Because of ALS, I’m Doing Things I Never Envisioned

Because of ALS, I’m Doing Things I Never Envisioned
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When I met my husband, Todd, I was a renter, so I didn’t need to worry about home maintenance. I drove a 15-year-old Oldsmobile Cutlass Ciera, and I didn’t do much vehicle maintenance beyond having the oil changed. I put gas in the tank, and I figured as long as it ran and got me from point A to point B, that was good enough.

A few months after we started dating, Todd said he wanted to change my windshield wiper blades. We traded vehicles. When he returned my car, along with the wiper blades, it had new shocks, struts, and tires. And for good measure, he had the transmission fluid changed and the coolant flushed and replaced.

I was taken aback. “How much did all of that cost?” I asked.

“Don’t worry about it. It’s a gift,” he replied.

When I pressed him for the price, he admitted he spent a couple thousand dollars on the work, but said my car hadn’t been roadworthy.

Although I was appreciative, I was a little irritated that he had spent so much money when we weren’t in a fully committed relationship. What if we broke up? Then I would have felt like I should pay him back. I didn’t make a lot of money working at a nonprofit, so I would not have chosen to have all of those repairs done with my money.

But it all worked out, because we ended up getting married, and then he took care of all the car stuff and did projects and maintenance for the home we purchased.

Now that Todd is paralyzed due to ALS, I need to take care of those things.

The other day, I went to check on him to make sure he was comfortable at his computer before I left for town.

“Have fun,” he said.

“Thanks,” I replied. “But I don’t think it’s going to be fun. I’m taking trash to the dump.”

“I’d have fun if I could do it,” he said. He misses taking the trash to the dump — and mowing grass and moving snow.

I miss the time when I didn’t have to think of those things, but being a caregiver to a progressively disabled spouse means having to learn new skills and take on evermore responsibilities.

Now I’ve been learning how to drive a tractor with a snowblower. It’s new for me, so it takes a lot of concentration. I have a mental checklist I go through when I get in the cab — turn the key partway until the glow plug light turns off before starting the engine. Lift the box blade on the back of the machine. Push the joystick forward to slightly lift the wheels of the tractor, and then jam it forward to put the snowblower attachment in float. Engage the auger, and then increase the RPMs to at least 2,500.

It can be overwhelming at times, but thankfully, I still have Todd to advise me when something goes wrong, like when the weather turned cold and I couldn’t get the tractor started. Todd texted our neighbor, and he helped me remove and replace the battery.

Because of ALS, I’ve ended up doing a lot of things I never would have envisioned: caring for Todd’s feeding tube, giving him manual assist coughs, figuring out equipment needs and finding healthcare resources, among others. I’ve had to develop many new competencies with things around the house, like snaking drains, vacuuming the refrigerator coils, and cleaning out the dryer vents.

Snow blowing is one of the fun ones.

I have a sense of satisfaction that I can operate heavy equipment. I sit in the warm tractor cab with a 20-foot arc of snow flying off to the side of the shoot, singing along to country music, because it seems so fitting. “She’s gone country, back to her roots.”

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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.

Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.

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One comment

  1. Maggie Broeren says:

    I just love Kristin’s attitude,optimism and practical solutions. Thank you for writing such fun, helpful posts.

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