Another Close Call Reminds Me of What We Still Have as a Family

Difficulty breathing due to ALS leads to a scary moment for this columnist's husband

Kristin Neva avatar

by Kristin Neva |

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We had another close call last week.

I was out mowing the fields while a nursing assistant was caring for my husband, Todd. She was one of his first caregivers after he lost his ability to walk and bathe himself due to ALS. At the time, Todd still had some movement of his arms, and he drove his wheelchair using a joystick. He clicked his computer mouse with a foot pedal, and his neck was strong enough so that we could get out of the house on occasion.

The nursing assistant worked with Todd for a few years and then moved on. It had been four long years since we last saw her. Todd’s health has significantly declined since then. When she arrived, I explained that he now has a PEG (percutaneous endoscopic gastrostomy) feeding tube, and asked her to give him his medications. I explained that Todd’s lungs are very weak, and I showed her how to use his Astral noninvasive ventilator.

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She’s well experienced, so I didn’t hesitate to leave Todd in her competent hands. Nonetheless, I made sure she had my number in her phone.

“I’ll be mowing my mom’s field next door if you need anything,” I said.

I climbed into my tractor and drove to the far field kitty-corner to our house. Ten years ago, we purchased 3 acres of land from my parents and built an accessible home. We knew Todd would need a lot of help as the disease progressed.

I was mowing down a patch of tansy when my phone rang. Todd’s aide was calling.

“Todd’s having a little trouble breathing.”

“I’ll be right there.”

Rapid intervention and then, reflection

I pushed the pedal to the floor and drove in the direction of our house. I considered whether I could run home faster, but decided I might get too winded if I tried to run the entire way. It was better to drive, although it seemed excruciatingly slow.

When I reached our yard, I hopped out without shutting off the tractor and ran into the house. The aide had been helping Todd in the bathroom. He was in a transfer sling slumped down in his wheelchair. The noninvasive ventilator was on its cart blocking the door, and she was holding the nasal pillows to Todd’s nose.

“I need the cough assist,” Todd said, his eyes glancing down to the machine on the bottom shelf of the cart. The aide had already plugged its power cord into the wall.

I grabbed the face mask and turned the machine on.

“Take it away when I close my eyes,” Todd said.

I put the mask to his face and he took a deep breath. He closed his eyes.

I removed the mask.

“Oh, put it back on,” he said. He was just so relieved to get a deep breath that he momentarily forgot his own instructions.

I put the mask to his face, and the machine pushed air into his lungs and pulled it back out. After he had taken a few breaths, he closed his eyes again and I pulled the mask from his face.

“That’s enough,” Todd said. “Put the Astral back on.”

“What happened?” I asked.

“I was talking too much while I was up in the sling,” he said, “and then I started having trouble breathing. I told her to put me down quickly, but I was still having trouble. Fortunately, I managed to say, ‘Get the ventilator,’ before I stopped breathing, but she knew what to do and got the ventilator for me. That’s when I told her to call you.”

We had a similar incident earlier this year, but that time, I had stepped out of the bathroom and he had stopped breathing for a few minutes. I haven’t left him alone in the bathroom since.

This time, he had somebody with him, and he only stopped breathing for a minute, but it was still a weighty reminder that our time together is limited.

“I’m ready to go,” Todd said later, “but I want the kids to be older.”

I’m not ready for him to go. For the rest of the weekend, I was hyper-aware of how much Todd contributes to our home. He and I discussed some sibling conflict our kids were working through, and decided on the best course of action. We ran out of hot water, and Todd told me to check the boiler in the utility room. Sure enough, it was flashing an error message, so I reset it. Todd coached our son in baking an apple upside-down cake. It was delicious.

Our lives are difficult. Todd is often uncomfortable and bored. I feel isolated stuck at home, and it’s stressful to have somebody so dependent on me. But realizing how quickly his life could slip away has reminded me of all the good that still remains.

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.


Neva Slattery avatar

Neva Slattery

Notice the coincidence in our names.

I have been following your articles in the ALS newsletter. God bless you and your family.

My husband passed away from ALS on September 23, 2021 nine months after being diagnosed. This is such a hideous disease which I wouldn’t wish on anyone. He had pseudo Bulbar ALS.

I send you prayers.


Kristin Neva avatar

Kristin Neva

I'm sorry for your loss. I've only met one other person with the first name Neva. Thanks for commenting.

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