Traveling: Four Essential Tips / Alzheimer’s and Other Dementias

This is the Whole Care Network. Music Helping you tell your story, one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music Sue and I both have had that trip. Yes, we have. And that is the last trip that you take that you think we're not traveling ever again. Never again. Sue likes to say it's the trip after the last trip you should have taken, which is so true. Sadly, I had two. So I took one and then four weeks later I took another one, both a nightmare. And so I overdid it. We'll talk more about that later. We're going to talk about the things you can do to get ahead of the game and decide should we stay or should we go? Yeah. We have four tips. Yeah. Sue, you ready to get started? I am. Welcome. We are Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music Part of what we want to make sure we're doing is looking at the lens of the trip, not from our lens, from their lens. And in the beginning of the journeys, they may be just fine. Everything may be great, very little could go wrong. However, when it's kind of gotten to that phase where it's past where they should go, when it goes sideways, it goes really sideways. And Nancy and I both have PTSD from experiences that went really sideways. Yes, ma'am. And we don't want that for you. It's reasonable in the beginning of our journeys. We don't know what we don't know. And that's why it's important for us to be as intentional as possible of what we're doing and how we're preparing ourselves and thinking about as many different scenarios as we can. And really determining should we stay or should we go? Let's get started with tip one. All right. Well, tip one is a pretest. So here's some things we can do to decide how will it be if we get out of our routine. So you've been working really hard to create a routine that keeps calm and familiar with your loved one so that you really have the best possible day-to-day experience. But now if we travel, the journey is going to take us out of our routine and the destination is going to take us out of our routine. So we want to pretest how well our loved one is going to do when they're out of their routine. And we're not talking about a small pretest. No, we're not. Instead of five minutes down the road, go ten minutes down the road. If you're traveling, you're going to either be in a car or an airplane or a train or something where your loved one has to sit still for a longer period of time than down the street to the grocery store. So get in the car and drive 30 minutes one direction. Come back 30 minutes the other direction. Go on the interstate, whatever is not your normal route. And be gone for a good hour and see how well your loved one does. You don't want to find out now that you're committed to a journey that they can't sit for anywhere close to the amount of time you need them to sit for. Right. Think about how much if you haven't been going out to restaurants or haven't been around noisy environments or large crowds in a while but you think you will be in the new environment. Go someplace where there's a large crowd and a lot of noise and see how your loved one does. It could be fine. That's great. But test out the things that you think are going to be different so you can figure out, all right, what's the risk here if we go on a trip. My husband was fine when we took our last trip on the trip down to my sister's house two hours away. Drive down was fine. We'd been there a million times. He was actually pretty fine during the day because it was a place that he was still familiar with. We'll talk about the nighttime in a minute because we spent the night there. That was not good. And that is an understatement. And then when it came time to get to come home, he was having none of it. He was not going home. He was staying there. That was where he wanted to be and he was not getting in the car with me and going anywhere. We finally convinced him to get in the car. And on the drive home, he literally, every time the car would slow down, he literally tried to open the door and get out of the car. Every time, I can't tell me how many times I pulled him back in and shut the door or I hit the lock as soon as I saw him trying to reach for the door handle. That's scary. It was frightening. It really was. It was very frightening. The first thing I did when I got home is I went to the used car lot up the street and I traded my car in for a car that had child proof door locks on the back because mine did it. And every trip that he went out of the house from then on, he sat in the back seat with child proof door locks on because I couldn't trust him to stay in the car. But it was frightening is a good description of it. It really was. Yeah. And we had a very similar situation, although ours wasn't an optional trip. We live in South Florida and Hurricane Irma was going to come straight up our street, which it did. And I said, I've got to evacuate and get him out and packed very quickly. And we got on the highway and we hadn't been gone long when Jack realized we weren't just going to the grocery store, you know, some quick trip. And he was at what he's trying to get out the car. It was quite a struggle with him in the car. And the practicing before you go on a trip is really valuable because he had not done any of those things before. And, you know, I had already started to notice and didn't give it as much credence as I should have. Having a little bit of trouble just like going to the grocery store where I was still taking him with me, but then having a little bit of trouble to getting him back in the car to go home. So I had some some previews that I should have paid more attention to before I took us on a two hour trip away from home. So anyway, big, big tip there. Get away. Don't just get a little out of your routine. Get way out of your routine. And if you're already having trouble with your, you know, when you're taking a little bit out of your routine, don't ignore it. So anyway, all right, let's go to tip two. Before we go to tip two, one thing is give yourself so much grace through this. We again, we didn't know what we didn't know. And so Nancy, you had a little tip. I really didn't. I mean, I probably should have and didn't notice it. Give yourself a lot of grace as we're going through this. Tip two is evaluate. And what we're going to do when we evaluate is, you know, look at the components of the trip. For example, the sleeping situation. Is this the right thing to do? Nancy, you've got a story about that. Another good example of something I did not think all the way through when we went to my sister's house, been there a million times. The nighttime sleep sleeping situation. We were sleeping in a bedroom that had an en suite bathroom and I was using a child proof doorknob cover to keep my husband from leaving the bedroom at night. So I didn't have to worry about him wandering. When we slept at my sister's house, we slept in a bedroom that didn't have a bathroom connected to it. So I had to leave the door open for him to get to the bathroom. Well, I didn't think that all the way through before we went. That's where we slept all night long. He wandered around the house. Now we had a house full of people because this was a family event. I believe it was July the fourth and he went from room to room to room, rattling the doorknobs. People had to lock their doors because he kept going trying to get in all night long. No one slept. It was really, really a terrible situation. So didn't think about the sleeping arrangements in the bathroom situation before we went. Nancy, you mentioned the child proof doorknob covers. We ended up having to stay in a hotel overnight and the child proof doorknob covers may work in some hotels. They wouldn't have worked in ours. However, had I taken a door jam, I wouldn't have had to have slept at the base of the door of the hotel room overnight so that he couldn't get out. So evaluate what the room situation was. So you slept in front of the door all night long. Well, however much sleeping you got. Yeah. You sleep as a phrase of what I would have liked to have had. What you wished you were doing. Yeah, what I wished I was doing. So at any rate, I had evaluated that. So it's great to have resources for whatever scenario it's going to be and evaluate what that's going to be like. And if you can't, then consider whether it's the right thing to do. Another thing to evaluate is quiet space. Will they be able to have quiet space? Will they be able to have support? For example, if you were going on an activity where you're going to be meeting family and having family activities where perhaps it won't be as comfortable for them to go. Evaluate whether or not you're going to be able to get some professional support or someone to come and keep care for them while you go off and have the trip with everyone else. And then evaluate their level of familiarity with where they are now. And are they going to be familiar with where you're going? If they're not going to be familiar with it anymore and it's going to be quite a challenge, evaluate. Do you stay or do you go? And toward that, please don't let your heart talk you into something that your head or your gut are telling you not to do. And really be sure not to let anyone else talk you into it. Evaluate, listen to your inner voice to really determine if this is going to be the right thing. And if you don't think it is, evaluate what you could do as another option. Have family members come visit you where you're at or have a virtual trip, get DVDs. You can rent, you can buy virtual reality machines. My husband had virtual reality machines and absolutely loved them. So evaluate the best way to have a trip and whether it's do we stay or do we go? Nancy, how about tip three? So we pre-tested in tip one. We thought we did pretty good. We evaluated the situation on the journey and in the destination. We think it's going to be okay. Now, tip three is about planning. Let's plan it so that we make sure it's as good as it can possibly be. And we're going to plan not just to keep things calm, but we're going to plan also if something goes wrong. We're going to be ready for that tip. Did you say the word if there, Nancy? Yes, I did say if. I did, I did. First, I would suggest, well, Sue and I both would suggest, you don't need to tell your care receiver everything before the trip. Please don't. Matter of fact, we recommend you tell them the minimal amount because I don't know what it depends on the stage you're in at home. But I find I would tell my husband something two weeks ahead of time. I would have to answer the same questions over and over and over again for two weeks. It was not worth it. So minimize the information, don't create overwhelm and create a better situation for yourself as well. Now, let's talk about what to pack. Comfort items. Is there other comfort items for your loved one? Do they use a fidget blanket? Something like that. A fidget blanket is great. My dad and my husband both really, really did well with the fidget blanket. Like you're talking about the car when you, if you're on a plane or when they start to get agitated, those are things that they can anchor on that are just so comforting for them. So are there transportable things like their fidget blanket that are easy to take on the trip? Are there comfort foods, snacks they're used to having that would, that they're familiar with that just would keep them close to their routine and also keep them busy? Music. If you can get them where they're using, well, in the car, you can obviously have music however you want to. But if you're going to be in a place with other people, if you can get them using AirPods or some sort of headphones so that they can listen to music, it'll both be calming for them. And if it's music they're familiar with, it's also something else that's familiar. So we're going to try to add calm and familiar every time we possibly can. Photo books. If you've got photo books that you look at at home, we do. We keep those at home. Take those with you. So that there's an opportunity to be looking at something similar and have conversation starters for family and friends as well when they're there. My husband would watch the same, he would watch MASH every afternoon during when, when his quiet time in the afternoons, he would watch MASH and we watched the same reruns of MASH over and over and over again. So before we traveled on one of our trips, I bought a bunch of MASH DVDs and took them to the hotel we were staying in and every afternoon I would put the MASH DVDs on so that we could get into his normal afternoon routine of watching MASH. So there are things like that that you can take with you on your trip to keep as much routine as possible. So you're going to want to plan around their meals as much as possible, what their normal routine would be. They're going to sleep at night, plan as much around their normal nighttime routine as possible so that we can keep. We know we're out of the routine, but let's keep as much of it as we possibly can. Sure. So if your best time is in the morning and they get more agitated in the afternoons, try to actually plan the travel itself as well as the activities at the times where they're, it's best for them with their, with their normal routine. We talked in the pre-test about restaurants, but another good thing to think about if you're going to be going out to restaurants when you're traveling is the bathroom situation. If you can get a bathroom buddy like you've got a family member who could go to the bathroom with them. If they're not of the same sex as you are, that's great. If not, and you're not same sex, try to find restaurants that have unisex bathrooms so that you've got the opportunity to help them if they need help in the bathroom. Everything we talked about up until now is planning to so things can go right. But now we want to plan in case things go wrong. Yes. So you have a couple of examples of things that went wrong and how you managed to try to keep them in the best possible situation. Yes. When we evacuated for the hurricane, we got Jack out of what had been a familiar environment. We took him back to Atlanta where we had lived for many years to the home of where his son and daughter-in-law and granddaughters were. And he was so disrupted and didn't recognize things. And it was very challenging. And I knew that one place that always gave him great peace was being at church. And I started taking him to church to the first mass in the morning. And we would sit in a small chapel afterward and just have the calm. I would take him to the noon mass. I would get him to the afternoon mass periodically. We went in the evening. And so I was able to continue to get him anchored back to something that was helpful. On the other side of it, my stepmother planned a trip to remind my dad about how much he loved cruising. And they had really, truly enjoyed cruising for so many years. And so many things went sideways because it had quit becoming familiar. And if you're on a cruise ship with somebody who doesn't want to be on a cruise ship, it's really not a good experience. Or a plane, I can tell that. Or a plane. That's not good if they don't want to be on the plane. It's like, well, what happened with you with Kim when you were on the plane? Yeah. Well, we were coming back from the Caribbean, so we couldn't drive home. We had to be on the plane. And it was a complete nightmare. I literally sat next to him holding his hand, staring him in his eyes for two hours saying, it's going to be okay. It's going to be okay. It's going to be okay for two hours. I felt so sorry for the woman who was sitting next to me, and she had to listen to that for two hours. But anyway, all right. So we want to have backup plans. So what it is is that you'll be thinking through that. And when you're going to have potentially scenarios like that, best laid plans in all of these cases, best laid plans. Exactly. Be able to really have some significant, have several options for backup plans. Right. And so we want to take with us their ID, their insurance, car. Insurance cards, extra medications. We want to take our medical power of attorney, financial power of attorney, really anything that advanced, healthcare advanced directives, anything that we think we might need if something goes wrong. We want to call the doctor's office and let their doctor know that we're traveling and where we're traveling to. If it's out of state or out of the country and have a discussion around medication so that we can take extra medication. And also we'll understand what we can or can't do if we have a medication emergency. Another thing while you're at that, be, we recommend that you ask the doctor for some medication for in case of a, there's a lot of agitation. If you're uncomfortable with medicaid, sedatives or medication for agitation. Great. We hope you never have to use it. But it's would be so much better to have it as an option. If things do go south to have that as an option, then to not have it at all as an option and have to deal with the lead times and everything. I know, so you had to deal with some of that waiting on trying to get something filled when your husband was scared to death. It really was. It's scared to death is really the right way. His eyes, I broke my heart. He was so frightened and I literally was physically with him 24 seven and yet he was still so often you could just he was just really frightened. And I finally got ahold of his doctor and it did take some time to get a medication that could soften that for him because he was so completely disrupted that like when I took him away from the church, which is where he felt more calm. He would start to get into that disrupted space. So for for us, the medication to help soften it was really helpful for him because it took that fear away. Right. Okay, so we've done everything we can to plan for things to go to help things stay calm and then for when things go wrong with us and with our loved one. How about tip for where we actually plan a little bit for the people that we're going to be traveling with. And that leads us to tip for which is preparing others. We have gotten ready for the trip. We're either going to be traveling with family members or loved ones who are familiar with our loved one or we're going to be people are going to be coming in or we're going to be going to places where they haven't seen our loved one for a while. And it's reasonable. They may not know what to say or do. And so part of what we're going to do is to help prepare them, prepare them to understand what to expect, how to have conversations, things to or not to say, we don't want to ask them if they remember, we don't want to say what, you know, tell me what this is or tell me about that. We want to meet them exactly where they're at. We want to do things like talk to them face to face, get an eye level with them and if they're sitting, go ahead and sit with them. And then we also want to give them permission not to be okay. There are some people who have memories of our loved one before they had the diagnosis and this breaks their heart. They're not comfortable being around them. And if you can find yourself in yourself the grace to say it's okay, please consider that. And I've done that multiple times where it's okay if you're not okay. We love you. We're not going to change anything. It's reasonable. You might have that. So give others the opportunity to consider and to be aware of what to be expecting when they see our loved one. That's such good advice. All right, well, let's summarize. Okay. In this episode, we really worked to give you the information that you need to think ahead about whether you should stay or whether you should go and to plan well if you are going to go. Plan if things go for things to go okay and plan if things go wrong. We shared four tips. The first one was to pretest. The second one was to evaluate the situation on the journey and the situation once you get there at the destination. The third one was to plan. And the fourth one was to prepare others. If you have tips for people who are traveling with a loved one with dementia, we'd love to hear those tips. Please share them on our Facebook page or Instagram page. The links are in the show notes. If you like this podcast, please rate it, review it, follow it, subscribe to it and share it with others that you think might get value out of it. Whether to go or whether to stay home is a difficult decision to make when you're thinking about traveling with someone who's living with dementia. In this episode, we shared a lot of tips to help you make that decision. We're all on this journey together. Yes, we are.