Managing volatile emotions is part of being a Sanfilippo caregiver

The emotional roller coaster that accompanies Sanfilippo syndrome can be bumpy at times, and I’ve been feeling the ups and downs more strongly lately. I’m speaking of my extremely volatile emotions when caring for my daughter Abby and accounting for her needs. There’s the ebb and flow of happiness and sadness, and the guilt I feel immediately after growing frustrated with her.

I have cancer, and I’ve recently resumed chemotherapy. My schedule now consists of treatments every other week, and I’m more limited in what I can physically do because of the side effects. However, the further away I get from chemo treatments, especially during the off week, the more energy I have. I try to take advantage of those days by doing as much as possible around the house.

Frustration followed by guilt

Last week was an off week, which made it a good time to wrap gifts and decorate for Christmas. Knowing that I had only a few days of this extra energy before another chemo treatment, I was committed to doing the most I could, almost in a manic state. That meant I got overly frustrated whenever I had to stop doing what I wanted to do to care for Abby’s needs.

I realize how selfish this sounds, believe me. It’s embarrassing to even share this, but it’s an honest account of what caring for my adult daughter feels like sometimes.

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Of course, within 30 seconds of venting my frustration to my husband, I began crying and felt horrified that I’d just verbalized what I was thinking. But I think almost every caregiver of a child or adult with any disability or disease can understand the frustration and commiserate with me. It’s not an emotion you want to experience, but it comes with the job. Luckily, we have caregivers to help us with Abby, so my frustration level is usually more in check than this.

The truth is that my husband and I should be empty nesters at this point. We’re now in our mid-to-late 50s; we should be able to take frequent trips and have more freedom. Abby’s younger sister, Emily, lives on her own and is in her fifth year of teaching first grade. She’s “adulting” quite beautifully, and we’re proud of her.

Abby is 29 years old, so we’ve parented her for almost three decades. And now that she’s a full-grown adult, it’s physically challenging at times. We cannot simply pick her up and place her where she needs to be, as we did when she was a toddler. So there’s some inherent frustration in her daily care.

Trying to keep it real

Again, I use this column to offer an honest account of what it’s like to have a child with a rare, terminal illness such as Sanfilippo syndrome. Its degenerative nature means that Abby will continue to decline over time, and there’s nothing we can do to stop it. Being able to vent my emotions here from time to time is good for my mental health.

For now, Abby is still fairly happy and content, as far as we can tell. She still finds joy in her favorite shows, movies, and songs. And she is so loved by us, her extended family, and her caregivers. We’re fortunate to have so many people supporting us and Abby. It helps ease the rougher rides on that emotional roller coaster!

Note: Sanfilippo News is strictly a news and information website about the syndrome. 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 Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.