Why housecleaning is my last priority as a caregiver

Sure, I'd like an immaculate home, but my daughter's needs come first

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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A houseguest once passed her finger along a shelf in my house and asked, “Don’t you dust?” I was slightly offended, but didn’t overreact. I just briefly explained that I was a little busy.

There are a lot of activities in our house that must be completed to ensure the well-being of Juliana, my 13-year-old daughter with Angelman syndrome. Dusting isn’t one of them.

I welcome the idea of pristine floors, perfectly folded laundry, and dusted shelves, but life with Angelman means other responsibilities come first. Housecleaning has become the last item on my to-do list.

I’ve always considered myself an organized person, but I’m not a neat freak or perfectionist. When it comes to things like packing a good lunch for Juliana or ensuring her daily needs are met, I’m all for that.

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Putting the first things first

Life with Angelman syndrome has its challenges. Juliana can be hyperactive and sensitive to changes in her routine. As she gets older, she’s more cooperative with different caregivers, however, and able to go with the flow when our schedule changes.

Angels may also suffer from digestive issues that lead to incontinence emergencies or reflux. We dealt with a lot of this when Juliana was smaller. Now that we are managing some of these health issues better, I think we have a little bit more margin. But it’s not a lot. As Juliana progresses through puberty, she is on an emotional roller coaster. This manifests as crying jags and tantrums. In a nutshell, every aspect of our life needs careful planning and attention.

There is always a need to be met when dealing with Angelman syndrome. What isn’t a necessity takes a back seat. Over-the-top cleaning is seasonal, but tidying up after Juliana has made a mess with her toys or other items is a must.

That doesn’t mean that our house is a mess. There’s a place for just about everything, including backpacks and lunchboxes. I suppose if I wanted to I could make time for deep cleaning, but I don’t want to.

I could easily outsource cleaning tasks, but it’s just not that important to me, truthfully. I have friends who have decided they would rather pay someone to clean their homes. I’m not there yet. Although I do outsource my grocery shopping, cleaning still isn’t high on my task list. When I get a free minute, I want to put my feet up and veg a while. The dust will have to wait.

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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