By Rachel Kail

I have always been interested in stories explaining how someone arrived somewhere. Presidential histories are a particular favorite of mine (specifically Abraham Lincoln). But I am equally curious to hear from strangers I find fascinating in my every day. At a post office. In a library. On a street car. I believe there is an unparalleled richness to the lives we each lead, and I love learning about and from others.

For whatever reason telling my own story does not come as naturally to me as listening to others. I struggle to remember the details that would explain how and why I grew up caring about older people. Much of what I recall from my younger years is fuzzy, mostly determined by photos I spotted in my 1980’s scrapbooks or stories my mama shared over time. Occasionally unaided, though, my mind unearths its own beautiful gems. I can see the gold tinsel that I hung next to delicate ornaments on the Christmas tree with Grandma Schaedler at the Chippewa house. I can hear the Royals game playing on the radio next to her blue velvet swivel chair. When I spent time in Columbia hitting garage sales with Grandma Betty, I remember swinging into a grocery store and watching her rip open a bag of chocolate turtles for us to eat while we shopped the aisles. I can still feel my panic as I thought for certain we would end up in jail, but Grandma paid for the empty trash at check out and everyone seemed humored by her tactics. All to say, when I combine the private collection of pictures, stories and memories from my childhood, I see clearly what initially sparked my interest in gerontology. I treasured my grandparents and felt treasured in return.

Looking back, though, I believe my journey has most been shaped by my mother. She has always been my wisest counsel and dearest friend. It makes sense that many of my life choices have positioned me to stay in her orbit. When it was time to care for her mother living with vascular dementia, I wanted to be right by her side. That choice was made even easier because I adored my grandmother.

One of the greatest gifts to me as a young person was having the opportunity to watch my mother love her mother. There was a selflessness to it all, a way of “showing up” that emanated not from a sense of obligation but rather a preferred, devoted commitment. There was a gentle quality to every move she made on Grandma’s behalf. At the core of their relationship was an unconditional love and, though dementia changed a number of things, it never diminished that.

Eventually, I chose to independently study dementia and Alzheimer’s Disease as an undergraduate student at the University of South Florida, graduating summa cum laude with a degree in psychology. Those were formative years in that I discovered my interest in the field of aging went beyond the personal. I spent endless hours learning from elders living with dementia, immersing myself in the mysteries of the brain and delighting in the curious, often joy-filled conversations. By the time I graduated, I had deeply connected to my older friends, their families and the professionals all exploring how to best navigate dementia (in all its complexities).

Shortly after returning home to Kansas City, Mom and I began to put together the building blocks for our dementia trainings as The Edcon Group. Bill Sharp, my step-father who successfully ran a consulting company for decades, guided us through unfamiliar entrepreneurial terrain - and, in great part thanks to him, our work found wings. We began to travel, teach and discover the universal truths about dementia.

But just as our professional life was taking flight, our personal life went into a free fall. Grandma became terribly sick in April of 2004, and Mom suddenly faced those impossible end-of-life decisions that nearly break the heart. Mom was a pillar of strength, though. She has an uncanny ability to think outside of the norms, assess her resources and strike her own path. Instead of moving Grandma from where she was (a small residential memory care home) to a hospital or skilled nursing facility, Mom had her transferred by ambulance to a yurt on our family farm in Ray County, Missouri. Though that sounds like we went wild and chose to camp in the middle of nowhere in a Mongolian tent, the set up was quite remarkable (see the photo at the top of this page). Well, I guess we did actually put a hospital bed inside of a tent lined only with vinyl, but it was awesome. Grandma listened to the frogs at night and the birds by day. She watched white clouds drift across the blue sky overhead through the bubbled window at the top of the yurt - while tapping her toes to Merle Haggard and John Philip Sousa.

Hospice was a phenomenal support, teaming with us to provide the absolute definition of person-centered care. They expected Grandma to die within 7-10 days after moving to the farm, but weeks continued to pass. No one could quite explain what was happening. Grandma was not taking any medication and was hardly eating or drinking, but her spirit was soaring. The nurse visited one week and shared a theory, “We believe she has gotten confused and thinks she has already died and gone to heaven.” Maybe so. Or maybe she was completely delighted to be back on a farm, hearing the nostalgic sounds of her childhood. Maybe she had a few more things to teach us. Either way, Grandma lived four months. She passed away on August 27, 2004, just after her 86th birthday.

I have spent a great deal of time thinking back on that experience. Grandma was honored with a beautiful death because in life she was a beautiful woman who loved her people well. Mom had the courage and resources to create an end-of-life for her that was extraordinary, and, as a result, we had the most unbelievable opportunity to learn and grow. Two weeks after Grandma died we spoke at the Eden Alternative International Conference in Tacoma, Washington, and that one presentation launched us into the Pacific Northwest including Alaska. It was like a cascade effect after that, working all over the United States and venturing into many other countries, as well. Grandma’s story literally traveled the world and, as three generations of women, we worked to positively change the perception of possibilities and empower people to provide better dementia care. That period of time was one of the greatest rides of my life.

And then I had a baby! Talk about jumping from one fast moving train to another fast moving train going in the opposite direction. Truth is I was excited to become a parent. Occasionally, Mom and I presented at a conference (like in Soldotna or Montreal) or worked locally, but I primarily focused on being a stay-at-home mom to two amazing boys. Nothing for me has been as fulfilling or rewarding like the privilege of caring for my sons.

By January 2020 I felt ready to shake things up and decided it was time to get my masters in social gerontology. I knew that I wanted an advanced “ology” degree relative to aging, so this was a perfect plan. But at that point it had been sixteen years since I had experienced life as a formal student, and I was completely terrified. Self-doubt magnificently tangoed its way into my psyche, but I determined to ignore its ominous sound and fancy footwork. I would not let fear hold me back. I would not let anything stop me from getting this done.

Hello, global pandemic.

Yikes. I guess no stage in life is perfect, right? Buried deep down I managed to find some fortitude. I homeschooled the children for 18 months, paced my study for each course, eventually rehabilitated my mental health (which had tanked) and graduated in December 2022. Reaching that finish line was easier said than done. The brain is quite convincing when it begs to quit something that is difficult. Fortunately, my heart was even more convincing. Those three years built an intellectual strength and academic curiosity in me that I had not anticipated. I cannot read enough of any article or book having to do with pretty well anything related to the experience of growing older. The psychology of aging, longevity, end-of-life, autobiographical life review, loneliness and social fitness are examples of what peak my interest now.

All of the backstory that I have shared here feels good to reflect on, but it also feels incomplete. How could it not? This puzzle is definitely not a 9-piece puzzle.

I see faces and places when I think about all that has led me to who I am right now. Dorothy Dome, Dr. Dan Kahler, Mary Arthur and Chloe Lee Brott were major elder influences (to name a few). Jane Verity, Bill Thomas and Teepa Snow were next-level teachers. The Pioneer Homes throughout Alaska and CrossReach in Scotland quite literally carved into my heart. I am forever grateful to the people and for the experiences that have shaped me.