Why caregiver respite is important and how I manage it

Having a life apart from caregiving helps to create balance

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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Caregiving comes in many different forms. For me, it shows up in the support for and care of my 13-year-old daughter, Juliana, who has Angelman syndrome. But I also have friends who are caring for aging parents or spouses.

Care may include daily assistance like dressing and feeding or simply providing emotional or physical support. Whatever its form, taking care of someone is like having a nonpaying job — you show up for the amount of time needed and complete certain tasks. That’s why it’s important to strike a balance between the needs of the person receiving care and your own.

Last week was a good example of striking that balance. Juliana returned to summer camp for the first time since the pandemic started. She has been attending the Families of Children Under Stress (FOCUS) camp since she was 5.

Packing for camp is like getting Juliana ready for a day of school, but it’s worth it. She didn’t miss a beat greeting the counselors and dancing during the morning roundup.

While Juliana is at camp, I take the opportunity to have a weeklong respite. When she was younger, I would do something relaxing and then handle errands or appointments. But I didn’t want that this year. Instead, I vegged out on the couch and did some gardening. If a thought of doing a big task entered my mind, I quickly dismissed it.

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For some, a period of time doing very little may be too much. However, this is what worked for me last week. I craved some quiet, do-nothing time and I took it. When school is out, Juliana is home all day, and although I’m home for the summer, it still means a full day of seeing to her needs.

Recharging for me comes in the form of relaxing or doing a DIY project. For some caregivers, work is a healthy distraction that allows them to be productive apart from caring for a loved one. It truly doesn’t matter what constitutes the balance. There simply needs to be balance — a time to step away and just be yourself.

I began striking this balance early in motherhood. When my girls were toddlers, I would attend a weekly “moms morning out” group. As much as we loved our children, it was nice to get out of our homes for a bit and do something apart from taking care of the kids. Juggling two toddlers and learning about Angelman syndrome was a special season of my life that was both challenging and rewarding. Back then, I didn’t know I would be setting the foundation for a long haul of caregiving.

Years later, I’m still caring for Juliana. That’s 12 years of looking out for another soul in addition to working, parenting my other daughter, maintaining my marriage, and sticking to a few of my own dreams. My plate is full and pretty much stays that way. Having my own interests and respite apart from caregiving creates balance. And while my plate is still full, it’s not nearly as heavy as it could be.

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.


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