Long Way Home

26 Apr

When I was 15, I spent 8 or so of my Saturdays, attending Driver’s Ed. I would come each weekend, dressed in my fringed leather jacket, looking like the punk I thought I was, counting the days till I could drive. To be able to come and go as I pleased, go wherever I wanted, and the freedom to do whatever I wanted to do without my parents being involved! I couldn’t wait!!

When I sat in the driver’s seat for the first time, I was terrified! (Full disclosure: I had once driven about 50 feet with my friend, Barb, but I scared us both, so that was the only time I’d driven before that day.) Thanks to my excellent teacher, Mr. Radar, I got through driver’s ed and got my license. I got my first car – a powder blue Volkswagen Rabbit – and I was FREE!!!!

For most of us, driving is equated with independence. We long for the open road, plan road trips, write and sing songs about driving – driving away, driving home, driving just to drive. As much as we curse the morning commute, the very fact that we have traffic jams attests to how much we covet our cars and being able to drive them. For most of us, the ability to drive, is part of who we are. We are so used to just walking out of the house, jumping in the car, and going wherever we want. It’s easy to take it for granted.

So, what happens when someone tells an FTD patient that they can’t drive anymore?

Now, just because someone has FTD, it doesn’t automatically mean they can’t drive. Unfortunately, though, many people with FTD lose their ability to plan and multitask, or they may have slower reaction times. Couple that with a loss of inhibition and difficulty regulating emotion, putting them behind the wheel of a car could be a recipe for disaster.

Remember, too, that most people with FTD have little to no understanding of their condition. In their mind, they are fine, nothing is wrong, and – quite often – everyone is against them. The loss of their driving privileges is just another blow.

For Keith, this blow came last year. After undergoing neuropsychological testing, he was strongly advised not to drive. A driving evaluation done several months later was the nail in the coffin. Until this past week, we hadn’t seen the results of the evaluation. Having been told at the time that he did, “fine,” Keith was convinced that the doctors and I were conspiring to keep him “locked up.” (Have I mentioned paranoia and suspicion as a symptom?) As this sentiment brewed and stewed these past months, it increased Keith’s agitation whenever it came up. He was certain that a trip to Mayo Clinic for a second opinion in February, was the answer and looked forward to it with anticipation. He was convinced that he would leave Mayo with the diagnosis changed and his driving privileges restored. When this didn’t happen, it was a second low, hard blow.

Recently, he requested the results of his driving evaluation. After being momentarily convinced that they had been “lost,” by the hospital, they came in the mail this week. Watching him read the analysis was sad. Reading them myself was sobering. While he did well initially, when speed and distractions increased, he was unable to keep up. His performance was poor enough that he was not allowed to complete the Interstate portion of the evaluation and the tester officially recommended the revocation of his license. The third blow.

After the initial dejection, there was anger and accusations. Because I had answered some questions for the evaluator, I had influenced her and this was all my fault. Anyone could have make those mistakes. There are people out there driving right now that shouldn’t be driving. He could drive better than anyone, especially the doctor!

By evening, things had settled down again and I haven’t heard any more. I’m sure I will eventually, but for now, all is quiet.

Keith has a local senior ride service that brings him home from work when I can’t, he could take the bus anywhere he likes for free with his disabled veteran card, and I take him anywhere he needs or wants to be. The reality is, however, he doesn’t generally go anywhere. And none of that is the same as being able to get in his car and go by himself.

As hard as it is for me to watch him be so down and miserable, I can’t even fathom how hard it must be for him. He feels betrayed by everyone and stripped of a fundamental part of who he is. Keith was one of the best drivers I knew. He loved driving! He liked nothing more than getting in a truck full of boxes and accepting the challenge of finding a route across the delivery area. He thought nothing of driving 45-50 hours a week, through rain, blizzards, you name it – whatever the weather threw at him, he didn’t stop and he always made it home.

Now, his pride and joy, Packer green Taurus sits in the driveway. Keith won’t ever drive it again. Keith won’t ever drive anything again. I can’t blame him for being mad. I don’t know that I’d handle it any better. It’s just another one of the casualties of this war.

This war . . . This is dementia.

*Along with being a song about driving aimlessly on “the long way home,” the title is a nod to Supertramp and Keith’s enduring love of classic rock.

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Posted by on April 26, 2020 in Uncategorized


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