Leslie and Jenn Henry, a lesbian couple active in Chicago’s LGBTQ+ community for more than a decade before moving to Michigan, met in 2010 at the Back Lot Bash, an annual Pride party for queer women held in Andersonville.
Jenn, who had been partying all weekend, recalled hearing Leslie’s voice for the first time. Leslie mentioned she was about to leave the festival early, to grab a coffee and head home to walk her dog.
The encounter was brief, but the two ran into each other again a week later at a post-Pride Parade barbecue hosted by Jenn’s ex-girlfriend, whom Jenn was still friends with. The two hit it off, and within a couple of weeks, they had their first date: drinks and dancing at Charlie’s Nightclub in Andersonville.
“I had been drinking a little wine on my deck that afternoon, and then Leslie shows up and tells me she had just done a triathlon,” Jenn said. “So she’s leaving [Back Lot Bash] to get coffee and running triathlons like a complete overachiever. That’s a level of responsibility I never had that she brings to my life.”
The two dated for two years and got married Oct. 6, 2012. Since then, they’ve continued to bond over their love of community service and travel, while overcoming a range of challenges.
Those memories feel like “a different life now.” Leslie was diagnosed with Early-Onset Alzheimer’s Disease in 2023. That diagnosis completely upended their lives together, Jenn said.
Leslie left her job as a business project manager at Deloitte to navigate life with the disease, while Jenn is also staying home as her caregiver. Social outings like street festivals or bar nights have been replaced with nights in, watching true crime shows and working together to maintain a regular routine.
“It’s challenging, but there’s this daily hope that keeps us moving forward,” Jenn said. “I hope everyday is a good day. I hope I’m a good caregiver. And I hope that Leslie always feels safe and happy. Those are my goals for this journey.”
Receiving the Alzheimer’s diagnosis
Alzheimer’s, one of the most common forms of dementia, is a progressive disease that destroys memory and other important mental functions due to brain cells and their connections degenerating and dying. The disease is most common among older adults, but can affect people in their 30s through early 60s, which is known as Early-Onset Alzheimer’s.
Leslie received her diagnosis at 53 years old. Her father has vascular dementia, but the family opted not to do genetic testing that would determine if it runs in the family.
When Leslie Henry first started showing signs of dementia, she and Jenn Henry attributed it to fatigue from being a workaholic. Leslie Henry spent more than a decade in leadership positions at Bank of America and nearly five years at Deloitte. She’s also played an active role within the LGBTQ+ community.
“I remember going to T’s Bar with Leslie not long into dating her and she warned me, ‘I’m going to know a lot of people here,’” Jenn said. “And then we walked in and she was immediately accosted. She knew everybody in the community.”
Leslie’s community involvement continued throughout her career, she recalled. She served on the board of the Victory Fund, a political action committee dedicated to electing LGBTQ+ public officials, and served on the advisory board for Lesbians Who Tech, an organization increasing representation for women in the technology field.
Other organizations Leslie Henry was involved in include Girls in the Game, Lambda Legal’s Women’s Diversity Council and DEI groups at Bank of America and Deloitte, she said.
So when Leslie Henry accidentally left the water running in 2019, causing minor flooding in the downstair’s neighbor’s bathroom, Leslie and Jenn attributed it to Leslie being overworked.
“She would always get so hyper-focused on what she was doing, so I just thought it was workaholism or menopause,” Jenn said.
But Leslie started to suspect the issue might be deeper when she started running red lights while driving and couldn’t explain why.
“It was scary because I didn’t know what was happening with me,” Leslie said.
Things came to a head when Jenn Henry got a late payment notice on a credit card the two of them always kept locked in a safe. Leslie had somehow accessed the safe and used the card to make $170 worth of app purchases, but had no recollection of doing so, Jenn said.
Jenn Henry reported the charges as fraud but realized hours later what had happened.
“That’s when we made our appointment with the neurologist,” Jenn Henry said.
On Feb. 22, 2022, the couple went into Trinity Health IHA Medical Group in Michigan for an evaluation. Leslie failed a mini cognitive test, leading the doctor to suspect the issue was Early-Onset Alzheimer’s.
But the formal diagnosis wouldn’t come until January 2023, after Leslie went through a series of doctor’s visits, psychological tests, MRIs and speech therapy, Jenn recalled.
“It wasn’t fun,” Leslie Henry said. “Especially because I’m a workaholic. It was like, ‘What do I do now?’”
Adapting to life with Alzheimer’s
Leslie said Alzheimer’s makes it harder for her to express thoughts in words or keep track of things, she said.
“I have trouble getting things out,” Leslie said. “I also have difficulty with my phone, or sometimes I’ll lose words or my things. Jenn is always like, ‘Did you lose your phone again?’ But there’s nothing I can do about it.”
Leslie manages the disease by staying active through working out and other activities, she said. Leslie stays physically active by using a Peloton and taking boxing classes.
“Jenn is my calendar,” Leslie Henry said. “She’s the one who got the Peloton and keeps me on track with all these activities, because it’s so important to exercise your brain.”
Maintaining a steady routine is also key, and straying from it can be “discombobulating,” Jenn said.
“We really just take it one day at a time and keep very open communication between the two of us,” Leslie said. “We’re not afraid to talk about Alzheimer’s.”
The couple also found keeping a sense of humor helps navigate the challenges brought on by Alzheimer’s, they said.
“Like the other day, she was trying to tell me to pull forward in the car, but the words wouldn’t come to her, so she just made a funny noise and silly gesture with her finger. We thought it was hilarious,” Jenn said. “You have to be able to laugh when you’re faced with this stark reality.”
Leslie is also involved in support groups for the Alzheimer’s Association, a nonprofit that leads research on the disease while supporting people living with it and their loved ones.
“It gives me other people to talk to, and a sense of purpose, if anyone in the group needs my help or someone to talk to about something,” Leslie Henry said.
In April, Leslie and Jenn Henry traveled to Washington, D.C., for the Alzheimer’s Association’s Advocacy Days. There, they were able to connect with other people who are navigating life with dementia and share their story with legislators and other powerful decision-makers, Jenn.
Some of the issues affecting families navigating an Alzheimer’s diagnosis include financial strains due to a lack of social security benefits for caregivers in some states, Jenn said. The conversations those days centered on reducing stigma.
“It was powerful because you see there’s a lot of us going through this,” Leslie said. “And by sharing our story, we’re able to advocate for changes that will hopefully make this easier for people who live with Alzhiemer’s after us.”
‘Memories for us and experiences for less’
After Leslie Henry was diagnosed with Alzheimer’s, she created a bucket list of things she wants to do before the disease progresses too far. She got the idea from a workbook she was gifted by one of her nieces or nephews, she said.
“There are some really funny things in there, like ‘eat an insect,’” Leslie Henry said. “Well that’s not happening. But it got me thinking about what I want to do.”
One of the bucket list items Leslie Henry checked off last year was going to the Brandi Carlile concert at the Red Rocks Amphitheatre in Colorado. She also visited the National Museum of African American History and Culture while in Washington, D.C., for Advocacy Days.
In October, the couple plans to visit Salem, Massachusetts, to celebrate Halloween and then take a trip out to Niagara Falls, Leslie said.
“I’m most excited about that because my dad would take my brother, mom and I to Niagara Falls, but Jenn has never been,” Leslie said. “It might be a little overwhelming because you’re gonna be underneath the falls and just get drenched, but it’s absolutely beautiful.”
The couple also traveled to Phoenix, Arizona, last year to see Brittney Griner’s home opener game at the Footprint Center. Many of Leslie’s bucket list items center around travel, but getting out of state is more difficult now due to the progressing Alzheimer’s, Jenn said.
“It can be hard to navigate travel, but we’ve found that physically driving in a car is much easier than flying for us,” Jenn said. “That’s going to be the mode of travel for us going forward because you don’t have to deal with the crowds, TSA lines and things like that.”
The bucket list originally focused more on large trips, like to Europe or across the country, but as Alzheimer’s has progressed, Leslie said she’s more focused on spending quality time with her family.
“We’re making memories for me and experiences for Leslie,” Jenn said. “At the end of the day, this is what will sustain us: the memories.”
For information about Alzheimer’s, visit the Alzheimer’s Association at alz.org.