A recent caregiving stint reminds me that my self-care routine is vital

I knew better, but I still found myself putting my needs aside to help my mom

Sean Baumstark avatar

by Sean Baumstark |

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I’ve heard it on TV and in movies and read it all the time, a seemingly universal message to caregivers: “Remember to take care of yourself.” Although I’ve never disagreed with that advice and I’m sure I’ve said those words to others, such guidance is easy to forget or ignore when you’re the one giving care.

That message resonates differently with me right now.

After eight weeks in the hospital, my mother is home and settling into a new normal. She was recently diagnosed with an aggressive form of leukemia, and her treatment will be ongoing for a while. However, she’s at a place in her medical care that allows her to enjoy her bed every night.

Over the past two months, I’ve made several trips to visit her in the hospital, tend to her home, and do necessary chores and errands to keep things maintained. I found myself juggling the regular maintenance of my day-to-day as well. I hit the “pause” button in many areas of my life to prioritize my mom’s well-being and the life she’s diligently built for herself.

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Finding balance between my roles as a mom and a person with FA

My Friedreich’s ataxia is limiting, causes me to move slowly, and erodes my energy, so there are many times I’m not the most helpful resource. But you’ll never hear me complain about being able to assist as much as I can and be present for my mom. Although I spent many hours napping in her hospital room or mindlessly staring out of her window while she slept, I suspended my natural desire to be productive to focus all my physical and mental energy on my mom.

My mom lives near Las Vegas, and I live in Sacramento, California; that’s not a convenient or inexpensive commute. My employment is not conducive to remote work, so it’s been necessary that I balance my job and income with being near my mom. I’ve done that by working for a week or so and then traveling to be with my mom for a few days. With that solution, I quickly lost sight of the disciplines I’ve practiced for my well-being over the years.

Of course, most of us have to scale back or even eliminate parts of our routine when faced with something as crucial as a loved one’s medical and emotional needs. For instance, I’ve skipped a couple of writing deadlines for this very column to avoid late-night wordsmithing that would cut into my rest. Some things, such as eating or sleeping, should not be eliminated.

“Well, yeah. Duh,” you may be thinking as you read about those two basic human needs. I know because I’ve had that exact reaction when I’ve read about such demands.

But surprisingly, I’ve caught myself putting those and other important aspects of self-care on the back burner over the past two months.

I’m thankful that my mom’s health and energy seem to be stabilizing and that she’s home and able to settle into a routine that she can enjoy. This progress will allow me to return to a pattern that’s important for me, too.

When you’re in the middle of the forest, it’s hard to see beyond the tree right in front of you. All the more reason for columns like this, books, podcasts, films, and other media for storytelling. Patient or caregiver, we all need reminders now and then.

Note: Friedreich’s Ataxia 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 another 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


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