The news of Bruce Willis’ frontotemporal dementia diagnosis hit close to home for a D.C. family. Lee Holloway got the same diagnosis six years ago when he was only 36 years old.
He and his wife, Kristin, had just had a baby boy when he started to act differently. He was emotionally distant, sleeping a lot and his ability to communicate suffered.
“It’s very scary when you’re witnessing your loved one go through a very traumatic and dramatic change,” Kristin said. “My husband started acting very different, and I thought I was going crazy.”
The diagnosis came as a shock.
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“When we did get a diagnosis of dementia, I almost didn’t believe it,” Kristin said. “I never heard of anyone getting dementia in their 30s.”
While there was clarity with the diagnosis, there was also a painful realization: Doctors told Kristin that she could only focus on improving her husband’s quality of life.
“It was already bad enough that he was diagnosed with this incurable disease, but to be told there really wasn’t anything to do but to keep him comfortable felt incredibly hopeless, to be honest,” she said.
Lee is in an assisted living facility. He’s been non-verbal for two years.
Kristen says her son is what keeps her going.
“This disease is going to take my husband, but it’s not going to take me, and I’m not going to let this baby grow up without parents,” she said.
She made it her mission to help others in the same situation. She’s a board member of the Association for Frontotemporal Degeneration and she started the Holloway Family Fund to help find a cure.
She said she’s spoken to Bruce Willis’ family and is thankful they’re sharing their experience and raising awareness.
While this is not the life Kristin once envisioned, she said she’s forever grateful for the times she had with her husband.
“If I knew what was going to happen, I would still make the same choice every single day, because it was such a wonderful relationship in my life, and he was such an amazing person,” she said.
The life expectancy after the onset of symptoms is seven to 13 years.
