"Managing CF Care with ADHD" by Holly Williams
When my daughter, Caroline, was born seven years ago and diagnosed with cystic fibrosis, I knew my life was about to change forever. What I didn’t realize was how much I would learn about myself in the process of becoming a mother to a child with such high medical needs.
At just two weeks old, we began twice-daily manual airway clearance for her lungs. She needed multiple prescription medications throughout the day—each with strict dosing rules: some with food, some without, others spaced hours apart. Keeping track of it all was overwhelming, so I covered our home in post-it notes. Reminders filled the kitchen counter, the fridge, and the TV stand where we did her evening vest treatments.
I imagine many CF parents start this way—post-it notes scattered everywhere, prescription schedules taped to the fridge. But for me, those visual cues never faded. Even now, I still rely on them, especially during high-stress periods. Back then, I didn’t realize those reminders weren’t just helping me manage my daughter’s care… they were helping me cope with undiagnosed ADHD.
Recognizing ADHD in My Caregiving
A year ago, I was unexpectedly diagnosed with ADHD. It shouldn’t have surprised me—I already knew a lot about ADHD because my daughter, who has CF is AuDHD (autistic and has ADHD). But her neurodivergence is profound, impacting every aspect of her life, so I never considered that I might be neurodivergent too.
I had always pictured ADHD as a hyperactive young boy—not someone like me, a perfectionist who had a small business, earned two degrees, and kept up with medical caregiving. But when my doctor explained how ADHD presents differently in women, often with internal hyperactivity, suddenly everything clicked. On the outside, I looked calm and collected. Internally, my brain was running 100 miles a minute—juggling details, troubleshooting, problem-solving, and constantly feeling like I was doing too much and not enough at the same time.
Every day for the past seven years I’ve managed my daughter’s medications, airway clearance treatments, supplement routines, and enzymes. I sanitize nebulizers, schedule clinic appointments, call pharmacies, apply for grants, and handle insurance paperwork.
And just when I find a rhythm, everything can change. A virus or CF exacerbation means extra treatments, new medications, and an even heavier mental load—sometimes for months at a time.
It’s overwhelming for anyone, especially when each task is essential to your child’s current and future health.
For someone with ADHD, it’s even harder.
Juggling high-stakes medical tasks while constantly adapting requires executive function skills that do not come naturally to me. It’s easy to feel like I’m drowning. But over time, I’ve learned that the key isn’t doing everything perfectly—it’s creating systems that support how my ADHD brain works.
ADHD Strategies for Managing High Medical Needs
1. Keep Important Tasks Visible
ADHD brains struggle with object permanence—if something isn’t visible, it might as well not exist. This explains why, even after seven years, I still need visual reminders for CF care.
Medication stations – I keep enzymes in a bowl next to the applesauce and spoons, with a dry-erase board nearby for dose increase notes or new medications we’re still getting used to adding.
At night, I set out all of her medications for the next day in a basket on the counter. As I give her each dose, I put it back in the basket so I can visually track what’s been done and ensure nothing is missed.
Checklists on the fridge – A dry-erase checklist for morning and evening CF routines keeps a simplified visual for me on days I feel particularly overwhelmed.
Color-coded reminders – When I brain-dump my to-do list, I highlight tasks related to Caroline’s CF care, so I can quickly gauge how much time I need to plan for her medical needs that day.
2. Reduce Decision Fatigue
ADHD brains get overwhelmed by too many decisions. Automating as much as possible helps prevent burnout.
Auto-refill prescriptions & set calendar reminders – I put reminders in my Google Calendar for when medications will be ready for pickup or scheduling so I’m not caught off guard and overwhelmed by the pharmacy call.
Use Siri for reminders – “Hey Siri, remind me at 8 AM to drop off enzymes at Caroline’s school.” This tip is a lifesaver when I’m driving and suddenly remember something important!
Simplify everything else – I reduce unnecessary decisions, especially in the busiest parts of the day (morning and night). Laying out her clothes, prepping her backpack, and packing her lunch the night before allows me to focus entirely on her medical needs in the morning without distraction.
3. Prevent Burnout with Sensory Rest
CF caregiving is relentless, and ADHD brains burn out quickly under sustained pressure. I’ve learned that recognizing my mind and body’s cues to when I’m headed that direction can help me pause, take a break and get back to caring for my daughter.
Quiet resets instead of pushing through – When I feel mentally overwhelmed, I pause and remind myself that more than pushing through that task that is not actually urgent with a fourth cup of coffee in my system - I probably need to sit down, eat a solid meal with fat and protein, have a few moments of quiet and drink a glass of water.
Set realistic expectations – ADHD means I will forget things. Instead of guilt-tripping myself, I remind myself that perfection isn’t required—I am her mom first, not her medical team.
Finding What Works for You
Since being diagnosed with ADHD, I have learned my best will look different every day, and that’s okay. What’s important is we realize we don’t have to do this CF caregiving thing the same way as everyone else. Finding what works for us, what supports us, is part of caring for our loved ones with CF well.