Supporting friends and family while caregiving

Being a caregiver for someone living with Angelman syndrome demands constant physical, mental, and emotional presence. Recently, we’ve become increasingly vigilant and attentive to the needs of our son, Jude, who’s 2 years old and has Angelman.

Life doesn’t stop even as we’re caring for the seizures and separation anxiety that can come with Angelman syndrome. Friends and family bring us joy and offer emotional support, but they too can experience challenging periods, such as hospitalizations and loss. Or they might go through major life changes, such as becoming a parent or changing careers.

Showing up for friends and family who need support while also caring for Jude can feel impossible. How can I find time to help someone else when Jude requires my full attention? But caring for friends and family doesn’t require grand gestures. Care can be meaningful and impactful even in small, sustainable ways.

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Fitting support into your routine

I can’t easily drop everything to support someone else going through a difficult time. Ensuring Jude has proper care — such as a healthy diet to manage gastrointestinal issues, regular exercise, and early intervention therapy — takes up a substantial amount of time and energy.

Since I’m short on time, I’ve adapted by combining caring for others with tasks I’m already doing. I might call to check in on someone as I commute to work, while I’m driving, or when I’m folding laundry. I might make additional servings of meals for friends and family to leave in their freezer if they’re going through a tough period. I might go for a walk or run with a friend.

These gestures are manageable within the context of my daily caregiving rhythm and don’t take up too much additional time.

Using technology as a personal assistant

Since Jude has dozens of appointments each month, I rely on apps like Calendar and Reminders, which keep me organized and help make our lives run a little more efficiently.

These apps also keep me on top of supporting friends and family. I note important dates, such as an operation or a friend’s or family member’s appointment, so I’m prompted to send a short text to ask how it went. I set reminders on my phone to check in on someone I’m concerned about if I don’t hear from them within a week or two.

Leaning into empathy

One of the most powerful ways caregivers can support others is through emotional intelligence. Caregivers of a child with Angelman syndrome already have a deep well of empathy, drawing from it every day as they navigate their child’s needs and feelings.

Often, people don’t want solutions; they want to be heard and validated. Instead of offering advice or trying to fix a situation, offer a hug or the comfort of being seen and understood. Such reassurance might come out as “That sounds incredibly hard,” “I’m here and I care,” or “I’m thinking of you.”

Being a caregiver to a child with Angelman syndrome is life-changing and all-consuming. Even within those constraints, though, caregivers have a special power to offer comfort, connection, and compassion to others. A small gesture is all someone might need to feel a little less alone.

Note: Angelman Syndrome 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 Angelman Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.