We Are Both Patients

Kristin Neva avatar

by Kristin Neva |

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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remembering how one ALS organization said they couldn’t share our ALS 411 channel on YouTube because I had used the outdated word in one of the videos.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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Note: ALS News Today 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 ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Comments

Linda Gundersen avatar

Linda Gundersen

Dear Kristin, than you for your column it really helped today. I was feeling low and defeated about getting David 24/7 nursing. Your column put things in persepective, you and Todd sound like you have the relationship that David and I have. Thanks again.
Linda Gundersen

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Kristin Neva avatar

Kristin Neva

Linda, I'm glad you found the column helpful. Thanks for commenting!

Ellyn Maloney avatar

Ellyn Maloney

Your article made me think of the relationship my husband and I had. We were in our early 60's when he was diagnosed. Our children were raised but we had young grandchildren. Like Todd, my husband, was such a good "patient". I think I was also "patient" most of the time or at least he thought I was. Although it was difficult, I still think I would want to be taking care of him. I guess you summed it up - we were able to see the Joy in the Sorrow. I hope you know how special you are!

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Kristin Neva avatar

Kristin Neva

Thanks Ellyn!

Bob Ives avatar

Bob Ives

Hi Kristin, Your post is spot-on. I'm in my 10th year of symptoms and 7th year since diagnosis. I believe ALS may be as challenging for the spousal care-giver as it is for the patient. The spouse too often wonders what more she can do for the patient while the patient takes comfort in knowing that he/she is doing everything possible. I'm fortunate in that I'm still marginally mobile with a walker, but we are now searching for outside help on a limited basis since my wife is 79 and age is taking its toll!
Thanks for sharing your thoughts.

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Kristin Neva avatar

Kristin Neva

Thanks for commenting, Bob. I hope you can find the help your wife needs.

Debbie Zolnierowicz avatar

Debbie Zolnierowicz

Thank you for sharing. I needed it today for sure, along with the subsequent deep dive to your brilliant YouTube videos & Todd’s explanation of purpose. I still cannot ascribe to an “everything happens for a reason” mentality, but you and Todd helped me walk towards a “when life gives you lemons” perspective.

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Kristin Neva avatar

Kristin Neva

Thanks for commenting, Debbie. I'm with you on that. I'd leave the first statement at "everything happens." And with the second, I think love is the sugar.

Cindy avatar

Cindy

John is my husband of 43 years and my ALS caregiver of 4 years. We’ve always maintained the philosophy that what happens to one of us happens to both. we don’t know another way to deal with what life throws at you. One of the greatest blessings that I don’t take for granted.

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Kristin Neva avatar

Kristin Neva

Thanks for commenting, Cindy.

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