“I’ve done two tours of duty,” Deneen Day says without hesitation, introducing herself.
No, the Columbus native has never served in the military. But she is certainly a veteran of a different sort.
Day has twice served as the primary caregiver for close family members with Alzheimer’s disease. For any individual, this role can be exhausting and all-consuming. But as an LGBTQ+ Black woman who has had to navigate support systems designed for people who don’t look like her or love like her, Day has encountered obstacles that straight white caregivers simply do not encounter.
Add to the mix that Black Americans are twice as likely as older whites to have Alzheimer’s or another dementia, and you have an embattled landscape that only a seasoned veteran could traverse.
“I have had to be a warrior, that’s for sure,” Day laughs. “But I just put on my cape and did what I had to do.”
First tour of duty
In 1993, Day got a call from Cuyahoga County Elder Services that the Meals on Wheels program had found her Cleveland-area grandmother Odessa in ill health.
Day, a financial crimes investigator, rushed north from Central Ohio and began her role serving as primary caregiver for her grandmother, who was declining from Alzheimer’s disease.
It was a years-long harrowing situation where Day – then in her late 20s – traveled back and forth weekly between Columbus and Cleveland.
Although she started this caregiving journey with her mother, Tillie, by her side, the Alzheimer’s had altered Odessa’s personality to the point where Odessa was verbally and physically abusive towards Tillie.
“The disease had changed my grandmother’s personality, so I had to remove my mother from the situation,” she said. “We just didn’t know much about the disease at the time.”
Needing more support, Day threw herself into Alzheimer’s research, learning as much as she could about Medicaid, nursing homes and the effects of the disease itself. It was then that she first connected with the Alzheimer’s Association.
“I met some people through the Alzheimer’s Association who helped me understand how this she-ro of mine – a fashion-conscious, sharp, formerly docile business owner who had helped raise me – had become someone so unfamiliar to me,” Day remembered.
Although she appreciated finding some support, the other caregivers she encountered through the Alzheimer’s Association simply didn’t look like her.
“I still felt a thing apart from the support because everyone I met and who was pictured in the pamphlets were all white,” she said.
So Day soldiered on, feeling increasingly alone, traversing so many obstacles with Odessa’s health, including lodging complaints against a care facility that was ultimately shut down due to neglect.
These barriers are extraordinarily common: Alzheimer’s Association reports that half of Black Americans say that they have experienced discrimination while seeking care for a person living with the disease, and only 48% of Black Americans report being confident they can access culturally competent care.
Still, Day had no choice but to move forward alone, as she was the only one of her several dozen family members – all of whom lived geographically near her grandmother – who stepped up for Odessa.
“I’m a firm believer in the idea that memories matter,” Day said. “That first tour of duty embedded memories in me that stayed with me and affected everything ahead of me.”
After Odessa succumbed to the disease in 1995, Day was finally able to catch her breath.
Sadly, the respite did not prove permanent.
Second tour of duty
The early 2000s were filled with joy for Day. She and her then-partner adopted Kendall, a special-needs baby in 2003. In addition to the strong connection that he formed with his moms, Kendall also formed a close attachment to Tillie, Day’s mother.
“My mom was with us when we picked him up, and he quickly became the apple of her eye,” Day said. “They formed an unbreakable bond.”
A few years later, it was that bond that enabled 5-year-old Kendall to see what others couldn’t.
Day admits that she may have had some blinders on because she couldn’t conceive of going through another caregiving journey. So it was Kendall who noticed that something was “off” with his grandmother, an impressive feat given that the highly educated Tillie – a retired special education teacher – did everything she could to mask any signs of cognitive decline.
“I call him my neuro ninja warrior,” Day said. “He had a connectivity of understanding that enabled him to tell me that some things [Tillie] was saying and doing weren’t normal, even as this 5-year-old clearly couldn’t diagnose what he was seeing.”
Tillie’s actual diagnosis: Alzheimer’s.
Again, Day found herself in the role of primary caregiver, but this time the circumstances were markedly different than they had been for her grandmother Odessa.
“I was a textbook sandwich-generation, caring for my mother and caring for my son,” Day said. “I was also determined not to let my mother experience the terrible care that my grandmother experienced.”
Again without the support of her family, Day turned to a familiar source for support: the Alzheimer’s Association.
“I took advantage of every program they offered,” she said. “I jumped in with both feet and volunteered wherever I could.”
Day said she noticed more of a change in representation in other volunteers and materials (“There definitely were more Black people in the pamphlets!”), but she still felt a bit separate from those she was encountering.
“I’m trying to figure out how to co-parent with another woman and how to care for my mom. I wasn’t really meeting other caregivers in the [LGBTQ+] community, and certainly not Black women,” Day said.
Day took care of her mother and her son in the same house for six years, all while juggling her full-time job. She describes Kendall as her “rock” during that time, using his neurodivergent intuition “superpowers” to assist the caregiving.
“When my mom would word-salad and speak in sentences that made no sense to me, he would know that when she said ‘spoon,’ that she meant ‘sweater,’” Day said.
When Tillie, who insisted on still doing laundry, accidentally turned a whole load of clothes pink, Kendall called it his “warrior color” and proudly wore his pink out into the world.
“He was able to understand her in a way that no one else could,” Day said.
But after Tillie suffered a devastating fall, Day had to find a long-term facility to house her mother.
“It was the most horrific day,” Day said, getting emotional. “[Tillie] had always said, ‘Please don’t ever put me in a facility,’ but we just couldn’t care for her anymore.”
This was in 2014 – a year before the Supreme Court legalized marriage equality – so even the process of admitting her mother to long-term care was fraught.
“Other people may be able to just walk up to a desk and fill out the paperwork, but there were so many more questions for me to wrestle with,” Day said. “Do I put my wife on the paperwork? Will that affect my mother’s care? Are they going to be friendly to us? Should I just say my wife is my family friend?”
Day credits meeting other people through the Alzheimer’s Association as helping to support her process.
“Even just voicing these questions to others helped me work through things,” she said.
A … third tour?
For years, Day bounced back and forth between advocating for her son and advocating for Tillie.
Tillie’s cognitive decline was paired with physical ailments. In Tillie’s case, she suffered from vascular dementia, a prevalent condition for communities of color due to high blood pressure, high cholesterol and diabetes.
Although Day wanted to do everything she could to “save” her mother (“nobody was going to care for my mother like I was.”), she found she had to pick her day-to-day battles with the care facility or else she would burn out in the caregiving process.
One area in which Day wouldn’t compromise: Tillie’s wardrobe.
“She was in a sorority and loved her clothes,” Day laughed. “No, people in the care facility, you’re not going to put her in Garanimals. That’s not how my mom wants to look, you know?”
To add another layer, Day had begun traveling back up to Cleveland to provide care – again without the support of her family – for her uncle (her mother’s brother) who was suffering physical decline, not cognitive.
It was an unbelievable third tour of duty, one that Day strangely doesn’t count because her uncle wasn’t suffering with Alzheimer’s, but one that took over her life as much as the other two.
After finding her uncle compromised in his home, she was able to move him into a bed at the Cleveland VA Medical Center and then eventually into the same facility as her mother.
“It was really hard for him to see his little sister that way, so I was managing his emotions too,” Day said. “He got angry about her because he didn’t understand the disease.”
Again, the questions about Day’s sexual orientation strongly came into play.
“My uncle being crusty and old-school, how is he going to receive my wife and understand that dynamic in his care? What would introducing this 80-year-old to her look like?” Day said. “Should she be the second call for his care? Should I call her something else?”
And then COVID hit.
With the care facility on lockdown, Day had to manage her mother and uncle’s care through Facetime.
“It was another level of horrific,” Day said.
Tillie’s decline continued and Day received the call in 2020 she was dreading: that her mother’s end-of-life was imminent. Day had been certified as end-of-life doula, so she was allowed in her mother’s room during the lockdown.
Kendall, Tillie’s best friend, wasn’t allowed in the room.
The healthcare providers told Day that Tillie was likely going to die on July 7, Kendall’s birthday.
“I really believe she fought so that she wouldn’t die that day and leave him with that memory,” Day said. “He called, and I put the phone up to her ear so he could tell her that he was going to be ok, that he would graduate from high school and go to college.”
Tillie died shortly after that phone call, thankfully on July 8.
Memories really do matter
Day is not shy about sharing her journey. She has been interviewed for myriad stories and has received some well-deserved recognition for her Alzheimer’s advocacy efforts.
But articles and awards rarely incorporate her whole self. In the rare instances where her being Black is mentioned, her sexual orientation is never highlighted.
“My intersectionality of being a Black lesbian most definitely affected who I was as a caregiver,” Day said. “When you walk into a space and all the nurses and management are white or when you’re not sure if you should list your wife on the forms, that just changes things. I was never in a space where people were looking at the whole of me.”
With almost 20 years of volunteer work with the Alzheimer’s Association under her belt, Day continues to do everything she can to help create understanding about the importance of recognizing all facets of a caregiver’s life. Day facilitates an Alzheimer’s support group at King Avenue United Methodist Church in Columbus, where she prides herself on making sure LGBTQ+ people – and specifically Black LGBTQ+ people – feel comfortable.
“When you have to hide any parts of your identity as a caregiver, it makes things worse,” Day said. “Trust me.”
Although she says that LGBTQ+ and racial representation have continued to evolve in everything, from the faces she sees in healthcare staffing to the online websites with Alzheimer’s resources, there is still much work to be done.
“There are still so many Black LGBTQ+ caregivers suffering in silence, so we need to create even more spaces where they feel they can be themselves,” Day said. “And especially for Black women – who have historically been these caregivers – who are susceptible to dying before the loved ones they are caring for because these Black women are just not taking care of themselves.”
With her uncle having passed away in 2023 and Kendall currently a junior at the University of Cincinnati (“He’s a merit scholar doing very well!”), Day describes herself as a “caregiving empty nester.”
But that doesn’t mean she has let up with her advocacy.
For Day, this has meant everything from pushing for more people of color in leadership at the Alzheimer’s Association to working with Black churches to helping them understand that the resources out there aren’t solely for white people. This work in the Black community is especially important given that, despite the increased prevalence of Alzheimer’s within this community, only 35% of Black Americans say that they are concerned about Alzheimer’s or dementia.
The Alzheimer’s Association also recommends that Black Americans participate in clinical trials or research studies conducted with human volunteers to determine whether treatments are safe and effective. With only 53% of Black Americans believing that a cure for Alzheimer’s will be distributed fairly, without regard to race, color or ethnicity, volunteering for a research study may benefit may help researchers find a new treatment or a cure.
Day’s heroic efforts have far from gone unnoticed. Pam Myers, senior director of programs for the Central Ohio and Northwest chapters of the Alzheimer’s Association, praised Day’s voice as an advocate, support on Walk to End Alzheimer’s committees and commitment to bringing a more inclusive perspective to the fight against Alzheimer’s and other dementias.
“Deneen is a very special full-mission volunteer,” says Myers. “She not only provides excellent community education and facilitates outstanding caregiver support groups, but she is working with staff and other volunteers to expand reach into our underserved communities.”
As for those underserved communities – and Black LGBTQ+ caregivers specifically – Day has a firm message: “volunteer if you can and get your documentation in order!”
She is quick to hold up a thick binder that has everything from paperwork on power of attorney to documents on spousal recognition.
“You never know what tour of duty you might be faced with,” Day said, one of the most seasoned veterans you will find. 🔥
IGNITE ACTION
- Call the Alzheimer’s Association free 24/7 Helpline: 800.272.3900.
- Locate your local Alzheimer’s Association chapter.
- Go to Alzheimer’s Navigator™ to create customized action plans and connect with local support services.
- Check out Resources for people living with Alzheimer’s (learn more about your diagnosis, what to expect and ways to navigate everyday life at each stage of the disease) here.
- Find Resources for caregivers (learn how to prepare for caregiving and sustaining your own mental, physical and emotional health) here.
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