Who Set the House on Fire?

Book: House On Fire

The inspiration (even though that’s totally the wrong word for it) for House on Fire is rather obviously my own experience with dementia. My father suffered with the condition for more than ten years. My mother took care of him at home for a long time but he ended up in assisted living for the last five years of his life, when it became impossible for him to be cared for at home. My mother visited him daily. The only times she didn’t visit him was when she herself was in the hospital.

My dad first started showing signs of dementia a couple of years before my daughter was born so maybe 2003. It’s amazing how many families see signs of some kind of deterioration that they can’t put an accurate label on. My husband and I were living abroad and every year when we came back to America we’d stay at my parents’ house. After one such visit, my father sent me an angry letter about how ungrateful we’d been on our last stay: We made jokes about the LA heat and the truck he lent us that had a broken air conditioner (it was 102). We didn’t buy my mother flowers (we took them out to dinner). We didn’t wear our shoes in the house (we were living in Japan at the time).

Despite the fact that this whole thing was totally out of character, we all responded (including my mother) as if it were “normal” in the sense that none of us ever thought there was something wrong with my dad’s brain that might be causing him to act so strangely, which in retrospect I find astonishing. It’s not that knowing would’ve made any difference in the outcome, but knowing might have helped us deal with his increasingly challenging behaviors.

I wrote a letter back apologizing as best I could and asking why he simply hadn’t talked to us while we were there. My mother feared that we’d never speak to them again but instead we simply stayed in a hotel the next time we were in town, which was the following year for my father’s 70th birthday, where I first announced I was pregnant only to miscarry the very next day.

By the time my parents came to visit us in Japan about a year later, a month after my daughter was born, I think we had a name for what going on. My father had vascular dementia and there was nothing to be done for it. Each time we came back after that, I’d notice a tremendous decrease in my father’s overall memory. The most painful was when my daughter was six months old, we’d stayed with my parents for a few weeks, then moved to a hotel so my husband’s older daughter could visit and meet her sister for the first time.

We moved down the street less than a half a mile away to the Holiday Inn. I called to let them know we’d gotten settled and were heading to the airport to pick up Jessica. My father answered the phone and said, “When did you get here?” We’d literally just left their house. It was maybe fifteen minutes. I think I felt my heart actually break. For three weeks, they’d taken my daughter for a walk in the stroller every morning. She crawled up the stairs to “read” the paper with them in bed. They doted and fawned over her like all grandparents but for him the weeks we’d stayed with them had vanished in the time in took us to drive a few blocks.

When I visited my mother once my father was in assisted living, I would go with her everyday to see him. We’d often spend the evenings after we’d come back sitting by her pool having a glass of wine. My mother was typically an excessively positive person, always hunting for a silver lining but on those nights, she’d let her guard down and show me a side of herself not many other people got to see. There were two phrases she’d say over and over through the years. “He didn’t deserve this” and “If he’d know this was going to happen, he would have blown his brains out.” It’s that latter one that is the seed for the story that became House on Fire.

2 Comments. Leave new

  • Donna Randall
    July 5, 2023 9:49 pm

    Thank you for this heart wrenching, endearing story. My dad’s decline began in 1996 when he couldn’t recall who his oldest grandchild was. Fortunately for my mom, dad was compliant and followed her lead. He passed less than 1 month after our oldest daughter, Stephanie 17, was killed in a car accident in the fall of 1998. We believe her death broke his heart. He was at home with mom until the end. Hours before he died I had asked my mom how long she would care for him at home as she was exhausted. Her reply, as long as I can.

    • Thanks so much for your comment, Donna. I’m so sorry to hear to about your daughter and your Dad. Your family has been through a lot. I’m glad that your mom was able to care for your dad at home until the end. I wish that had been the case with our family but I honestly don’t know how my mom would have done it.


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