How Caregiving Can Be Balanced With Everyday Living

Managing caregiving with daily living is truly a balancing act. There are personal responsibilities that must be met in addition to managing the details and care of another person.

Another me to do the laundry

In an ideal world, I would have a clone. My clone would handle all the things I don’t want to do.

Unfortunately, since clones are not real or a practical caregiving tactic, I’ve had to find other creative ways to get things done while also taking care of my 11-year-old daughter, Juliana.

Words that still ring

It seems like just yesterday that my husband and I received Juliana’s diagnosis of Angelman syndrome. The exchange with the geneticist really was like an encounter seen on TV. The lips of the person delivering the haunting news were moving, but I was stuck in a trance-like state of hearing but not being there.

Sometimes, I still hear the words “lifelong care” ringing in my ears. They sound menacing. Now I know that lifelong care doesn’t mean “every minute care.”

Caregivers must and should balance caregiving with good old-fashioned everyday living and doing.

Shame on you, little voice in my ear

Although we rely on school, babysitters, and respite to balance out her school days, during the summer, Juliana is with me while my husband is working.

Things flow easily enough for us during the summer. But summer also means I may be taking on a big home improvement or work-related project.

This summer, despite my better judgment, I decided to redo our kitchen cabinets. This project is part hobby, part necessity.

Sporting jazzy sunglasses, Juliana, 11, gets ready for a garage party with her mom. (Courtesy of Sabrina L. Johnson)

I was really frustrated with myself last week when trying to balance Juliana’s bathroom trips, snack, lunch, and the cabinet work. It was a real mess.

I heard the little whisper of “lifelong care” in my ear. As in, “Why are you trying to do this when you should just be caregiving?”

The whisper was wrong.

Just add water

I had an aha! moment and decided to treat this home improvement project like a work project. I forgot about the plan I devised as my this-is-how-I-work-with-my-kids strategy.

It’s a simple plan. I set up an area next to me with Juliana’s favorite toys. If I’m limiting her screen time, I simply play music on an app. After she’s set up, I get to work. While I’m working, I give her reassuring talks, glances, and waves. The quick connections convey, “Mommy sees you. You’re OK.”

To improve the plan, I began balancing work around bathroom breaks, snacks, and lunch. Short walks or a quick skill practice would break things up nicely.

Juliana finishes a skill-practicing task during a workday at home with her mom. (Photo by Sabrina L. Johnson)

The day is even better when I set myself up to work in Juliana’s room.

With the same generic plan in place, I fashioned a spot for Juliana near me in the garage while I got to work on the cabinets. I put on some upbeat music, and from her comfy chair, she rocked out while I labored away, checking in with her often.

Many Angels have a fascination with water, and this is also true for Juliana.

Juliana enjoys a water moment while hot tubbing. (Courtesy of Sabrina L. Johnson)

To sweeten the work-next-to-Mommy deal, I filled a small container with water so she could splash her feet while she enjoyed her tunes. It was no hot tub, but the effect worked just the same.

“Juliana, you are really jamming!” I called out to her between cleaning the doors.

Caring and doing can be simultaneous

Years ago, I knew I would need a different plan to complete work when my kids are home. My daughter Jessa is now old enough to keep herself entertained when I’m working or tackling a project around the house.

But things work differently with Juliana. She needs consistent supervision, but fortunately for us, she is agreeable to work on things in her own little spot if you are close to her.

Of course, there are days when I have to plan a workday with more intense focus. If that’s needed, I wake up early or manage the task after Juliana has gone to bed.

I have a “whatever it takes” attitude to figure out a way to juggle my care responsibilities with regular living. The idea is that I’m not viewing lifelong care as an obstacle to the other things I need or want to do.

It can be challenging to take care of someone and make time to get to other matters at hand. There is no easy solution.

However, keeping an open mind and a plan helps me accomplish the things I need to do — even in the midst of my caregiving.

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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.