In the middle of it all: Caring for my dad, raising my daughter, and still somehow showing up for me
Alexis Hart as told to Liz Tenety
I live in Las Vegas with my husband, my three-year-old daughter, and my 15-year-old stepson. My dad, who’s 67, also lives with us. He lives with early dementia.
My husband and I got engaged 12 years ago. We went to Maine to tell my family. My dad said, "Okay, I need you to take me to this doctor's appointment." That’s when we found out he had stage 3C colon cancer.
Doctors gave him six months to live. We are now 12 years, 13 years later. He’s doing great—except for the dementia.
I think some of the chemo, because it was pretty experimental, might have contributed to the early onset dementia. It's not necessarily common in my family.
So, we’ve pretty much been taking care of my dad for the last 12 or 13 years.
Balancing Two Different Kinds of Care
When we first moved to Las Vegas in July 2023, we knew he had to come with us. We got a house where he has his own space, his own living room, bedroom, bathroom.
But it’s hard.
I'm either worried about Dad and his appointments or about my daughter and hers. And I'm actually getting a lot of flack from my own doctor because I'm not taking good care of myself.
I work remote East Coast hours, so I'm up at 4:30 AM. I jump on the computer, then I get my daughter ready for school.
Dad is pretty independent with his breakfast, but I heat up some leftovers for his lunch. My husband takes our daughter to school.
At 3:45 PM, we pick her up—Dad usually comes because he doesn't like to be in the house all day.
He still likes to go for walks. He’s gotten lost twice—thank God for his Apple Watch with GPS, because we were able to find him quickly.
We try to keep him as independent as possible. The doctors say that helps slow the progression. But I do things like pay all his bills, take him to all his doctor’s appointments, take him grocery shopping, make sure he has food that’s healthy.
He’s 67 years old. He can make up his own mind about what he wants to eat. If he wants a cookie, I’m not going to say no, even though maybe he shouldn’t have cookies every day.
Parenting vs. Caregiving
With my daughter, I'm teaching her. With my dad, there’s no teaching. It’s just kind of accepting.
That’s what’s hard.
He used to be so independent. He had his own way of doing things.
Now, it's disheartening.
My husband helps a lot. When I went to get my doctorate, he took over everything except the finances—every doctor’s appointment, every follow-up, every little thing.
I’m grateful for that.
But sometimes, my husband still gets frustrated. He’ll remind my dad where something goes, and I have to say: “He's not going to remember. No matter how many times you tell him. No matter how frustrated you get. He’s not going to remember.”
Over the last year and a half, we’ve had to work through that as a family.
He Says He Doesn’t Have Dementia
If you ask him, he’ll tell you he doesn’t have dementia. He’ll say, "I’m 67 years old. I should be able to have a beer if I want a beer."
He doesn’t drink anymore, but if he wanted one? Yeah, I’d probably let him. Just not every night.
If he's prediabetic, he shouldn't have a cookie every night. I’ve made him sugar-free cookies before.
It’s a balance—getting him to listen to the doctors while still letting him have control over his life.
Advice for New Caregivers
Don't forget to take care of yourself.
I know that’s something I’m just learning myself.
Right now, I'm not sleeping. I keep putting off going to the doctor to figure out why. And that stress just builds.
If you don’t prioritize yourself, you get to the point where you’re not helpful for anyone.
What I Wish Caregivers Had
If I could wave a magic wand? I’d want an assistant.
When my dad was going through cancer treatment, we had so much support. The hospital would book our travel, handle all the appointments, even offer massages and acupuncture for family members.
They really took care of the caregivers.
With dementia? You’re on your own.
I didn’t even know what resources were out there until my dad met a woman—he called her Sister Jenny, even though she wasn’t a nun.
She’s the one who helped us understand what help he was eligible for—things like disability benefits, setting up power of attorney, the stuff no one tells you about.
If I had to pick the perfect thing? It wouldn’t even have to be a person. Just an app that keeps track of everything—appointments, medications, bills, notes.
Something to make this easier.
What My Dad Taught Me
He always said, “Your name is everything. Work hard. Prove who you are.”
That stuck.
It got me through school, through my doctorate, through everything I’ve done.
This experience has forced me to be organized. If you’re not, you’ll end up dropping the ball—missing doctor’s appointments, forgetting to pick up prescriptions.
I’ve also learned something else: You have to ask for help.
That was hard for me. I used to think I had to do it all.
But leaning on my husband, on other people, isn’t a weakness.
Every day with my dad is a gift.
I don't know what’s ahead, and honestly? I don’t think about the future too much.
I just take it day by day.
A Navy Captain, a father, and a final lesson in love
Mai Nguyen-Le as told to Liz Tenety
My father was a man of few words but immense strength. A former captain in the navy, he made the difficult decision to leave Vietnam in 1975 so that I could have a better life. It was a painful choice—he had to leave behind his family and everything he knew. I was only four months old when we fled, first to Hawaii and then to California, where my father eventually settled in the Bay Area.
Despite the hardships of starting over, my father remained kind, generous, and hardworking. He came from a well-off family in Vietnam but arrived in America with nothing. He rebuilt his life from scratch, eventually working as a technician at Abbott Laboratories, where he stayed until retirement. Even then, he wasn’t one to sit idle—he helped me with deliveries at my flower shop in Sunnyvale, always using a paper map to plan his routes, even as digital maps became the norm.
My father’s devotion extended beyond his work. When I had my first child, my parents drove from Sunnyvale to San Jose every morning to help care for him. As my sister and I had more children, they continued to be there, watching over their five grandchildren until they were old enough for school.
The first signs of change
In 2013, we started noticing small but concerning changes. At first, we thought it was just aging—misplacing keys, forgetting small things—but then it became clear something more serious was happening. He started showing paranoia, convinced someone was trying to break into the house. He insisted we change the locks multiple times. He also believed his mail was being stolen, but recently, while cleaning out my parents' home, we found stacks of mail hidden in a kitchen cabinet, forgotten.
Another sign was his confusion over simple tasks. My mom would ask him to grab something from the kitchen, and by the time he got there, he had already forgotten what he was looking for. We took him to a neurologist, but he passed all the cognitive tests. They told us to monitor him, but as time went on, his forgetfulness worsened. Eventually, he stopped talking. He lost his ability to communicate, and later, his mobility declined, leaving him fully dependent on us for care.
The decision to keep him at home
As his condition worsened, we had to decide whether to place him in a care facility or keep him at home. For us, there was never really a question. In Vietnamese culture, caring for aging parents at home is a deeply held value. Elders are respected, and families take pride in looking after them, ensuring they remain surrounded by loved ones. My mother became his primary caregiver, and my sister and I helped whenever we could, coordinating shifts on weekends.
When COVID-19 hit in 2020, everything became even more uncertain. We had our caregivers take time off and took over full-time responsibilities ourselves. It was exhausting, but we knew that keeping him in a familiar place, with familiar faces, was the best thing for him. Even as his mobility declined, we adapted— getting a wheelchair and a hoyer lift, pureeing his food, and thickening his liquids to prevent choking. Every adjustment was made to keep him comfortable and safe.
The final years
As Alzheimer’s progressed, my father needed increasing levels of care. He lost his ability to swallow properly, requiring a suction device to prevent choking. He was in and out of the hospital for infections and other complications. Each hospital stay made it clear that he did better at home.
In unfamiliar environments, he became agitated and refused to eat, but with us, he remained calm and cooperative.
In time, this led to having a feeding tube put in. Eventually, we had to consider hospice care. At first, we thought it meant giving up, but we soon learned that hospice was about providing comfort in his final days. The hospice team taught us how to administer medication and care for him at home, ensuring he remained as comfortable as possible. He passed away in October 2022, just one day after his 83rd birthday.
Lessons in caregiving
Caring for my father taught me so much. If I could give advice to others on this journey, it would be:
Plan ahead. Establish power of attorney early. Without it, managing medical and financial decisions becomes an unnecessary struggle.
Find support. Organizations like the Alzheimer’s Association provide resources and guidance. You don’t have to go through this alone.
Advocate for your loved one. Medical professionals may not always understand the nuances of dementia care. Be vocal about your loved one's needs.
Take care of yourself. Caregiving is all-consuming. You can’t pour from an empty cup. Looking back, I realize self-care is just as important.
A changed perspective on life
Going through this with my father changed my entire perspective. I wake up every day grateful for my health and my ability to care for my family. Watching my father lose his ability to speak, move, and care for himself reminded me how precious those abilities are. Now, I prioritize exercise, mental stimulation, and self-care in ways I never did before.
I often wonder what my father would have said about everything we did for him. He was a man of few words, but I know he would have told us not to worry. Still, there were moments when he let his emotions show—moments when he cried out of frustration. Those were the hardest. And in those moments, I knew beyond a doubt that keeping him at home, surrounded by love, was the right choice.
My father may no longer be here, but his lessons live on—in the kindness and generosity he showed, in the sacrifices he made, and in the love that continues to bind our family together.
This story is part of elbi’s Real Stories of Care series—a collection of personal journeys generously shared by real caregivers. If you’d like to share your own, we’d love to hear from you at hello@askelbi.com.
A daughter’s journey through love and caregiving
as told to Liz Tenety
My dad, or as we used to call him Papa, (but now Poppo) was always an imaginative, joyful, intelligent, athletic, and deeply engaged man. He was a professor at Cal State LA, specializing in Secondary Education and Instructional Technology. He had a deep passion for learning and sharing knowledge, creating educational videos that were widely used in nursing programs across the country. His curiosity knew no bounds—he spoke German, and kept it up after meeting my mom in Heidelberg, dabbled in Spanish and Latin, and was always eager to hear other people’s stories. He was the kind of dad who would get on the floor and play with Little People after work, who taught my brother chess in the hospital (my brother later became an international chess champion), who wrote a song for me when I was born. His love of learning and curiosity about the world shaped our family, and even now, despite the challenges of dementia, his inquisitive mind, warmth and humor shine through.
My parents' unwavering commitment and care played a crucial role in my brother’s life, also. Born with cystic fibrosis, my brother faced immense medical challenges, but he lived to the age of 25—far beyond what many expected. This was largely due to my parents' relentless dedication. They ensured he had access to the best medical care, advocated for him tirelessly, and created a loving, supportive environment that kept him going. Watching their devotion instilled in me a deep understanding of resilience, the importance of unwavering support, and the profound love that comes with caregiving. Both my sister and I stepped in a lot to help, too. It was a true family effort.
I am the youngest of three children. Losing my brother at 17 was a profound loss and also, so hard for my sister being the middle child, who was with him before I came along. My parents’ example of strength and unity, even through their divorce, reinforced the values of connection and family. My dad remained an active presence in our lives, always offering his boundless curiosity, warmth, and life advice. After he spent years living independently in California, moving between Los Angeles and San Diego, things started to change.
The first signs
The first real warning sign came when my dad, a man who prided himself on his independence, suddenly stopped returning calls one weekend. It was unusual. My sister and I grew increasingly worried and decided to check on him. That’s when we learned he had been arrested for a DUI. He told us, laughing, “Oh, sweetie, I was in the slammer.” His ability to make light of any situation was intact, but we knew something deeper was happening. He was getting lost, confused, and struggling with simple tasks. His intelligence made it easy for him to mask a lot of it. But getting a DUI was uncharacteristic of him. He would’ve never gotten in the car in the first place normally. Though barely over the alcohol limit, he was going so slowly, which is why they pulled him over. His level of impairment was a combination of the alcohol consumption but also the way his mind was working at that point. Truly, he was lost.
We made the decision to move him back to Los Angeles in 2014, still without a formal diagnosis. He started in an independent living facility, but as time went on, we realized he needed more support. His driver’s license was taken away, his world started to shrink, and his memory continued to fade. But through it all, his spirit remained strong.
The hardest transitions
The transition into assisted living was not easy. My dad, ever the social butterfly, loved engaging with people—especially the caregivers, whose young minds fascinated him. He found a friend in a fellow resident and charmed his way into the hearts of the staff. But the challenges kept mounting. He suffered falls, underwent surgeries, and his condition worsened. One particularly devastating fall resulted in a brain bleed, accelerating his dementia. It was a turning point. He was never quite the same after that.
We moved him multiple times, each transition coming with heartbreak. There was a brief attempt at board-and-care, but he didn’t adjust well. Eventually, he moved into a memory care facility. It wasn’t perfect—no place ever is—but it was the safest option. Even then, the struggles persisted. A severe, undetected pressure wound nearly cost him his life. The negligence was infuriating, and we fought to ensure he received better care.
Living in the moment
Through everything, my dad’s kindness and resilience have remained. He still greets me with warmth: “Sweetie, so good to hear your voice.” When we visit, we sing Bob Marley’s One Love together: Let’s get together and be all right. He’s always been so musical playing piano, still tinkering on it today, and also Spanish guitar in the past. My husband and he talk about music a lot. He also tells us, “You look marvelous, darling!” (said like Billy Crystal). He can still carry on some great conversations, even if they repeat. Known as Uncle Bob, amongst our cousins, he’s definitely a favorite. He hasn’t forgotten who we are—an immeasurable gift that I treasure every single day.
He still talks about traveling to Germany. We never tell him it’s impossible; we meet him where he is.
That’s been the greatest lesson in all of this—living in the moment. Focusing on joy rather than loss. Caregiving has tested me in ways I never imagined, but it has also deepened my love for him, for our family, and for the small, precious moments that make up a life.
I've worked as an actress and one of the things I’ve come to realize is that caregiving is a lot like improv. You have to go with the flow, accept what’s happening in real time, and respond with patience and humor. There’s no script, no perfect way to navigate it. You just do your best, say “yes, and…” and adjust to the next moment. That mindset has helped me find lightness in what could otherwise feel overwhelming.
I don’t know what the future holds, but I know this: my father is still here, still laughing, still singing, still loving. And that is everything.
This story is part of elbi’s Real Stories of Care series—a collection of personal journeys generously shared by real caregivers. If you’d like to share your own, we’d love to hear from you at hello@askelbi.com.
I thought my husband had a brain tumor, but he was diagnosed with early-onset Alzheimer's
as told to Liz Tenety
My husband and I met at Rutgers University, when we were in college. We met the one time he was in the library in four years. And I thought he was adorable. He had black curly hair. I just thought he was so cute. He was also wild. The second day I saw him, he had a bloody gash on his forehead, which I later learned was just one of many head injuries to come. But he was so fun and literally the funniest person I'd ever met in my life.
He was also the smartest person I have ever met.
When we were 23, we got married. He was in dental school in Baltimore, and then did his residency at Johns Hopkins. Then, we moved back to New Jersey. My husband started a general dental practice and did that for 30 years. He was beloved by his patients. He was the most popular dentist and everybody just loved him. He was very patient, very kind and excellent with the work.
We raised our kids, put our three kids through 12 years of college and then finally said, ‘okay, now we're done with college!’ It was like we built our life up to raise our children, pay for them to go to college, and we were on the same page, expecting a new phase of life together. And then we found out about his early Alzheimer’s diagnosis.
For a while I felt literally like I got to the top of the mountain and then somebody just smacked me right off of it. I was back at the bottom again like oh my God. That is how I felt for months, probably a year.
I had noticed that he was getting forgetful and that was not like him. He never got forgetful at all, he was like a homing pigeon with directions. Like if he was somewhere once, 20 years ago, he could drive there. And then he started having trouble getting back home to New Jersey from Manhattan. He was misplacing things. He was forgetting things.
My husband’s Alzheimer’s came on quickly. I knew something was wrong. So I shared it with his parents, and his sister, who's a doctor. They said they didn't think so, but I knew …I knew him so well. So, I took him to a neurologist. We went for some neurocognitive testing. I took him for a spinal tap at Rutgers. I honestly thought maybe he had a brain tumor, but he had Alzheimer's. He was diagnosed at the age of 57.
There is no family history of Alzheimer’s. Of the three known Alzheimer’s genes, he doesn’t have any of them. He didn't have a high level of body inflammation. As a dietician, I know Alzheimer's is sometimes called ‘Type Three Diabetes.’ Didn't have that. He had normal glucose.
However, I think it was his lifestyle: He didn't sleep enough. He slept five hours a night, had a very stressful, fast-paced job, and he had multiple head injuries over the years. He had a skiing accident where—he was really a fearless daredevil—he had skied into a tree on a double black diamond without a helmet. He also fell off Mount Katahdin hiking with my daughter.
And then you pair that with the stress, with not eating as well as I did, not sleeping enough, I suspect it created neuroinflammation in his brain.
He was diagnosed in the worst way, through telehealth. Both of us had an afternoon of patients and in between, we had a telehealth conference where the neurologist said, well, you have, early onset Alzheimer's. So set an appointment for a month and okay, bye-bye. It felt so shocking and so harsh, with no empathy, no support, nothing.
For weeks, I would just cry. I couldn’t talk much about his diagnosis. I couldn't. As soon as I opened my mouth, I would cry. But you have to allow the grief because you can't just hold it in. You have to grieve for the part that you are losing. For weeks, I couldn't even talk about it without crying, but then it passed. Then I thought, ‘okay, this is what it is.’ This is what I have. And so let's do the best we can do with this new life, right?
Being a dietitian/nutritionist, I am a researcher and I read literally everything I could find on Alzheimer's and the cause and the treatment and lifestyle recommendations and the latest research—everything. It just became my mission.
So, I put him on a strict protocol. I got him off of sugar. I put him on a low glycemic index diet, the way that I eat. I started him on time-restricted eating and supplements to help with cognitive flow and to help decrease inflammation. He's a perfect patient. He lost 25 pounds. I make sure he sleeps well. I make sure he exercises. We're doing all the things to prolong this journey. I don't know what will happen in the journey, but I'm doing my best to prolong it.
You can't worry about the future because we don't know what will happen—nobody knows what will happen with anything! You just have to enjoy the day that you're in, and not be reckless. You have to plan somewhat, but not obsess. You just try to live in the moment that you have, that's what we try to do.
When a spouse becomes a caretaker, it's a different relationship. And I think as caretakers, we have to understand that and move with it. For example, intimacy will change, so perhaps it means you’re taking a bath together. You have to adjust to it. Your spouse is not going to be the same. You can't expect that they will be, and you can't get angry at them. It's not their fault. They have it. You have to love them in a different way. The love is the same, but it's a different relationship.
What keeps me going is what I do have. I do have the time that I have with my husband. I’m grateful for the time that we get with our kids. Not every day is a great day but the great days are great days and they make me really happy.
That said, it's hard to figure out the next step when you don't know the timeline of this because it is very unpredictable.
To the spouses who are caretakers, it's really important to recognize that your life will change and accept that it will change and find the best in that change. Life together is different, but it can still be special.
This story is part of elbi’s Real Stories of Care series—a collection of personal journeys generously shared by real caregivers. If you’d like to share your own, we’d love to hear from you at hello@askelbi.com.
The heartbreak of losing my scientist father pixel by pixel, and using his story for good
Julia B as told to Liz Tenety
My dad was an absolutely amazing, brilliant computer scientist who worked on lunar research with NASA for the team that figured out why the moon reflects light the way it does.
He was part of the team where, when the lunar regolith samples [moon material] came back down in one of the Apollo modules, he actually went out on the Ticonderoga and got to meet the capsule. He also worked with the USSR during the Cold War and worked internationally with scientists.
He was an incredibly curious person, just constantly trying to figure out how the pieces fit together. Asking questions like, why does the moon reflect light? I don't even know how to describe most of the work he did because I don't know those scientific words. Now, I'm trying to read his papers, and I'm realizing I actually have no idea what he was writing about.
I wish I had gotten more of those stories out of him before the early Alzheimer's took his words.
My dad had been losing his words for most of my life in a way that we now realize retrospectively was Alzheimer's.
He was the kind of dad who, when I asked him, so why does the moon change phases? He got out a ping pong ball, a flashlight, and the globe and would try to explain to me. And I like to think I got his version of curiosity.
The hardest part about Alzheimer's was watching his brain lose its curiosity and get stuck in these loops that he couldn't get out of. It was incredibly painful to watch a man who spent so much of his life processing the world around him, then later not be able to process the world. By the end, he hit the point where he couldn't open and read the birthday card that I gave him. He couldn't open it. We're talking about a man who had a PhD.
We knew something was really wrong when he got lost driving to meet me at a place we had driven to together for decades. He got lost driving on the main street and could not find his destination despite having a GPS, despite having a map. Despite having all of that, he could not find his destination. That’s the moment I knew for certain we had crossed the threshold. And that’s when I had to take his car keys.
We basically forced his hand into getting evaluated and at that time, it showed Alzheimer's or dementia of some variety. He fought that; he thought the testing was wrong, which it wasn’t. It was a very difficult time for him to be a witness to his own cognitive decline. He would say, “I’m lost all the time,” which is just horrible because he was aware that he was lost, aware that he was confused, aware that he didn't have his words right.
To see this man struggle and decline, this man who had been such an incredible scientist, working with NASA, spending his whole life engaged in scientific inquiry, it was absolutely heartbreaking. I would not wish this disease on my worst enemy.
It was like losing my father pixel by pixel.
At first, I didn’t identify as a caregiver because my father was living in an assisted living community. But then I realized I was paying my dad's bills, I was doing his laundry, I had taken on most of the responsibilities of caretaking and life coordination for my dad. I became his caregiver.
Even though I was not living with him and he was in an assisted living community, I was still the 24/7 backdrop of his life. I was always on call. I never knew what each phone call was going to give me—because they have to call you for every band-aid, and I wanted them to call me—but it was just absolutely grinding. I was in a constant state of alert. It was hypervigilance: you're waiting for the other shoe to drop at any moment in time.
In the last eight months of his life, when he no longer knew who I was, that's the moment I would say I stopped being his daughter and started being more of a caretaker.
All the resources I had available to me were all very basic. I'm over here drowning! Trying to get him to agree to shower and let me cut his toenails, and he won’t eat his food and he’s trying to move to Australia or walk to Wisconsin. I didn’t need to know what stage of Alzheimer's that is. . . I just need to know how I'm supposed to survive this. There was no manual for that. . . I wish I had had access to the daily tips and tricks of how to work with the Alzheimer's brain.
I want other caregivers to know that they shouldn’t be afraid to ask for help, or to just fall apart every once in a while. You’ll have to pull yourself back together, but it’s okay to fall apart.
It’s the little things that keep you sane during this journey.
For me, I kept a photo of my dad on my desk for years that was classic,‘My Dad’. . When I looked at this photo it's the love in his eyes that looks like the dad I knew. I had to keep that photo on my desk so that when the phone rang for the 27th time with him calling me trying to charge his TV remote with the computer charger, or not knowing which end was up, I had the patience to not let the frustration show up in my voice. I needed to remember who he truly was, and not always focus on what Alzheimer’s had done to him.
When I was able to keep his true essence in my mind, it helped me stay patient, to not let the frustration show up in my voice.
That is the hardest thing: You cannot let them know that you are frustrated because they don't remember. You remember. But they did not choose this. They are not trying to aggravate you, they just don't know anymore. I can't imagine how scary that must be. So trying to hold on to that for them—and being there for them when they are scared.
I am sharing our story because it's what my dad would have wanted. He would have wanted there to be something good that came out of this horrible, horrible experience. And so anything that I can do in his honor, I'm going to do. But that's also who I am–and who he was.
This story is part of elbi’s Real Stories of Care series—a collection of personal journeys generously shared by real caregivers. If you’d like to share your own, we’d love to hear from you at hello@askelbi.com.