Snapshots of Dementia: Driven to Distraction, Part 1

Posted by Marti on August 26, 2020 in Dementia | 4 comments

Before we could return to neurologist No. 3 for the second time, a crisis occurred that forced our family into a huge decision.

At this point, Tom was still driving. In fact, he was driving for a ride-share company. Sounds crazy for someone who might have dementia, right?

Well, yes. And no.

Think about it. He had lost three jobs in quick succession. Where could he find work? He loved to drive. And although he struggled with directions now, God and GPS cover a multitude of sins. Add that to the fact that no doctor had diagnosed any specific problem beyond depression, and you’ll see why (although I did have concerns) Tom remained on the road.

I discussed Tom’s driving with my adult children (for a while, I had noticed him following more closely than he should) and they agreed that removing driving privileges would be difficult. When necessary, maybe a doctor could make that decision, but not right now. That was our plan.

So yes, I’ll go ahead and say it: We were wrong. And I apologize to anyone I may have unknowingly scared or hurt because we were not more proactive. And I pray—and fear—for all of those who may be endangered by those still in the diagnosis or pre-diagnosis process with a disease like Tom’s. I’m convinced; there are many still on the road who should not be.

Here’s what happened. Tom was driving for the rideshare company and quite happy to do so. I wasn’t as happy, because he was staying out for longer and longer periods of time. He had a certain daily financial goal, and he would stay out until he reached it.

No. Matter. What.

Of course, I didn’t know then about the obsessions his type of dementia (frontotemporal degeneration, or FTD) causes (read more about that in this post.) His desire to work and the low pay rate played right into this. The more he drove, the more he wanted to drive. And although I didn’t realize it at the time, I now know he didn’t have the logic or understanding to think, I’m tired. I should stop driving. I need to go home.

For him, it truly was all about the money. He was so happy to contribute to our family finances again that he would drive. And drive. And sleep at the side of the road. And drive.

As days and weeks passed, I became more and more concerned about his hours. I had more than one serious talk with him where he would promise to “only” work eight hours.

Of course, he never kept those promises.

At the time, I thought he didn’t want to keep them. Here’s what I didn’t understand: He couldn’t.

Within a very short period of time, 10 days or so, several things happened that spurred us to action. The first: Tom got a ticket, not for speeding, but for turning left on red. With a passenger in his car. And with a policeman right behind him.

Then and now, I looked on this as providential. The policeman gave him quite the lecture. Maybe it even stuck for a few hours or days.  But at least he didn’t cause an accident.

I thought the rideshare company might flag his driving. If they did, I never heard about it. And he kept driving.

Could happen to anyone, right? Yes. And no.

The next incident occurred as he was coming home from a night with the rideshare company. It was raining, and at a light, he skidded into the car in front of him. There was no damage to the other vehicle and only minor damage to ours. The policeman didn’t cite anyone because it was raining.

Could happen to anyone, right? Yes. And no.

The third incident took place in early April, a Saturday night. Tom’s eight hours were up, and he still wasn’t home. I went to bed and tried to sleep, but you can guess how that went.

Finally, at 3 a.m., I called him. And woke him up. I don’t know how long he had been sleeping on the side of the road, but that’s where my call found him.

More than an hour later, he arrived home, an ugly, paint-laced scrape on one side of the car. He had come too close to a barrier while picking someone up, he said. No, it wasn’t because he was tired. He just misjudged it.

A ticket and two scrapes in one week. But what I was the most concerned about was the judgment. Why had he stayed out more than twelve hours? What about our agreement? If he couldn’t honor that, should I still let him drive?

This time, after more prayer, I called in reinforcements. I called a friend for prayer and ended up talking to her husband, who happened to be my wise former pastor—the same one who’d told me about all the changes he’d seen in Tom and urged me to push for a diagnosis. Through my tears, I told him what had been happening.

And he told me about something pastors apparently have to learn about. It’s called “risk management.” He said that, besides the potential danger to Tom himself, if he were to cause an accident, we could be in deep legal trouble. If the lawyers could prove (and they could) that we knew Tom had some sort of cognitive problem and had still allowed him to drive, he said, “they could take you for everything you have.”

I felt trapped. Here I was letting Tom drive because the doctors said he didn’t have a problem, but now the courts would find me liable because, oh yes, he might have a problem. And how was I going to tell my strong-willed, wanting to work, hurting husband who had already suffered so many losses that I wanted to take away one more thing?

By now, the decision we made is probably obvious. But I’ll share more about how we got there in my next post.

In the meantime, if you have a friend or loved one experiencing struggles like Tom’s, how are you handling them? What factors influence your decision-making?

Even if you don’t know anyone in this situation, guess what? You probably know someone in this situation. Remember this when you’re on the road. And feel free to share your experience in the comments below. Your story matters, and so do you.