opposing viewpoints, often engaging in hand-to-heart combat over what constitutes quality of life. Sisterly love turned to https://sisterlyshove.comin the new book we co-authored.

After hearing the news that Mama had pancreatic cancer, Diane proclaimed her “a goner.” But after she became dissatisfied with both the home care I arranged and the health care system in our hometown in North Carolina, Diane took Mama against doctor’s orders to live in her home in a California beach town. She quickly discovered that the wild card of having someone like Papa with dementia in the mix made cancer care and practicing medicine impossible for her.

Papa ping-ponged back to me in North Carolina and lived in a memory care facility I loved for five years.But after he broke both hips, Diane eldernapped him from the facility,quit practicing medicine, and doctored him by herself 24/7 for more than seven years at her home in California.

The story my sister and I tell in “Sisterly Shove” reflects a new kind of sibling rivalry among baby boomers: Which sister, or sometimes brother, is best willing and financially able to care for and make life-or-death decisions for elderly parents, especially in light of their own obligations to young children? Is it possible to share care among siblings, especially in a strong-willed and highly opinionated family like ours with a both a sister and brother who are doctors calling the shots long distance?

The Alzheimer’s Association says that 1 in 3 seniors now dies with Alzheimer’s or another dementia. In the case of Papa and his siblings, dementia snatched the memories and daily lives of 4 out of 5 of them. Since we are part of an extended family predisposed to living long lives, most of our cousins have also experienced Sisterly Shove. Since the book came out, we’ve learned that three once-close female cousins who all work in health care and battled over care of their mom have now been estranged for years.

We’ve also found that many of our readers have experienced similarly heart-wrenching family caregiving battles and can totally relate. Family relationships have clearly become an unintended casualty of the Alzheimer’s and dementia epidemic. We are working to share our story, not only in our book, but also in person at conferences and within caregiver support groups in order to help siblings work together in a spirit of compromise.

My co-author Diane went to medical school in the days when health care was a fee-for- service world. She believes that if we don’t support research and change our approaches to eldercare under the new value-based medicine model, we will pit one generation against the next and compromise our ability to be competitive in a global economy. That’s one perspective and hope for our society that the two of us certainly will not fight about.

About the Author

Malia Kline, the younger sister in “Sisterly Shove” is a copywriter who studied journalism at The University of North Carolina at Chapel Hill and was formerly a writer/producer at a CBS-affiliate TV station. She was also the scriptwriter on videos in the Duke Family Series. One of them, It’s Potty Time, was named “KidVid of the Year” by Roger Ebert and became available in nearly 700 libraries worldwide. Malia now owns her own copywriting business and shares her word-obsessed perspectives in MaliaMania, a comedic grammar blog. She lives in Charlotte, N.C. with her husband Steve and has one daughter who has followed in her sister’s footsteps as an M.D., recently starting her pediatric residency.

Follow Malia Kline

https://sisterlyshove.com

https://www.facebook.com/MaliaKlineAuthor/

http://maliamania.blogspot.com/

https://twitter.com/Malia_Kline

www.instagram.com/maliakline/

Buy the Book Links:

Amazon 

https://www.kobo.com/us/en/ebook/sisterly-shove

https://play.google.com/store/books/details/Malia_Kline_Sisterly_Shove?id=uU9aDwAAQBAJ

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3-D Book Cover

Meet Vicki Tapia, AlzAuthors Admin and Author of “Somebody Stole My Iron”

3-D Book CoverReprinted with permission from AlzAuthors.com

By Vicki Tapia

In 2004, both my parents were diagnosed with dementia, Dad with Parkinson’s-related dementia and Mom with moderate Alzheimer’s disease. Even though symptoms had become increasingly obvious by the time of diagnosis, hearing the words dementia and Alzheimer’s disease really knocked the wind out of my sails. We now faced the stark reality of terminal diagnoses. Continue reading

Meet Irene Frances Olson author of “Requiem for the Status Quo”

Requiem for the status quo eimageMy name is Irene Frances Olson, and I survived being an Alzheimer’s caregiver for family members…twice.

My father, Don Patrick Desonier, to whom my novel Requiem for the Status Quo was dedicated, was the first such family member. The second family member was my sister-in-law, who was diagnosed with mixed dementia just one month after my father’s death in 2007. My brother was an extraordinary caregiver for his wife; I was just the go-to person for advice, direction, and the occasional caregiving day. I guess having been front and center on my father’s three-year Alzheimer’s path gave me an “edge” on experience. Continue reading