Meet Daniel Kenner, author of "Room For Grace"

Reposted 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 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 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
https://twitter.com/theDanielKenner

Meet Leah Stanley, Author of Goodnight, Sweet

Reposted with permission from AlzAuthors.com

Surviving Double Dementia Duty: 
A Story About Two Loved Ones Needing Care Simultaneously

By Leah Stanley

I began writing Goodnight, Sweet: A Caregiver’s Long Goodbye in 2001. For me, committing the story to print was a cathartic experience following the deaths of my grandparents two years earlier. Edward Meade had battled an unspecified dementia while his wife Clara was afflicted with Alzheimer’s. As their designated caregiver, a role which I had gladly—and sorrowfully—taken on, I walked alongside them down that tedious road while loving, caring for, and protecting them.

Every afternoon when my then almost two-year-old son would go down for his nap, I would sit at my computer and write diligently, reliving the moments which, when put together, told the full story; I would laugh and I would cry as I remembered the decisions and recalled the words, reactions and facial expressions of those around me. I felt it was imperative that my experience as an Alzheimer’s/dementia caregiver not fade away with time, but that it be shared because I came to realize there were so many others following that same winding trail I’d walked, and I remembered how I was always encouraged when I could talk with someone who had been engulfed in a similar circumstance. I believe it’s one of the ways God designed us, being able to meet on the common ground of shared events.

Following the birth of my daughter in 2002, the manuscript was shelved for several years as I took on the role of full-time mom. By spring 2016 I began to sense it was time to re-enter the story-telling mode and finish the work I had started fourteen years earlier. Additionally, I was spurred on by the sheer number of people I encountered who were facing the same issues I’d dealt with myself. I think I was strangely astonished when I had to acknowledge the disease had not “died” with my grandparents; it had marched through the years with aggression, and a shocking number of people had been devastated by it.

The book details my entire experience from the moment I received the first phone call to settling their estate nearly four years later. I have consistently heard people say my writing is very transparent as I share the range of emotions which accompanied caring for my grandparents; several readers have stated they couldn’t put it down—encouraging words for any author to hear!

When the book was complete, I began hand-picking readers to endorse it—I chose a medical social worker, two former caregivers and a physical therapist. Their responses were overwhelmingly positive, and the medical social worker even said the book is an excellent resource for people who are anywhere on the path of providing care for a loved one.
It is such a blessing to know my grandparents will be remembered, and our painful experience wading through Alzheimer’s and dementia may be able to guide others to the realization that there is hope, and caregivers do survive.

Goodnight, Sweet: A Caregiver’s Long Goodbye was released on March 1, 2019.  Purchase an eBook or paperback copy on Amazonor at Barnes & Noble.

About the Author
Leah Stanley was born in Memphis, Tennessee, where she grew up and attended college, meeting her husband, Chris, during their freshman year. She earned a bachelor’s degree in Journalism from the University of Memphis and has a background in corporate communications and freelance writing. She lives in Houston, Texas, with her husband, son, daughter, and their boxer/beagle rescue dog Brooke.

Connect with Leah
Facebook: Facebook.com/LStanleyBooks
Twitter: @LStanleyBooks
LinkedIn: https://www.linkedin.com/in/leahstanleybooks/

Meet Julie Ann Bigham, Author of "Creating Joy Filled Visits in the Midst of Alzheimer’s"

Reposted with permission from AlzAuthors.com

By Julie Ann Bigham

My passion for bringing joy to the lives of seniors began at an early age, when my gramps encouraged me to entertain at his Senior Center. Fifteen minutes of stand up, egged on by applause from the crowd, ignited a spark of love in my heart for the older generation. Thirty plus years later that spark has erupted into a full flame of passion for providing support to professional and family caregivers caring for loved ones living with Alzheimer’s.

Through my work experience as an activity professional, it became evident to me that providing high quality, compassionate care for those living with Alzheimer’s takes a village, and family engagement in any setting is vital. Families can become overwhelmed with doctor visits, medication changes, increasing care needs, and care plan meetings, not to mention the emotional stress. With everything they juggle, families can forget the importance of spending quality time having fun with their loved one, often spiraling into isolation and depression.

While some family caregivers spend hours visiting a loved one, others hope to remember them as they were. Both situations are understandable, as people find different ways of coping with the stress that accompanies an Alzheimer’s diagnosis. For the benefit of both, I set out to create a product that can help families maximize the time they spend with a loved one to assure that visits are filled with positive interaction and fun, thus eliminating common feelings of guilt and sadness.

The Joy Filled Visits Kit, completed in 2015, is filled with tools I found most helpful in my career, and includes an easy-to-read manual. The kit helps families create a simple plan for each visit to keep their loved one engaged in the life of the family for as long as possible. At the encouragement of a librarian, I reformatted the kit into book form, Creating Joy Filled Visits in the Midst of Alzheimer’s, to give easier, more affordable access to the same helpful information to people all around the globe.

Using the book as a guide, Joy Filled Visits also offers a 4-session class for caregivers – walking participants through a review of Alzheimer’s, the symptoms, the challenges those symptoms can create for engagement, and tips for overcoming those challenges.

Here are reviews from a few participants:
“The Joy Filled Visits program gives an encouraging, fresh approach filled with ideas to interact with your loved one in a fun, personal way.”
“Having a new expectation and new set of tools to communicate with, has [given us] … much happier days.”
“I took care of my mom for years and felt very lost as to how to help her. After taking Julie’s classes, I feel I am better able to help her; and if she is agitated, I am able to defuse the situation and give her a happier time.”

Bio
Julie Bigham, NHCT, began her career as an activity professional in 1993. In 2016 she dedicated herself full-time to Joy Filled Visits, LLC, providing support and motivation for caregivers through training, consultation, and public speaking. She hosts the Joy Filled Visits Memory Café in Matthews, NC, and provides additional support through a free monthly newsletter. She is also a Nursing Home Certified Trainer for Second Wind Dreams®/Virtual Dementia Tour’s NC Grant project.

Connect with Julie Bigham:
julsbigham@yahoo.com
www.joyfilledvisits.com
Twitter: Joy Filled Visits @julsbigham
Amazon: Creating Joy Filled Visits in the Midst of Alzheimer’s

Krysten Lindsay Hager Writes Dementia-Themed Fiction for Young Adults

Reposted with permission from AlzAuthors.com

By Krysten Lindsay Hager

I started writing Dating the It Guy as a romance between a high school girl and the popular senior son of a senator, but I also wanted to include a storyline of having the main character deal with her grandpa’s recent dementia diagnosis. My grandfather moved in with us when I was Emme’s age because he could no longer live on his own. I decided to write about it years later just to get it out. In fact the first time I read a section of it to my mother, she left the room because it was too much to deal with. It’s tough to look back at memories like that sometimes.

So I finished the book, but set it aside for a while. Then two years ago, there was a pitch contest online and I decided to see if there would be any interest in this story. My publisher said she’d be interested in seeing it. At that time I had only published middle grade novels with her and wasn’t sure she’d want a young adult novel from me—after all there are a lot of publishers who aren’t fond of genre hopping. I remember when I sent it to my publisher I mentioned I hoped that this book would help someone else. My publisher wrote, “have I told you I love your writing?”

During the final editing process, I had my mom read the manuscript and told her, “I’m not sure you’ll like this one because it’s very personal, so be warned.” I’ll never forget her calling me and saying it was her favorite book I had written and she felt I handled those scenes with the grandpa with such sensitivity and love. She loved the sense of love and family in it and how I handled it with dignity and that meant so much.

I basically have a peace about what I wrote, but it was very hard putting this book out there. You’re taking a very personal experience and opening it up to criticism from strangers who haven’t walked in your shoes. What made it worthwhile was that the feedback on it has been wonderful as people love the humor and the family bonds. I think having the humor in it helps as that gets you through difficult times and it shows that you can continue to laugh even while going through a storm.

My main goal was wanting to show that dealing with dementia can deepen a relationship and you can love someone deeper when taking care of them. It was hard being one of my grandpa’s caregivers starting as a sophomore in high school until I was well into college, but I loved spending time with him.

Along the way,  I realized that if I went through that as a teen, then there were other teens who had taken on a caregiver role (along with their parents) to a family member. I wanted to give those teens a book that understood what they were going through. Sometimes knowing you’re not alone in a tough situation can help so much and I hope I did that for my readers.

Purchase Dating the It Guy

About the Author

Who knew all those embarrassing, cringe-y moments in middle school and high school could turn into a career? And who would have thought that daydreaming in math class would pay off down the road?

​Krysten Lindsay Hager writes about friendship, self-esteem, fitting in, frenemies, crushes, fame, first loves, and values. She is the author of True Colors, Best Friends…Forever?, Next Door to a Star,  Landry in Like, Competing with the Star (The Star Series: Book 2), Dating the It Guy, and Can Dreams Come True?

Her debut novel, True Colors, won the Readers Favorite award for best preteen book and the Dayton Book Expo Bestseller Award for childen/teens. Competing with the Star is a Readers’ Favorite Book Award Finalist.  Krysten’s work has been featured in USA Today, The Flint Journal, the Grand Haven Tribune, the Beavercreek Current, the Bellbrook Times, Springfield News-Sun, Grand Blanc View, Dayton Daily News and on Living Dayton. ​

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Meet Jack Cohen, author of "Life on Planet Alz"

Reposted with permission from AlzAuthors.com

By Jack Cohen

Life on Planet Alz is a true story about coping with my beloved wife’s devastating diagnosis of Alzheimer’s disease (AD), the terrible scourge of our age. In general, people are living longer and diseases of the aged are becoming more prevalent. The major neurological disease of the aged is in fact AD. Whenever a person is diagnosed with AD, their spouse automatically becomes their primary carer and unwittingly also becomes a prisoner of the disease.

There have been many excellent books and descriptions of AD and its ravages upon the minds and lives of people, so why write another account? Each case of AD is unique and two novel aspects of this account are: the focus on the way that AD imprisons both the patient and their spouse in a constant process of deterioration, and the inclusion of an almost daily journal describing raw incidents that can be enlightening for the reader, and especially for the spouse of an AD sufferer. This illustrates the vicissitudes and the almost total preoccupation that this disease encompasses.

I hope that my particular take on his predicament as a spouse of an AD patient can help those who are dealing with this situation or who may have to do so in the future. It illustrates how the initial shock of the situation gives way to the realization that one has to learn to cope with it, and finally the acceptance that must come with time and experience.

How to describe memory? It’s like a landscape where snow has fallen. At first the surface is white and pristine. But as time goes by people trudge across the field and leave footprints. Then a cart goes by leaving parallel tracks, and then a car drives along the lane, leaving tire marks. Then the scene gets busier, children on bikes on the way to school or to play leave their tire tracks and women going shopping and so on, until the surface is crisscrossed with memories of what had happened. The analogy for Alzheimer’s disease is that all the tracks get inter-twined and mixed up and confusing, and then it all starts to melt!

We live on Planet Alz, which is a different planet to earth. You may think when you see us walking down the street that we look normal, but we are not, we are actually on a different planet. On our planet the normal rules do not apply. Everything is unpredictable, anything can happen at any moment.

The reaction to this book from family, friends, and the general public has been overwhelmingly positive. I self-published this book in 2017, but have not widely advertised it; it is available on Amazon.com.

I was born in London, UK, where I received a PhD in Chemistry from Cambridge University. I moved to the US in 1966 and became a Professor of Pharmacology at Georgetown Medical School, Washington DC. Upon retirement, I moved to Israel, where I was the Chief Scientist at the Sheba Medical Center, Tel Hashomer. Now I am a Visiting Professor of Chemistry at the Ben Gurion University, Beer Sheva, where I moved to be near my married daughter.

My website is at http://jackcohenart.com

My blog IsBlog is at http://www.jackscohen.wordpress.com

Follow on Twitter @Jacksidco