Constance and Jessica’s story is not just about Alzheimer’s Disease. It is a testament to the connection between a mother and daughter who have spent their lives creating moments for each other. 

When Constance Guthrie was 39 years old, she thought she had come down with the flu.  Instead, the doctor informed her that she was pregnant. At that time, Constance had owned a hair salon in Alexandria, Virginia for 18 years, and her life was traveling for hair shows. When her daughter Jessica arrived, Constance maintained the hair salon until it was time for Jessica to start grade school.

“Since my mom was a hairdresser, I grew up in the hair salon,” Jessica recalls. “My first birthday party was in the shop, so I had a whole bunch of Aunties that were always looking out for me, but also, I had this sense of responsibility that comes from being an only child, daughter of a single mom, but then also being around a number of adult women all the time.” She adds, “I think that’s just a huge part of how I’ve become who I am today as well.” Jessica remembers that the salon was always filled with people managing fashion shows and photo shoots because her mother loved to create opportunities for others.

Ultimately, Constance elected to sell her business and build a house in Fredericksburg, Virginia. “She built a house from the ground up here to raise me in,” Jessica shares. “Because in her mind, ‘when you have a kid, you raise a child in a home and they have good schools.’… And so we moved to Fredericksburg.

Constance took a job in the school system in order to be around for Jessica. This allowed her to have the same holidays and schedule and to be able to spend as much time as possible with her daughter. She became a paraprofessional, taking a significant pay cut to do so. Jessica remembers students telling her, “Ms. Guthrie always looks out for us.” 

Jessica notes the way people who know Constance speak about her, saying that she has always been “someone who deeply cared about others, so very selfless, also really creative and flamboyant. [She] will not take no for an answer.” “In her words,” Jessica adds, “She was never gonna half-ass anything.”

“Constance grew up in segregated Virginia,” Jessica shares, “Ahead of integration… I name this because my mom is old school. My mom is an old school Black woman. She loves soul food, she loves cooking … Every Sunday, we had our big Sunday meal that then carried us through a couple days during the week.” Jessica remembers that Constance has always been “very giving of her time in the kitchen.” Her specialty was homemade yeast rolls. “She might not have any money, but she was going to make you a pan of rolls and she was going to give you rolls because that was her way of giving and connecting with people.”  

Throughout her childhood, Jessica learned about “what it meant to sacrifice, what it meant to be fiercely independent.” Constance created “a world where I was supported and loved and encouraged to do what I was destined to do,” Jessica remembers. She bent over backwards to make sure Jessica had access to every possible opportunity, with a special focus on music, ensuring her participation in every choir practice and recital. “I was in the youth choir. Every single choral ensemble I could be a part of, she was also there.”

Constance herself was the leader of the gospel choir at church after she single-handedly brought it back. “No one was going to stop her… She built the vision from the ground up… She mobilized people, got folks to join… My mom revived the choir because of the energy she had around it.”

Constance and Jessica have always connected through music, through “laughter and finding joy even in the small moments,” even when things weren’t so easy.

For example, Constance wasn’t really a driver, but she was willing to drive six hours to get Jessica to the All State Honors Choir when she got into it in eighth grade. “I’ll never forget,” Jessica recalls, “My mom [said], ‘Okay, we’re gonna do this,’ and I remember us getting up at 4:00 in the morning. She had taped the directions to the car dashboard and she was so committed.” Jessica describes Constance driving the whole way hunched over the wheel. 

“In hindsight,” Jessica considers, “When I think about it, my mom was probably so scared. My mom was probably so anxious. Yet she was so willing to do anything for me to have this experience … We didn’t come from a lot of money and so my friends were staying at another hotel, but we were staying at the Budget Inn or something … And I don’t know what she said to the other moms, but they gave up their hotel rooms and also got rooms at the Budget Inn… They ordered pizza. They made it special… Now that I’m a grown adult, I realize how much my mom sacrificed to create moments for me… And even when we didn’t have a lot of money, she always found ways to make me feel special and included and a part. Even if that meant having pizza parties in a low budget hotel room to have the same experience that other kids were having in All State Choir.”

Later, Jessica reflects, “I think I just emulated lots of ways in which [Constance] operated.” And it is evident in the way Jessica cares for her mom now that she is living with Alzheimer’s Disease. In much the same way that Constance once created special moments for Jessica, Jessica now creates special moments for Constance.

“One of the things I think about often in this journey, in caring for my mom, there’s no question that I would give up everything. There is no question that I would sacrifice. Because she literally did that for me… And the amount of love that takes.”

“My work ethic is totally her,” Jessica says, “I will never half-do things. I will always do things with great intention. I try to be creative and think outside the box.” 

Like her mom, Jessica does not seem to half-do anything; navigating the healthcare system, sharing her story, caring for her mom, and working full time as Chief Program Officer at a national education non-profit. Through all of this, Jessica treats Constance like a human being. Because despite what so many people have heard, those living with dementia are very much still humans, still capable of being a part of special moments. 

“I think when people think about dementia, they think their loved one is no longer there. But my mom still laughs at things, or she’ll respond to me laughing. Like I’ll hear something on TV and react to [it] and she’ll [say], ‘That was funny wasn’t it?’”

“We’re still connecting through music,” Jessica smiles, “I sing to her every day. You clearly see how it soothes her.” 

Jessica has been navigating this disease for a long while now. As a single and working caregiver, the support and understanding she received from the beginning was quite limited. And when Constance was first diagnosed, “My only knowledge of Alzheimer’s Disease was homegirl on Grey’s Anatomy, Meridith’s mom, who had Alzheimer’s Disease.” So Jessica headed to Google for information.

“And of course you only Google to the extent of what you know,” Jessica points out. So many people know so little about dementia that what they look up won’t necessarily point them toward the most effective resources. And Jessica couldn’t spend too much time researching because she had to be practical and figure out creative solutions for problems as they arose.

Eventually, Jessica began telling her story on social media, but, she shares, “Social media was not the place where I looked for information. Social media for me became a dumping ground of my emotions.” And she wanted her friends to see what was going on and to understand her situation. She wasn’t on social media to look for information. 

“I didn’t spend too much time in the first couple of years learning about disease because I spent more time trying to create systems… I started solving or creating things to try to make the lift less heavy for her, less big.” Jessica began labeling everything for Constance. She got her a notebook that she wore around her neck to write down her notes. She began meal prepping when Constance started missing meals. 

And Jessica’s meal prep process is just as meticulously thought through as everything else she does for her mom. In part, this is because of how important food has always been to them. “Cooking and food and soul food have always been a part of [Constance] and how she raised me,” she shares. “Growing up, I would say the way in which we celebrated was also with food … Food for us has always been a way of seeing other people, celebrating, and even if it was just the two of us, it was how we acknowledged that something was good or something good was happening to us.”

“I’m not the greatest cook,” Jessica remarks, “And so, as an early adult, I would [think], ‘how did she do all this?” But now Jessica meal preps for Constance. She prepares each meal and each is tailored to not only her mom’s historical preferences, but also her current needs. She started off preparing foods her mom has always loved, like chicken, sweet potatoes, and collard greens. For a long time, baked chicken thighs were a huge staple because they freeze well and Jessica knew Constance would eat them. She paid attention to items that Constance has always enjoyed, like beans, tomatoes, squash, cucumbers, and salad. 

But as the disease progressed, Constance started having trouble chewing. Jessica wanted her mom to enjoy her food, but still get necessary nutrients, and she knew Constance would not be okay with pureed food. So Jessica moved to soft, plant-based meals, including foods that are easy to chew or those that dissolve with little chewing. She considers what flavors her mom enjoys and then adjusts from there. “How can I make what I know she likes work for her?” 

For example, she now makes Constance cooked-down jackfruit rather than chicken. This all takes work, including the thoughtful planning and the actual execution of the meals. “I don’t know if I get joy from [meal prepping] like that, but I do get the joy from seeing my mother enjoy food and still be able to eat and get through a meal.” Sometimes, Constance even takes a bite and says, “Oh, that’s good.” 

As the disease has progressed, along with changes in eating have come many other medical needs. For example, as changes in Constance’s mobility and ability to perform daily tasks emerged, Jessica sought the assistance of home health to provide physical and occupational therapies for her mother. But this revealed to Jessica that those operating within the healthcare system are not trained in interacting with individuals living with dementia. When therapists arrived, Jessica shares, “It felt like they were giving up on my mom…” 

Jessica is incredibly intentional in the way she communicates and she speaks often about the importance of clear communication and increased competency from healthcare companies. “How do we create accessible, rigorous, scientifically-backed medical access for everyone that does not require jumping through hoops and insurance and being in the right place and having the right hospital down the road?” She wonders. “I think the quality of care is too inconsistent… How do we just guarantee that everyone, regardless of income, regardless of insurance, regardless of access, gets quality, equitable, amazing medical care?”

“I just wish that everybody had a deep understanding of dementia,” she states, “And not just the chapter in a textbook understanding. But like you truly recognize different symptoms, how to communicate, how to think through diagnoses, how to treat people with dignity and respect.”

And as someone who spends the “majority of my days [working in education] talking through equity and inclusion,” Jessica asks, “How do we get people really strong cultural competence training, anti-bias, anti-racist development… How do we get medical professionals to truly be able to engage regardless of race, ethnicity, background… Because there’s too much happening that is inconsistent and unfair because of people’s barriers and racial biases.” 

In the future, Jessica hopes to create a Diversity, Equity, and Inclusion 101 course for caregivers and companies. She is passionate about helping families prepare to leverage resources when they are available, for example, making the most out of hospice and different care agencies. 

Today, Jessica is still a full-time Chief Program Officer and full-time caregiver. She continues to share her story on social media. And Constance, even in the midst of late stage Alzheimer’s Disease, is still Jessica’s mom, a lover of music and food and laughter, and a woman who adores her daughter.