What are the real logistics if you want to travel with a person with dementia (PwD)? How do you know it’s safe? When is it necessary to stop, for your loved one’s safety and security?
This is a topic I am very familiar with. My partner Jon and I took my sister to Italy and Sicily when she was later Stage 4. It was her primary bucket list item and we wanted to help her cross that off her list. It was no vacation for us. That said, I’d do it again in a heartbeat. Peggy loved it and had only happy memories of the trip—and that was really the point of going.
After we got back, she told me she wanted to go again! I kept my best poker face, replying “sure, maybe next spring,” while in my head I screamed “No!” My partner and I remembered the good times too, but we also remembered the meltdown in Malta, the misplaced camera, the shadowing, and the navigating of crowds and stairs at the Vatican. And then there were the harrowing side quests trying to find restrooms in time to avoid an accident. It was incredibly stressful.
So how do you know you’re not going to have a travel disaster? You don’t. It’s a risk—your PwD could wander off and get lost, they could have a meltdown, they could get sick or hurt. You have to decide for yourself if the trip (foreign or domestic) is worth it.
For us, it was worth it. Here’s what we did to try to ensure we all had as good a trip as possible, and it involved calculating everything to the nth degree. Even so, we got lucky, and I know it.
The first thing to do is make sure you’re being realistic—about your plans and about your loved one. Try to assess your PwD’s abilities before you plan anything. We thought at the time that Peggy was late Stage 4, maybe early Stage 5. Looking back, I think we were right that she was later Stage 4. Peggy still had good cognitive reserve then, so I felt like she could handle the trip. Also in 20/20 hindsight, my partner and I agreed that we could not have done that trip even a few months later, as Peggy just wouldn’t have been able to navigate it. We squeaked by.
Next, run your plans by someone objective who can give you good advice. Long before we left for the trip, I ran everything by my therapist. She asked a lot of questions—and thankfully I had answers to those questions. She was the one who suggested that if we did want to visit Italy and Sicily, we should do it as a cruise so that Peggy would go back to the same room every night. It would give her the ability to make a mini-routine, and would cause her less stress in the long run. My partner and I aren’t cruise people, so we had to do some research. Fortunately, we found a smaller ship, which was much less overwhelming as one that holds thousands of people.
We divided up the tasks. My partner did preliminary research, while I made sure that Peggy had a valid passport. I found that hers was expired so I had to get new photos, fill out the forms, and send everything off to the State Department. I ended up paying extra for expedited service because I didn’t want the added stress of wondering if her passport would get here in time.
Also, consider signing up for travel insurance—just in case. My partner and I usually just take the risk to travel without it when we’re by ourselves, but since we were contemplating a trip with someone with dementia, getting insurance seemed like the right thing to do.
As anyone who travels knows, the TSA at the airports can often be a complete nightmare. Transit through a big airport like Heathrow in London, or Atlanta in Georgia, has the potential to be even worse. Complicating matters for us, Peggy hadn’t flown since 9/11. When all the planes were grounded in the immediate aftermath, Peggy ended up stranded in Hawaii, and it really freaked her out. After that, she quit flying. I even asked her about it. Are you sure you want to get on a plane for a 10 hour flight? Absolutely, said Peggy. Given her history with planes, I knew if she was that adamant, then she really wanted to go. So I researched how to travel through a TSA checkpoint with a person with dementia, and it turns out they have a program for that.
If you are committed to traveling with your PwD, definitely check out TSA Cares. Generally speaking, I’m not a big fan of the TSA, but given our circumstances at the time, I didn’t feel like I had a choice to try to navigate the trip without their involvement. So I contacted them, provided all of our travel plans. fight numbers, etc. in detail, and then just crossed my fingers that it would work. To my (relieved) surprise, they were actually extremely helpful to us.
The day of our trip, we met the TSA agent at the entrance to the security line, and the agent walked the three of us over to a side screening area. It was just like pre-check; you keep your shoes on and go through a metal detector instead of the nudiscope. I went through first, so that I could stand right on the other side of the metal detector and direct Peggy to walk to me. The agent talked to her calmly and quietly (he never yelled at her), and as a result, we had probably the best screening process I could have hoped for. TSA Cares worked like a charm for us. Whether you will be traveling domestically or internationally, I highly recommend this program.
The next logistical hurdle was boarding the plane. We opted to not fly coach. Way too loud, way too bright, just too much chaos. I clued in the flight attendants so they’d know how to interact with Peggy. She couldn’t figure out to fasten her seatbelt, but the flight attendant gently helped her with it. The mood was set and we ended up having a smooth flight.
Consider having your PwD use a wheelchair, even if they don’t usually need one. I made sure to have a wheelchair waiting for us when we got off the plane at Heathrow in London. I sold it to Peggy as “Heathrow is a monster airport, and we’ll probably have to run if we’re going to make our connection (a bald-faced lie), and wouldn’t you like to ride rather than run?” She said yes, of course. The attendant who directed us through the airport knew all the shortcuts, and it was so much faster than if we’d done it on our own. We made our connecting flight with no problem.
I had made the same wheelchair preparations for when we got to Rome. Although we had to wait a bit for help now and then, it was so much better than if I’d left everything to chance.
Consider staying in the same hotel room with your PwD or book adjoining rooms. We had adjoining rooms and it worked out well for us. Peggy was enchanted to be in Rome.
There was one hiccup with the cruise: I wanted us to be next door to Peggy, but we ended up being a few doors down from her. That worried me constantly through the trip, but Peggy was together enough that she was fine. Again, I think we were lucky.
Fortunately, Peggy was a trouper all the way through our trip, which included various stops in Sicily and Malta, then back to Italy to see Pompeii and Herculaneum and the Vatican. Peggy was exhausted, but I could sense that getting through the trip was a major accomplishment for her. She really wanted that trip to happen. I can only imagine how hard it was for her.
Going back home was a matter of doing things in reverse. I’d taken care of all of the logistics for this, too (wheelchairs included) and, thankfully, there weren’t any gaps in my preparations. But again, I know we were lucky. Anything could have happened! I like to think that if it had, my partner and I would have been able to take care of it, but you never know.
When we got back to our home airport, my partner and I were exhausted. We were, frankly, totally spent. We couldn’t wait to drop Peggy off at her assisted living facility so that we could plop down in a hotel room and sleep for about 12 hours. There was so much exhaustion on that trip. Peggy was exhausted because she was really pushing herself, and—high cognitive reserve or not—I know it was a stretch for her. And Jon and I were exhausted because we were the safety team, the tour team, the food team, the trouble-shooting team, and the fix-it team.
In fact, we were the everything team. As I said earlier, this was not a vacation for us. It was work. Work in pretty places, but still work. That is key to keep in mind when planning your own trip. Even if your PwD can realistically handle the travel, you must be confident that you can tackle all the logistics. There is no such thing as overplanning in this situation. So, are you ready to be the everything team? If you have any doubts, err on the side of caution and don’t do it.
If you do decide to travel with your PwD, I hope you have a great time! And remember to take lots of photos. I know our trip photos were a big deal for my sister. Our big Italy/Sicily trip was late September–early October 2019, and for Christmas that same year I put together a scrapbook for Peggy of photos from the trip, plus all the ephemera I had saved. She was happy all over again, and it made me happy to see her so happy. Later on, as her disease progressed, she would often take great comfort in paging through that scrapbook and being reminded of our grand adventure.
