Julie Thomas Tullos has always considered herself a writer—the passion for it was there.
With a mom as a librarian who also loved to read and write, it was bound to happen.
However, when Julie’s mom first started showing signs of dementia that later morphed into Alzheimer’s, Julie’s mom, Susan Carol Thomas, kept it hidden from the family.
“My mom grew up in that generation where people just didn’t talk about stuff like that,” Tullos said. “Mental illness was hidden in families. … Nobody talked about it. And you certainly weren’t going to admit that somebody in your family had any kind of mental issue.”
The process made more difficult as Tullos struggled to find an outlet for her emotions after learning about the diagnosis, so she turned to what she knew best: writing.
“I started writing little stories about it, about what was happening,” she said. “And, at first, I did not publish them at all. I just kept them to myself because I didn’t want my mom or my dad to know.”
However, as time passed, Tullos decided to upload a few of her stories to her blog.
Soon after, she received comments from others with similar experiences thanking her.
“It made them feel a lot better [and] less alone,” Tullos said. “During that whole process, I just kept writing about what was happening, not only to my mom, but to me and to my child. There are so many emotions involved with going through something like that. And I wanted to get it all out there.”
Through this process, Tullos discovered a lack of published work by people sharing their experiences with the disease.
She wanted to learn but felt alone trying to figure out the process, especially since her mother did not follow the linear seven stages of Alzheimer’s.
“It was so confusing and just kind of overwhelming that I wanted to try and help other people going through it because I just wanted them to know all the nitty-gritty details of what really happens because that’s just not out there,” Tullos said. “… So, I wrote it all down, and then after she passed, I really thought, ‘OK, I’m going to do this.’” She saw a hole and filled it, and it became a reason for Tullos to continue to share her family’s story through her first published book, “I Will Walk With You: An Alzheimer’s Love Story.”
Writing the book was therapeutic in helping Tullos to process her emotions, not only with her mom’s Alzheimer’s diagnosis but also her father’s passing from cancer amid everything.
“I had to basically relive the whole experience,” Tullos said. “As difficult as that was, it was also really cathartic to do that and go back and rethink about all that happened. Because when you’re going through it, it’s just a blur. … [You’re] just trying to survive.”
Through the process, Tullos learned some valuable lessons, like the importance of community and having a support system for the person with the diagnosis.
She also realized the importance of advocating for loved ones when they reach a point where they cannot advocate for themselves, and she learned to be present.
“I learned through this whole process that, truly, the small things don’t matter,” she said. “The big things—the family, the love, all of that—are so much more important than any of the little bitty things that happen in life. So, I just got a lot wiser, and a lot more grown up. It really changes you.”
From first posting the blog to writing the book and publishing it in October, the process spanned over four years.
By sharing her family’s story through the lens of a daughter and a caregiver, there’s a message of solace that Tullos wants to share with readers.
“People think that it’s not OK, that they don’t deserve to feel that way because their loved one is the one that’s truly suffering, but the caregiver suffers too,” Tullos said. “… The caregiver suffers a lot. And that is OK. ... I wanted people to know that it is OK to feel all those things.”
