Snapshots of Dementia: Have Dementia, Will Travel

Posted by Marti on September 2, 2023 in Dementia | 2 comments

Happy anniversary, baby!” I told Tom as we woke up on board the first day of our Great Alaskan Adventure Cruise.   

He didn’t respond.  

“I’m saying that because we’re on this trip to celebrate our fortieth anniversary. And I’m going to tell you that every day of this trip!” 

He smiled. But beyond that, I never received a response any of the mornings when I wished him a happy anniversary.  

One day, however, he surprised me. He proudly told our friend Hardy at lunch, “Today is a special day. It’s our anniversary!” 

Not quite. But I knew he had listened to my greeting after all.  

And this time, I was the one who smiled. 

Just as they do at home, small incidents like these embedded themselves in our trip to Alaska. When someone is living with dementia, the disease is the ever-present but unwelcome guest. Because we traveled across the country, dementia did too. Because we went on a cruise, dementia came along. And when we came home, dementia joined us—because it never left. 

As I wrote a few weeks ago, the presence of our friends Hardy and Barbara made the entire trip much more doable—and much less stressful—for Tom and me. Think about just one scenario: restroom use when someone is LWD. I typically walk Tom up to the door of the restroom and wait outside, but it still scares me because his memory is so short. What if he forgets that I’m waiting for him? Or doesn’t remember which way to turn so he can exit? Family restrooms are helpful not only for those with small children, but because they are both rare and busy, Hardy’s assistance proved invaluable, beginning in the airport before we left.  

Before the trip, I learned something that also helped us: The sunflower is a globally recognized symbol for those with hidden disabilities, and many airports—including the two we would visit—train their employees in the Sunflower Program. Before our trip, I bought Tom this lanyard; he wore it to hold his state-issued ID.  

Because no one ever mentioned the sunflower, I don’t know if its presence helped us or not. But it made me feel much safer to know he was wearing a symbol that airport workers would recognize, especially if we somehow got separated. (The only time that became an issue was on the way home, when workers took him one way to get through security and forced me into another line, then delayed me while they searched one of our bags. I don’t mind saying that that was a scary few minutes.) 

I brought along two more items that made the trip much more pleasant for Tom: his iPad and his weighted blanket. I knew he would need the iPad to play his daily word games and online golf game; preserving at least this much of his normal routine can help a lot with the agitation that often accompanies travel for people LWD.  

Although I had purchased Wi-Fi ahead of time so he could keep playing his games during the cruise, the signal was generally not strong enough to allow him to play the golf game. He accepted this change better than I feared, partly because we were so busy with other activities. He could still play all his word games, which helped preserve at least some normalcy. 

His weighted blanket is a small lap blanket our daughter Kristen and her husband got him a couple of years ago. At first, he wasn’t interested in it at all. Now, it is one of his favorite belongings. Despite his long pants, long sleeves, and sweater, he started complaining about the cold almost as soon as we boarded the plane. His smile when I pulled out the weighted blanket made those fifteen pounds worth carrying! 

Like the iPad, his blanket also helps with agitation, common not just with travel but as a part of sundowning. Tom tends to fidget in the evenings and doesn’t always know what to do with his hands, so much so that he has worn near-holes in some of his jeans. A few months ago, I bought a special fidget blanket to help deal with this, but so far, it sits on our antique trunk, unused.  

Since he already liked the weighted blanket, when I notice him fidgeting, I place that on his lap, and he rubs and pulls at that rather than his clothing. While we were on the cruise, we almost always went back to our stateroom right after dinner so we could keep our quiet evening routine, and the weighted blanket helped keep him calm until we went to bed. At times I left it on him while he was falling asleep; the weight and the familiarity seem to provide special comfort. 

The blanket, however, did not comfort him the second night of our cruise, when he woke up a little after three in the morning. I had anticipated that the time change might be difficult for him, but I was groggy myself and at first didn’t realize what was happening. I heard him get out of bed, but instead of heading to the bathroom as I expected he might, he stood in the room, silent. 

“Baby, what’s wrong?” I asked. 

Silence. He turned and walked to one side of the room, then the other.  

By this time, I was out of bed too. “Baby, are you OK?” 

Silence. More pacing. 

After nearly ten minutes of “How can I help you?” and “Can you tell me what’s wrong?” with no response except more pacing, I was ready to give him a dose of the prescription I brought along in case of just such a scenario. I knew that, if he would take it, it might knock him out for hours. But suddenly, I heard his near-whisper—the first words he had spoken since getting out of bed.   

“My golf game. I need my golf game.” 

“It’s three-thirty in the morning, baby. It’s not time to play golf.”  

I spoke without forethought, but God allowed my words to communicate. Tom turned, got back into bed, and instantly fell back asleep. I lay awake beside him, stunned by what had just happened but grateful it was no worse. 

I realized later that he had gotten up close to the time we normally wake up on the East Coast. He doesn’t normally play golf when he first wakes up, but he does have an obsession with the game and had been unable to do so the day before. In the world of someone LWD, his responses made perfect sense. 

I have a few more “traveling while LWD” stories to share in my next post. We had many wonderful moments as well as some not-so-wonderful ones, but I will always be grateful for this amazing opportunity. 

And as best I can tell, Tom is too. 

If you or someone you know is LWD, have you traveled? What are some problems or concerns you experienced? What are some ways you found to help improve the experience? Feel free to share in the comment section below or on social media. Our story matters, and so does yours.