My dad died in September from frontotemporal dementia. My heart breaks for Bruce Willis’ family, because I know how hard this disease is.

Bill Dodge with his two daughters.Courtesy of Jen Dodge

  • Jen Dodge’s father, Bill, was diagnosed with dementia about four years ago.

  • He never accepted his diagnosis, which made caring for him difficult.

  • This is Dodge’s story, as told to Kelly Burch.

This as-told-to essay is based on a conversation with Jen Dodge, whose father was diagnosed with frontotemporal dementia. It has been edited for length and clarity.

The first signs that my father, Bill, had frontotemporal dementia were little memory lapses. But they quickly became weirder and weirder. My dad was a professor who held three master’s degrees, but he became convinced that he was working for people who called him on the phone and demanded he buy gift cards to support their online scams. He ordered boxes and boxes of questionable supplements that he was convinced he needed.

There were more dangerous signs, too. My dad would get in his car and drive from his home in Maine down to Massachusetts, with little idea how he got there. Auto accidents were common. He even started stalking his ex, convinced that she was in trouble and needed him.

At the time, four years ago, I had twin infants and a toddler. I commonly found myself trapped between my children and my dad. Sometimes, when I was bleary-eyed after feeding babies all night long, I left the kids with my wife so I could talk to the police or meet with a doctor. Other times, when the emergency room called me yet again, I had to tell them I’m sorry, but I can’t come get him.

My dad refused to accept his diagnosis

My sister and I somehow convinced my dad to get tested for dementia. The doctors came back with a clear diagnosis: frontotemporal dementia, the same type that’s now affecting actor Bruce Willis.

My dad refused to believe the diagnosis. It was all a big misunderstanding, he said.

That might have been because he knew what was coming. His own mother, my grandmother, had the same disease. My dad had moved next door to her, allowing her to live at home until her late 90s. The paradox blew me away: My dad had just lived through dementia, but he refused to see it in himself.

To avoid confronting his grim reality, my dad evaded questions. He had worked in adult-protective services, so he knew how to game the system. He understood the test for competency. If a doctor mentioned dementia, he would find a new provider. Because of that, he lived on his own until just before he died last fall.

I grieved my father before he died

I went through a huge grieving process during the years my father was ill. The dad that I had known and grown up with was gone. The man in his place was angrier and more emotional.

Because he had given me power of attorney before he got sick, I was able to sell my dad’s car. I needed to do that before he hurt himself or someone else. But he never forgave me, right up until he died. That was incredibly difficult, because he had never been mad at me before. Even through my teenage years, he’d been a calm, reassuring presence.

Due to his dementia, my dad became an incredibly difficult part of my life. It was hard to love him in spite of that, but I did. I thought I had done my grieving, but I was absolutely devastated when he died.

I worry about my future

When I saw the news about Bruce Willis, I felt so bad for him and his family. People don’t understand how hard it is to keep up with someone with dementia, especially in the early stages. We want our loved ones to be well, so we try to rationalize their delusions. You can get pulled in.

Seeing my grandmother, then my father, live and die with dementia has changed how I think about my future. I take brain health seriously. I hope that wards it off for a time, but I still worry about getting this disease and who will take care of me if I do.

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