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Finding a Path with No Guiding Light: Lessons from Dementia

Perhaps you’ve seen my emails and social media posts about the “FRW Five for Life” – cajoling you into joining me in this healthy journey. And perhaps you’ve wondered, why listen to me when there are literally hundreds of books out there with very similar lifestyle advice? I certainly wouldn’t blame you for wondering about this semi-crazy runner from Kansas – after all, I wonder about myself on a daily basis. And the truth is that I don’t actually care where you get your healthy living advice from as long as you take it seriously. But while you’re here, let’s talk. And let’s talk about how there are so many unknowns in life, so many factors at play in our health, and random events over which we have no control…and yet how important it is to maximize those factors over which we CAN exert control.


Because in spite of the struggles many of us face when exercising or choosing what to make for dinner, the reality is that we do have the ability to make small decisions about our health on a daily basis that, over time, can make a long-term, substantial difference in our lifespans and our risk factors for chronic disease. You may have read a previous blog post I wrote about my mother’s passing in 2017 from Lewy Body Dementia – “The Enduring Memory of Grief”. And so you may be familiar with my story, how I finally made the decision to go back to school to pursue a second career in the fitness and wellness industry. But today I want to take you a bit deeper into the WHY – the why it was so very important to me to not only live out my dreams, but also why I feel compelled to share the message of healthy living with anyone who will listen.


The first time I really noticed subtle signs of my mother’s illness was when she and my father were visiting in the summer of 2013. They came to be there to meet their grandson, and I – having gone through a long, hard labor that ended in an emergency c-section – was hardly at the top of my mental game. To say I was distracted (and tired!) was a serious understatement, and yet, there was a current of unease, the slow unraveling of something dark and dangerous, in my interactions with my mom during that – and subsequent – visits. I clearly remember those early conversations I had with my father and brother, in which we all tentatively danced around her confusing behavior, unsure if it was just mom being a bit extra kooky or if there was something more serious at play.


One of the worst memories I have of those last years with my mom was a visit to a neurologist in 2014 – an appointment which ultimately led to her official diagnosis. After months of very confusing behavior and obvious loss of memory, we took her to be “interviewed”. In other words, the doctor asked her about her family members, friends, life, etc. And my mother, scared out of her mind and wholly unable to articulate this fear, was clutching a piece of paper on which she had written her grandchildren’s names like it was her last lifeline. I found it sad at the time, but it’s only in retrospect, now knowing just how scared she must have been, that I realize the full devastation of that one moment. Even sitting here writing this brings tears to my eyes, and I would give anything to go back and hold her hand again, to tell her I was there for her and that I understood how scared she was. To do something – anything – to make things even a little more bearable for her.


Because the thing about dementia is that it’s confusing for the family members, too. When my mother first started getting confused about names and who people were, we all instinctively corrected her, which led to frustration and confusion on her part. I now know that we were remiss in our approach, but if you’ve never dealt with dementia before, it’s a bit like wandering into a dark forest blindfolded – you have no idea, literally, what waits around each new corner.


My mother’s condition deteriorated quite rapidly, and though I spent weeks at a time in Kansas – both to be with her and to provide some assistance for my father, her primary caregiver – the truth is that we had already been through the grieving process at least once, if not multiple times, by the time she slipped into a coma at the end. I was fortunate enough to be by her side in those last days, when she was so unbearably thin and unresponsive. It helped to know that she was surrounded by loved ones – our immediate family and her wonderful friends – but that knowledge certainly did not stop me from cursing whatever being introduced dementia into this world. I truly hope most of you who read this post have never lost a loved one to dementia, and I hope you never will. But I do encourage all of you to understand that my tears right now are not just about my mother, but about the fact that dementia is largely preventable and yet there is so little education about how or why we should care. I do say “largely” – yes, there is a certain genetic component, a genetic component that scares the daylights out of me – but the reality is also that dementia is virtually nonexistent in all five of the original blue zones of the world. So doesn’t it stand to reason that, by investing our energies in our health – ALL aspects of our health – we may just be ensuring a better future for ourselves and our loved ones?


Please consider donating to the Lewy Body Dementia Association. Alzheimer’s is equally devastating but typically has far more media coverage, so let’s share the resources and work together to provide the education needed to build a healthier world.

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