Snapshots of Dementia: Driven to Distraction, Part 2

Posted by Marti on September 3, 2020 in Uncategorized | 4 comments

Author’s Note: This post is part two of a two-part series. Check out part one at this link, then pick up the story below.

For one of the first times ever, I posted a brief summary of my concern on the Facebook support group I had recently joined for spouses or partners of those with frontotemporal degeneration (FTD). By this time, my kids and I had looked at the symptoms of FTD, behavioral type, and been amazed. After months and years of trying to find out what was wrong, here was a disease that looked like a perfect match. Why had no one mentioned this before? We’d have to wait for more testing, but it certainly looked like this was a possibility. I may write more about this later, but this group was rapidly becoming an information source, sounding board and source of encouragement for me.

And this case, it was a lifeline. I shared the various driving-related incidents that had occurred and that we still didn’t have a real diagnosis or definitive answer. But to a person, everyone who responded (and there were more than 40 who did) to my question said: Do it now. Don’t delay. Keep him from driving no matter what.

I read stories of accidents, of liabilities, of spouses who were still driving and had major problems. I read of doctors who refused to say the FTD patient needed to give up their license, only to have an accident occur.

But mostly, I read what I’d already read on this site: Our story. And I knew it was time.

I shared all this information (what had happened with their dad and driving, what our former pastor had said, what the other spouses had said) in brief with the next set of reinforcements I called in: Our children. I am sure I sounded at least somewhat irrational (after all, by this point, I probably had sleep deprivation.) But I could not in good conscience keep letting Tom out on the road.

Or could I? I knew I needed the wise counsel of those who also loved him and wanted his best. I didn’t want to mess this up.

I don’t actually remember which of our children I contacted, but I do know they all agreed to “talk amongst themselves.” The conclusion? No, Dad should not drive. Yes, they should help me tell him.

Our two oldest daughters suggested they initiate a Skype call with Tom and me (this was before Zoom had reached its present-day popularity). “After all,” said one, not quite tongue-in-cheek. “He’ll know we must be serious if the two of us agree.”

We made the call. They cried. We cried. But we told Tom that we were just too concerned for his safety, and that of others, to let him keep driving.

Some special friends were praying during this call, knowing what a hard message this would be to give and receive. And Tom took it better than I anticipated so I’m sure the prayers were powerful and effective.

His main concern in the moment? Work. “So are you saying I’m just not going to work anymore?”

I suddenly realized that yes, that’s probably what I was saying. Maybe there would be a way he could work at some point. But in the meantime, he would be safe. And I would hide the extra set of keys.

I know of only two times that Tom has driven since that day other than backing the car out of the garage when he thought it didn’t matter (It did.) Both were without my knowledge but neither was without someone else’s permission. Once, he scared his passenger so badly during the one-mile drive that the person said, “Never again.” The other time, a friend asked him to pull a car into a garage. His poor depth perception caused him to hit and damage the bumper.

Of course, I wasn’t happy these things happened. But I did see them as confirmations of our earlier decision.

Tom had always been the primary driver in our family. Oh, I’d done lots of driving through the years (having five children pretty much necessitates that). But if we were together in the car, 98 times out of 100, he would drive. I’m still not quite used to always being in the driver’s seat.

But I’m learning. And Tom has adjusted. And yes, we probably waited too long. I’m so grateful for God’s protection and for those wise friends and family who helped me do what I learned to do long ago on the mission field and “err to the safe side.” I’ve followed that principle more than once in this journey. I’d rather make the decision too soon than too late. So even before a doctor confirmed dementia or anyone said he shouldn’t drive—we said it.

Because it was the right, and safe, and loving thing to do.

If you have a friend or loved one with some of these issues, please consider our experience. At the very least, have someone with them in the car. A doctor will rarely tell the state an individual should not drive (this still hasn’t happened in our case, although one neurologist and his current primary care physician have both said he should not), but sometimes they will request a test.

I was grateful Tom didn’t press me about testing, because at one point, I think he could have passed and still been unsafe. And when you are driving, realize there are more than likely people out there who may be one step away from a dementia diagnosis. Choose safety for yourself and others, and feel free to share your experience in the comments below. Your story matters, and so do you.