When Safety Concerns Begin to Override the Need for Independence

When Safety Concerns Begin to Override the Need for Independence

Six years ago, my husband, Todd, still had use of his weakened right arm and was able to walk, but he had been falling more frequently.

After one fall, we had to call my cousin because Todd wasn’t able to get himself off the floor and I didn’t have enough strength to help him. I arranged to get a Hoyer lift from an MDA loan closet.

Another time that summer, when he was out with his sister, he fell and smacked his head on a sidewalk. His face was bloodied and bruised. His sister begged me to have him stop walking.

“Don’t tell me,” I responded. “Tell him. I told him, but he’s an adult.”

He could still drive, but when we went somewhere together, I insisted on driving. He argued that even with weakened arms he was still a better driver than many people on the road.

I wanted him to limit his walking, especially when he was alone. But he was determined to maintain his independence as long as possible.

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He would go out to breakfast or to Dairy Queen. He visited my great uncle in a nursing home and read to him. And he loved mowing 10 acres of grass around our home and my parents’ home next door.

Todd loved mowing so much that he had sold his lawn tractor with a steering wheel and purchased a Country Clipper zero-turn mower that operated with a single joystick.

Todd Neva and Comet. (Courtesy of Kristin Neva)

One evening in late September, I was getting ready to leave with the kids for a children’s activity at our church. “You should stay inside,” I cautioned Todd.

“It’s a beautiful evening, and it’s supposed to rain tonight,” he said. “I want to mow while I can.”

I protested, thinking he should wait for another day when I would be home. That way, if he fell getting on or off it, he wouldn’t be stranded somewhere in our yard. We live in the country, and my parents’ house is 150 yards away.

“Getting on it is the most dangerous part,” he reassured me, “and I’ll do that before you leave.”

“You better take your phone,” I said.

I watched him get on the lawn mower, and then I left. That evening, I was busy singing with preschoolers, so I didn’t have time to give much thought to Todd’s safety — that is until I headed home.

When I pulled into the driveway, it was too dark for me to see him anywhere on the property, but I didn’t hear the mower, so I hoped he was in the house. I hurried inside and immediately went to check on him. He was lying on the rug in the living room.

“At least you fell inside,” I said.

I got the Hoyer and lifted him onto a chair.

“Actually,” he said sheepishly, finally fessing up, “I fell outside and had to roll back to the house.”

When he had finished mowing, he got off the mower to move something that was blocking the shed door. Trying to get back on, he fell and slammed his head on the ground.

“Why didn’t you call me? I would’ve come right home.”

“My phone was on the mower,” he said.

He lay on the ground, repeatedly calling for help, hoping my parents next door would happen to step outside and hear him. He yelled, and coyotes howled back.

It was getting dark and cold, and I wasn’t scheduled to return for another 45 minutes.

Todd was 150 feet from our house, and he calculated that it would take 50 barrel rolls to reach the front door.

Fifty barrel rolls away. (Courtesy of Kristin Neva)

Roll after roll, he struggled to overcome the slight incline to the driveway. He painfully rolled across gravel to the front door. As coyotes continued to howl, he kicked off his shoes, and worked his feet up the door and hit the latch with the back of a heel.

Todd managed to turn on a light with his foot, and then he rolled into the living room where he tried unsuccessfully to get to his knees by leveraging his body against the couch.

He eventually gave up, and waited for me to get home.

That was the last time Todd mowed. He decided the risk was too great. He stopped driving soon after that, largely because he wasn’t able to open the truck door.

Even though it was sad to see him lose his independence, life became less stressful for me until the next big decline.

Todd and I had to work through those transition periods between full independence and complete dependence — driving to riding shotgun, walking to wheelchair, standing showers to shower chair, manual transfers to using a lift.

It was difficult to be concerned about his safety as he struggled to maintain independence.

***

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 Services, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.
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Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.

3 comments

  1. David Shippee says:

    Consider an Apple 4 watch. It has a fall alert that will call anyone you designate and 911. I have a separate data plan with mine in case the watch can not link with the phone. I can tell you it DOES work. I have ALS and this gives me confidence to be on my own and helps my wife and sons not worry as much when they leave me alone.

  2. Kathryn Kennedy says:

    I too love reading these articles. They are so touching and truly help edify me as I was diagnosed 1 year ago this month. I am prescribed Radicava and Riluzole and this has definitely helped slow down the disease progress, but I have declined somewhat. I struggle with remaining independent but am increasingly learning to ask for help.

    I am so blessed to have family and friends to help!

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