Life looks different for Alma Valencia since she left her job in fashion design to become a full-time caregiver for her mom, Arminda, who has been living with frontotemporal dementia (FTD) for eight years.
But Alma is still a working woman; she’s an In-Home Supportive Services (IHSS) care provider, paid through the state of California to care for Arminda in their Pasadena, California, home.
On top of it all, Alma is also a wife and a mother to two children — a 24-year-old son and an 11-year-old daughter. She is one of the estimated 11 million people in the U.S. (a majority being females in their forties) who fall into the category of “sandwich caregivers,” simultaneously caring for their children and ailing parents.
Finding and funding care for a loved one with dementia is a persistent challenge for these family caregivers — Alma and the Valencia family are all too familiar with the experience. For the past four years, the multi-generational family has lived together, navigating the trials and triumphs of life with dementia.
As Alma walks through a day in her life as Arminda’s primary caregiver, she discusses what it looks like to seek and utilize resources that help families afford at-home care for their loved ones. She offers stories and advice to caregivers balancing caregiving responsibilities as parents and spouses trying to show up for themselves each day.
On Arminda’s diagnosis and finding affordable care:
Arminda’s cognitive decline began with brain fog and memory lapses, which her family and doctors attributed to the effects of depression and alcoholism. In 2015, she sold her home and moved in with her retired sister, who was already caring for their other sister living with Alzheimer’s disease. By 2017, Arminda was officially diagnosed with FTD at the age of 65.
Alma acted as a part-time caregiver for her mother while juggling her full-time job, marriage, and raising her two children. She supported her aunt on evenings and weekends and attended doctor visits. The family made this arrangement work for two years until the summer of 2019 when Alma’s aunt realized she could no longer care for two sisters living with progressive dementia.
“She said, ‘I can’t do it. It’s too much. You’re gonna have to move her in with you.’ So that’s what we needed to do.’”
The thought alone overwhelmed Alma — she resisted, fearful that she couldn’t provide complete in-home care for her mother without any additional support. She was still working full-time, and Arminda couldn’t be left alone.
That’s when she reached out to the California Department of Human Services inquiring about the In-Home Supportive Services (IHSS), which provides in-home assistance to eligible people who are over the age of 65, blind, and/or disabled as an alternative to out-of-home care and enables them to remain safely in their own homes. The program is funded by federal, state, and county dollars through Medi-Cal, California’s Medicaid healthcare program.
At the time of applying, Arminda’s condition only qualified her for the minimum hours of IHSS care per month, which meant Alma needed to find (and fund) additional care to fill in the gaps while she continued working. With long wait lists and a hefty price tag, assisted living was out of the question. Since Arminda was considered an “exit-seeker,” many day programs wouldn’t accept her.
“They were like, ‘She’s still too young, and she’s too mobile, it’s a huge responsibility to take her in,’” Alma recalls of the rejections they faced before eventually finding a local facility with a day program that was willing to take her in for five hours a day.
“She was there in the morning, then she would come home, and I would have an IHSS caregiver receive her in the afternoon. Then I would come home in the evening, and my husband and I would rotate [caring for her.]”
The Valencia family followed this routine for nearly two years until early 2020, when covid took the world by storm. Alma lost her job, and Arminda temporarily lost access to her day program as the pandemic closed its doors. The isolation only worsened the progression of Arminda’s dementia.
“Even before the pandemic, [finances] were already kind of tight, and that was when I working full-time. We were preparing our son to go to college, and we had our little one. Then, I was just seeing how Mom was [progressing] and trying to figure out how to provide care for her. It was a lot.”
Out of work, in need of an income, and well aware that her mother needed 24-hour care, Alma began to explore becoming an IHSS provider to fund and provide care for her mom.
On becoming an IHSS care provider to fund in-home care for a loved one:
In 2020, Alma successfully enrolled as an IHSS care provider. But the only way IHSS could serve as a sustainable solution for the family was if Arminda qualified for — and Alma was paid for — the maximum number of care hours. That qualification process is undoubtedly a challenge, one Alma faced as she advocated for Arminda’s care.
“I didn’t have anything else for my mom. She has no property. She has nothing. She was stripped of everything, and that is the only way she could qualify. I think the challenge that a lot of people are faced with is [that] if they have any sort of assets, they get kicked out, they don’t qualify, or they don’t qualify for all the hours.”
Alma had to “jump through lots of hoops” to prove to the state that Arminda required around-the-clock care. She recalls the lengthy and often frustrating process — managing the paperwork, getting doctors’ signatures and full support, and figuring out what prevented her from receiving those hours.
Even still, she recommends caregivers and families in California consider IHSS if they need caregiving support, offering her best advice for navigating the process:
“You just have to really be patient with the process and see how they can help you,” she continues. “Keep asking. Keep questioning. Keep pushing. A lot of people get discouraged because it’s not an easy process, and it takes a while. If you’re able to qualify and there’s a restriction because of funds, you have to get creative with the money. But at the end of the day, it’s resources that the state provides that you can work with. It’s just really doing the research, you know, being resourceful.”
Alma’s due diligence paid off. The state eventually approved Arminda for the maximum number of care hours, which allowed the family to develop a sustainable and (mostly) affordable care plan. Arminda’s Medi-Cal insurance covers the cost of the day program, which she still attends four hours a day since its re-opening following the pandemic.
“With IHSS, I am able to support [Mom] with the maximum number of hours and still get a minute to do stuff around the house and just kind of have a little bit of self-care for myself. It provides me the time to just have a break.
I know this because, during the shutdown, I didn’t have her going to the program because it was closed. I was with Mom 24/7. There was no break. Not having that support was very, very exhausting.”
On being resourceful with finances and self-care:
While IHSS has been an invaluable resource in many ways, Alma is still only paid minimum wage. “I’m spread very, very thin,” she says. It’s forced her to be “very creative” with the family’s finances and her self-care as Arminda’s primary caregiver.
Cooking is her favorite way to keep on the family’s budget and connect with the things she loves most.
“I’ve always liked to cook; I just never really had the time or the patience to do it. But now it’s one of my love languages, you know. I really enjoy cooking, especially the Mexican cuisine. I enjoy it with my family. We’re all sitting, having a meal, and they’re enjoying the food. It’s just it makes everything better.”
Her love for cooking is also a way to keep up with her best caregiving hack: meal prepping.
“I just make sure that food is ready here at home. And the rest of the afternoon is smoother — laundry, all those other things it takes to keep a house moving. It also just helps out for the rest of the week. We’re not struggling, wondering what we are gonna do for dinner. It helps save us money, keeps a schedule, and keeps everyone fed.”
Alma also makes time for other things she loves, things that make her feel good as a person outside of her role as a caregiver.
“I do things where I feel connected to myself, where I don’t have to provide for anybody else,” she says. “I like to go for a walk, sit in nature. I like to be out, see people, be around other energy. I go to a coffee shop, smell the coffee, just get all the senses going.”
“If I’m home, especially when I have to take care of my mom full time when she can’t go to her day program, I make sure I do things to take care of myself. I take my vitamins and drink lots of water. I make sure I shower every day and put on some makeup. I’ll just paint my nails. I make myself look presentable because I just want to show up for myself.”
On destigmatizing caregiving and sharing their journey on social media:
Arminda is the youngest of 12 siblings. Alma was shocked to learn that, despite having a large family, she couldn’t depend on them for much support.
“People would tell me, like, ‘Find your village, find your community.’ So, I really thought at the beginning of my journey that people would rally around me, and it just didn’t quite work out that way. That was a huge eye-opener for me, and I knew I had to figure things out on my own.’”
Alma turned to social media, quickly finding — and creating — a community of her own. She started using the platform as a means to raise awareness and education among her own family. Now, she reaches thousands of followers documenting her life as Arminda’s caregiver.
She shares what the Instagram community has offered her and other caregivers alike:
“It’s kind of therapeutic for me to just let it out. But I also receive messages from other caregivers that don’t feel as comfortable sharing, but they’re like, ‘Please continue to share. We feel less alone,’ and that is very comforting to me, knowing that I’m providing a service. And we’re just really creating this community for ourselves.”
“Something I came across when I started my journey is that whenever we mentioned Alzheimer’s or dementia, the doctors would say, ‘Oh, that’s just part of dementia.’ It was very dismissive, and we were told we would just have to deal with a lot of these behaviors.”
“So now with the community and these connections, we’re seeing, yes, [those behaviors] are part of it. But there are solutions. We can take a deep dive into where these behaviors come from and help navigate how to deal with them. So that’s something else that has really benefited me with being on social media…seeing other caregivers and how they manage things. It’s quite beautiful.”
Alma began documenting her journey on social media under the account handle mom_has_dementia, which amassed more than 3,000 followers before being hacked a week before this article’s publishing. She has since created a new account, TheCaregiverComadre, to continue connecting with the caregiving and dementia online communities.
Documenting her life on social media is part of Alma’s greater mission to destigmatize dementia and the caregiving experience. But one of the best ways to destigmatize dementia, Alma says, is being out in public as a caregiver.
“I think people are just scared, and there are a lot of assumptions. I try to normalize dementia. I guess [I try to] normalize dementia as much as possible and kind of get rid of that stigma.”
“I take Mom out, and even though it’s going to be really hard for us to like, be out and about, it’s ‘caregivers in the wild,’ you know, we’re out there doing this, giving this care wherever we are. She’ll throw a tantrum or just acts out, and it’s embarrassing. But I’m like, we just have to push through and create awareness for people, give them a chance to see a caregiver, and allow them the space to deal with their loved one or whoever they’re caring for.”
On working through difficult behavior and managing sundowner syndrome:
The evening hours can be difficult in the Valencia home — a challenge faced by many people living with dementia and their caregivers. The Cleveland Clinic estimates that around 20% of people diagnosed with Alzheimer’s disease experience sundowning at some point.
“Sundowning was just taking over a lot of our evenings. And [our family] was paying the price, like all the focus was on my mom, [trying] to get her to calm down and just relax and wind down for the evening.”
Alma recalls a recent sundowning experience:
“Mom was spinning from noon until nine o’clock at night. She was, like, non-stop, and I had to figure out, ‘Okay, what is triggering Mom’s behavior? What is in our environment that is causing her to feel distressed? [Why is she] coming towards us, being very combative, being very aggressive, being verbally abusive? This isn’t Mom.’ So, I needed to calm the flames and relax her as much as possible.”
“She’s very active, so I had her sweeping, washing the dishes, folding the laundry, things that she normally does to help out and feel like she is supporting, just giving her a sense of purpose. I pulled out this big red ball I have and said, ‘Ok, let’s play with the ball.’”
“There are a lot of activities that will tire her out, but nothing was working. I’m like, alright, she needs to compromise. So I gave her paper, and I just had her write. She just sat there, and she started writing just a bunch of gibberish. Nothing made sense, but that relaxed her mind enough to take a minute to give me a minute to recollect.”
That moment to recollect, Alma says, is critical for managing difficult behaviors. She offers advice to caregivers about what to do (and remember) during these challenging moments.
“What I have learned is to breathe. Just taking some good deep breaths helps a lot. And really recognizing that it’s not you that’s causing the issues and not taking it personally. At the end of the day, it’s the illness. The illness is kind of in control.”
She also reminds caregivers to check in with loved ones’ doctors to discuss medications and solutions for sundowning.
“I worked with her PCP And her neurologist, and we kind of spread out her medication so that when she has those sundowning moments, I can give her some medication to kind of help her out with that. And we adjusted her medication to where she was getting most of our medication in the morning and in the evening. It’s actually been working out for us for the past month, and our evenings haven’t been as difficult.”
No day is the same in the Valencia household, and each one comes with challenges. But for Alma, the sacrifices come with one significant reward:
“Mom would always say that she never wanted to be alone. And so, having her here all the time and knowing that she’s protected gives me a sense of peace. And even though she’s not completely aware of it, I can say, ‘Okay, Mom, the one thing that you really wanted, you have now.’”
