Hanging Up the Keys and Other Tough Decisions

Hanging Up the Keys and Other Tough Decisions
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I thought my husband, Todd, should quit driving long before he was ready to hang up the keys.

When ALS had weakened his left arm and right hand, he would get gas from a full-service station. I questioned whether he should be driving when he couldn’t pump gas for himself. He’d forgo wearing his seat belt because it was too difficult to put on. He took a steering wheel spinner knob off an old lawn tractor to use on his truck, because he needed more control turning into parking spots and backing up. Didn’t that suggest he shouldn’t be driving at all?

I voiced my concerns, but I didn’t push him too hard because I thought he was still a better driver than other people we allow on our roads. We let 16-year-olds drive, even though the brain’s frontal cortex doesn’t fully develop until well into adulthood, at which time humans have a better grasp of the consequences of their actions.

When I was a teenager, I got in the bed of a pickup truck with a bunch of other kids, catching a ride out to a Lake Superior beach for a bonfire. The young driver was going too fast, probably 70 mph, but we made it. I caught a ride back in another vehicle. Again, the driver was going too fast, and we weren’t wearing seat belts. She hit a patch of gravel and rolled the car. Everyone walked away, but my friend injured her neck and had to wear a brace for weeks. We weren’t drinking, but even without alcohol affecting our judgment, we were still reckless.

Even with Todd’s disability, I believed that with his years of experience, he was a better driver than many.

He didn’t have as much control as in his pre-ALS condition, but he probably could still safely control the vehicle, especially in the rural driving conditions of Michigan’s Upper Peninsula. His legs were still strong, so he could at least stop, and he had the temperament to avoid reckless situations.

For a long while, I trusted Todd’s driving enough to put my life and the lives of our kids in his hands.

Once he was driving us back from his parents’ home in northern Minnesota. The sun was setting about an hour before we reached home, and on a desolate stretch of country highway, a deer leapt out from the ditch.

Todd braked hard, but didn’t swerve — exactly what one should do in that situation. He hit the deer head-on, crumpling the hood, but we didn’t end up in the ditch. The van was still drivable, and we made it home safely. I was glad that he had been the one driving as I might have swerved and rolled the van.

But there came a day, after the disease progressed even more, when he wasn’t as steady on his feet. He struggled a bit too much turning the steering wheel. I finally said, “I’m driving when I’m in the van, and I don’t want you to drive with the kids.”

He drove on his own for another year after that. Eventually, he hung up the keys when his left arm was too weak to close the driver’s side door. That was a hard day for him, but I was relieved.

Todd’s had to make many decisions like that as the disease has progressed. It’s hard for me to know how forcefully I should push my viewpoint. It’s his life, but some of these decisions affect me and others.

When he began to fall and had already smacked and bloodied his face on the sidewalk, his sister wanted me to do something about it. “I’ve tried, but he’s an adult,” I told her. “You talk to him.” Todd had a basic wheelchair and a scooter, but I couldn’t make him use them. Even the medical professionals at our ALS clinic warned him that head trauma from a fall could lead to cognitive issues in addition to ALS. But he wanted to walk, until he felt his chair gave him more freedom.

He didn’t want any outside help in the home, but that meant all of his care was on me. I was willing to provide care, until I wasn’t able, which forced the issue.

Now we are navigating the level of precautions to take with social distancing recommendations.

I’m concerned that Todd wouldn’t survive a bad virus with his compromised breathing. He would not have survived a cold last February if not for 24/7 supervision and frequent cough assists.

Todd doesn’t want to spend his remaining days in isolation, but if he gets sick, I’m the one providing care. And if I get sick, who will take care of him?

These questions are without easy answers, so we’ll keep having conversations.

***

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.

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5 comments

  1. Sadie says:

    Thank you for writing this column, I look forward to reading it every week. My husband was diagnosed last year at the age of 45 and it has been a torturous road. Every time he loses another ability, we cry and mourn the loss and then try to suck it up for the kids’ sake. Last year, he was able to speak and this year we can’t even understand him. He refuses to use a speech device which we were lucky enough to get. However, as you said, he is an adult and can make that decision on his own. So many of his decisions have been taken away from him. So many of his plans, abilities, hopes and dreams have been completely blown up because of this. I can’t force him to give up more until he is ready.

  2. KG says:

    It definitely is such a difficult decision to make. In the beginning it just effected my left leg but when the disease progressed and moved into my right leg, then I definitely had to give up driving. Not enough strength to put the foot on the brake if I had to come to a sudden stop. I didn’t want to put anyone else at risk. Losing the ability to drive, you lose sense of freedom and independence. Not being able to get out due to the Coronavirus is very hard. Keeping your social distance at a time when you just want to live whatever remaining good quality time you have left is torture. But we must not think of just ourselves but what is best for everyone (patient, caregivers, family).

  3. Richard says:

    I appreciate you writing this column as I myself have ALS. I am still able to drive and I can still get around but much slower and with less drive or energy. I feel blessed though that I still can. I have been wondering myself as when it is going to be the correct time to quit driving.

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