Today we’d like to introduce you to Alder Allensworth.
Hi Alder, thanks for joining us today. We’d love for you to start by introducing yourself.
I am passionate about life and life experiences. I am a citizen of the world, I grew up in a Navy family, so I learned about flexibility, tolerance, taking risks and making the most out of your current circumstance. I learned that all people everywhere had the same fears, hopes, dreams and passions. As a health care professional, it is my passion to share those experiences with others, give them hope and the tools to stack the deck in their favor.
Growing up in a Navy family taught me the importance of family as a unit of support. With Dad serving in the Vietnam War, sometimes it was downright scary. However, our family stuck together during those challenging times. One of my earliest memories was when I was seven years old. Mom was in the hospital and Dad was on an aircraft carrier in Vietnam. Our extended family and friends pulled together to make sure everyone in our family was taken care of.
In 1990, I was diagnosed with a rare disfiguring and usually fatal cancer, adenoid cystic carcinoma of the lacrimal gland. In 2000, I had an opportunity to sail a 12-foot boat around Florida and up the east coast. This trip was to raise money and awareness for sailors with disabilities. The trip was followed by CNN and when I returned to Florida, I met with a small group of passionate people and started a sailing program for people with disabilities in Clearwater, FL., Sailability Greater Tampa Bay. MY family and friends stood by me every step of the way.
In 2017, I wrote an award-winning book about the sailing trip in 2000. The book also chronicles my journey through cancer. Also, in 2017, I walked the Camino De. Santiago, a pilgrimage across northern Spain. This adventure gave me further clarity on life. In 2019, I wrote a book on coping with cancer. Coaching people who are coping with life-altering diseases and disabilities is my passion.
I have carried this ideal with me throughout my life working with people in crisis as a professional therapist and as a nurse. One of the biggest crises my family went through was when my Mom was diagnosed with Alzheimer’s disease in 2003. Dad covered up for her for a long time. His life revolved around her. One weekend when I was visiting, he pulled me aside in the kitchen and confided to me that everything in their lives was falling apart. He could not cope with her, the family finances, housekeeping, the yard and those hundreds of tasks it takes to maintain life on this earth. As the oldest child, I knew I had to step up. They had always been there for me, and now it was my turn to be there for them.
It was incredible how our extended family and friends pulled together to make sure my parents were safe and cared for. I was comforted to know the youngest of the grandchildren to the oldest neighbors were checking in on them. Concerned family and friends called them on the phone throughout the day and at night to make sure they were safe. For the last two months of my Mom’s life, I cared for her in our home with the help of hospice care. After Mom died peacefully in 2010, I was motivated to write a story about Alzheimer’s to help children understand the disease. I wanted to show children how to make a positive difference in the life of their loved one who has Alzheimer’s. In 2014, my Dad had a stroke causing vascular dementia. With the help of hospice, I also provided end of life care for him in our home until he died in 2017.
Would you say it’s been a smooth road, and if not what are some of the biggest challenges you’ve faced along the way?
This whole process has been quite the creative evolution. I started with an idea for a children’s book based on true story interactions between my Mom and her granddaughter, Olivia. The story had magic and intrigue woven in with many of the behaviors of Alzheimer’s. The main character, Mackenzie, became the hero by figuring out how she could still have fun and love her Gran who had the disease. In 2016, I was chatting with my good friend Brenda Freed, a fellow music therapist. She and I did our music therapy internships together at Western Missouri Mental Health Center in Kansas City, Missouri in 1979. Brenda loved the concept of the project and offered to edit the book. Heaven knows I needed an editor since I just scraped by in English in school. Brenda soon became a co-writer because we complement each other’s strengths and skills: she is a detail person and I am a big picture person. For years we’ve talked about how fun it would be to collaborate on a project, and have even tossed around a few ideas. The organic coming together for this project just felt right.
We wrote a 7,500-word chapter book. Being music therapists, we envisioned offering a download link for an original song to supplement the story of the book. Besides her experience working in the field of music therapy, Brenda is a private music instructor and performing singer songwriter. Together, we wrote the Mackenzie Meets Alzheimer’s Disease Story Song to accompany the chapter book. Then, we decided the lyrics for the story song could be the text of a 500-word picture book, which would serve pre or early readers. This would give us two products to market to different age groups and levels of readers!
Brenda’s young voice student, Evelyn Hawk, was the perfect singer for the song. Along with other musicians and the recording, mixing and engineering of her husband, Michael D’Eath, in their Moondance Recording Studios, the song was recorded. We knew our catchy supplemental song would be a wonderful way to inspire children to understand Alzheimer’s, and help them have more meaningful interactions with a loved one who has the disease.
Meanwhile, in 2017 we got our chapter book illustrated by a friend of Alder’s and we joined writing organizations where we both got critiques of our manuscript. We learned that children’s books had specific formats for specific age groups, and guides on using age-appropriate words. We applied everything we learned to the re-writing of our chapter book.
During the re-writing process, we were looking for agents and publishers. We found plenty of “publishers” who would take our money and put the book in print, (without ever having read it or listened to the accompanying song we had written). We were presented many opportunities to basically self-publish our books, but realized that didn’t mean the book would reach the wide audience of people who needed the information in the story. Then, we attended children’s book and illustrator conferences to learn more about children’s book writing and the publishing process. We learned publishers did not want anything didactic, a word we heard in criticism of our book idea over and over. What? Children’s books don’t want to be teaching anything? We learned children’s book publishing is a very competitive world and, like everything else, it’s all about book sales and the market. We found that agents and publishers thought we had an interesting and “timely” concept, but had little faith our books would sell.
We thought we had a breakthrough in 2018 when one major publisher came close to taking on our project, but wanted our book to be much longer. They did not seem to understand that our book was meant to be a fun and fast read for young readers. We imagined this scenario: “We’re going to see Gran who now has Alzheimer’s disease. Let’s listen to this song and read this book that will help us understand the disease and how to interact with her.” We did not want a child to have to spend days reading the book, and we intended it to be for 10-year-old and younger children who have the hardest time understanding Alzheimer’s. Also, in 2018, we learned another children’s book with Alzheimer’s as the topic had been released with a Gran character that looked exactly like ours had been illustrated! Going back to the drawing board to find another illustrator was going to be an expensive process.
We looked at the books on Alzheimer’s disease for children on the market at that time, and they (there were only about 4) mainly focused on the person with Alzheimer’s losing their memory. The disease is much more than that! Children have to cope with experiencing a loved one not only forget things, but also get angry, frustrated, lose the abilities to walk, talk, eat and use the bathroom, and then die. We wanted our book to better prepare children by covering more than just the memory loss associated with Alzheimer’s. We also wanted to help children maintain a relationship with their loved one who has the disease by providing activities they could do to enjoy interacting with their loved one at any stage of the disease.
In 2018, Brenda shared our Mackenzie Meets Alzheimer’s Disease Story Song recording with a friend who is a retired elementary school teacher. She loved the song and enthusiastically suggested we get the song animated. Alder had been working on an educational video to supplement our books, so we decided to morph into a video-focused educational program. After interviewing several animators, we chose William Banda of 3D Giants Animation Studio. He happens to be caring for his father with a progressive neurological disease and was the only animator who even commented on the song. He liked its catchy melody and understood its purpose. William animated the song and the Mackenzie Meets Alzheimer’s Disease Story Song came to life as an animated music video! It was important to us that the characters in the story song video be multi-cultural because Alzheimer’s disease affects everyone; all skin colors and cultures. William is from Africa and brought just the right touch to the project.
Once we had the animated Mackenzie Meets Alzheimer’s Disease Story Song, we decided we also wanted people with hearing impairments to benefit from the video. So, William created a lyric video of the animated Mackenzie Meets Alzheimer’s Disease Story Song, which also serves early readers.
For the original book idea, we were going to include a section in the back with a list of activities to do with someone who has Alzheimer’s. We were also going to offer other guidance for parents. We learned in 2020, about a dozen new children’s books on Alzheimer’s had been published since our original research, (although none with a supplemental song as we had planned). This affirmed the need for such books, but also affirmed our decision to evolve into making educational videos.
Brenda and I wrote and created the Mackenzie Meets Alzheimer’s Disease Educational Video Series to provide in-depth information to children and their families. The five videos are: What is Alzheimer’s Disease?; Mild Stage Alzheimer’s Disease; Moderate Stage Alzheimer’s Disease; Severe Stage Alzheimer’s Disease, and Coping with Alzheimer’s Disease for the Responsible Adult with Children. We offer written transcripts of each of the videos in the Mackenzie Meets Alzheimer’s Disease Educational Video Series for people with hearing impairments. We also provide a Mackenzie Meets Alzheimer’s Quick Reference Guide so parents can easily access activities for their children and families to do with the person who has Alzheimer’s at each stage of the disease.
In the wings as follow-up releases for the project, are an ebook picture book using the song lyrics as the text so children can read it at their own speed; an activity book for the three stages of the disease; a songbook of public domain songs that might be familiar to a person with Alzheimer’s, and two more original songs encouraging children to sing and interact with a person who has Alzheimer’s.
One in three adults over 70-years-old have dementia. According to the Alzheimer’s Association, over 6 million Americans have Alzheimer’s disease. We know more resources are needed. As a professional who works with families of people who have Alzheimer’s, and from my own personal experience, I know how challenging the disease is for families. By providing families tools and resources to help their children understand, cope with, and participate in the care of someone with Alzheimer’s, we believe we are providing a much-needed service from diagnosis through the severe stage.
Brenda and I have worked over six years on this project and look forward to getting these tools and resources to families who have a loved one with Alzheimer’s disease. We are excited to release the animated Mackenzie Meets Alzheimer’s Disease Story Song video and lyric video, the five videos in the Mackenzie Meets Alzheimer’s Disease Educational Video Series and the Mackenzie Meets Alzheimer’s Quick Reference Guide in June of this year!
The FREE Mackenzie Meets Alzheimer’s Disease Story Song Animated Video is accessible to anyone on our www.MackenzieMeetsAlzheimers.com website where one can also purchase the five educational videos and other available products as a package.
Thanks for sharing that. So, maybe next you can tell us a bit more about your work?
I started my career as a Music Therapist working in gerontology and medical rehabilitation. As the insurance and reimbursement climate changed, I too, had to change professionally. I got a master’s degree and added Licensed Counselor to my credentials and went to work for hospice. Medicare changed their reimbursement rules and I realized I had to go back to school to remain viable in the field of making a positive difference in people’s lives. I chose to get credentialed as a Registered Nurse. I currently work in gerontology and rehabilitation as a nurse. I use all the skills I have gathered over the past forty years to provide people resources, to care for their mind, body and spirit.
I am known for my quiet, steady, compassionate manner, and for addressing the whole person. I know how fear can manifest physically and how debility can add to fear and depression. I have studied traditional and non-traditional healing techniques so I can give my patients my best.
I am so proud of being part of incredible teams of people, friends, family and professionals. You just can’t do it alone in life. Every successful person has an incredible supportive team of people to lift them up. It is this ability to build teams of like-minded people to make positive differences in the world that sets me apart. As they say in the nautical world, “All boats rise with the tide.” My first international project with a great team of people was creating Sailability Greater Tampa Bay, a sailing program for people of all ages and abilities. We partnered with a group in Australia and CNN followed the progress of the program. We are still putting people with disabilities on the water.
This Alzheimer’s project would never have happened without Brenda, her husband Michael and all the other supportive people playing their roles. We hear the pain every day from dedicated caregivers, families and people with Alzheimer’s and want to give them tools to improve their relationship with their loved one throughout all stages of the disease.
How do you think about happiness?
Being part of a team of people who are making a positive difference in the world makes me happy. I have been part of many different teams and projects over the years and I have learned what Margaret Mead said years ago really is true: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that has.”
Creating this project to help families cope with Alzheimer’s has given me great happiness. The complete Mackenzie Meets Alzheimer’s Educational Program is available on our website for our introductory price of just $47.00. The complete program includes the five videos in the Mackenzie Meets Alzheimer’s Disease Educational Video Series:
• Coping with Alzheimer’s Disease for the Responsible Adult with Children
• What is Alzheimer’s Disease?
• Mild Stage Alzheimer’s Disease
• Moderate Stage Alzheimer’s Disease
• Severe Stage Alzheimer’s Disease
• The Mackenzie Meets Alzheimer’s Quick Reference Guide
• Written transcripts of all the educational videos for people with hearing impairments, and
• Mackenzie Meets Alzheimer’s Disease Story Song Animated Lyric Video for people with hearing impairments, and for early readers.