Dealing with caregiver guilt is part of the Angelman journey

In the past month, I’ve felt pangs of guilt about several things while caring for my 2-year-old son, Jude, who lives with Angelman syndrome.

I feel guilty while helping Jude learn to communicate or develop other skills for daily life. I’m fearful that I’m holding him back from learning new skills, such as standing independently or using silverware, because I’m not trying hard enough. I regularly think about how I could be doing more to help him.

For example, Jude is nonverbal, and I’ll feel guilty if we go outside with Jude’s communication device when I’ve forgotten to charge it. I feel guilty that we haven’t started toilet training him yet.

In other areas of my life, I worry that I’m frequently letting down people at work, family members, or friends. No matter how understanding an employer is, it’s never pleasant to explain that you can’t attend work because of yet another unexpected doctor’s appointment. Finding time to keep up with friends and family can be challenging when you’re juggling the need to provide care for a child with Angelman. I become disappointed if I haven’t checked up on someone I care about who’s going through a difficult period.

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Finally, I feel guilty that I have to leave Jude in the care of others when I must work. Yet work is vital because it keeps a roof over our heads, allows us to plan for Jude’s lifelong care, and provides structure, purpose, and social connection.

Research indicates that caregiver well-being is a factor in the quality of care that’s provided. That finding underscores the need to manage feelings of guilt to ensure that we stay balanced, healthy, and emotionally equipped to support our loved ones who are living with Angelman syndrome.

How I’m adjusting

As a first step, I’ve been practicing shifting how I view my responsibilities. Rather than focusing on the negatives or what I haven’t done, I try to recognize what I’ve achieved over a week or a month. It’s important to acknowledge the accomplishment of simply ensuring Jude’s overall well-being by supporting him at medical and early intervention therapy appointments. (We had 22 appointments in February alone!) I can even acknowledge just getting dinner on the table during a busy week.

I’m also learning to accept that I can’t do everything. It’s important to give ourselves permission to set realistic goals that fit into our caregiving and daily routines rather than striving for perfection. That might mean endeavoring to do augmentative/alternative communication during Jude’s mealtimes, or ensuring that he practices staying upright in his standing frame for most of the week, rather than every waking hour.

Ultimately, I’ve acknowledged that guilt is part of the caregiver’s journey, but it doesn’t have to define that journey. Instead, I can treat myself with the same kindness and understanding that I’d extend to anyone else in a similar situation. We’re doing the best we can, and that’s enough.

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.