Opinion: Macho man Bruce Willis and my dad share shrinking brain disease

My dad died several years ago of frontotemporal degeneration, the same brain disease that afflicts Bruce Willis. It’s a cruel exit that can tear apart families. For years my mother, brother, and myself argued over what was wrong with my dad. He had trouble moving around but mostly he was very nasty and aggressive. This can be a hallmark trait of frontotemporal degeneration in the initial stages. Near the end the patient forgets how to talk, and even swallow.

My dad was my best friend, and I took his death terribly hard. When I came to grips with his illness it made so much sense of my fractured childhood and all the terrible fights with my dad. People with FTD can sometimes say outrageously terrible things to others and create embarrassing situations. For this reason, it’s not a disease anybody likes to talk about.

Here’s an excerpt from a piece I wrote about my dad back in 2015. “I went to see Dad the other day, and the hospice worker was down in my father’s apartment preparing him to go upstairs to the great room. So, I went upstairs and waited so they could do their thing. I know this is not an easy daily task for them. If I’m there, dad screams and shakes his fist at the staff. Honestly, sometimes I’m amazed how they do it. And so grateful.

“Soon the elevator doors opened, and the hospice worker wheeled out Dad. He had this extremely strange look on his face (see photo with story). I asked him what was wrong, but he would not respond. This happens a lot with people with FTD. Sometimes they don’t speak. In end stages they usually don’t speak at all. The hospice worker told me he got mad at her while she was brushing his teeth.

“So, for 25 minutes I sat with him in the dining room. He had this sullen look on his face and would not speak at all. I was terribly upset. Finally, something occurred to me. I said, “Dad, is there something in your mouth?” He just looked. I handed him a cup and said, “Dad, please spit out whatever is in your mouth.” I showed him how to spit.

“And he spit out the toothpaste.

“He had forgotten how to spit out the toothpaste. This is executive function.”

In another 2020 piece I talked about what FTD does to families. “My dad didn’t have Alzheimer’s disease, but that was what doctors initially thought. People would ask if he had Alzheimer’s. I sometimes would just say “yes” because I didn’t want to bother explaining FTD. But those of us who have gone through this must explain it and try to help others.

“FTD is different from Alzheimer’s in that it doesn’t always affect older adults, it doesn’t always impact memory the way Alzheimer’s does, and it often kills a person much more quickly. Dad initially was diagnosed with Alzheimer’s. Talk about a disease that carries stigma. I couldn’t even say it in the presence of some family members. We referred to it as the ‘A word.’

“You’ll find that when someone is diagnosed with dementia, the layers of denial that others have wrapped themselves in can be many layers thick. Like a stinky onion.” Expect fights over who will care for the loved one, and finger pointing when your loved one ends up in a memory care facility or nursing home.

Dad idolized macho men like Bruce

One thing’s for certain. My dad would find it comforting that a macho man like Bruce Willis also was afflicted with FTD. He was concerned about his manliness in his younger years and felt embarrassed by the fact he had retired in his forties of a “mystery illness.” The doctor did not know what to call it back in the 1980s but he told my dad he would have to live in a skilled nursing facility at the end of his life and to plan for it.

Bruce Willis recently entered a “care home.” According to his wife Heming Willis it was a difficult decision. In an ABC News interview with Diane Sawyer, Heming Willis said her husband’s brain is failing him, but he remains in good physical health. “When asked whether Willis, her husband of 16 years, is able to recognize her, Heming Willis said a connection is still there,” according to ABC News. "’I feel he does, right? Like, he, I know he does. You know, when we are with him ... he lights up, right?’" Heming Willis told Sawyer, adding that his connection is also present with the couple's two young daughters and Willis' three adult daughters. ‘He's holding our hands. We're kissing him. We're hugging him. He is reciprocating. You know, he is into it.’”

She continued, “And so that's all I need, you know? I don't need him to know that I am his wife, and we were married on this day, and this is what it -- I don't need any of that. I just wanna feel that I have a connection with him. And I do.’"

The public’s wrath after Willis placed in a care home

In an Instagram report, Heming Willis describes how she was vilified for placing Willis in a care home. She explains how caregivers are judged by those who never have had to care for a loved one with dementia. She said people with lived experience doing so have the only opinions that matter.

I couldn’t agree more. Putting my father in a memory care facility was an ugly point of contention that divides my brother and I to this day. I had been caring for my father in his own home, where he once chased me with a butcher knife. It was extremely obvious to me that I was not qualified to care for my dad. I had done the best I could, checking in on him every morning for many years. Yes, he paid me for helping him out. That was another point of contention between my brother and me. But my brother forgets that dad already was in a facility in 2002 before I moved back to Rock Island from Los Angeles. When I returned, dad moved back into his apartment.

But dad did go into a facility again, about 10 years later, then was moved after a couple of years to a nursing home where he died two weeks later. He died in the same building he was born in – St. Anthony’s Care Center, formerly St. Anthony’s Hospital.

I hope Willis can maintain a relationship with his daughters. His wife said Willis would have wanted his daughters’ home life to be comfortable for them, not him. That figured into her decision to place Willis in the care home.

It’s a decision that will give you guilt that you carry around for a long time, even when it’s the right decision to make.