Debilitating dementia has family focused on living each day to fullest

This year’s Tour De Bar beneficiary is the Larry and Erica Largent family, with daughters Lylah, 11, Maura, 8, and Alyse, 6. The family has a CaringBridge site at www.caringbridge.org/visit/larrylargent for anyone wishing more info. There are links to FTD and a GoFundMe account under Ways to Help on the site. Larry and Erica are White Bear grads, class of 2002.

As his mental capacities decline, Larry Largent’s wife Erica and his mom Jenny lean on each other to carry on their unexpected and untimely role as caregivers. 

“We cry a lot and support each other,” said Jenny, who moved to Campanaro Lane with husband Larry Sr. and their five children more than 30 years ago. “We try not to cry at the same time. We’d get nowhere.”

Larry Jr. graduated from White Bear Lake High School in 2002, then pursued two master’s degrees, graduating summa cum laude from Bethel Seminary in 2017. Last spring, he moved back under his parent’s roof, along with his wife and three young daughters. The family decided that was how best to care for the 34-year-old husband and father who suffers from a rare brain disorder called frontotemporal dementia (FTD). 

The dementia is always progressive, always fatal and there is no known way to slow its rapid advancement.

“FTD is rare,” Jenny pointed out. “Only 10% of dementia patients get FTD and it’s even rarer in someone so young.” 

According to the Alzheimer’s Association, nerve cell damage caused by frontotemporal dementia leads to loss of function in those brain regions, which variably cause deterioration in behavior, personality and/or difficulty with producing or comprehending language. Frontotemporal degenerations are inherited in about a third of all cases. There are no known risk factors. 

Larry’s family started to notice slight changes in his personality fall of 2017. Minuscule hints that something was amiss began to transform into more concerning patterns, Erica recalled. 

Larry suddenly appeared to shut down; losing interest in everything, including his family, work, hobbies and spiritual life. “For anyone who knows Larry, this was absolutely out of character. Most baffling and scary,” Erica said, “was he didn’t seem bothered by the changes or even notice them occurring.”

High school sweethearts (she was a Dahl then) married 13 years, Erica went into nursing after graduation while Larry pursued his passion for Biblical archeology. As a medical professional, she knew something was off but couldn’t pinpoint a cause. 

“I felt helpless because I didn’t know how to help him. I would ask him if he was sad, thinking it was depression, and he would say, ‘no, I’m fine.’ He couldn’t recognize changes, which made it more challenging.” 

When doctors at Mayo Clinic diagnosed the disorder last year, everything was in place, noted Erica. “We had moved in with Larry’s parents and were already functioning in a role of caring for him 24 hours a day. We had built-in teamwork even before we knew what we were dealing with.” 

The diagnosis came after five frustrating months of seeing neurologists, counselors and psychiatrists. The family had never heard of FTD until the October 2018 visit to Mayo. 

The telltale symptoms of the disease are readily apparent. Larry’s memory and his speech are declining. He doesn’t talk much and is unable to recognize emotion. 

“His expression is flat. There is a loss of empathy,” explained Erica. “That was one of the things that scared me most. Larry has always been so loving and kind and compassionate, especially towards our children. He isn’t able to relate emotionally.” 

The Largent family is the Tour De Bar’s 31st beneficiary. Their White Bear connection is strong. They were nominated by family members Jenny Meyer, Erica’s aunt who owns White Bear Glass with husband Jeff, and Diana Gertz, also an aunt, and her daughter, Vanessa House. House is a nurse in the White Bear school district. Erica’s dad is a jeweler at Joel B. Sherburne Jewelers downtown.

Benefit proceeds will help them with medical care costs, medication, adult day programs and everyday basic needs.

What does their future hold? “Every person is different with this,” Erica replied. “I watch other people’s journeys through support groups online to help give me a framework of expectation. No one can tell us what this journey is going to look like. I try not to worry. It will kill me. I try to plan.” 

They focus on quality of life for their loved one and have every intention of caring for him at home. “It is step by step and day by day,” Erica said. “I have learned to be patient and not let myself live in a place of worry. We have a strong faith in God and I’ve never felt Him closer.”

Their girls have been “amazing” in how understanding and patient they are with their father. “He was very devoted to the girls,” Erica said. “They have become very protective of him. I see how they’re handling it and I know they’ll be OK.” 

The Largents hold out faith that there is a bigger story. The mother-daughter team are trying to build awareness of the disease, which is misunderstood in the medical community. According to Erica, the signs of FTD were there on an MRI but no one saw it. “Larry was pigeonholed for being psychiatric because of his age.” 

Since there is no hope of getting back the Larry they loved, the family feels it their duty to be his voice as he loses more and more of his own. 

“We will share his story and honor who he was and is,” Erica wrote on his CaringBridge site. “We will continue to advocate for him, seek out the best treatments and care for him to the best of our abilities. And we will use what we’re going through to help others. It’s the only way we can make sense of it.”

Erica will continue to take Larry most everywhere she goes unless it involves noise and crowds that overwhelm him. He becomes anxious easily. His parents will continue to take him to movies on Fridays. They will keep doing what they can while they can and live every day to its fullest, assured Erica, because “tomorrow is not promised.” 

She ends her journal entry with a passage from Hebrews 12: “Therefore, since we are surrounded by so great a cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles us. And let us run with perseverance the race marked out for us.”

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