“The Invisible Load: A Caregiver’s Journey”
I hear the familiar but dreaded high-pitched beep of my daughter’s Dexcom. My watch says 2 a.m.—65, one arrow down. How did I miss the alarm when her glucose was at 80? Why did my phone stay silent while hers pierced the nighttime quiet?
We’re just over five years into this T1D journey, and experience has taught me to keep a couple of organic fruit leathers on my nightstand. It saves time and mental energy during these groggy lows. I grab one and walk into her room.
“Hey honey, you’re going a little low. You’re safe. I’m here. Here’s a fruit leather.”
She calmly acquiesces and eats the snack. I appreciate her calm, and that she accepts this part of life now without resistance. Who resists something sweet?
I stay to make sure she eats it all in her sleepy state. Then I head back to bed and set a timer on my Apple Watch. I don’t know why, but the buzzing on my wrist wakes me more effectively than an audible alarm.
Fifteen carbs. Fifteen minutes. Repeat if necessary. Fade back to sleep when her glucose is heading back up to a safe range.
It feels like feeding a newborn in the middle of the night. It’s what moms do. But this middle-of-the-night routine won’t be outgrown.
Tonight it was me. Other times it’s my husband who tends to her low glucose levels.
Right now, we are the only two who see her nighttime needs—and respond.
(Caveat: We’re very thankful for the Omnipod 5, which has significantly decreased her nighttime lows.)
May is Mental Health Awareness Month, so I want to share a bit about the invisible journey of caregiving for our beloved daughter, who is autistic and has type 1 diabetes—among other diagnoses. (That’s a story for another time.)
What No One Sees
Most people don’t see what happens after the Dexcom beeps. They don’t see the quiet hours spent researching protocols, emailing doctors, adjusting settings, and preparing for the next curveball. They don’t see the Google Docs with medical summaries, the mental inventory of snacks and supplies, or the way I track her patterns—energy, mood, timing, tone—to make sense of what her numbers alone can’t say.
Caregiving for me is a kind of shared nervous system. I co-regulate with her throughout the day, staying attuned not just to her blood sugar, but to her whole state of being. Because when she shuts down—when her facial expression goes flat and her body goes still—I know we’ve crossed a threshold. It’s a signal. Maybe it’s sensory overload, a blood sugar dip, or just the weight of the day catching up to her nervous system. But it’s real. And it calls for gentle presence, not force.
I’ve become her external executive functioning system. There’s solid research showing the role executive functioning plays in diabetes care—how tasks like remembering boluses, planning meals, adjusting for activity, and managing tech all rely on working memory, flexible thinking, and sustained attention. But what happens when your child’s brain is wired differently? When those skills don’t develop in sync with the demands of their diagnosis? So I scaffold. I anticipate. I notice the unspoken but present realities. I pre-think decisions when she is not able to in the moment. I create visuals, use compensatory strategies such as apps and timers. I also offer her my mind to borrow when hers just can’t. It’s a quiet, constant labor—one that few people see, but that shapes every part of our day. The goal is of course a generalization of skills and independence. But realistically, she will always need support.
“Filling My Own Cup”
There’s a saying about putting on your own oxygen mask first. I’ve come to understand that means acknowledging I, too, am a human being with needs—that I cannot be a steady presence for my daughter if I’m running on fumes. And that caring for myself has to be an intentional, regular practice.
Of course, I’ve learned this the hard way.
Caring for her has taught me how vital it is to care for myself—not as an afterthought, but as part of the equation. Nature has been one of my greatest resources and teachers. The rhythm of the seasons, the quiet of a trail, the vastness of the Pacific on the wild and scenic Oregon Coast, or the simple act of tending my garden—it all reminds me that growth can be slow, and that a gentler pace can be deeply sustaining. It’s okay to take an afternoon off and just be.
Movement is a powerful tool also. It helps regulate my nervous system, release stress hormones, and bring me back into the present. Even a short walk or stretch can ease tension, calm my mind, and remind me that I am still here, still whole, and still capable. Heading to the gym, or a few moments of breath to feel grounded in my body are small but powerful rituals that ground me in the present—where joy and peace are still waiting. I treasure reading a good book, sipping tea and watching a “feel good” show like Heartland with my older daughter, or playing cards and laughing with my family. I practice gratitude and celebrate every win. Each self-check, each time she scans her CGM without being prompted, every moment of calm in the midst of uncertainty—these are not small things.
There’s no one-size-fits-all to caregiver support. But I’ve found that what truly helps isn’t advice or solutions, definitely not “feeling bad for me”—it’s being seen. It’s when someone listens without trying to fix, offers presence instead of platitudes, or quietly reminds me: you are doing something incredibly hard—and you are doing it with love.
Why I’m Speaking Up
I’m not writing this for sympathy. I’m writing because there are so many of us walking through days like these—awake at 2 a.m., steady in the storm, holding more than we show. And too often, our stories are invisible.
Caregivers carry a quiet kind of strength. It’s not loud. It doesn’t always look like bravery. Sometimes it looks like staying up a little longer to refill prescriptions, or noticing the subtle shift in your child’s voice when her blood sugar drops. Sometimes it’s knowing when to step in—and when to gently step back.
I’m speaking up because I believe love like this deserves to be seen. I want to create space for the honest stories—the ones with grit and grace, exhaustion and joy, fear and fierce commitment. Because this journey isn’t just about diagnoses or T1D management. It’s about humans—whole families—navigating life together.
If this resonates with you, I hope you know: you are not alone.
There is power in naming the hard.
And there is comfort in sharing the sweet.
If we can build understanding and community along the way, then speaking up becomes its own kind of healing.
Behind the Numbers: Caring for the Caregivers in Type 1 Diabetes
As a pediatric endocrinologist, one of the most important roles I play is helping families navigate the life-altering diagnosis of type 1 diabetes (T1D). In those first few hours and days, parents often experience a storm of emotions—fear, guilt, anxiety, and a deep sense of helplessness—as they try to understand what insulin-dependent diabetes means for their child’s future.
Before they’ve even had a chance to fully process the diagnosis, they are expected to master a completely new world: counting carbs, calculating insulin doses, preventing lows, correcting highs. Fast forward a few months, and they’re coming to clinic visits with detailed notebooks filled with blood sugar logs and meal records.
But what’s often unseen is the emotional cost that shadows each of those numbers.
The Invisible Weight
When a child is diagnosed with T1D, parents and caregivers are thrust into a world of round-the-clock vigilance. There are no breaks. Blood sugars don’t rest on weekends or holidays. Even with incredible advancements in technology—continuous glucose monitors (CGMs), insulin pumps, automated insulin delivery systems—the mental and emotional burden remains heavy.
Every number carries meaning. Every insulin dose, every missed alarm, every correction bolus can feel like a moment with high stakes. It’s exhausting. It’s relentless. And it takes a toll.
Caregivers: The Unseen Patients
While our clinical focus is rightly on helping the child live a healthy life with T1D, parents and caregivers are also deeply impacted. Many are living with sustained, chronic stress. Research consistently shows that caregivers of children with T1D experience higher rates of anxiety, depression, and sleep issues. And this isn’t limited to one part of the world—it’s been documented across the U.S., Canada, China, Ethiopia, Iran, India, and beyond.
Making Space for Mental Health
Because I see families every few months—often for years—I become part of their story beyond diabetes. I’ve witnessed milestones like graduations, siblings’ weddings, and growing families. These connections remind me just how intertwined diabetes care is with life itself.
That’s why I make a point to check in with caregivers—not just about blood sugars, but about them. Within minutes of talking, stressors surface: both apparent and hidden.
Blood sugars carry emotion too: pride, frustration, fear, anxiety. Sometimes parents feel judged by an A1C, so we save it for the end of the visit—and we make an educated guess together, based on the data: the children are sometimes surprised how close it is to what they guessed. It helps take away the fear and gives them some ownership. And on days when the emotional load is too high, we don’t even discuss it. Because sometimes, mental health has to come first.
Clinic visits shouldn’t be something families dread. We, as providers, may be one of the few people they check in with regularly. So it’s essential we check in on them, not just their child.
Just like the flight safety reminder says: put your oxygen mask on first.
Few tips for providers caring for children or adults with T1D:
Normalize psychological support: Check in on caregivers either with formal screeners or just informally. This should be routine, like A1C checks. I am sure most of us do this some of the time but maybe not all the time. Ensure there is a framework in place to provide mental health support, if they need it.
Create time to listen: In clinic visits, we must make room for the caregiver’s voice. Not just to review insulin doses, but to ask: “How are you doing?” Chances are, in some visits, you may not even get to insulin doses.
Connect families: Peer support is powerful. Parents of children with T1D often feel isolated. Facilitated connections and support groups can remind them they’re not alone.
Few tips for parents and caregivers caring for children or adults with T1D:
Prioritize your mental health: Caring for someone with type 1 diabetes around the clock is demanding, and it can take a real toll on your mental health. As a caregiver, there’s often an unspoken responsibility to always be strong, calm, and prepared for any challenge that might come your way. That constant readiness can be emotionally exhausting. It’s important to recognize that your well-being matters too. When you take care of your own mental health, it benefits not just you but your loved one too!
Numbers are not everything: Blood sugar numbers, A1C, time in range: all of these can seem like a report card or a grade. They are not everything. The sleepless nights, the trouble shooting, the quick thinking on your feet about how to fix a high or a low, or how to recharge a dying pump, are the unmeasurable aspects of T1D.
Try to focus less on chasing the numbers, and more on the quality of life you and your loved one are able to enjoy. For your child, that might mean sleepovers, sports, birthday parties, or summer camps. For you, it could be a night out, time with friends, or even just a quiet hour to yourself.
As they grow older, shift the focus toward building their confidence and independence in managing diabetes. If they feel empowered and capable, that is success. And when they see that you’re caring for your own well-being—that you’re not running on empty—that’s a success for them, too.
