The mental load I carry as a mom and caregiver

Being a mom comes with a heavy mental load. I constantly have a list of tasks running through my mind — all the work I need to do to manage my family’s life. I’m not just thinking about those tasks, but also making plans, remembering events, and carrying the tasks through each day. I describe it as having hundreds of tabs open on my computer; I’m always toggling between them, usually minimizing rather than closing them.

Managing everyone’s needs, schedules, and routines is a real challenge. I make decisions, big and small, all day. I answer countless questions and anticipate emotions — who’s tired, who’s feeling anxious, who’s struggling with emotional regulation.

All of these tabs are constantly running in the background, draining my battery. Sometimes I need to slow down and refuel (usually with a hazelnut cold brew), but at other times, I’ll shut down entirely. My mental load follows me everywhere, even waking me at 2 a.m.

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When a child has complex medical needs, the mental load becomes even heavier. My daughter Caroline was diagnosed with late-onset Pompe disease seven years ago through newborn screening, and I have had the “medical needs” tab open ever since. At the time of her diagnosis, the mental load seemed unbearable, and I was frequently running on a critically low battery. Over time, though, I’ve adjusted to the heaviness. Now, it’s simply another tab I must constantly check and refresh.

The list of Pompe-related tasks I need to complete is extensive, as it is for anyone in this community. I must remember to reorder drugs for home infusions, refill supplies, track medication and therapy schedules, keep track of doctors’ names and instructions, and juggle insurance. All the while, I’m worrying about Caroline, advocating on her behalf, balancing appointments with soccer carpool, and scheduling meetings around infusions.

The mental load isn’t just about tasks; it’s also about vigilance. I constantly monitor my daughter’s energy level, look for sudden changes in her health, and wonder whether she’s tired from a long day or something more. I try to keep my stress and concern to myself so that Caroline feels normal — not burdened by fears she shouldn’t have to carry.

At the same time, I try to be a “regular mom” who’s involved in the parent-teacher organization, helps with homework, and plans fun outings. I manage the emotional needs of Caroline’s siblings and my husband, who deserve my full presence. The hardest part is finding time for myself to clear my head.

Moms may always carry a mental load, but the most important thing we can do is recognize it. The “open tabs” metaphor helps me feel more understood and extend more grace and compassion — to myself and to all the mothers quietly carrying more than anyone can see.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.