Enjoying a bit of respite from being my husband’s caregiver

Leaving home is difficult these days because of his ALS progression

Kristin Neva avatar

by Kristin Neva |

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I’m cautious about leaving my husband, Todd, alone because ALS has compromised his lung function. Todd can usually tell when mucus starts building up, so if his lungs are doing well, we’re comfortable with me running errands or attending events, as long as I’m not more than 15 minutes away. But sometimes it’s too touch-and-go for me to leave the house at all.

On Tuesday of last week, before I left for my ukulele group, Todd had the urge to cough a few times while I was feeding him dinner. He said it felt like he got food in his windpipe, but it might have been mucus coming up from his lungs.

In any case, small coughs like that often turn into a rattle in his chest, and then he struggles to breathe. Sure enough, a few minutes before I had to leave, I needed to clear Todd’s lungs. After an initial round of manual assist coughs, I knew he’d need more help. I canceled my plans to play with the Yooperleles, and instead Todd and I watched a show on Netflix between lung clearings.

The following evening, I’d planned to watch my daughter, Sara, improv modern dance for a local musician at the Calumet Theatre here in northern Michigan. The artist, Adrienne Newman, had asked her to join in for a whimsical number. I’d hoped to go, knowing that I’d be only 15 minutes away if Todd needed me, but after Tuesday’s episode I wasn’t comfortable being even that far.

Fortunately, a few people have learned to clear Todd’s lungs, one of whom is a friend and massage therapist who works on Todd on Wednesday afternoons. Todd asked if the friend and masseur could come in the evening instead, and he agreed to do that. I went to the show without the stress of worrying about Todd, even after he’d struggled with lung congestion throughout the day.

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An evening of respite

The show was delightful. Newman shared bits of her life and recent challenges, such as helping her son heal from a traumatic brain injury and the grief of losing her mother. She sang soulful songs, but also reminded us of the importance of play, even within the hardness of life.

Having lived with ALS for the past 14 years and with Todd and I using humor to cope, I appreciated Newman’s gallows humor when she recounted her time at the funeral home picking out an urn, wondering if she could buy a more affordable one on Amazon, and making jokes about preserving loved ones’ bodies.

In the whimsical number with my daughter, Newman started a song and then stopped after a few bars, saying she needed a dancer. Sara entered stage left, and Newman introduced her. She restarted the song, but then once again stopped. She said the song needed a drummer. A man in a panda suit peeked his head out from the stage-right curtain, and she invited him onstage, too.

Four people are onstage at a theater. The woman at the center, with a bouquet of flowers behind her, is standing and holding a guitar, and a man seated to her right is also playing guitar. A teenage girl in a pink dress stands off to the side with her hands on her hips. She's looking across the stage at a person in a panda costume, who's peeking out at the audience. The curtain behind them is purple.

Adrienne Newman, center, performs at the Calumet Theatre in Michigan. Kristin Neva’s daughter, Sara, is on the right. (Photo by Kristin Neva)

It felt good to laugh.

When I got home, I played the video of the song and Sara’s dance for Todd, and I shared highlights of the show. Todd told me that his massage therapist had canceled plans to play softball to help us out that evening. Todd didn’t need to cough again, anyhow, but I was glad I was able to attend without having to worry about him. It was good to get out and have a bit of respite.

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.


Alicia avatar


This was
Very helpful

Kristin Neva avatar

Kristin Neva

Thanks for commenting!

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