Jeanette Marantos joins Virginia and Steve to discuss her experiences traveling with her husband, Steven, who had Alzheimer's disease, as well as sharing her tips on making travel manageable.
Episode 24 Traveling with a loved one affected by Alzheimers with Jeanette Marantos
From the University of California, Irvine, this is UCI MIND, 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.
Hello, and welcome. I'm Virginia Naeve. And this is spotlight on care. I'm here with my wonderful co host, Mr. Steve O'Leary. Steve and I thought that since it was summertime, it would be a good idea to have a guest who could speak on the topic of traveling with a loved one who was affected by Alzheimer's or other dementia. Before I introduce our guest, Steve and I like to say a few words about our own experience, which might relate to what our guest has to say, Steve, did you travel with Patty?
Yes, I did. I, I kind of went through, I think a fairly typical experience, which is, you never know when the last tr- trip is going to happen. But when you when it happens, you know it. We had taken a wonderful family vacation to the Bahamas and rented a a wonderful ship and taken all our kids. And it was it was fine. Patty did really really well. I have to quote my daughter. Did you even have a good time dad? Because I was busy worrying about her. We then came back and went to our condo in Hawaii a few months later. And this the moment we got there, she was ready to come home. She was disoriented, had difficulty she'd been there a dozen times or more. But this was it the no more travel because it was very disorienting and difficult for her.
Yeah, it was nice of you to try.
I didn't do a lot of traveling with mom. The only trip that I took her on was a road trip from Southern California to our relatives area in Arizona. And it was at the very beginning of her disease and the whole way in the car. She kept remarking about the trucks. Ha that truck is huge. Look at that truck. And I kept thinking okay, patience, patience patience, we got to one of the family gatherings and she kept repeating questions and repeating statements. And I thought what the heck is going on here. So I didn't get very brave later on taking trips with her, but I do remember that it was a little bit frustrating even in the beginning. So let me introduce our guest that I have with us or that we have with us here today and tell you a little bit about her. Today we have with us Jeanette Marantos. Jeanette began writing freelance articles for the Los Angeles Times in 1999. And she joined the staff in 2018. Jeanette lost her husband to Alzheimer's disease in 2021. And before he passed, she published an article about her experience of traveling with him both by plane and a car trip. She learned a lot doing that, and she's here to share it with us. Fortunately, Jeanettes tips will apply to traveling with either a spouse or a parent. Welcome, Jeanette. We're glad you're here with us today.
I'm so glad to be here.
Welcome. Glad to have you here.
Your article for the LA Times described what you learned by taking trips with your husband during various stages of his disease. First, tell us about your experience of flying to New York and then Germany to visit family.
My husband name is Steven and he he was diagnosed in in April of 2011. And then it was just kind of the pre cognitive gosh, I can't think of it PCI and
MCI mild cognitive impairment
cognitive impairment, right. With the with the belief that it was probably going to be Alzheimer's and so I thought it was important for us to try to make a trip and 2013 he had family in New York and siblings in New York and also in Spain. His sister whom he was very close to so we made this trip and it helped that my our youngest son was studying in Heidelberg, in Germany during that time, so we went there with them. And I mean, we went there, figuring we'd see him. But we flew to New York, we saw his brother and then we got on the plane to go to Frankfurt. And it was a long kind of a. It felt like we were on the plane for a long time. And we and I tried to be mindful of just traveling. That far, I wanted to make sure that we stay up as late as we could, before we fell asleep to try to acclimate to the time zone there. And so we went for a walk after we arrived. And we neither one of us had been to Frankfurt in our lives. And Steven kept pointing out these landmarks and telling me that not only had he visited Frankfort before, but he had lived there for over a year, which I knew was not at all true. And it took a long time. But later, I began to realize the next day that he actually thought we were still in New York. And he had lived for a while in the city. And so he just the whole plane ride, never registered. He never registered that we had left, New York. That was the first inkling of what we were in for.
Yeah, it took some patience. And I'm sure you scratching your head half the time, what the heck,
well, he was he really he was just starting. I mean, the thing that happened is that as his disease progressed, he became less and less interested in leaving or going anywhere outside of what he was comfortable with. And that that little realm got smaller and smaller. As as his disease progressed, but we, we did have some nice times, but it was really a struggle. And I was so grateful that my, my son was with us because he we rented a car and we drove down to Spain from Frankfurt, and we were able to see his sister and he really remembered that he was able to tell people about that when we came back, and that made an imprint on him. And some friends we had in France, we stopped in and saw them, but I don't think any of the rest of the trip really registered to him, except it's just confusion and a little bit of misery. Why are we here? We my son's a musician, and he really wanted to go and see an opera in Verona. And we had a wonderful time there. But I don't think any of that registered and he couldn't understand why we were there or what we were doing.
Okay, so fast forward seven years into his disease. You wanted to take a trip to the state of Washington, I believe you said Seattle area for the birth of your grandchild. Tell us how that tell us how that flight went?
Well, you know, it was in February of 2020. And so we were just sort of entering this sort of confusion about where were we going as far as COVID or Coronavirus, which was at that time we got on the plane. And he he was we luckily didn't have to wear masks at that point. There were just people I noticed there were some people around me who had masks on. But Steven was frightened of the masks and he never understood why he needed to wear masks, or and refuse to do so which you know, it's very hard to get someone especially an adult man to wear a mask if he doesn't want to wear it. So on the plane though, we we had a seat in the I was in the middle and he was next to the window. And we were good for the like first 5-10 minutes. And then he began asking me, What when can we go home? And then he just sort of started this thing. What are we doing here? Why can't we get in the car and go home, I want to go home, I want to get in the car and go home. And it was just this he said to start this and I would explain that we were on a plane we were going to see our son and daughter in law and that they were about to have our first grandchild and he would listen to that for a couple of minutes. And then he would just start again. It was kind of like press replay. And the woman next to me was sitting next to the aisle at one point after about an hour of this. She She put her hand on my leg and she said oh honey and I knew I mean I was trying to keep my voice down but he was getting a little bit agitated. And I kept trying to talk him down and got a beer for him. You know, I was just I was trying to relax him a little bit and we finally were able to get through that but it was it was the last time we did fly a couple more times. But I started making sure that we always sat at the very back next to the restrooms, because that was the other challenges that he'd need to get up. And then it was this long march down the aisle, and I couldn't send him by himself. And it was, it just became untenable after a while. That was last time that I really felt confident about doing that. And then when we hit COVID, of course, it, it became impossible because we couldn't. We couldn't travel at all with him in a public setting because of his refusal to wear a mask.
Oh, interesting. I hadn't really thought about that.
And then there were all these things converging. I mean, I couldn't send him to a restroom by himself after that, because I mean, not that specific incident. But I began to learn that he he, he really couldn't manage that by himself anymore, either.
I know you can tell us a lot about that. In our next part, where you're going to tell us what it was like to do a long car trip with him, which of course, there are restrooms and restaurants and gas stations. And anyway, let me just frame that a year after you're flying to Washington, you knew that flying again was out of the question. So you wanted to visit your family. And you thought driving from Southern California to Washington would be possible. So tell us about that one.
Even on short trips, Steven would get agitated if he was in the car longer than about five or 10 minutes going to the store was out of the question. At that point. We were so far in the COVID. We really weren't he wasn't going with me to stores, his caregivers would stay with him while I went to the store. So I knew if we traveled, I was going to have to figure out some ways to keep him calm in the car. Because it's a two day drive. For us to just about 1300 miles, I was going to have to figure out how to get him into restrooms without a mask. Because again, that that added another little dimension that I didn't know what I was going to do with that. And then a ver- I think that I could bring the dogs with me. We have two medium sized dogs that Steven really loved and they loved him. And I figured that, you know, they could help keep him calm. But But then I started thinking of logistics, how am I going to get gas, get Steven into the restroom? Take the dogs out and leave Steven in the car. I mean, I was just it was too many balls to juggle. And so then a very, very dear friend of mine, who also happens to be a camp director in Central Washington. She She said, Look, why don't I come with you? And I was just like, oh my gosh, what a what a gift.
What a nice friend.
She's an awesome friend, and then she and her husband, her late husband had been were some of our closest friends in Washington. And I can't emphasize enough that if you're going to do this, you need someone who's going to be sympathetic to your partner who has dementia, and not just someone who's going to sit there and while you're grinding your teeth help you grind your teeth because oh my gosh, this is just you know, so crazy. I mean, she was calm. She was patient. She had great ideas for distracting him. She was a endless supply of little words, games, and you know and distracting him. Oh, look at that out the window. And I mean things that I was so I was getting flustered and frustrated and she would just sort of calmly give him another fruit snack or something. She thought would distract him and it just made all the difference on that trip. It made the trip possible.
You said you made a good music playlist.
I did. He had a playlist that he of all his caregivers played it for him all the time. And we would listen to music all the time. It really was calming for him and that could that would usually buy us a good 30 minutes or so before he would start asking well, where are we and what are we doing and that kind of stuff.
And when can we go home?
And when can we go home, Oh yeah, that was Yeah. So he he and then my friend would she she would take the dogs we'd stop for gas she would take the dogs and she could do some advanced work as far As what kind of restrooms and you know, I tried to call ahead and find out I was hoping that for instance, California has tremendous rest stops with all kinds of things, but I was looking for rest stops that had family type bathrooms where you can go in and you know, accompany your your spouse or child for that matter into the restroom, or, you know, opposite gender or differently gendered person. And they just, even their public relations people couldn't tell me. You know, they said, basically, it's just, there's some some places and some under construction and some that are closed, I found one that was completely done, but it was completely barred. And there was a sign outside the regular restrooms, which said that, you know, people, company, disabled people can bring them into this bathroom. And you basically, don't be surprised if you see somebody leaving another person, a man or a woman, you know, into the bathroom. So that's what, that's what I ended up doing with a lot of these restaurants is I just walked him in. And sometimes there were people in there, and sometimes there weren't. And I think by that time in Stevens disease, it was pretty obvious that he that he wasn't functioning normally. So there was they were sometimes startled to see an adult man in the restroom. But they quickly recovered and understood that there was some reason for this.
I think that's an interesting question that we faced. You choose to you chose to take Steven into a woman's bathroom, right?
As I took Patty into a man's bathroom, if you find yourself in these situations, ideally, you go in there when there's no one in there. But you know, it doesn't always work out that way. And I would almost kind of announce, hey, my wife is ill, and we have to use the men's bathroom. And most people were just like, oh, okay.
I was constantly I don't know if taken by surprise. But in deep appreciation for the kindness of strangers, I've found again and again, people who said, you know, my grandfather, or my mother or my brother that, you know, had dementia and they there was there was a sort of understanding that this is sort of a problem and a lot of sympathy we want we stopped at one rest stop, it was a pilot gas station in Oregon and near Klamath Falls, and the place was packed. I mean, these these, these pilot gas stations are usually just full of people, travelers. And I didn't know how I was going to get Steven through, through the store into and then there was I didn't know what kind of restrooms they had there. So my friend walked in and sort of did some advanced work. And she came back and said that the manager says that we're supposed to drive around to the backside where only the trucks are permitted to come. And she'll open the door for us. And you can just walk in straight into one of the shower rooms, which usually cost around $15 to rent for an hour. And I offered to pay and she said no, no, it's just fine. You know, I completely understand and I walked them into the restroom. And it was it was a gift. It was such a relief to be able to do that.
Didn't you say there was one time when he was in the men's room and you were not with him and he took off his coat and handed it to some guy?
We were we were trying. We were at a JC Penney's in, in California, in Los Angeles, and we were looking for we were looking for some new pants for him. And this again, this was before this was just just prior to the real outbreak of the pandemic but I he needed some new clothes and I you know, they're having a big sale, blah, blah, blah. So we went in and he used to be very fa- and picky about what he would wear. So I thought okay, well just take it and do it this way. And he I noticed that he wanted to go into one of the other dressing rooms and I realized he was looking for a toilet so I quickly steered him I didn't want that to happen in the dressing room. And we went and that guy showed me where the bathrooms were and i i I sort of showed him into the door and he walked through and I sort of lurked outside the men's bathroom. Another thing that I got very good at doing Yeah. And, and these children, these children were standing at the door, they kind of had a door propped open, and they were looking into the restroom with kind of astonishment these looks of astonishment, and they looked over at me like, like, what is going on? And they didn't say anything. They just had these big eyes. And I thought, uh Oh, and, and about five minutes later, I said, Oh, I said, is my husband in there and they said, my dad is with him. And I was like, oh, okay, well, so and so I just sort of sat there and run my hands for a few minutes. And this very nice man came out and he had Stevens jacket, and his hat in his arms. And he led Steven out, and he gave me his jacket and hat. And he said to Stephen and taken off, that he was washing his hands and Steven walked up to him and gave him his coat and gave him his hat. And then he tried to tried to pee in the sink and very kindly, the guy very kindly directed him to the urinal, and then lead him back outside. With relief. I think he was a little initially a little worried about
What a lovely man that was
He was he was so kind and his children were there. And God only knows what lesson they took from all of this, but I hope they they took a lesson of kindness and patience for people because I Yeah, they were they were obviously astonished.
I hate to keep bringing up bathroom problems. But you said
Oh no its huge
I know it is
it is the really little discussed and huge issue within this kind of thing.
So you were in a hotel room. And in the middle of the night, you see him going out the door.
Well, I was asleep, we were in a hotel room, and it was kind of an old fashioned hotel room, we were in Oregon, going up to Washington, and it was one of those rooms where, like an old motor court where you where you walk outside your room, and you're out in the parking lot, basically. And so we'd gone to bed, and I woke up. And I saw this figure at the door, and I realized it was Steven and I put the little chain on. But Steven had taken the chain off and opened the door and was walking out into the parking lot. So I leaped up and ran after him. And I said, What Where are you going? And he says, Well, I'm looking for the toilet. And I've said okay, well follow me. And we went back, we went back, and I led him to the bathroom. And I learned after that a couple of things. One was I always kept the light on in the bathroom. So that was the only light in the hotel room. And the other thing I learned was that just putting a little chain on wasn't enough that I started putting a chair in front of the door. And then I would put some bag that has something crinkly or noisy in it. So if you moved it, it was going to make what you know, we always had a snack bag that we had and it was always full of like, you know, crinkly bags, like potato chips or whatever. So if you move it, it made enough noise and it would wake me up and I usually slept pretty lightly. But yeah, so anyway, and I that that kept us from because that slowed him down enough that if he did try to move the chair and stuff, but I found that it was better to have a light on because once he knew he would go towards the light. So it made a huge difference. For him.
Good tips, really good tips.
It's confusing. It was confusing for him. He didn't know where he was. You didn't know why we were there. And but he did know that he had to use a toilet.
So the drive on the way home was okay?
It was my friend insisted on coming back with her. She must have seen how desperate I was and she insisted she had a really nice time. She said it was great to have this time to talk and reconnect and we did we had two days in the car and you know we don't see each other that often. So it was it was a wonderful time to reconnect. But she made the trip possible. I really would recommend that if you are going to embark on a trip like this that you find someone like that in your life who can accompany you and can be there for you and for your your companion, your husband yours, your spouse whoever it is because sometimes you just need to be able to walk away. I said in my article you need to learn how to count to 10 backwards and forwards multiple times but I am not very good at that I am I kind of go zero to 100 Sometimes, and I have to just back away and she could run interference. And it was it was really, really helpful, a godsend.
I noticed that you mentioned that to make sure you were with people who understand dementia behaviors is one of your tips. Could you talk a little bit about that?
We were lucky that we still have a, our house in Washington. And so we were able to stay there was it was vacant at the time. And we were able to stay in that house. People, I mean, we have, we have a lot of friends, a lot of people who care about Steven and me. But the reality of living with someone with dementia is it just takes people by surprise. It's unsettling some people find it disgusting, or they are really uncomfortable about it. I had one close person who just couldn't be alone with my husband, it just upset her too much. And that, that took me by surprise, it was not something I expected. And I, and it made it taught me that you really have to. If you're going to stay with a friend, you need to go over all of this. This is someone who's been around Steven, who knows what he's like. I mean, we did stay with a another dear friend who would come to our house who knew who had experienced all this and was really very welcoming and supportive and understanding. But it really didn't work with other people who were sympathetic in, you know, in theory, but were really who didn't know how to deal with the reality of living with someone who's got dementia, and it made it very uncomfortable.
One of the reasons that we're trying to do this podcast and get some information out there, there's a lot of sources now with information about dementia, but if you've had no contact with it at all, you don't know how to react
Yeah, I would just don't assume that just because they're an old and dear friend or even family, that they're going to be prepared for this. Talk to them, have they have they spent any time with with you and and in your husband or your your person with dementia? How were they during that time? You know, those are those are things you really need to consider, especially if you're staying for any amount of time. It's, it's going to be stressful enough on your, on your companion and for you, without this added stress of people in another room going, oh my god, you know, how do we let this happen?
Before we wrap up this podcast, Steve, do you have anything else you want to add or ask?
Along this line of being associated with people that understand I think I I echo Jeanettes comment, you know, there were so many people that were so supportive, but there were also people who either attempting to be trying to make a good situation or a bad situation good would say to me, I'm not sure that she's all that, that she's got that serious a problem?
Yeah, I know, I heard that a lot too.
And of course, these are. These are people who, who had seen Patti, we were friends but saw her once every year or six months. And I finally sat her down and said, you know, Carol, I love you but girl you you don't understand because you're not living it day to day.
Can I add one other thing that I think is important. If you're traveling with someone with dementia, make sure they have some kind of identification on them.
Ah, good point.
I mean, my husband refused to wear an ID bracelet but his wallet I had identification in his wallet. I had numbers to call in his wallet. I for a while before his, he got too bad. He had a phone and he knew that if I had written on the phone, I taped it on there and said press three for J which I was J and he knew that if he pushed that number, it would it would call me it was it was automatically dial because he'd forgotten how to even really use the phone. So you just just make sure there's Some way to identify and contact you.
Well, that night in the hotel, he could have been long gone.
Oh, yeah. Oh, yeah. And he wouldn't have had his wallet with him because he was in his pajamas Oh, my God, I hadn't thought about that.
Well, we can't thank you enough for being here with us today, Jeanette. Very, very helpful information.
Well, it's so important to talk about this because you kind of make it up as you go along. And so it's very helpful to have people like you discussing these issues.
Well, I will say to our listeners, thank you for joining us today. And be sure to 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