When Jessica Guthrie, 34, looks at her mother, Constance Guthrie, 74, it’s not the Alzheimer’s disease she sees first; she sees a strong Black woman, educator, businesswoman, and pillar of her community.
These are the things that make Jessica proud to be the daughter and caregiver of the woman she calls “CG.”
“She gave up her business, her thriving hair salon, ‘Hair by Connie,’ in Alexandria, Virginia, to build a house in suburbia to raise me,” Jessica says of Constance’s days as a young mother. “She went from making multiple six figures as an entrepreneur to being a teacher’s aide in the local school system to make sure that I had the greatest access to education, resources, and opportunities.”
Today, they live in that same house together in Fredericksburg, Virginia, preparing for the end of Constance’s 74-year life and a continued celebration of her legacy.
Even though Alzheimer’s has taken a devastating toll on Constance’s physical and cognitive health, Jessica welcomes each remaining day together as another chance to celebrate this life they’ve built and the journey they’ve navigated.
Jessica discusses the collision of caregiving and career, facing biases and disparities in healthcare, and advocating for her mother through the end — all part of a day in her life as a caregiver.
On navigating life changes that come with the progression of Alzheimer’s disease:
In early 2015, Jessica got a call from the principal at the school where Constance was a paraprofessional; her cognitive decline was preventing her from fulfilling her job’s “basic duties,” and it was no longer safe for her to continue working in the classrooms.
“At this point, I had already gotten through the first neurologist appointment all the things for early onset Alzheimer’s,” she recalls. By the start of the next school year, Jessica had placed Constance on FMLA at the age of 66.
During the early years of Constance’s diagnosis, Jessica lived and worked in Dallas, Texas, while her mother continued living alone in their Virginia home. She recalls how life changed throughout Constance’s progression, from being fully functional and independent to becoming mostly immobile and nonverbal.
She says every phase “required different things” from her as a caregiver and daughter.
“I don’t think I ever gave myself the space to feel. I just went straight into problem-solving mode,” she recalls. “I was like, ‘Okay, what systems do we need in place? How can I be as present as possible when I’m in Virginia and when I’m in Texas? What do I need to set up so that she can still function as independently as possible in those early years?’”
Everything was labeled and had a schedule — from meals in the fridge to daily activities. Jessica planned all appointments and pharmacy visits during her 2-week windows in Virginia.
She doesn’t think she truly felt the “initial shock of it all” until a year and a half into the journey. She was merely “going through the motions” of her growing responsibilities.
“The feelings that I had, I didn’t have the words for,” she recalls. “Obviously grief, but also insomnia, intense loneliness, the feeling that no one really understands what I’m going through.”
At 26 years old, the lives of Jessica’s friends mostly revolved around marriage and children, not caregiving for their parents. She says the stress of knowing “very little” about the disease added to these feelings of isolation and loneliness.
“The ambiguity about Alzheimer’s disease left me in this space of fight-or-flight; I had to fight through it because fleeing wasn’t an option.”
While Jessica never considered “fleeing” her responsibilities, “fighting” through them looked different as Constance progressed; she began falling more and wandering out of the house as frequently as every five to ten minutes. Jessica panicked from afar as she got notifications from their home’s Ring camera security system while sitting in work meetings.
Even with schedules, routines, and security systems in place, the back-and-forth caregiving model was no longer an option. Constance’s Alzheimer’s disease had progressed so significantly that Jessica needed to move back home permanently.
On March 18, 2019, Jessica packed up her belongings in Texas and moved back into their Virginia home to continue working remotely and caregiving for Constance.
In 2022, Constance was placed in home hospice care, and Jessica began preparing for the end; however, months later, they received the unexpected news that she would be discharged. In March 2023, Constance was deemed stable, and she has since been living out her last days in the final stage of Alzheimer’s disease with her daughter by her side.
“Even though she’s no longer intensely verbal, when she looks at you in the eyes, you know that she sees your soul and is truly connecting with you,” Jessica says of her mother. “The humility, the compassion, the kindness. I think it’s still showing to this day, even as she’s fully bedbound. It just looks different, but that’s very much still there.”
On balancing career and caregiving:
“I think clear boundaries and being vocal about the things that I needed, all the while being vulnerable about what I was experiencing, allowed me to show up in my workplace as a human and create basic conditions for me to thrive at home,” Jessica says.
She graduated from Dartmouth in 2010 before getting involved with Teach For America. Fresh off her 2-year teaching commitment in 2012, she recalls “burning the candle on both ends” as she went on to help expand the nonprofit organization’s newest region as a manager and director of teacher leadership development for the next 11 years.
Jessica flew back and forth between Texas and Virginia, catching 5 a.m. flights to make 9 a.m. meetings. She tried keeping up with the schedule, balancing caregiving duties while pursuing promotions and growth in her career but was “literally dying inside.”
“I realized that if no one else is gonna look out for me, I had to look out for myself,” she says. That’s when she became more “vocal” about what she needed to maintain her career and caregiving duties.
“I put up really clear boundaries. I said, ‘I’m not available to work during these specific windows because that’s my mom’s morning routine, and I will not be here for this weekend’s event,’ things like that,” she recalls. “I was afraid of being vocal to protect this image of being a hard worker, but in reality, being vocal was well-received and supported the entire time.”
Looking back, Jessica thinks it helps that her colleagues “watched all of this unfold in real-time.” She recalls the moment that felt like “everything came crashing down” when she received the call from the principal at Constance’s school in 2015 while on a staff retreat.
“We tried to hide it for a long time and keep things normal, but [in that moment] I was like, ‘Now people have seen that, like, we can’t hide it anymore. How am I going to pay for this? How am I gonna take care of her? How can I do this from afar?’” she says.
The “tremendous support” received from colleagues and the “compassionate” work environment deeply impacted Jessica as she navigated her caregiving journey and continued pursuing her career.
“I think there’s something really powerful about the people you work with seeing you at your most vulnerable state and holding space for you as a human.”
After 11 years with Teach For America, Jessica resigned from her role as Vice President & Chief Program Officer in June, consciously deciding to be “fully present” for her mother in her final days of life.
On sharing her journey and diversifying the caregiving community:
Sharing her journey on Instagram has allowed Jessica to write her own narrative about being a caregiver.
“I realized really quickly that people had very little insight and had a lot of assumptions about Alzheimer’s disease forms of dementia and all the things that I was carrying as a caregiver at the time,” she says.
While most companies are “really good about supporting employees who are caregivers of children,” Jessica points out that most are “not nearly as inclusive” of caregivers of other adults or family members.
“I started publicly sharing on my personal Instagram because I needed my friends to hear a different perspective of what it means to be a caregiver in the workplace that’s not talking about daycare, school pick-up, or whatever else [involving kids].”
Another thing she quickly realized was the need for more diverse voices in the caregiving community.
“I did not see young Black caregivers that looked like me talking about the experience,” she says. She adds that, in her experience, most support groups are made up of mostly white people who are well into their careers, own their own homes, and have different resources to support a loved one with Alzheimer’s disease, and that she “doesn’t feel welcomed” in those spaces.
“Jessica, if you don’t see it, you have to create it,” she told herself.
What began as an outlet eventually became a community for others like her—young, single Black people navigating their careers and caregiving. Her personal account became @careercaregivingcollide and has since gained more than 19,000 followers.
“I really started the journey for people who look like me and also wanted to create the community that I needed at 26,” she says. “It truly has become a community of people from all walks of life who now say, ‘Because of you, I don’t feel so alone,’ or, ‘Seeing your experience has helped me advocate for things for my loved one,’ ‘Because of you, I feel like it’s OK to share my journey.’”
On being a strong advocate when facing disparities and biases in dementia care:
As a caregiver and Black woman, Jessica has experienced firsthand how people’s implicit — and sometimes explicit — biases are “baked into how they show up in the healthcare system.”
“It’s everything from dismissing me to not listening to me even though I have a full notebook full of documentation,” she says. “It is like they second guess or question the things that I say, even though I’m the expert in Constance Guthrie.”
In one visit to the emergency room, Constance arrived with knee pain that turned out to be a blood clot; the doctor “didn’t even examine her whole leg” and sent them home with narcotics, suggesting that Jessica move her mom into a rehab facility.
In a different instance, Constance’s primary care physician dismissed pain in her mid-section without ordering any diagnostic imaging; two days later, she was in the ER with a hernia that needed an operation. (Jessica credits the diagnosis and course of treatment to the Black ER doctor who was “looking out for them.”)
During a recent trip to the emergency room, a doctor denied Constance the prescription for her Alzheimer’s disease written by her own neurologist.
Jessica also considers the cultural biases of the home caregivers and how they impacted her mom as a Black woman born in 1948, recalling a time when a CNA washed her mother’s hair.
“You just don’t wash a Black woman’s hair just because it’s on your checklist, right? You should ask for other special products. It’s those kinds of cultural differences.”
Jessica says navigating the medical field as a caregiver can be exhausting, “always having to fight, having to speak up, having to be in advocate mode 100% of the time.” But she knows Constance’s care depends on it.
“I know that if I’m not, [my mom] won’t get equitable care,” she says.
After eight years of caregiving, Jessica has learned that being a strong advocate depends on patience and knowledge.
“You have to stay level-headed because the first thing they basically ignore is an overly emotional caregiver,” she advises. “They’ll say you’re not listening, that you’re just tired and stressed. You have to be someone who can stay calm in the moment.”
She adds that knowledge “truly is power” when it comes to being a strong advocate, but it’s not always at the hand of those facing a dementia diagnosis.
“In the land of Alzheimer’s disease forms of dementia, there’s actually not a lot of accessible knowledge when you become a caregiver around what to expect with your loved one,” she says. “Most people just think, ‘Oh, gosh, my loved one has Alzheimer’s. They’re going to start forgetting things,’ but that’s the tip of the iceberg.”
She believes it’s a caregiver’s job to “become an expert” on their loved one from the moment a diagnosis is received.
“A lot of people grow up just trusting that the medical system is going to look out for them, and I would say, for all people, but especially if you are a person of color, the answer is no,” she says. “It is your job.”
“You need to be hypervigilant in terms of staying on top of appointments,” she continues. “You now need to almost be a manager of the medical processes for your loved ones so that you can effectively talk about what has happened, what hasn’t happened, and who ordered what.”
No question is “too big or small,” she insists, and caregivers and family members should “keep a journal and document everything.”
“Asking more questions allows you to leave with more information to either fact check or get a second opinion on,” she says.
On showing up for herself and her mom through the final days:
Since leaving her job earlier this month, Jessica is no longer dividing her time and attention between caregiving and work — which means she has more time to be present for herself and CG.
“Especially now that I know my time [with her] is limited, I have become very open to [accepting] help,” Jessica says. “I think that’s allowed us to also support my mom and keep her thriving, too.”
She makes “intentional” time for things that she enjoys. She prioritizes exercise and movement; she even teaches a dance fitness class at the YMCA. She reserves time in her evening to catch up on her favorite shows and women’s basketball. She journals, says daily prayers, and sets intentions for how she wants to show up for the day.
“I do [these things] because they bring me joy, and it’s for me and no one else,” she says.
As for Constance, Jessica remains committed to ushering her through the end of her legacy with dignity and respect.
“The first thing is just continuing to treat her like Constance Guthrie, honoring who she has always been and not treating her as anything less.”
To Jessica, this looks like “still holding space” to sing Constance’s favorite gospel songs, even if she can only hum and dance along; engaging, connecting, and laughing with her, even if she can’t respond; feeding her really great meals, even if they have to be softened or pureed.
She says she’s even intentional about the act of feeding Constance.
“It’s easily a 45-minute process, but that’s intimate time with her. You’re talking, you’re laughing, you’re reacting to things.”
“That’s treating her with dignity and respect,” she says with a soft but proud smile.
And forever, Jessica will remember her mom as “grandiose, flamboyant, and over the top.” She’ll fondly recall her as “truly selfless and thoughtful about what others need.” The memories of who she is and the life she created will live within the floors and walls of their cozy Virginia home.
These are all things Alzheimer’s disease couldn’t steal from the Guthrie women.