Our hosts are joined today by LA Times writer Jeanette Marantos and Virginia's brother, lawyer Bob Simpson, to tell us how they knew it was time to stop their loved one with Alzheimer's Disease from driving. They share stories on the challenges they faced and the clever ways they were able to get around them.
From the University of California, Irvine, this is UCI MINDs, spotlight on care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer’s and other dementias.
Welcome to spotlight on care. I'm Virginia Naeve and my co host is Mr. Steve O. Leary. Today we are going to talk about the subject of taking away the car keys and or the car from someone with Alzheimer's or other dementia. This is not an easy task. Steve and I both had to deal with that issue. And we have two guests here with us today. Who had to face that as well. So we thought the four of us could share how we tackled the problem. So let me introduce our guests. First, we have Jeanette Marantos who just previously recorded a podcast with us regarding the topic of traveling with her husband who suffered from Alzheimer's disease. Jeanette has written for the Los Angeles Times on a variety of topics since 1999. Then she joined the staff in 2018. Currently, she is writing for the Features section focusing on all things flora. Her personal goal is to transform her own yard into an oasis of native plants, fruit trees and veggies, and I think I'm gonna have to visit sounds great. Our second guest happens to be my brother, Bob Simpson lives with his wife Janine in Savannah, Georgia. When mom had Alzheimer's disease, he was living here close to us. And our other brother Jim was nearby as well. Bob is a lawyer who has worked in the field of mortgage fraud for many years, and currently is an anti money laundering specialist. Interesting, huh? His relationship with our mom, Helen Simpson, was loving and funny. Bob could always make her laugh. He always said “she was my best audience”. She's been gone for nine years, but he keeps mom, Helen, in his daily life in a funny way. She would often say out loud, well, Helen, and then ask herself out loud what's for dinner? Or Whoa, Helen, why did I go to the refrigerator? Bob says he does that to still frequently saying out loud while wandering around the supermarket. Well, Helen, why am I in this aisle? He could always make her laugh. I do the same thing. I walk into the pantry and go Why am I here? Anyway, I have to say I was very lucky to have two brothers who never caused me a day's worth of trouble when it came to decision making with mom and her care. So I feel very lucky. Welcome everyone to this podcast today.
Glad to be here.
Very nice to be here.
Good. I'm glad. I'm going to ask Steve and our guest, Jeannette and Bob to answer some questions about how they handled the subject of taking away the keys. Okay, I'm going to start off with the first question and Steve is going to answer first. What happened? Steve, The first time you thought that maybe it wasn't safe to have Patty drive a car? What was that like for you
It was scary. We were still both working. At the time. I think Patti actually was home. We just gone through the MCI diag- diagnosis. And she was going to meet me and a couple of our friends at South Coast Plaza, a location in in Orange County, California. And we'd been to this restaurant several times before with this couple. And so she was going to meet us at five o'clock and everything would go from there. And I get a call at about 5:15 and she's calling me from her cell phone, and she's lost and in tears and ashamed and scared. And all of those things were going on in her head about you know, not being able to drive or the fear of losing her driving privileges, which I would add is was a constant issue for her because she worked because she had a lot of independence. The idea that she couldn't go where she wanted to go when she wanted to go was not something she was Happy with
right as, as it is with many people no one wants to give up that independence. Jeanette, what was your story about the first few clues that you noticed
Steven was driving less and less I whatever we were together I would just basically drive because Steven seemed to, he was always in Ambler even before he was sick, and he was pretty content most of time with letting me drive. And I was gone a lot during the day working. So I didn't see what he was doing when he drove. But one day, some friends, some old friends came to visit we hadn't seen for a couple of years, and he wanted to drive us all to lunch. And I said, okay, and we all got in the van. We had a minivan, and we got in and it was a white knuckle ride for us all. I was, I just had no idea. And he we got on, we didn't go very far, we only went about five miles. And it was as a small community. So it wasn't like driving on Wilshire or something. But still, there was traffic, he had to make a turn into a parking lot. And he was clearly confused and flustered. And. And there was a couple of times when I felt like we were not going to safely get into that parking lot. So that was the first indicator for me the real indicator that he couldn't drive anymore by himself.
Okay. Okay. I would have Bob answer it for us, but the call came to me from our neighbor, who was one of mom's best friends, Betty Kay, and she called me and she said, wow, Virginia, I just saw my life flash in front of my eyes. I was a passenger with your mom. And I wasn't sure we were going to make it home. And so I, I really, you know, she was an hour away. It was not like I was there all the time. Driving with her. I wasn't. But Betty is the one who brought it to my attention that there. There was a problem brewing. And I needed to figure something out. So the next question is, Steve, did you casually bring up the topic of not driving before having a serious conversation or actually doing something about it?
Yes, we, we talked about once caregivers started that she didn't really need a car. Now there was someone here to take her places. That's when I started introducing the idea. And then when the diagnosis happened, everything changed. We'll cover that later, I'm sure. But the hard part is, is that you really can't remind them of the experience you went through. Because they don't remember it. I would talk to her about the fact she was never an aggressive driver. But she was now always on the right hand side of whatever street or whatever freeway, you know, going the minimum. And it was it was dangerous. She was going so slow
depth perception changes with dementia, as well as depth perception and getting lost.
You don't think about it? How many decisions we make when we're driving. It's just this unconscious kind of how fast am I going? Should I be in this lane or that lane? What what direction should I be going now? What is that car in front of me doing? There's so many minute little decisions you're constantly making, and decision making became it was answering questions making decisions almost impossible for him.
What was your experience Jeanette with casually bringing up the topic?
Steven was in denial about having Alzheimer's and he it was not a topic he would really talk about. And he he just it wasn't a topic that he would address. And he the problem got worse pretty quickly because I had neighbors and actually employees at the grocery store that we frequent and both told me that they thought Stephen was driving drunk that he was that we lived just down the hill. I mean literally less than a half mile. Like a third of a mile from our house to the grocery store, you could see the grocery store from our window. But he would drive down buy a couple. He liked Foster's, cans of fosters, and he would drive a couple, get a couple of those come back, apparently drink them, and then get in the car and go back and buy two more, either because he wanted more or he'd forgotten that he had first bought them. And Neighbors reported this to me. And I had no, I just didn't know what was happening. So that made it kind of imperative that I do something and there was no casual conversation about it. It was just something he wouldn't acknowledge.
Okay, Bob, I'm not. I don't really recall, if we had a lot of casual questions for mom about driving. Do you recall any of that?
No, I don't, I don't remember. Questions about it. There was a conversation I had with her where I broached the subject of sort of her cognitive abilities and her ability to remember things. And that was the first conversation I had where she cried about it. And because she knew, and you and I had talked about having this conversation with her before. And you know, when I broached it with her there was there was this popping of the bubble where she knew. And that's what I seem to recall happening with the conversation about the car later.
I know that we all have quite the story for the next question. And we'll start with Steve, again. What did you do when it was definitely time to take away the keys and or the car.
We were lucky enough that Patti had acknowledged that she had the disease, we were busy doing testing. And she had volunteered for that. So it was kind of a constant reminder for her. And once the once the diagnosis of Alzheimer's was given, we were told by the doctor that they were going to have to alert California the the DMV about this information. And actually, we never heard from the DMV.
We heard from our insurance company. Yeah, we heard from our insurance company, which said that our policy had been cancelled. And that and the reason was, is that one of our members was driving irrationally and with memory issues was kind of not a nice note. So I showed her that. And, you know, I said, Hey, we have to, we have to take you off the insurance policy. And that means you can no longer drive. And I think that the other thing we did is we got rid of the second car quickly, that once the car wasn't there, that made a huge difference.
I wasn't sure about the insurance company. It's a good question on different states have, you know, different rules and regulations and laws about that with insurance companies. But we did get a letter from the DMV, saying that she had to go in for an exam. And that didn't go well. And they eventually revoked the license. But it took a while. I would have liked to have seen it go faster. Jeanette, what was your story about when it was really time to take away the car and or the keys?
We have some very dear friends. Actually, it was my friend who accompanied me on a trip with Stephen once. But she and her husband lived across the street and David and Stephen were very close. And David understood the situation. And he also understood that Stephen was, refuse to acknowledge it or or talk about it or deal with it in any way. And so, unbeknownst to me, but with undying gratitude to him, he went out, I guess during the night I don't know and he disabled Stephens car. He basically took out a part I don't even know yet what something he took out in and he and he made it so that the car would not turn over. He couldn't start it. And Steven was upset and he wanted me to fix it. And I said, Well, I can't afford that right now. And that was something Stephen understood. I mean, he was always very frugal and worried about money. And so when I said we just couldn't afford to make that repair right now he grudgingly acknowledged it and we finally we just could never get that. And then he wanted me to buy another car and it was the same thing I said I can't afford to buy another car right now. And my car was usually with me and I was gone. So that was a godsend having the car be disabled?
Yes, most definitely. That took care of that. Bob, what was our story?
Well we tried to reason with Helen, and brought her I think, to your house, as I recall, and you know, expressed to her that it was maybe not the wisest thing for her to be driving. And and we tried to reason with it, as I recall by saying, you know, Dad worked long and hard to put you and himself in a in a good financial situation. And all that could be lost if you drove and hurt somebody or did some damage. And so the really responsible thing is, is to protect everything that dad built for the both of you to not drive anymore. And it was not easy. Getting to the end of that conversation. It didn't happen quickly. But we we got her to the point where she said, Okay, I understand that. The problem with Alzheimer's and other forms of dementia is the next day, they do not remember having that conversation. So all of your breath and all of your logic is back to square one the next day. And as I recall, Virginia. I don't know if that's your recollection, too. But it struck me that we're right back like that conversation that never happen.
Oh, no. I went to I said, Mom, where are your keys? Because what we talked about yesterday, I'm gonna take the keys now. And she said what? You're gonna what?
Yeah, yeah. So it looks like the all of your logic and all of your arguments. It's like you never had the conversation.
She adored our dad, they lived for each other. They had an amazing marriage. And I think when we kind of blamed it on dad, and kind of, you know, kind of brought that into the conversation, dad saved enough so that if he went first, you would be taken care of I think at that time when she was listening, she heard that. But then the next day, she didn't remember any part of it. frustrating to say the least.
A little heartbreaking too Yes.
Yeah. It is heartbreaking. Yeah. So looking back, Steve. It sounds like yours went better than some of our things. Was it early enough? Could she have done some real damage?
I think it was, you know, I think Bob said it right, It took time. Over time, things finally got to that point. But there were numerous occasions where she would ask about driving. It didn't go away. And I think one of the things that was helpful was whether it's, Hey, the doctor said you can't drive anymore. You know, one of those fibs, or in our case, we no longer have insurance for you. Something that you can use as a bridge to use as an explanation for why they can't drive. And then as Bob so aptly said, within 30 minutes, they're going to be they'll have forgotten to that and there'll be gone to something else. And in my case, if there wasn't a car around, that was her car, then that took away the issue either I've heard people keeping a car, and that temptation is just really difficult.
Yeah, it's a constant reminder that they used to jump in the car and go. I was told pretty early on that. It's a good thing to learn how to fib. Someone said to me, you know, ill bet you're not used to lying are you. I said no, not really. They said, Well, now's the time to learn.I tried.
I hadn't even thought about the insurance.
I personally have no problem with the passive aggressive approach of we don't have a car or insurance or the engine isn't working. I have, I have no problem with that passive aggressive, putting it out of your ability to control it. Because frankly, they're not they're not gonna remember what the logic is of why they can't drive.
No, My favorite quote that I bumped into before this podcast. Is it's better to feel responsible for their anger today than responsible for a wreck tomorrow
That's a good quote.
Yeah, it is it could, they could do damage or worse.
There's this thing that happens and everybody goes through it who has a relative with Alzheimer's where you were the child, and then you're not, you're the adult in the room, and you have to make the call for somebody who is either in Jeanettes case been your equal your partner, or in the case of your parent, where you have taken their advice over the years, and now you have to be the one to set the hours and grab the car keys and, and be the parent in the relationship. And I don't think there's a more stark example than this issue of taking someone's car for them all of a sudden, they're 15 and 16. And you're the adult saying you're not driving. And it's not. It's not a question of logic, they're not going to remember why they can't do it. And you just have to feel good about putting your foot down and saying, it's a safety issue. No more so than letting a 13 year old drive your car. You're just saying no, I'm making this adult call and you're not driving.
But that's that's exactly right. But boy, it's especially depending on where they are in their disease, especially. We went through that period where he was pretty rebellious. And he was he was angry at me for a lot of perceived in justices. And the car was just the one of them. And he called my sons, our sons and tried to get them to help him escape from me, because, you know, I was I was holding him hostage, basically. And but you know, he never really his his license expired, which helped. And I pointed out to him that his license had expired. And that seemed to finally put an end to it. It was kind of like, oh, well, my license is expired. I don't know where the logic was working in his brain. But I think at some level, he knew there was no way he was going to be able to renew that license. And I think that the prospect of having to do that and go through the test was more than than he could, could figure out how to do so. I think at some level, he knew that he just couldn't do it anymore. Even if he was resentful.
He didn't want to, you know, admit that, but he kind of knew it.
Now I wanted to make one more comment piggybacking on what you said, Jeanette, I think we've heard at least in the men's groups that I've been a part of, that there's this testing service, that you can go and have someone evaluated as to whether or not they're capable of driving. And one of the gentlemen in our group took his wife in three different times. And she passed three different times.
So that that was the opposite of reinforcement that you wanted. So I think sometimes trying to find that solution, and he had heard the idea and tried it because he didn't want to lie. He didn't want to be the person who was doing it. But you know, so we we've all said, hey, you know, you've got to step up and make these decisions.
Exactly. I think the DMV sounds like they're a little tougher because you you have to do the written exam, you have to do the eye test, then you have a verbal, at least in California. And if you let's just say you've passed all those, well, they still want you to go do the driving test, not just the written not just the interview, or the eye test. They want you to get in a car with somebody and then the decision is you know what, that examiner comes up with is final? I don't know about other states, but that's California. Anything else anyone wants to add?
Let me just say that it's a tough, tough question to decide when to do this. They're they're on this journey between clarity and confusion. And with it the loss of some cognitive abilities and some physical abilities. And there's no bright line and I've heard people talk about look for scratches in the cars or a trip to the grocery store that took an hour too long. And you know, they got lost or confused. You're looking for these signs. But I don't know if I feel like we let mom drive six months too long. She didn't hurt anybody. We were worried about it. But I think it's normal to not feel like you really know when this has to happen?
I think that's right.
If I can give anybody encouragement about it, it's when you in your quiet moments say, You know what, I gotta make this as a safety call for my loved one, I have to I have to make this about safety. Do they belong on the road?
And it helps to have some backup from family members or friends, it really helped that Stephens friend had been a participant in that. It gave me some extra support. So I just didn't feel like I was out there all by myself saying, You shall not drive.
Nice. What about your kids? Did they back you up on this? Or?
Oh, absolutely. They weren't around. But they were in total support of me doing that it was sort of out of their day to day with them. But they were alarmed at the prospect that he was driving because the conversations they had with him was were so bizarre. So they were concerned that he might still be driving. And when we found out that he was not sober necessarily when he had been driving, or that he could have been driving when he wasn't sober. I think that was kind of that sealed the deal for all of us.
Well we all may have made it out of that dilemma, okay, but some people don't. So it's best to be aware of, of different ways that we can handle it and different things we need to know about and remember
You know what we might mention here and Bob, you would know the details, I do know them in California. But if there has been a diagnosis of dementia, and you've been alerted, either to remove them from driving or to not allow them to drive and an accident occurs, you are liable. And that's what the reference was to the whole idea of, you know, the risk of this. So Bob's point about, you know, safety, the safety for someone else, but also just the opportunity of what, what to go through for them and for you if something terrible happened.
Good point. Really good point. Well, thank you, Jeanette. And thank you, Bob. And Steve and I are very appreciative that you're both here with us today.
Yeah, well, I appreciate the opportunity.
Thank you so much. And to our listeners. Thank you for joining us today. And check back with us soon for more caregiving advice on spotlight on care.
Spotlight on care is produced by the University of California Irvine, Institute for memory impairments and neurological disorders, UCI MIND. Interviews focused on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the spotlight on care podcast wherever you listen. For more information, visit mind.uci.edu