One day at a time: Kamaria’s story
Kamaria was 28 years old when her mother, Mary, was diagnosed with early-onset Alzheimer's disease. It had only been five years since Kamaria had lost her father to a brain tumor and stopped being his primary caretaker. One night, during the journey to diagnosis, Kamaria went out with a friend and broke down crying at the unfairness of it all. But those were the only tears she allowed herself.
"After I had my feelings about it, it was trying to figure out, how do I move forward?" she says. As an only child who lived with her mom growing up, Kamaria had always been independent. Having learned from her experience with her father, she went into business mode.
"I tend to be somebody who focuses on what needs to be done and deal with the emotional part later," she says. And with an Alzheimer's diagnosis, there is much to navigate and figure out.
The first sign that something wasn't right with Mary was her rapid weight loss—she lost almost 150 pounds without appearing to try. Then Kamaria and others in her close-knit extended family began noticing small personality changes, such as forgetfulness and irritability. But it was a visit from Kamaria's grandmother that spurred her to act.
When her father's mother flew up from Florida, she, Kamaria, and Mary spent the day together. They had lunch at Kamaria's husband's restaurant and visited her father's grave. But when Kamaria mentioned it to Mary a few weeks later, she knew nothing about it and was angry that Kamaria even brought it up. That's when Kamaria realized there was a problem. She quickly started making doctor's appointments.
Since Kamaria comes from a tight-knit extended family, the two-year process of getting a diagnosis was a family affair. Kamaria's cousins live upstairs from Mary and make up part of their core support network. The cousins and Mary's sister attended several of the doctor's appointments, or Kamaria would fill them in on what happened.
First, they saw a gastroenterologist because of the weight loss. Then a therapist. Then a neurologist recommended by a friend. The neurologist diagnosed Mary with a seizure disorder based on an MRI—but that didn't add up for Kamaria. During the process, she connected with the Alzheimer's Association and began increasingly to suspect her mother had Alzheimer's. The Alzheimer’s Association recommended another neurologist, for a second opinion, who confirmed Kamaria's suspicions.
"The weight loss was simply due to the fact that she forgot to eat," says Kamaria.
Mary, diagnosed with early-onset Alzheimer’s disease at the age of 57
Receiving Mary's diagnosis of early-onset Alzheimer's, after two years of searching for answers, was a relief. "I felt like it's what she had, but I needed a doctor to tell me that. It's hard to move forward with a plan if you don't have the actual diagnosis. I had already grieved the loss of our relationship so I was ready to receive a diagnosis and start developing a plan forward."
Kamaria also tried attending support groups recommended by the Alzheimer's Association, but she had trouble relating to the others in the group. The first group she tried included other young people caring for young parents with Alzheimer's.
"It was great for a while, but I felt like I was the only person of color in every single one that I went to," Kamaria says. "They were able to afford either a care facility or something like that, or their parents were more progressed than mine was, and they were able to afford help." The meetings were also far from her house on a weeknight at 7:30pm, so it wasn't convenient to attend. While she continued to attend various advocacy events, Kamaria never found a group or individuals she could relate to.
"So many people are there because they care for their spouses living with Alzheimer's," she recalls. "But I'm in a different situation. I felt like I didn't have anything in common with anybody at those events." So her primary support network was her extended family. Even then, however, most of their support is in the form of taking Mary to doctor's appointments or taking her to church and other social outings. "I felt isolated emotionally, but supported logistically, if that makes sense," she says.
Another challenge was getting her mother accepted into an adult daycare program, which was a long, complicated, confusing process that took nearly a year to complete. "Once she actually got into the center, it was a lifesaver because she had somewhere to go and had an established routine," Kamaria says. The program also provides support with Mary's doctor's appointments and medications while also giving her opportunities to socialize. Unfortunately, due to the COVID-19 pandemic, Mary is no longer able to attend the day program, but she still receives significant support with her doctor's appointments and medications, while they also check in with her on a regular basis. For Kamaria and Mary, this is still a tremendous help.
Now, Kamaria focuses on the logistics, along with help from her cousins. Alzheimer's, after all, is a disease that goes beyond the individual, with the diagnosis affecting their whole family.
"It wasn't this absolute, complete role reversal as it was with my father," Kamaria says, but "I definitely feel like more of a parent now." Mary appears healthy and can bathe and feed herself, for now, but Kamaria misses the mom she had, a parent she could talk to about work, relationships and other aspects of her life.
Her mother, meanwhile, has just gone with the flow. She knows her diagnosis, but Kamaria isn't sure how well she understands it. Kamaria's goal for managing her mother's care is doing whatever works best for both of them: "What allows me to live a life and what allows her to live a life."
That means taking things one day at a time.
"If something else comes up that changes the current situation, then we'll deal with that as it comes," she says. "But I think right now we're in a good spot that works for both her and me."
Kamaria knows things will change as the disease progresses, and she hopes her mom knows, even on the most challenging days, that Kamaria's decisions about her care come from the heart.
"If I could have my old mom back, I would tell her that I'm trying," Kamaria says. "I might not express it in the best way but know that everything I do is because I love you and I want to take care of you. Just know that as we go on this journey together."