Snapshots of Dementia: To the Man in the Red Pickup

Posted by Marti on August 11, 2020 in Dementia, Uncategorized | 20 comments

Dear Man in the Red Pickup,

I know you were angry yesterday morning as you hurried to work. Maybe you were late, and the older couple walking along your route didn’t help.

I too have experienced frustration when a biker or pedestrian slowed my progress. It’s no fun, especially when you need to reach your destination on time.

And of course, it didn’t help that this road had no sidewalks. What was this couple doing out there anyway?

Because I work in a world of words, I often see information as the answer to everything. Still, I realize you may not be interested in information. But since I remained silent while you screamed and swore at my husband, I thought I’d offer more of the story—albeit a little late.

You see, there’s at least one thing you couldn’t have known about him: He has an early-onset dementia called FTD (frontotemporal degeneration) that prevents him from making wise, quick decisions. So when you tried to teach him a lesson by staying firmly in your lane yesterday, and he didn’t move, he wasn’t being stubborn—at least, not in the way you or I might be. He simply isn’t able to process a concept such as “A truck is coming. It may not stop or move over. I should get out of the way” fast enough to do what you expected.

I realize you saw his behavior as arrogant and rude. But this is far from the truth. Until about two years ago, he was a pastor who loved (and still loves) God and people. Even at his best, he would have thought you should respect him as a pedestrian, but I doubt he would have challenged you by remaining in your lane. Now, he just can’t think fast enough to move over, even when I tell him to (which I did as you approached us). So even though you told him, “Next time, I won’t stop,” I’m not sure he has the mental ability to change his behavior.

My husband’s dementia also causes obsessions. One of his current ones is walking, and so the two of us walk at least 3.5 miles every morning and nearly that far every evening when he’s not too tired (his dementia also causes exhaustion). Several months ago, our family made the decision not to let him walk alone anymore. Although he knows about the COVID-19 pandemic and social distancing, he can’t follow the steps needed to carry out those restrictions on his own. His lack of logic also means that more than once, I’ve had to pull him back from crossing a street as a car headed right toward him.

Why do we walk on that road where you met us? As you know, few streets in our area have sidewalks, and that route happens to be my husband’s favorite. We go early in the morning (we leave at 6:30 or 6:45 a.m.) when traffic is light. Yes, we could walk at the local rec center, but until now, I’ve felt safe on the roads. I had already told him that when school started back, we might have to readjust our route. He has lost so many freedoms (he cannot work or drive anymore) that I didn’t want to take away one more thing. But of course I will do that—just as I took away his car keys—rather than see him injured.

I confess: I don’t really understand why you didn’t move over. That’s what I do when I’m driving and someone is walking or biking on or near my lane. The other person’s safety matters more to me than my need to be right. I’m not sure you agree.

I would ask you to consider, though: What if instead of Tom and me, it had been your parents or grandparents walking along that road? Would you have treated them the same way? And what about the teenage boy, a passenger in the truck behind you? He sat with his window open, taking in everything you said and did. I taught my children that we can often learn good lessons from a bad example; I hope this young man was able to learn yesterday that bullying is wrong, no matter when or how it occurs.

In reality, sir, I’m the one you should have yelled at. I’m not only my husband’s wife; I’m his caregiver. I’m responsible for everything in our lives: earning a living, taking care of our home and finances, planning and preparing meals, decision-making, driving, supervising his medications—everything. So when he didn’t move out of the way, it was my fault, not his. I know I should have pushed or shoved him instead of just speaking to him.

I didn’t mention his problems to you yesterday because I saw how angry you were, and I knew it wouldn’t help. But just so you know, this incident traumatized both of us. I was still shaking and fighting back tears when we returned home and I had to start work.

But in a way, sir, I should thank you. You’ve helped me do my “job” of caregiving better.

Because now, I realize: There are other people out there just like you.

Yours sincerely,

The Woman at the Side of the Road

I learned long ago that there are multiple sides to every story. I truly do see this awful experience as a “messenger for good” in my life to help me take better care of Tom.

I also have cards that indicate the “person I’m with has dementia. Please be patient.” I keep them in my purse, which I don’t take with me on these walks. I will keep at least one in my pocket now!

If you have a friend or family member who has or may have dementia and something similar has happened to you, feel free to share in the comments here. Your story matters, and so do you.