The Secret to Finding Balance as a Caregiver

“Kristin, I need my eyes wiped again,” my husband, Todd, calls from his office. I had just put drops in his eyes 20 minutes ago, hoping to address the incessant itchiness he was experiencing, and now we are back at it again.

I get up from my desk, grab a clean, dry washcloth, and wipe his eyes.

“Pull down on the inside. Pull down on the outside. Pull across the eyelid. Again. Harder. Now the other eye,” he says.

Since Todd is paralyzed by ALS, he needs help with everything. Every itch. Every adjustment of a limb. Every cough. Every trip to the bathroom. Every meal and snack.

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While writing, I am up and down from my computer multiple times. Every time I have a profound thought, I get interrupted, and then lose my train of thought.

“Sorry to bug you again,” Todd says, “I need my nose wiped.”

“Keep the requests coming,” I tell him. “I’m writing about them.”

“Make a note in parentheses every time I interrupt you,” he says.

On days when I am at my best, I am cheerful in response to his requests because I love him. I can imagine how frustrating it is to be dependent on others for everything.

But sometimes I’m tired or feel like I’m coming down with something, and I’d just like a day off. I’ve had to set boundaries.

On more than one Saturday morning, Todd has called for me, and I woke to turn him, move a limb, or scratch an itch, but he was ready to get out of bed. “I’ll get you up in half an hour,” I’ve said, needing one more stretch of sleep. He might have been fully awake and bored, but he had to tough it out so I could get needed rest.

When we don’t have a nighttime caregiver, I can’t stay up all night, or even get up every hour to turn him. So he stays in his chair so I can get a stretch of uninterrupted sleep. I go to bed early, and he stays on his computer until three in the morning.

After I hurt my shoulder helping him cough, I made a device from two croquet mallets, a short stack of books, and a pool noodle to push on his abdomen. Now when he needs to cough, we first try to loosen the secretions by using the cough assist machine, and then we work to clear his lungs with the “mallet.” It is not as effective as putting my hands directly on him, but it’s what I need to do so I don’t get hurt.

I feel some guilt when I don’t do things for him, or if I don’t do things the way he wants me to do them. I’m left feeling inadequate. But how do I balance care for myself and care for a spouse with a disease that is so overwhelming?

I find perspective if I imagine someone else I love in our shoes. If my best friend had ALS, or if my daughter had ALS, would I want her spouse to care for her with sacrificial love? Absolutely. This question motivates me to step it up.

On the flip side, if my best friend or my daughter was a spouse-caregiver, I would want her to take care of herself. I would remind her that she is only human.

I think the secret to finding the perfect balance is … (Gotta go. Todd is calling.)

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