Mark (Mace) Macy isn’t prone to complaining. The 67-year-old Coloradan and former trial attorney has been an ultra-endurance athlete since 1986. He’s competed in the World’s Toughest Race: Eco-Challenge Fiji. It’s not unusual for him to run 100 miles on snowshoes or 146 miles in the desert.
How does he get through those kinds of grueling challenges? “We get through this by laughing,” he said. “I know that sounds odd, but that’s how we do it.”
Mace is facing a new challenge today: Alzheimer’s disease. But his approach is no different than it would be if he were competing in Ironman Hawaii.
“I try not to think about it all the time,” Mace said recently. “What I’ve got to do is just go and don’t quit. There are certain things in everybody’s life they’ve got to do, and I’ve got Alzheimer’s. My life may not be what I want it to be. There are hard times, but I’m not quitting.”
A strong support team
Just as Mace experienced in his adventure racing career, he is facing his Alzheimer’s diagnosis with a strong support team: his wife of 43 years, Pam, son and adventure-racing partner Travis, and a core of family and friends who are with him every step of the way – often literally.
“He has three retired friends who like to go out for a good run,” said Pam, noting that Mace runs “most days of the week, rides a bike most days, and swims most days – except when the pool is closed” for coronavirus.
While Mace says “racing is not as important to me as it used to be…after a while you don’t feel like running 100 miles…,” he did compete in 2019 on son Travis’ Team Endure in the World’s Toughest Race: Eco-Challenge Fiji, which involved 66 teams fighting their way through remote backcountry terrain, 24 hours a day, with only a map and compass to guide them.
"To do this race with my dad was a priceless, once-in-a-lifetime experience,” said Travis. “One of the things I admire about my dad is that he keeps pushing himself.”
Pam agreed that the family’s orientation is to keep moving forward, despite any obstacles.
“On the days when we have something on the calendar, that’s a good reason to get up and out the door,” she said. “When there’s nothing scheduled, we look around and create things. We have to find our own ways that work with our own families.”
Travis also noted that the Macy family follows the approach that dad Mace established in his athletic exploits.
“There’s two facets to our mindset: team orientation and strength-based focus,” said Travis. “For us, those things come naturally. Everyone within the team is willing to give and accept help.”
Accepting specialized help
The Macys recognize that they’re moving into uncharted territory with Alzheimer’s. It was totally unforeseen. For a time, they assumed Mace may have been starting to experience cognitive impacts related to multiple concussions experienced over his athletic career. And he wasn’t willing to accept the diagnosis at first.
“I’m fit and strong,” said Mace upon hearing the diagnosis. “I’ve been good to people. How could I have Alzheimer’s? I don’t deserve this. I was shocked beyond belief.”
Not looking too far ahead
The Macy family realizes that it is entering unchartered territory – at least for them. There are others who have traveled this path, and the Macys have turned to the Alzheimer’s Association of Colorado for some support along the way.
“We took some of the Alzheimer’s Association classes early on and did a few sessions with a support group,” said Pam. “We’ll likely try another support group as we move ahead.”
Travis and Pam particularly enjoyed connecting with Sue Pyle through a support group in Evergreen. Pyle, who happened to be a teacher at Travis’ elementary school decades ago, lost her father to Alzheimer’s years ago but continues to attend the group with a contagious, optimistic, “focus on the good” mindset. “Talking with Mrs. Pyle,” Travis said, “I realized this journey doesn’t have to be all about loss. It can also be about teamwork, optimism and growth.”
Like many families dealing with the disease, they have had to navigate challenges with the health of the primary caregiver: Pam. Around the time of Mace’s 2018 diagnosis, Pam was dealing with serious kidney disease that required a transplant. And, in the spirit of giving back, Mace donated one of his kidneys to a farmer in Kansas, an action he wanted to complete before his diagnosis was finalized.
“In the hierarchy of needs,” Travis noted that his mom’s kidney required immediate attention.
Pam’s kidney transplant helped stabilize and improve her condition, so the team has turned its attention to Mace.
“We’re trying not to jump too far into hypotheticals,” said Travis. “You want to be ready for a gradual transition of roles, even if it’s coming sooner than expected. It was hard for me (to hear the news of dad’s diagnosis), even though I’m in my mid-30s with two kids. Now I really need to be an adult. You have to dig deep.”
Pam and Mace observed that among their new circle of friends who also are dealing with Alzheimer’s, not all are coping well.
“We know one family where the children don’t accept what’s happening to their parent, and the spouse is frustrated because there’s things this individual can’t do anymore,” said Pam.
The Macys offer their support to their friends – and to one another – as they accompany Mace on this new adventure. Mace and Travis are working on an inspirational memoir about the Alzheimer’s journey and World’s Toughest Race that they hope to see on shelves in 2021.
“My perspective, as a caregiver, is that you have to look ahead to some extent,” said Pam. “It’s an unknown progression. But you have to stay in the present and do what you can, which is a lot. As things change, we’ll figure it out. Every plan doesn’t have to be in place. We’re focused on relationships – and joy.”
To learn more about Alzheimer’s Association programs and services, which are provided at no cost to families, call the free 24/7 Helpline at 800-272-3900, or go to www.alz.org/co
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.