Making Mental Notes While He’s Still Here

Kristin Neva avatar

by Kristin Neva |

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After our second child was born — back when my husband, Todd, had an undiagnosed weak left arm — we purchased a used minivan.

We found the van on Craigslist and drove two hours to purchase it. Six months later, Todd was diagnosed with ALS. We made plans to move north, to the snowy Upper Peninsula of Michigan, and we were thankful for our all-wheel-drive Toyota Sienna.

Todd was glad I would have a reliable vehicle after he was gone.

Neither of us expected that he would outlast the vehicle. He has lived longer than expected, and vehicles in the Upper Peninsula have short lives with our heavily salted roads.

A year ago, a piece of metal fell off my van. I brought it to the mechanic who works on our vehicles.

“This fell off,” I said, holding up the rusted hunk of metal.

“You want me to fix it?” he asked.

“What is it? Is it important?” I asked.

He tossed it in a scrap pile in the corner of his shop. “There. Fixed. It’s a heat guard. Just don’t idle the van in a grassy field, and it’ll be fine.”

I’m thankful I found a trustworthy mechanic. Todd used to handle all the vehicle repairs. He knows enough about cars not to be taken advantage of by auto shops.

Little by little, the repairs and the problems on my 2006 Toyota Sienna added up.

The drive shaft fell off. The dashboard lit up with trouble lights, but the vehicle didn’t give any codes to determine what was wrong when the mechanic plugged it into his computer. There was an odd whirring noise in cold weather, but it went away after the van heated up.

The last straw was the air conditioning quitting again. This time, the system wouldn’t hold a charge, and the summer has been insufferably hot.

It was time for a newer vehicle. I’m glad I had Todd’s help in weighing the options.

I loaded Todd in the back of his accessible van, another Toyota Sienna, and made a two-hour trip to Marquette to visit our closest Toyota-Honda dealer.

The trip was difficult on Todd, as he had to sit in the back of the van in an upright position for hours, and then under the hot sun at the dealer as we inspected a few vehicles.

We needed lunch, but didn’t want to go into a restaurant because we are social distancing, so I got takeout and we went to a friend’s house. Her house wasn’t accessible, but she was gracious enough to set up a fan in her garage, and we ate there.

We got back late, and Todd was exhausted. It confirmed what I already knew in my gut: Todd’s traveling days are over.

The following week, I looked at vehicles at our local dealerships. Rather than bringing Todd out in the hot, humid weather, I test-drove the vehicles up to our house and parked them in our garage so Todd could inspect them.

Todd researched the reliability, options, and fair prices online. He found some models had issues with transmissions and others had issues with electronics.

We settled on a Ford Edge that our local dealer purchased at auction. It had lived its earlier life farther south, and should last another 10 years up here. It’s smaller than my old van, and it will be a good vehicle for my daughter to learn to drive in after a couple of years.

I’ve never purchased a vehicle on my own. My dad helped me buy my first car after college, and I drove my Oldsmobile Cutlass Ciera until Todd and I were married. He helped me find my second car, a Ford Taurus, and then the Toyota Sienna.

It’s a small victory that Todd outlasted our minivan, and now he’s again glad that I will be left with a reliable vehicle after he’s gone.

Although he was around to help again, I was much more involved this time. The next time I purchase a vehicle, I will probably be on my own, so I made mental notes of what he looked at and the questions he asked.

I’m preparing for the day when I won’t have my best friend and life partner.


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.


Patrick Revere avatar

Patrick Revere

What a beautifully told experience, thank you for sharing this. Bless you, and all the other caregivers. For those who are ailing, particularly near the end of life, the simple things done together mean everything.

Kristin Neva avatar

Kristin Neva

Thanks for your comment Patrick.

Christine Comodo avatar

Christine Comodo

Hi, you said something that hit a nerve. I am preparing for the day I lose my life partner, and best friend. I am there now, and I try to imagine being alone. But it is starting to consume me. How are you dealing with this?
Thank you.

Kristin Neva avatar

Kristin Neva

It is a really tough to try to balance preparing for the future, grieving lost dreams and abilities, all while trying to appreciate the time that remains. Initially I was paralyzed by fear of the future and I had to train myself to "Live in today." I put up a note by my kitchen sink that read, "Live with God's Grace for Today." Beyond that, I try to hold it all--experience the joy of living while still allowing time to let myself grieve hard--I've written about that theme here:

Diana Hosner avatar

Diana Hosner

Nov. 13 will be our 50th anniversary. I just hope I get to have him for that. I’m blessed to have 3 sons for vehicle help. It’s hard because my husband was my caretaker, I lost a lung to asbestos plus I have emasculate degenerative eye disease. I’m trying to be brave and get him through this. I was the one who was to go first. He was so healthy. I wish you a very happy future. You have children to keep you going. God Bless You!


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