5.4M+

Estimated Child Caregivers in the U.S.

Age 11

When Sadie Became Her Father's Caregiver

60K

Americans Living with FTD

1st

Teen Caregiver Featured in Our Series

"But when you're a good swimmer, people tend to forget that you can drown too. Even though it's been five years, it still feels like I just lost him yesterday — and I wish more people just understood that grief never really just goes away."

— Sadie

The Hidden Army

America's Youngest Caregivers, By the Numbers

Before you read Sadie's story, understand this: she is not an exception. She is one of millions.

📊 An estimated 5.4 million children under the age of 18 in the United States provide unpaid care, support, and assistance to family members — according to the American Association of Caregiving Youth (AACY).

📊 A 2024 Johns Hopkins Bloomberg School of Public Health study estimated that roughly 1.6 million youth ages 15–18 — about 9.2% of that entire age group — are caregivers for an adult, with another 2 million caregivers ages 19–22.

📊 Young caregivers experience higher rates of social isolation, depression, anxiety, and school absenteeism than their non-caregiving peers.

📊 Frontotemporal Dementia (FTD) affects an estimated 50,000–60,000 Americans and takes an average of 3.6 years just to get an accurate diagnosis.

Millions of kids. Almost no recognition, no federal policy, and very little press. That is exactly why this conversation matters.

1. The "Comfort" Paradox: You have Matthew 5:4 in your bio. For many, mourning is a temporary season, but for a young caregiver, it can feel like a constant state of being. How has your definition of "comfort" evolved from when you were a child at home to now being a student at college?

My definition of "comfort," as a child, came from my parents. A loving mom and dad provided me with good education, good food, and a roof over my head. When my dad was diagnosed with Frontotemporal Dementia (FTD), I was only 11. The father, who used to comfort me in times of need, became a "monster" in my eyes. I had to learn to continue to find comfort in my mom and siblings, while also finding it in the things I enjoyed: sports, music, drawing, writing, etc. My means of "comfort" became my lifelines, as I navigated the different person my father was becoming.

Now, as a 19-year-old college student, my definition of "comfort" has changed but yet has still stayed the same. I still find comfort in my family and in the things I enjoy, but I also use the fact that my father is no longer in pain as a way to battle the hard days of grief.

2. Finding the Divine in the Mundane: Can you describe a specific, perhaps "messy" caregiving moment where you unexpectedly felt divine comfort or a sense of purpose?

I can't really narrow down to one specific moment, but rather, the fact that I seemed to "calm" my father down the most. It helped me realize that, even though these moments were scary, intense, and exhausting, my father was still somewhere in there. Despite his deteriorating mind and horrifying actions, he was still my father. He will always be my father.

"Despite his deteriorating mind and horrifying actions, he was still my father. He will always be my father."

3. The Stolen Childhood Myth: Do you feel you lost your childhood, or simply traded a traditional childhood for a different kind of depth?

There's a part of me that wants to say that I didn't lose my childhood, but I feel like I did. Being an 11 to 13 year old caregiver took a lot from me, especially when COVID hit and I was locked inside with my deteriorating father for 18 months.

My unserious childhood became filled with uncertainty, pills, chasing my father around the house, changing diapers, avoiding being hit, bit, or punched. I have a lot of memory blocks and repressed memories. It has definitely shaped who I am today, but if I could change it, I would in a heartbeat.

4. The School-Care Balance: What was on your mind during a math test that your classmates couldn't have possibly imagined?

I can take you back to eighth grade, right after my father passed — January 25th, 2021. While everyone else was taking the "math test," I was replaying moments I heavily regretted. "I wish I didn't blow up on him that one day. I wonder if he died thinking I hated him?"

I eventually got so good at being "okay" that people forgot about my struggles 3 months after my dad passed. Everyone thought I was so okay that I won an award: the St. Thomas Aquinas Award for — and I quote — "handling the loss with amazing grace and strength." I always say, "But when you're a good swimmer, people tend to forget that you can drown too." Even though it's been five years, it still feels like I just lost him yesterday.

5. The Social Gap: How did you navigate being around peers who were stressed about prom while you were managing your father's health?

The height of his disease was during the COVID lockdown, so I didn't really have to navigate being around peers who were worried about other things. A lot of the times I was reassuring others and worrying about others, when it should have been the other way around. Me and my family were just blindly thrown into caregiving and did the best we could.

6. The Role Reversal: When did you first realize the roles had flipped?

I don't think my internal "map" ever changed. I just knew that I had to step up to help my father out as much as I could. He didn't know what he had, how he was acting, or what was wrong. So, I knew I had to step up and just be his protection, while being my family's strength.

"I knew I had to step up and just be his protection, while being my family's strength."

— Sadie

7. The Unspoken Tasks: What is one specific caregiving task you performed — perhaps something clinical or heavy — that you think would shock the average person to know a teenager was doing?

I performed a lot of caregiving tasks that I never thought I would even have to do in my lifetime. At this point, I have more qualifications than some professional caregivers do (jokes, I swear)! Being the youngest of the family, my mom tried to shield me away from as much of the bad as she could. My main tasks were: giving my father his pills and watching him (which entailed a lot of things).

Giving him his pills wasn't as easy as it sounds. Try having a 55-year-old, 250-pound man screaming in your face, while pushing you into walls, when all you want him to do is swallow some measly pills. To be honest, I was the only one he semi-listened to when it came to him taking them. He loved to hide them in his gums and spit them out; the amount of pills we found in different parts of the house, after his death, was crazy! Except, even then, he grew tired of listening to me too. I felt like a ninja trying to dodge his attacks, while basically forcing the pills into his mouth. Sometimes it's still hard for me to go into certain rooms in my house, when the grief days are bad, because all I can remember is the pained sounds I let out from being shoved into walls.

Again, since I seemed to calm him down the most, and I was free more than my other family members, I would have to watch him most days. Watching him entailed: following him everywhere, cooking for him, making sure he didn't escape the house, and calming him down when he would get riled up. If I had a nickel for every time I had to chase my father down our streets and bring him back home, while almost getting hit by cars, I'd have two nickels — which doesn't seem like a lot, but it's weird that it happened twice, right? One time I even had to stop him from trying to hit one of our painters with a brick; I got right in between them, ready to risk it all so that poor dude didn't get hurt. I'd even have to stop him from trying to smash our TVs with baseball bats because he thought the people on the TV were in our house. Oh geez… the list really goes on, but you get the point!

Like I said before, my mom tried to shield me, as best as she could, but all good things come to an end at some point. I did eventually have to help with changing his diapers, seeing things no 11, 12, or 13-year-old ever wants to see (especially their father's). I would help my brother move him, while he screamed at us and tried biting and scratching us. It genuinely helped me gain some pretty quick reflexes! That's just brushing the surface of stuff my family and I had to deal with, but I think it paints a pretty tough picture of the stuff my kid self had to go through.

8. The Vocabulary of Care: Did you ever feel like you were "multilingual," speaking one language at home and another at school?

To be honest, not really. We never truly learned medical terminology. We just took care of him in the best ways possible and listened to what the doctors told us to do. We basically had to treat him like a toddler, who didn't know how to function, because that's basically what his mind reduced him to.

Obviously, I did a lot of research on FTD and still do. I am very well versed in the disease, and I love advocating about it! I always teach others about it, whether it's through Instagram stories or posts, school projects, podcasts, etc. FTD is so unknown but so deadly, so I try my hardest to spread information about it!

9. The "Ghost" Responsibility: When your phone vibrates in class, is your first instinct still a shot of adrenaline?

Not really. I don't still operate in caregiver mode. However, death gives me a shot of adrenaline because my mind regresses back to my father's wake and funeral, and that's all I picture and think about for a few weeks.

10. Identity Outside of Care: Who is "Sadie the College Student" when she isn't "Sadie the Caregiver"?

Sadie the College Student is just a traumatized girl trying to get by and "rebuild" her life. She is learning to feel her emotions out, let down her walls, grow with her grief, and continue to live for her father.

Most importantly, she is learning to live the rest of her life without her father for longer than she got to live her life with him in it. She would choose her father to be her "Papa" in every lifetime, even if it meant watching him deteriorate and die in the same way every time.

"She would choose her father to be her 'Papa' in every lifetime, even if it meant watching him deteriorate and die in the same way every time."

11. The Guilt of Leaving: How did you permit yourself to pursue your own life?

I never felt "survivor's guilt" from moving out because it was so long after his death. But I do sometimes feel "survivor's guilt" for my father dying instead of me. Therapy is good — don't forget it!

12. The Hidden Army: If you could spotlight one specific policy or school change that would have helped you, what would it be?

Mandated weekly check-ins. I wanted someone to just look me in the eyes and ask, "Are you okay?" A lot of times, people just want to be asked that simple question with no judgment and just a listening ear.

"I wanted someone to just look me in the eyes and ask, 'Are you okay?' A lot of times, people just want to be asked that simple question with no judgment and just a listening ear."

— Sadie

13. The Resilience Factor: What does resilience actually look like when you're 16 and exhausted?

Finding the will to get up in the morning. Finding one positive in the day, even when your world feels like it's ending. Proving everyone FREAKING wrong. That is resilience, and it is inside all of us.

14. Advice to the Younger Self: What would you whisper to 12-year-old Sadie?

I want to take this a different way: meeting my younger self for coffee.

In Sadie's Words

I met my younger self for coffee yesterday. She had to be 30 minutes early, like always, or else she would panic. I was 5 minutes late, apologizing for snoozing my alarm. She hates coffee, so she just ordered a chocolate milk. I laughed, telling her I hate it too.

She stares at my college hockey sweatshirt with awe. I ruffle her tight curls, saying, "Yup! We still play!" Her face lights back up: "That's okay! I bet Papa is still our biggest supporter!"

I turn away, holding back some tears. "Yeah. He is," I respond. I stand up and give her a big hug, tears flow. "Don't worry, everything will be okay, and everyone is so proud of you," I say before leaving.

She'll figure it out, she always does.

15. The Legacy of Care: Is caregiving a chapter you want to close, or the foundation of your future?

Absolutely close it out. It's just too much trauma. I do want to keep advocating for FTD research and development, and I want to keep talking about my dad to keep his memory alive.

As of now, I am passionately studying crime scene investigation with the hopes of being a CSI agent. In some way, I will be bringing peace to families one piece of evidence at a time.

A Final Word

Sadie, on behalf of the entire EnhDme family: thank you. Your father's memory lives on in every game you play, every person you teach about FTD, and every young caregiver who reads this and finally feels seen.

To the millions of young caregivers out there: you are the hidden army. We see you. And to everyone else — find the good swimmers in your life, look them in the eyes, and ask: "Are you okay?"

Carry It Forward

Learn About FTD & Support Young Caregivers

Sadie asks one thing of every reader: don't let FTD stay unknown. Awareness is how the hidden army stops being hidden.

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About the Author

Kevin Lambing, CDME is the CEO and founder of EnhDme, a retail DME and home-care hardware distributor based in Columbus, Mississippi, and a nationally recognized voice in family caregiving. He is the author of Swipe Right On Care and a two-time presenter of the National Caregiver of the Year Award at the Home Care Association of America.