We Are Both Patients

I asked my husband, Todd, why he thought our relationship worked as well as it does. I was preparing to write a column about how we still love each other through the stress of living with his ALS for a decade now. It would be understandable for him to be frustrated with his loss of independence. And the burden of caregiving falls mostly on me.

“I try to be a good patient, and you are patient with me,” he said.

“That’s good, but I can’t use that word,” I said, remembering how one ALS organization said they couldn’t share our ALS 411 channel on YouTube because I had used the outdated word in one of the videos. And Todd’s physical therapist had told us that they aren’t supposed to use the word, either. Todd is a “client.”

Neither word works well for me, because he’s my husband, and “patient” and “client” seem to connote more of a professional relationship. But language is limited.

“Can you think of another word?” I asked him.

“No. Patient is a perfectly good word. It means one who suffers.”

“Really?” I asked. I hadn’t made that connection before, so I looked it up.

The English word “patient” dates to the mid-14th century, coming from the Latin “patientem,” which means “suffering.” As an adjective, patient means “capable of enduring misfortune, suffering, etc., without complaint.” As a noun, it means one who endures suffering with patience.

Todd was right, of course, because he generally is only wrong three times a year, and he’s already used those up.

Todd and I both need patience to endure the suffering brought on by ALS.

Todd makes our family life better than it otherwise would be by not complaining about much of the suffering he endures. It’s hard for him to be so dependent, and he doesn’t want to inconvenience people, so he often endures itches and aching joints for as long as he can.

“It would just be ridiculous if I asked for help whenever I was slightly uncomfortable,” he said. “I just bear with a lot of stuff. But when I do ask you to help me, you always respond with a cheerful tone. And you don’t get exasperated when I keep asking.”

I’m glad that is his perception, because I do make an effort to be pleasant, even when I’m frustrated. When I am trying to scratch an itch for him and he keeps telling me “up, down, forward, back, in, out,” I feel like I’ve scratched his entire arm, but he’ll say, “You’ve scratched everything but the itch.” I keep scratching until I finally hit the right spot.

I never imagined I would be providing this type of care for my middle-aged husband. One of the definitions of patience is “slow to anger and self-restrained,” and that’s what I aspire to. I’ve learned not to say everything that comes into my head.

It’s overwhelming to have someone so dependent on me, and I’ve come to recognize there are some things that my limited physical body cannot do.

I can’t stay up all night without sleeping. If I do too many manually assisted coughs in a row, my shoulder hurts, so I need to stop and rest. But even then, it sometimes aches for hours afterward.

Caregiving takes a physical toll on my body, so I try to take care of myself as much as possible so I can keep functioning in the long term for Todd and our kids. And that’s where his patience comes in, in understanding that I have limits. When I can’t meet his needs, then he needs to endure the suffering.

That is one of the reasons our relationship works as well as it does — we both try to be good patients.

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