Paying attention to self-care and well-being is key for caregivers
It's important not to lose one's individuality while providing lifelong care
When you’re a caregiver to someone with Angelman syndrome, making time for yourself seems like an impossibility. However, I consider this necessity an important part of my caregiver responsibilities. After all, if I don’t look out for my own well-being, I’ll burn out. And that will make the job of taking care of my 13-year-old Angel, Juliana, much more difficult.
In my mind, my well-being is a step up from self-care. I think of it as a way to ensure that I have interests in my life beyond work and taking care of my daughter. Living with Angelman syndrome comes with a lot of responsibilities. Angels also need lifelong care, so being a full-time caregiver is not like helping a sick child get well. I’m in this for the long haul, and there must be a part of my life that is still centered on who I am as an individual.
Making time
Setting myself up for a lifetime of helping means support from others and respite. But hobbies, fun, and activities I enjoy are also a part of my success formula. For many years, writing has been an outlet for me. Although I enjoy writing a lot, finding uninterrupted time for creating content can be tough. This past weekend was a good example. Juliana was recovering from the flu, so the week certainly came with extra difficulties and care. Still, I had deadlines to meet and needed time to focus. I wanted to be out of the house without any distractions.
So I headed off to one of my favorite places: the bookstore. As noisy as the environment was, it was still a place of refuge. I didn’t have to stop to redirect Juliana on her iPad or pause my writing for trips to the bathroom. Having those free moments when I need them makes me feel like I’ve won a prize. There is also a sense of normalcy in these snapshots of time. I’m just another mom sitting in the bookstore reading, writing, and having a latte.
From the earliest days of Juliana’s diagnosis, I knew that we would be facing a huge challenge for the rest of our lives. But I also decided early on that I didn’t want to get lost in the midst of all the caring. My well-being is important, too, and so are my interests. It takes me a lot longer to reach some of the goals I set for myself, but that’s OK. Even if it’s in small doses, having an outlet to feed my soul makes all the difference.
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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