Arminda and Alma’s story is one of resilience and empathy. It is a story that reflects the complexities of intergenerational trauma, the impact of Frontotemporal Dementia on family systems, and the devotion of a daughter to respecting and honoring her mother as a complex human being who is more than a progressive brain disease.

Arminda was born in Panindícuaro, a small town in Mexico. She was the second youngest of twelve children. Her father had a job that paid well, and he owned various properties in the area. The family lived a good and comfortable life. But Arminda does not remember that because when she was just four years old, her father was murdered on Christmas Eve. 

Today, Arminda is living with Frontotemporal Dementia, and according to her oldest daughter and primary caregiver Alma Valencia, “There is not a day that goes by that my mom does not mention that her father was killed. She mentions it all the time. So I know that traumatic experience really affected her brain development at such a young age.”

When Arminda was six years old, her mom took her six youngest children and settled in Sonora with one of Arminda’s aunts. They moved because her mom was afraid that Arminda’s older brothers might try to find the person who killed their father and that they might try to retaliate. By this time, the six older siblings were married and living elsewhere, or had already come to the States. Eventually, the family immigrated to California.

“All of my mom’s life has kind of been a little unsettled,” Alma reflects. 

“I really feel that since she was a baby, she didn’t really have good guidance. She kind of fended for herself. So she developed a lot of bad coping mechanisms, like lying, using her story to get pity, to get what she wanted. A lot of manipulation … She would hang out with the bad crowd. No one was really paying attention to her. She had low self-esteem. She was bullied. They would make fun of her.”

By the time she arrived in California, Arminda was around 16 years old. “She was considered like a doll, exotic, and so she got the attention that she never experienced in Mexico. And she got a lot of attention from men … So her goals shifted. She was like, ‘Okay, I can get a job, I can get married, I can start a family. Everything’s gonna be great.’”

“She had this aura about her,” Alma explains. “She always gravitated towards people. She was so helpful. Very charismatic. Everybody loves her, even now. You’ll see strangers walk by her and she’ll say hello and they’ll come over to her and try to talk to her … She just has this presence about her that’s always been there.”

Arminda married Alma’s father when she was 18 years old. They had two daughters, five years apart. “I remember when I was a little girl, mom was a mom. You know, Suzy Homemaker. She worked at Bank of America. She was an administrative assistant. She loved dressing up. She always had her suits. Very organized. She had a walk-in closet. Beautiful. Very clean. Very well known in the community. She was very involved in church. And my parents were just good parents.” Alma and her parents would go to the beach, travel down to San Diego and up to Santa Barbara. Alma and Arminda would stroll through the Rose Bowl in Pasadena together. They would go on drives. Arminda loved to drive. 

And up until Alma was a teenager, Arminda also cooked a lot, “tons of dishes, desserts, everything … She would make chicharrón, pollo and chili verde, flan, cheesecake, mole…” Alma pauses to remember and then continues, “Oh my god, her mole! And lentils. Oh my god, her lentils were delicious. My kids actually really miss her lentils.”

But after some time, “one of Arminda’s sisters convinced her that she was working too hard and that she should hire people to do things for her.” Arminda was resistant at first, but, at least for a time, they had the financial means and, “once my mom got wind of hiring people to do things for her, eventually we had people who would cook for us, clean for us, wash the car for us. My mom really got into that idea of having everything catered for her … She eventually didn’t need to do anything. Everything was done for her. So eventually she stopped cooking.”

Then Alma’s father lost his job and finances became tight. “Mom started to worry and probably think back to her childhood and that she was going to suffer again. And I think that was too much for her brain to really handle. So little by little, she would start lying about different things, especially when it came to money. She would start overspending or she would lend money to her siblings. Things started to unravel. Arguments with my parents started to increase. Life just started getting really hard for mom. And I remember hearing her say that she just didn’t want to remember. She would just push memories to the back and say, ‘I just want to forget, I just want to forget.’”

When Alma was in college, she started to notice “mom was not well.”  By then, Arminda and her husband had divorced. “And that divorce was brutal. And her finances just were all over the place. She started to gamble. She started to have friendships that were not good for her. She started inviting homeless people into her home. Her drinking problem was really bad. She was getting lost driving.”

So the family brought Arminda to the doctor.

A Frontotemporal Dementia (FTD) diagnosis often takes many years to receive because this early-onset dementia can be mistaken for many psychiatric conditions such as depression, bipolar disorder, and schizophrenia. While healthcare professionals are generally familiar with the early symptoms of Alzheimer’s Disease, they are often less familiar with early symptoms of other dementias, such as FTD. Many people associate dementia with memory loss, but early on in FTD, memory loss is not a typical symptom. Instead, symptoms can include changes in communication abilities or changes in behavior and personality, such as impulsivity, decreased empathy, and more. In fact, binge drinking, gambling, and many of the behaviors Arminda was displaying were consistent with FTD. 

At Arminda’s appointment in 2015, the initial diagnoses were depression and alcoholism. This did not explain everything, but many family members expressed that they felt Arminda had always been this way. Alma felt there was more to it, that perhaps her mom’s traumatic past was influencing her actions, but that there was something else underlying the sudden severity of her behaviors.

Alma had to sell Arminda’s house and Arminda moved in with her sister for a few years. During that time, Alma continued to set up appointments with different doctors and specialists until finally, in 2017, Arminda was diagnosed with Frontotemporal Dementia. She was 63 years old.

“Now talking to my dad about it, the things that he tells me and different stories that he shares of things mom used to do, they make sense now. But he still has a hard time understanding how he could not see it.” 

“You didn’t know,” Alma reassures him, “We are just learning about FTD … How could we know?”

But even today, there are many family members who say, “She’s always been like this. She’s always had these tendencies,” finding it hard to believe that FTD could be behind her behaviors. “It goes to show that mom was already sick for a long time. And it just gets to a point that we have to kind of accept it and navigate what we’re dealing with now.”

“The challenging part actually is trying to make the family understand what we’re dealing with,” Alma shares. “They really think that my mom is faking it and that adds stress. Trying to convince other people to understand is even more frustrating.”

But Alma acknowledges that her experience of her mom is different from the experiences of others in the family. For example, when symptoms really started to emerge, Alma was in college, but her little sister was at home and she “got to see all that bad side. She got to see a lot of things that my mom did. So I know that most of her feelings now and her frustration [is related to the fact that] she’s still harboring those feelings.” Alma understands why that is hard to move past.

And despite differences in opinion, members of the family have tried to support Arminda. She lived with her sister until 2019, but her sister was also caring for another sibling who was living with Alzheimer’s Disease. “It was just too much for her.’”

So Alma moved Arminda in with her family in 2019. She got to work right away, enrolling her mom in a day program and making sure she had the right kind of support. “I found a day program that didn’t really offer services for people living with dementia, but they fell in love with my mom. They really, really fell for her. And they saw the desperation in my face.” Arminda has been very active in the program, socializing, participating in activities, helping to clean. But Alma has needed to provide direction throughout since the program is not familiar with FTD. And due to the progressive nature of the disease, Alma says that the day program will eventually no longer be able to support her. “Now, she’s not understanding different directions and she gets a little more aggressive, so I know it’s coming soon that they’re going to say they can’t support her anymore.” 

Arminda is also an exit seeker, meaning that she frequently attempts to leave. Exit-seeking can happen for a variety of reasons, ranging from boredom to concern to a sense of duty to a trauma response and more. A consistent daily routine can help, along with carefully curated activities that account for a person’s specific interests and needs. For this reason, Alma is constantly finding new ways to engage her mom to keep her calm, comfortable, and safe. Many day programs do not have the training or resources to provide this kind of personalized, thoughtful care. “It’s becoming hard to have her just settle down. And so it’s pretty much going to fall on me.”

“I am able to [do this] because I have support through social media,” Alma notes. “I am also able to help others [whose family members are living with FTD]. That is rewarding for me and that is my escape, helping others and being able to create awareness.”

But Alma worries about her immediate family, her husband and children. A member of the Sandwich Generation, a term used to describe people who are simultaneously caregiving for both their parents and their children, Alma often finds herself being tugged in different directions. 

While the family has found restaurants in the area that are welcoming and accepting of Arminda and the family’s specific situation, there are many activities and events that the family is unable to be a part of because they would cause Arminda too much distress. Accommodations aren’t always available. And so, “we are stuck.”

While Alma’s son is in his twenties, her daughter is still in middle school. And Alma considers the ways that FTD impacts her. “My little girl will be sitting on the couch and my mom will just hover over her and be talking down to her … She’s like, ‘I have tests on my mind and I have social drama and I come home and grandma is in my face.’ And that can be hard.”

Additionally, when someone is living with FTD, verbal communication can be extremely difficult due to degeneration of parts of the brain that are associated with language. Therefore, a person may pick up more on non-verbal cues or, as some people refer to it, the energy of their caregivers. This means that a caregiver’s very valid bad mood can actually result in an increase in distress for the person living with FTD. This also means that a teenage girl coming home from school in a perfectly understandable bad mood can trigger agitation. Alma understands that it isn’t easy to remain calm. She validates her daughter’s experience, but also reminds her of the reality of the situation. “I explain to my little one sometimes if you come in with that energy, which is very okay, she will absorb that energy and it just gets her even more agitated.” 

“It’s exhausting,” Alma shares. In fact, she says it twice. But she also explains that she is “trying to make the best out of a difficult situation.” She wants to learn as much as possible about FTD, knowing that it can be genetic, and that other family members may be diagnosed in the future. Even now, three family members have Alzheimer’s Disease, another family member is living with Parkinson’s Disease, and Arminda’s younger brother was just diagnosed with a psychiatric condition, but Alma strongly suspects FTD.

And in trying to make the best out of a difficult situation, Alma has learned a lot about herself and who she wants to be. She previously worked in fashion design, but always wanted to work for a company that gave back to the community. She sought socially conscious employers and enjoyed her work, but “always felt like something was missing.” And now, as a caregiver, she has realized, “This is my calling. Even as hard as this can be, I feel like there is a reason why I’m doing this.”

It runs in the family. “My mom has always wanted to help. Same with my dad. Both my parents have always wanted to help the community. So I know that that same spirit lies in me. I want to help others so that they don’t feel like they’re alone in this situation. It’s a disease that is out of control.” Alma receives many messages from other caregivers who let her know that her stories are comforting to them. “It makes me feel good that I’m able to help them out.”

Alma likes to remind other caregivers,“Life does not end with the diagnosis. It’s sad. It’s hard. But it’s not the end.” That was how she felt at the beginning. She thought, “This is it, her life is over, we’re gonna be trapped.” And there are really hard moments. “We feel like we’re being held back from living a certain life that we would want to. And you just have to really shift gears and shift your perspective and be as positive and as grateful as possible,” Alma explains. “Don’t lose those moments of gratitude. Really really focus on the good things that you have. And that it’s not over. It’s not impossible.” 

And Alma believes in the power of finding your people and investing time in a community that understands. “Find that circle,” she says. “There are people out there who will help support and who understand. And I know that the biggest challenge is you want the family to understand. You want the family to support you. You want the family to be there. And maybe they will, maybe they won’t, and if they won’t that’s okay. There are others that need your support. Find that circle.”

With the support of her online community and with the memories she carries as a daughter, Alma navigates caregiving in a way that honors her mom’s past while respecting her present. She focuses on activities that Arminda has always enjoyed, like going to church and the farmer’s market, and engages her in those activities as much as possible, accommodating for her brain changes. For example, Arminda enjoys choosing different fruits at the grocery store while Alma supervises. They go on car rides together to calm down. “She always liked to drive. Driving was like her way of escaping … Even though she’s not the one driving [now], it does soothe her.”

“Yesterday, family was here,” Alma remarks. “Dad’s watching football, we’re in the kitchen cooking, mom is just bouncing all over the place. Once they were gone, she was very agitated. She could not sit still. I pulled out everything I could, different activities, music. She would not settle. And when I was talking to her, she was just getting very agitated and so I couldn’t even communicate with her.” 

“It is not mom,” Alma reminds herself in these moments. “It is the dementia. The dementia has complete control here. So don’t get frustrated.” And so they went on a drive. “Let’s take mom into a place where she can just settle,” Alma thought. “Let’s use the motion of the car to just cradle her and relax her. I put on some music for myself because I needed some good tunes. We drove to get some boba. We came back home and she was calm. I just really needed to help her get past it and then once we got home, she was herself again.” 

Through the dementia, Alma saw and will always see her mom, a woman who has had a complicated life, whose decisions have not always made sense to the family, but who was a good mom, a charismatic, helpful person, and who is continuing to engage in life with her daughter’s help. 

You can follow Alma and Arminda’s story on Instagram: @thecaregivercomadre and @mom_has_dementia