DEMENTIA

A New Chapter

Author rewrites the narrative to bring Alzheimer's into perspective

By Meg Herndon

Author Tory Henwood Hoen knows how a diagnosis of Alzheimer’s disease can impact a family. Her father was diagnosed when Hoen was in her early 20s and died when she was in her early 30s. She watched her mom take care of him and witnessed what it means to be a family caregiver.

Hoen's new novel, “Before I Forget,” follows Cricket, a 26-year-old looking for purpose who moves back home to take care of her father, Arthur, who has Alzheimer’s.

“I wanted to look at what it would be like for a young adult to step into that role,” Hoen said. “Because when I was in my 20s and my father had Alzheimer’s, I felt a bit alienated because so many of my friends’ parents were young and healthy, and they just weren’t at that stage in life. I felt like I was having to think about and address heavier issues related to mortality and the planning that goes around managing someone’s end-of-life process.”

Younger family caregivers are often an overlooked demographic. According to the National Alliance for Caregiving, one in four family caregivers are between 18 and 36. Additionally, a 2025 Caregiving in the U.S. report from AARP found that, in contrast to older family caregivers who tend to take care of their spouses, younger family caregivers are more likely to care for older generations.

The book follows Cricket and Arthur, who has developed an uncanny ability to predict other people’s futures even as he loses his own grasp of his past. Interwoven are realistic portrayals of the difficulties and joys of caring for a loved one.

Cricket struggles with a lack of confidence in her decision-making, especially when she compares her caregiving to her older sister’s, who took care of Arthur for years before having to relocate for a job. “Before I Forget” shows there is no “correct” way to be a caregiver; everyone brings their own strengths.

“It’s through caretaking that she (Cricket) starts to realize what she’s capable of, and not just capable of, but good at,” Hoen said. “She’s a very emotionally intelligent person, she’s open-minded, she’s creative, and I think those qualities come to life through her caregiving.”

Within the first chapter, Cricket and her sister Nina discuss how Medicare doesn’t cover long-term care and the financial hurdles some face when attempting to hire a full-time home health aide.

Cricket reflects on how Arthur’s friends and those who know him aren’t sure how to interact with him after his diagnosis, touching on the isolation both the person receiving care and the caregiver can face.

Throughout the book, Hoen uses Cricket's character to take readers on the journey of a caregiver, including the raw and complex feelings that come with the role.

“(I was) also very much concerned with: People who are living with this disease or caregivers, will this book resonate with them?” Hoen said. “That really is the audience I was most concerned about. So, I’ve been very gratified to hear that it is resonating. It's giving people a lot to think about.”

The reviews confirm that's the case.

"Hoen offers a lovely, entertaining bildungsroman about family, forgiveness, grief and memory... Before I Forget is a novel brimming with both pragmatism and heart, clear-eyed about the sadness, joy, regret and grace that accompany the kinds of hard decisions many of us have faced or will face one day,” said one review from the Chicago Review of Books.

The intermingling, complicated feelings of grief, acceptance and the celebration of life that are an inherent component of caring for an aging family member are also central themes of “Before I Forget.”

“Cricket knows she is subjecting herself to heartbreak,” Hoen said. “But at the same time… she knows she has to do it. So, when she makes the decision to move home and be his caregiver, that’s her first big act of love. I think that’s how life works, we're often pushed to make these big decisions in really difficult moments, and the grief and joy can go hand in hand. I think especially when we're talking about mortality and end of life, it just brings up all the emotions at once. And you have to process them all at once; they're intertwined.”

Inspired by her own experience grappling with her father’s diagnosis, Hoen also wanted to explore memory and identity and the impact those have on interpersonal relationships, especially when an Alzheimer’s diagnosis is involved.

Generally, Hoen sees Alzheimer’s portrayed as a huge loss for the family and the person.

“It’s just all about loss and erosion,” she said. “I think, given what I went through, it’s sad, it’s heartbreaking, it’s really difficult.”

But Hoen saw that her father retained much of his personality—including his sense of humor and charm—until the very end. That’s not always the case for every individual, she acknowledged, but she was surprised that the elements that made up her father’s personality didn’t steadily slip away.

“So, I wanted to explore a situation and a relationship where even though the shared narrative and memories are gone, there's still this rapport between father and daughter,” Hoen said. “They find ways to relate and connect in new ways and are able to enjoy each other on a new level, even though they can't necessarily use their old shorthand or rely on their old memories—they still love each other and are still able to show that love.”

Often, young adults like Cricket can feel as if their 20s and 30s are the end of the rest of their lives, when in reality, there are still shifts and growth to come. This is why it is important to tell nuanced stories about older adults in books, TV, film and other media, Hoen said. Although Cricket is the main character at the beginning of her life’s journey, the book centers Arthur’s end-of-life journey as well.

“I've never been an octogenarian or septuagenarian, but I wanted to write a character who was in that space of life and just see what it would be like to spend time with that character,” Hoen said. “So far, the feedback has been that people really enjoy Arthur as a person.”

Within the story, Cricket cultivates a multigenerational found family that helps her take care of her father and assists with her own struggles. The support system she builds shows how it’s not just important to tell stories of people of all ages, but also to foster relationships with people of all ages.

“I think it can be really energizing for both older and younger people to have that exchange,” Hoen said.

Art, like caregiving, is a shared experience. Hoen’s background with her father’s Alzheimer’s diagnosis informed “Before I Forget,” and she hopes that readers take away the value of complex stories about older adults. Additionally, Hoen strived to write a book that touched on all aspects of caring for a loved one with Alzheimer’s.

“I didn’t want to write a book that was just sad,” she said. “I really wanted to blend humor with emotional truth, but I wanted to do that in a respectful way. … I certainly wanted to make sure it wasn't making light of this disease or the amount of care that goes into caring for someone with this disease.

"At the same time, I also wanted to bring the humanity to the surface—people with Alzheimer's and caregivers are still humans. They're still having fun. There's still funny stuff that happens. With stories about older people, it's like the old wise man, or like the old crotchety woman, but the truth is, there's complex humanity happening at every age. I wanted to emphasize that.