Phil Gutis, our Assistant Sherpa on The Alzheimer’s Podcast, recently talked to me about traveling to his nephew’s graduation and doing a speaking engagement. Phil covered three states in five days.
The first part of our conversation explores the rigors of travel and being in busy, unfamiliar environments. In this second half of our conversation, we focus on driving and its implication for the person, the family, and others.
Part one touches on driving on a high speed highway. It concludes with Phil advising people living with Alzheimer’s or other neurodegenerative condition to “just keep doing as much as you can.” Here, he continues with a note of caution.
There Are Going to Be Limits
Phil: Recognize there are going to be limits and recognize there’re going to be hard times and hard things. When I told Tim I was driving to Wilmington, he wasn’t happy about it. I wasn’t happy about it, but I did it.
And I knew enough, I was smart enough to know, going 75 miles an hour on a conference call desperately needing gas on unfamiliar roads is probably not the smartest thing to do.
“There’s a perfectly valid point of view that I shouldn’t have been driving and maybe I was a risk to myself and to others.”
That’s why I pulled over. So, that notion of as long as you can do these things and can push to do them, you should. Now, there’s a perfectly valid point of view that probably said I shouldn’t have been driving to Wilmington and maybe I was a risk to myself and to others and I recognize that, you know, and I shouldn’t have been on a conference call and I shouldn’t be doing all those things and that’s–yeah, I intellectually understand that ’cause I could have hurt someone else. And that scares me.
Christy: Were there honking horns? Were you swerving?
Phil: No, but I’m hyper aware. Especially with GPS and missing turns, you can get rattled very easily. And I now recognize doing a conference call while trying to get somewhere–I shouldn’t have done that.
Easing Back on the Throttle
Christy: It really did sound like Phil The Road Warrior. You have those neural pathways in your brain, where you did that for so many years. Did it even feel like there was a lot of conscious thought going on? Or just, of course you flip on the GPS, get on a conference call, and start barreling down the highway while looking for a gas station?
Phil: No. I knew what I was doing, and I knew it probably wasn’t the smartest thing to do.
“Learning not to give in to fear and anxiety and depression is important, but learning limits is important, too.”
Christy: It seems like there was a little lag time, though. Like you just were just, Boom! on your way. And then at a certain point–maybe as the gas situation became more apparent and the GPS was telling you to turn–like, maybe then you thought, Hmmm….I need to ease back on the throttle here.
Phil: Yeah. Yeah. Definitely ease back on the throttle. And you know, learning limits is important, too. Learning not to give in to fear and anxiety and depression is important, but learning limits is important, too. I meet people living with Alzheimer’s further along in the disease progression, and I hear they’re still driving and I think to myself, Hmmm…Not so sure I want to meet you on the road. And we’ve talked about this before, how important driving is, particularly in rural areas.
I Know in My Heart of Hearts That I Can Still Drive
Phil: I know in my heart of hearts that I can still drive; it’s not a problem. But there was a time when I thought I couldn’t because I couldn’t remember if I had looked one way before pulling out and you know, it wasn’t close to an accident, but somebody honked at me or something. I don’t remember if I looked.
So, there’s definitely a risk. I mean, am I driving while impaired? Is it similar to buzzed driving or drunk driving? I don’t think so. But I think I would need to–I don’t know how you draw that line, I guess.
“There’s definitely a risk. I mean, am I driving while impaired? Is it similar to buzzed driving or drunk driving? I don’t think so. But I don’t know how you draw that line.”
Christy: Driving has very much been a recurring theme in, I think, pretty much every conversation that we’ve had. And it is definitely a public safety issue. The fear, the concern is that when, or if, anosognosia comes into play and a person is no longer aware that they have any type of neurodegenerative disorder.
So, in that situation a person would very much say, Look, I am not going to keep driving if it imperils the safety of others. I would never do that. I’m a good person. I don’t want to cause harm to others.
And mean it 100% and that’s true–and at the same time have this other condition where they’re completely unaware that there is any type of cognitive impairment or limitation. That’s where it gets scary for families. For fellow travelers.
Driving & Anosognosia
Christy: I had clients, a married couple, and she had Alzheimer’s and he had vascular dementia. Their car told the tale of what had been happening. He was the driver.
And she said to me, “Of course, I would never get in the car with my husband if I thought he was unsafe! But he’s a good guy. He would never make other people unsafe. That just wouldn’t happen. I think when people aren’t able to drive, they should just give up the keys.”
“He’s a good guy. He would never make other people unsafe.”
And she was very earnest and very sincere. And of course she was at a place where her judgment was different than it would have been a few years prior.
And he, of course, didn’t see an impairment either. “You know, those concrete barriers, anybody would have backed into it. It was just a little fender bender. Yeah, I got too close to the curb; anybody could do that.”
Taking away the Keys
Phil: I guess that’s where it comes time for your family to say, Yeah, this isn’t a good idea anymore, and take the keys away.
Christy: Well, this is where it gets very fraught. There are a variety of ways to handle it. I think, unfortunately, what typically happens is families believe that when the day comes, the person will say, “Okay, I can’t do this anymore,” and hand over their keys.
Or, they can say to the person, “I’ve noticed X, Y and Z. It’s not safe for you anymore,” and there again, the person will hand over the keys. There will be sadness, maybe a couple of tears, and everybody will hug and it will be an ABC After School Special.
“Families believe there will be sadness, maybe a couple of tears, and everybody will hug and it will be an ABC After School Special. The reality is that is usually not the way it plays out.”
The reality is that is usually not the way it plays out. The way it typically plays out is quite unpleasant. Like most things, as Americans, we love our happy endings and we’d really rather not talk about, or even think about, unpleasant things. So let’s just keep kicking that can down the road. And that’s where it gets dicey.
Phil: Do people generally say something after an accident?
Christy: When you say people, are you talking about the family saying, Okay, we need to do something, or the person saying, Okay, I’m done?
Christy: I’ve rarely seen people say, “Okay, I’m done.” It’s almost always women who give up the keys more readily. Women are more apt to take the information that the DMV has revoked their license or suspended their license as equating that means they can’t drive anymore. And families kind of depend on that.
What if Something Happens?
The Criminal Side
Christy: A lot of times they’ll say, “The DMV can take care of this,” not really thinking through the DMV is not a law enforcement agency. The DMV does not revoke a license and then go to a home and say, “I need you to give me your license, sir.”
Nor does law enforcement go to anybody’s front door and say, “We have a notice from the DMV that your license has been revoked. We need you to hand it to us.”
Typically what happens with men is if they have a key and a vehicle that key fits in, that means they can drive. The end. That’s it. Licensing? That’s somebody made up construct!
There is no jurisdiction that accepts neurodegeneration of any type as a defense. Saying, “I have this diagnosis of Alzheimer’s, therefore we need to take that into account”? That does not fly.
And so that is usually the way it plays out: family doing a lot of hand wringing, sleepless nights, and, “Oh my God, what if something happens?” So the question I like to ask is, Okay, what if something does happen? What’s your plan then?
The reason I say this is because several years ago, a man in California who had dementia was driving near a farmer’s market. He thought he was hitting the brakes, but in fact hit the gas. He took people out.
To my knowledge, still to this day, there is no district attorney’s office in the United States or state’s attorney, whatever you call it in your jurisdiction, that accepts neurodegeneration of any type as a defense. So saying, “I have this diagnosis of Alzheimer’s” or whatever type of neurodegeneration, “therefore we need to take that into account”? That does not fly.
The Civil Side
Christy: Should the state’s attorney or the district attorney decide to press criminal charges, there’s that. On the other side of it is the civil part, where families of victims can sue and say, “How long did you, Spouse, know that this was an issue? How long ago did you, Doctor, diagnose this person? How many incidents have happened? How many auto body repairs?” That type of thing.
“How long did you know this was an issue? How long ago was this person diagnosed? How many auto body repairs?”
Of course, I’m taking it all the way down the road to the last possible point. The fact is, most people who are living with some type of neurodegenerative disorder do not kill people in a vehicle. That is not typically what happens. Nor do they even typically maim others.
But there is a lot of angst, and it is fraught with so much stress and emotional distress. And I think that there’s a different way to manage that situation, to manage that concern before getting to that point.
We Don’t Have to Make Decisions in a Crisis
Christy: I’m a big proponent of if we know something is likely to happen, let’s go ahead and map out a plan for it right now. So that when we need to spring into action, we have a plan. We don’t have to make decisions in a crisis.
We don’t have to waste any of our energy right now with that topic bubbling in the background of our brain. It’s like an app on your phone that’s just sucking up battery life in the background. Instead, we can just deal with it in by making a plan and then implement it when it’s needed.
“You can kind of feel his gut twisting in the future, right? Over needing to have that conversation?”
Phil: Yes, I hope we explore this further because I’d love to know what that strategy is. Given the knowledge also that when I did try to stop driving, it was devastating. It probably was an overabundance of caution on my part at that point, but I certainly get the idea that at some point it won’t be an overabundance of caution.
And yeah, I hope I know, I hope I’m aware enough to know that I shouldn’t be driving. But yeah, I can definitely see it being a very difficult conversation for Tim and I. And him saying, “You know, it’s time,” and me knowing what that means in terms of my life and my activities…Yeah, it’s important.
Christy: Yes, you can think of it on your side because it is such an important thing to you. And then just saying, “I can imagine Tim having to say that,” you can kind of feel his gut twisting in the future, right? Over needing to have that conversation?
What Do You Think?
Christy: So yes, we can definitely do a deep dive on driving and I would love it if our listeners and readers would send in their questions about this topic and we can address those during that show also.
Phil: Not just questions, but stories too.
Christy: Oh, yes. Always success stories. We love to hear those. Or, This was an epic don’t do that! We love cautionary tales also. Email your question or story.
See also: Driving Intervention Quiz
Dementia can last for up to 20 years or more. That's a long time to fly by the seat of your pants, struggling through trial and error! If you're ready to step into the life you and your loved one deserve, schedule your complimentary Dementia Caregiver Strategy call with Christy.