Brandon, Jesse and Lila Martz’s father, Brian, was diagnosed with younger/early-onset Alzheimer’s in 2016 at the age of 60. The siblings’ paternal grandma also battled the disease when they were young. “When our dad’s memory started to fade,” says brother Jesse, “I think we all knew this was coming.”
Running for Dad
The TCS New York City marathon holds a special place in the hearts of the Martz family. “Our maternal grandparents ran the marathon more than 10 times,” says Brandon. “Growing up, we would travel from our home in Long Beach, New York to New York City and run a mile alongside them during the race. It was a big part of our upbringing.”
Running continued with the next generation. Brian was also a lifelong runner until about 10 years ago when he had issues with his spine. Today, in the midst of his Alzheimer’s battle, he talks about how much he misses running.
When a friend encouraged Brandon and Jesse to take on 26.2 miles in their dad’s honor and to raise funds to support the work of the Alzheimer’s Association, the brothers realized there is no time like the present. “We thought: ‘How much more time will dad be able to enjoy this, understand it, get excited by the prospect?’ We called our sister Lila, because we knew we had to do this as a trio, for our family.”
Lila was more reserved about the decision.“I was still grappling with the past few years of Dad’s disease, and asking for donations was scary to me at first.” Ultimately, the fact that their dad loves running and seeing the trio of siblings together won out. “That outweighed any insecurity or fear and helped me process my own thoughts about the disease and do something from the heart. It was the best decision I ever made,” says Lila.
Training for the marathon together brought the trio even closer, and seeing the excitement on their dad's face was “worth every single bit of training.” As the siblings raised funds, they also saw an outpouring of support. “Posting on social media and sharing our story led to people reaching out to share their own experiences with Alzheimers, and offering us their support. This thing I was afraid to do ended up being one of the most important things I have ever done, and to do it alongside my brothers, for my mom and dad, means so much,” Lila says.
There was no lack of excitement on race day. “We high fived throughout! It felt like the crowds were there specifically for us,” Lila adds. One of the most notable highlights of the day was when Brandon did a little backtracking. “He came mere seconds from breaking a 4-hour marathon,” says Jesse, “but ran backwards to rejoin me and Lila so we could all pass our mom and dad together. Because of that, at mile 19, when we saw our parents, we were able to greet them together as they cheered from the sidelines.” And when Lila saw all of her friends on First Avenue in New York, she could hardly contain herself. “I did everything they say not to do: fist pumping, screaming, doing high knees. It was definitely a big moment.”
The trio ran the first 19 miles together, with their final times clocking in at 4 hours (Brandon), 4:04 (Jesse) and 4:06 (Lila). “Lila came in the top 22% of all the female runners,” Jesse says proudly. “We were in this together from the beginning, and we were going to finish strong.”
Facing the Challenges of Alzheimer’s as a Family
The siblings are united in their running, and in caring for their father. “When we spend time with our dad, we simultaneously give our mom respite,” says Brandon. Jesse lives minutes away from his parents, and Lila and Brandon come home often.
The siblings call their dad a quirky guy, unabashedly unafraid to be himself, while approaching life in a kind, gentle, thoughtful and inquisitive way. “He values honesty and is a man of integrity. He instilled that in us all at a very young age,” Brandon says. Looking back, the siblings agree that this is why they have very honest relationships with each other, which has also aided them on this journey.
“Dad isn’t afraid to wear his heart on his sleeve. The honesty and transparency he instilled in us has made us stronger as a trio in this fight. We work as a team,” says Lila. “Brandon stays logical, and can focus on things like finances; he is also so good at being there for our mom. Jesse can break dad out of a funk if he's feeling anxious, and will take him on walks to enjoy the sunset. I get a pass, as the only daughter.”
Jesse adds, with a smile: “The favorite child is Lila!”
When asked what they wish they knew about this disease prior to their dad’s diagnosis, Brandon shares, “I wish I knew it was coming, because I would've paid closer attention to small changes. It’s a good reminder that things change; nothing is constant. Be appreciative of what is valuable in your life while you have it.”
Although she didn't initially understand the gravity of her dad's diagnosis and the path it would lead the family on, Lila says, “I felt like I had lost my dad as a parental figure before I had time to prepare for the emotions that would come along with that. I have to prepare myself each time I see him, because I know each visit will be different, that he will be different. Things don’t get easier. The reality is that things will only feel more personal as the person forgets things about you. But remember that it is the disease at work, not your loved one.”
Today, the trio focuses on enjoying each moment with their dad. “In a way, it is a gift, to have this time. We are going to miss him so much one day … there are parts we already miss,” says Jesse. “And after we visit Dad, we can go back to our lives, because we have an amazing mom who gives us this ability. We are all so thankful to her. She is there 24/7. Our mom is a huge piece of this puzzle. You can’t do this alone.”
“As our dad’s primary caregiver, our mom is the one who sacrifices the most so our relationship with our dad can be fun, and on our terms,” Brandon echoes. “She is as incredibly selfless as our dad has always been, always focused on the needs of her kids. Despite all we have been through, we are some of the luckiest children — and siblings — around.”
About: Siblings Brandon, Lila and Jesse Martz raised more than $41,000 that contributed to $444,000 raised in the fight to end Alzheimer’s by 85 runners at the 2021 NYC Marathon. Visit their fundraising page.