AFTD Board member Kristin Holloway shared her experiences as a care partner for her husband, Lee, in an article published by Self magazine on May 17.

Holloway began noticing alarming changes to Lee’s behavior in May 2016, when he was in his mid-30s. He regularly arrived late, or not at all, to his job at Cloudflare, the internet-security company he co-founded in 2009; he eventually was put on a performance improvement plan. Lee also began to shower less and wore the same outfit every day. Kristen encouraged him to take time off work, so Lee stepped down from his job that summer.

But Lee’s behavior continued to decline; he spent his days in his pajamas, re-watching the same movies and shows. He soon developed other obsessive tendencies, such as counting the floorboards around the house, and became uncharacteristically apathetic. When Holloway gave birth, Lee slept through the entire labor and delivery.

“We had our son—who was happy and healthy—and went home. My mom came and stayed with us for three weeks,” Holloway said. “There was finally somebody else seeing what our day-to-day life was like, and she became concerned about his behavior, too. The apathy and obsessive tendencies intensified that fall—he now touched every corner of the countertop and refused to shower.”

When Holloway told Lee she wasn’t happy and needed help with their baby, he only responded, “I’ll get better.” The couple went to a marriage and family therapist, though Lee maintained a blank expression during the appointment. The therapist said that Lee’s level of apathy was abnormal and recommended he see a psychiatrist; he later saw a neuropsychiatrist as well.

“Mind you, our baby was only a few months old,” Holloway told Self. “I was pumping milk in the car in between all of these appointments for my husband, who, at this point, had trouble getting out of bed. I was in complete survival mode.”

A brain scan administered in early 2017 revealed that Lee had atrophy that was inconsistent with his age. With her worst-case scenario confirmed, Holloway resigned from her job. After Lee underwent a thorough three-day evaluation at Memory and Aging Center at the University of California, San Francisco, “we met with a panel of doctors who told us they believed Lee had behavioral-variant frontotemporal degeneration (bvFTD),” Holloway said.

Lee now lives in a long-term care facility, and Holloway and the couple’s son visit regularly. Meanwhile, Holloway has worked to turn their pain into a new purpose. in 2019, she set up the Holloway Family Fund at AFTD. In addition to supporting early-career FTD researchers through the Holloway Postdoctoral Fellowship and Clinical Research Training Scholarship, the fund made possible the Holloway Summit, which annually brings together FTD thought-leaders to focus on different research topics. She joined the AFTD Board in 2020.

“I’m not going to silently suffer—I cannot help my husband beat FTD, but I can help myself, I can help my child, and I can help this community of people who are affected by FTD,” Holloway says of her work with AFTD. “Even though there aren’t options for him, I really want there to be options for others in the future.”

To others facing FTD, Holloway emphasizes the importance of self-care and asking for help.

“It’s really hard to save yourself before taking care of everybody else, but you have to so that you can show up and be present, smart, and strategic about the decisions you need to make on behalf of someone who’s sick,” Holloway said.

“Along the way, some people might have been judgmental about the fact that I outsourced some of Lee’s care,” she added. “I processed a tremendous amount of shame and grief about this. But I did what I did to save myself. I did it to save my son. I wouldn’t change anything I did.”

Sharing your experiences is a powerful tool for spreading awareness, as it teaches the general public about FTD and lets others on the journey know they are not alone. Earlier this year, AFTD volunteer Scott Oxarart shared his father Steve’s journey with local news, and AFTD Ambassador Dawn Kirby shared her daughter Kara’s experiences with FTD.