By Oran Aviv
A Mile at a Time is a remarkable memoir that follows the lives of two exceptional individuals: a father and son, both belonging to the elite group of world-class endurance athletes that epitomize resilience and determination. However, their lives take an unexpected turn when Mace, the father, receives a diagnosis of Alzheimer's disease. I couldn't help but be moved by their journey.
In this blog post, I will share my takeaways from this remarkable account of how Mace participated in the race despite having Alzheimer's. I was especially inspired by how this beautiful family navigated the complexities of living with dementia and gained insights that many of us in the dementia field have taken years to understand.
Doing the Impossible
In the book A Mile at a Time: A Father and Son's Inspiring Alzheimer's Journey of Love, Adventure, and Hope, by Mark "Mace" Macy, Travis Macy & Patrick Regan, the heart of the story lies in the extraordinary decision of the father and son to participate together in the world's toughest race, the Eco-Challenge Fiji. This decision comes despite the challenges posed by Mace's Alzheimer's diagnosis.
How can someone who struggles to put on his own shirt manage to run up mountains, traverse waterfalls on ropes, cycle through mud, and navigate rapids, all within the jungle's depths?
Take a look at this clip from the race's promotional material to get a sense of the immense difficulty faced by those daring enough to attempt it. Now, picture engaging in this race with cognitive impairment and confusion. (Press pause after watching so you don't have to hear ads as you continue scrolling down to read this blog post.)
Wow - Hard to believe someone living with Alzheimer's did this! While racing, Mace found himself in his element; however, during the evenings, confusion often set in. Once, in the dead of night, he awoke and wandered into the jungle because he couldn't recognize his surroundings. On another night, his behavior turned aggressive.
Throughout the book, we learn that in an endurance race like the Eco-Challenge, team members are in a constant state of problem-solving. This same spirit carried over when dealing with Mace's confusion.
Discovering how the race team tackled the challenges of having a teammate with Alzheimer’s is undeniably inspiring. Merely participating in this race posed an incredible challenge, much like the challenge of coping with Alzheimer’s itself.
Build A Team
Facing Alzheimer’s, Mark "Mace" Macy and his family confronted it much like they would a challenging race – by assembling a team. This team consisted of family members, friends, and medical professionals, all dedicated to supporting Mace.
Mace was left disheartened by his initial doctor, who unfortunately, as many in the medical profession often do, advises those diagnosed with dementia to "put their affairs in order" and spend time with their family.
Another doctor, claiming the ability to reverse Alzheimer’s, prescribed a daily regimen of 50 supplements for Mace. Mace adhered strictly to this regimen, but after 6 weeks, the family observed not only a lack of improvement but also a decline in Mace's cognitive abilities. Consequently, the family chose to discontinue the program.
They embarked on a search for a medical team that held a more personal approach and grasped that an endurance athlete like Mace was not content to stay home and await the inevitable.
The doctor who joined their "Team" understood Mace very well. He even approved Mace's participation in the Euro Challenge. This doctor comprehended that while participating with Alzheimer’s was risky, being a part of this race could potentially be the most beneficial choice for Mace.
Stay Positive
To be an endurance athlete, Mace’s son, Travis Macy, teaches that you must stay positive when you race rather than fall into the trap of hearing only the negative stories. He explains that we can change our thoughts and understand that those thoughts, especially negative ones, may not be true. The family followed this advice also when dealing with Mace’s Alzheimer’s diagnosis.
The family felt it was important to be surrounded by positive people. For this reason, they left an Alzheimer’s support group because the group only focused on the negative aspects of caregiving. Rather than talk about the positive side of caregiving or how to help, the group only discussed how terrible it is to be a caregiver of someone living with dementia
This is something that perhaps others should think about too. Many of the Alzheimer’s and other Dementia online support groups are truly safe places to complain and let out steam to other caregivers who can identify with and understand the challenges of caring for someone with dementia.
However, many of these groups can easily become places of negativity by only sharing the difficult moments. This causes others to expect the same experience too. When you are surrounded by positive people your whole outlook is different and caregiving will also become a more joyful experience.
Staying positive is important for both the family and the person living with dementia. I enjoyed this quote in the book about not letting negative emotions consume you:
Depression, anxiety, and anger may get seats in the car,
but they don’t get to drive.
Focus On What You Can Do
A central message in the book, directed at both those living with dementia and their family members, underscores the significance of concentrating on a person's remaining capabilities rather than becoming disheartened by their limitations.
For instance, the father, Mace, found himself unable to independently drive to the gym anymore, a change that left him frustrated and resentful. Yet, he managed to shift his perspective, choosing gratitude for the ability to still engage in workouts at the gym.
Frequently, I encounter families of individuals with dementia who become so consumed by their loved one's lost abilities that they fail to recognize the person's existing potential.
As someone unfamiliar with the person before their dementia diagnosis, I can approach them as they are today and accept them as they are today. This approach enables us to uncover their current enjoyments, be it activities, conversations, or interests, and engage accordingly. It is equally important for family members to acquire this skill.
Within the book, Mace emphasizes that for his mental and physical well-being, he must persist in activities like running and biking, even if he is only able to cover shorter distances. He highlights that for others, their passion might lie in art or music. What is important is nurturing these passions to the best of their capacity. This practice aids in preserving one's identity and averting decline.
A recurring, pivotal line in the book reads:
As fast as we can, as slow as we must.
This mantra encourages us to do our best when racing and to also live life to the fullest, but to be aware of our limitations.
Escape to Nature
Wendy Mitchell, who has lived independently with young-onset Alzheimer’s for 9 years, is not only a lecturer and blogger but has also recently published her third book since her diagnosis. Wendy finds solace in the great outdoors. (Learn about Wendy Mitchell's teachings here)
Each morning, weather and brain fog permitting, Wendy embarks on a walk and captures photographs that she incorporates into her blog posts. Through this routine, she has cultivated mindfulness toward her surroundings, finding comfort in the fact that nature remains the same even if we are changing.
Travis Macy offers his insight about the importance of nature:
Immerse yourself in nature to shrink yourself and your troubles.
The vast expanse of nature serves to diminish both us and our problems.
He adds that in the city you are constantly reminded and judged by your cognitive changes, but nature does not care. Being out in nature can feel safe for someone living with dementia.
Have a Reason to Get Up in the Morning
I've heard this sentiment echoed by many older individuals in their 90s and 100s: the importance of having a reason to wake up each morning. This reason could be something as simple as tending to a garden, spending time with grandchildren or great-grandchildren, or taking a leisurely walk to appreciate the beauty of nature.
Similarly, people who are living with dementia also need a reason to start their day. Unfortunately, in many instances, they lack such a reason, which can lead to withdrawal and a sense of aimlessness.
Travis Macy encourages everyone, regardless of cognitive impairment, to always have a plan for something significant they can engage in. Instead of participating in an eco-challenge race like him, his father opts for a hike up the hill near his home. If someone can no longer travel independently, they can explore organized tours, and if academic journals become inaccessible, they can read stories to their grandchildren.
While reading an article about this book, I read about an older man who since his Alzheimer’s diagnosis, had been passively sitting on his couch, slowly fading away. However, after watching on TV Mace's participation in the Eco Challenge, he found renewed motivation and began exercising again. He discovered his reason to get up!
Conclusion
This inspiring book holds a wealth of wisdom and advice that you should explore for yourself. Here is one final example:
It never always gets worse
College Professor David Horton coined this phrase and Travis Macy feels it is about running and about life. He explains,
Sometimes all data suggests that things can’t possibly get any better, but … there is a chance that things may get better. For Dad and me acceptance has increased, and anger has decreased a couple of years after diagnosis.
I personally experienced this memoir through its audible version, which includes voice clips of both Traver and his father Mace.
A Mile at a Time is an inspiring memoir about adaptation and working as a team in order to allow Mace to race with Alzheimer's, but what truly shines within this book is the theme of love. Love permeates every page - the love of sport, the shared love between father and son, the love within the family, and the love of friends. When you are surrounded by so much love and give it in abundance, then anything is possible.
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