Traveling with FTD: Our Road is Not a Straight Line

When most people picture a weekend getaway, they imagine rest, adventure, new sights, and the joy of getting out of routine. For me, traveling with my husband Chuck—who lives with Frontotemporal Dementia (FTD)—means carrying a hidden map full of detours, dead ends, and constant recalculations. It is not easy, but I’ve learned that the journey is still worth taking.

Chuck’s memory doesn’t hold onto much these days. A quick bathroom break for me with direction for him to remain where he stands outside, looking at travel books, ends in me looking for him, calling him, to find he’s standing at a white Chevy he thought we were driving when in fact we are in a grey Toyota van. I now walk a bit faster and keep him in my sightline when I can—but even then, the smallest lapse in my attention feels risky. IS risky. 

This weekend getaway has been full of moments like this. Despite full days of sightseeing and familiar routines in a place we’ve loved, Chuck asks multiple times a day where we are and when we’re going home. Each morning feels like day one, and each evening brings questions about what comes next. His brain doesn’t store the arc of the day, only fleeting moments that quickly vanish.

At night, things don’t quiet down. Chuck sometimes wakes up in the dark, convinced it’s time to go to work. He dresses and prepares for a job he hasn’t had in years, confused and agitated when I gently redirect him back to bed. It’s exhausting, and heartbreaking.

Dining out is another layer of complexity. Reading a menu is overwhelming for Chuck now—too many choices, too much text, too fast-paced. He looks down, looks up, looks down again, clearly trying to process but getting stuck. I quietly pick something I know he’ll enjoy, offering it as a suggestion, and often he agrees. Small wins.

He believes we’re headed home every day. He doesn’t settle into the rhythm of vacation. He wants the familiarity of home. He’s always packing in his mind, always waiting for the next departure. That disorientation is constant, and no amount of soothing explanation seems to stick. His body, too, doesn’t cooperate the way it once did. He tires easily, his muscles weaker, his endurance shrinking. A theme park stroll becomes a strategic mission with planned breaks, shaded seats, and careful pacing.

Confabulation—fabricated or misremembered stories—is something I’ve learned to expect. On this trip, he asked the amusement park staff if they’d found his work keys. He hasn’t carried work keys in years. They were kind and patient, while I quietly offered context. It’s always a balancing act—preserving his dignity while managing the fallout of his confusion.

Still, in the midst of all this, I choose to go. I choose to explore because I need it—not just as Chuck’s caregiver, but as his wife, and as a woman who still longs for moments of beauty, wonder, and yes, even fun. These trips aren’t relaxing, not in the traditional sense. But they shift the scenery, break up the monotony, and offer tiny glimmers of light in a darkening journey.

I remain vigilant. Every moment requires alertness, creativity, and grace. But travel gives me more than fatigue—it gives me perspective. It reminds me that even in the hardest seasons, we’re still moving. We’re still here.

For more information about frontotemporal degeneration, go to www.theaftd.org, email them at info@theaftd.org or call 866-507-7222.

The Unseen Battle

📷 credit: our son-in-law, Ryan Rexroad.

💡for more information on FTD & to find support, visit www.theaftd.org



When people see Chuck, they often say, “He looks fine” or “He seems okay.” And in many ways, on the surface, he does. He smiles. He chats. He recalls a memory or cracks a joke that feels like the “old Chuck.” But what most don’t see is the constant tug-of-war happening just beneath the surface—the confusion, the delusions, the shifts in his reality, and the moments when everything feels scrambled. This is life with Frontotemporal Dementia (FTD), and it doesn’t follow a neat, predictable path.

FTD is an unseen disability. Unlike more familiar physical illnesses or even some types of dementia, its symptoms aren’t always visible. Chuck can appear alert and capable, but under the surface be completely lost or delusional. One day, he’s physically strong enough to take a walk. The next, he might struggle to stand or shuffle even a few feet. Some days he’s losing his balance and falling, only to have strength return. It’s not linear, and that unpredictability is one of the hardest parts—not just for Chuck, but for those of us who love and care for him.

What can make it harder are the well-meaning comments. “But he seems fine.” “He looks so good.”  “He must be doing great, he went fishing!” These words, though usually intended to comfort, often feel invalidating. They erase the private struggles—the emotional confusion, the exhaustion, the fear, the disconnection. The work it takes on the part of family to get him to activities, to the river! All things we do to support him and love him. FTD is not a condition with consistent, visible decline. It’s unpredictable. It comes in waves. It’s a thief that sometimes hides in plain sight.

There are moments when Chuck is incredibly “on point”. He’ll ask insightful questions, give brilliant answers and recall long ago events. And then there are moments—sometimes just minutes later—when he’s convinced about something that’s not true, or that someone is doing something they’re not. These fluctuations aren’t imagined. They’re real, and they’re part of the cruel landscape of FTD.

As his wife and care partner, I live in this in-between space. I grieve the parts of Chuck that are slipping away while holding on fiercely to what remains. I smile when someone says, “At least he’s doing okay,” but inside, I wish more people understood that “okay” is relative. “Okay” might mean he didn’t fall today. Or he didn’t pack up a few belongings saying he’s “going home” to the house we sold. Or he was able to make it to the bathroom in time. These small wins matter in a disease that’s devastating.

FTD is a daily negotiation—with time, with energy, with expectations. It doesn’t fit into tidy narratives of decline. It’s messy. It’s unpredictable. And it’s invisible to those who aren’t looking closely. He looks okay. 

So if you see us out and Chuck “seems fine,” know that you’re witnessing a moment—not the whole story. Know that behind that moment might be hours of confusion or fatigue, struggles to get him to the shower and to dress, trying to redirect him from thoughts of leaving or delusions. Reminding him, guiding him and reassuring him daily, sometimes hourly,  And know that sometimes, the most supportive thing you can do is simply acknowledge what you don’t see or can’t understand. 

Because while Chuck may look okay, he—and we—are living with a reality that is anything but.

We don’t want pity. Don’t feel sad or sorry. That’s not what this is about. If you can, offer grace and understanding, with a smile. While FTD brings plenty of heartbreak and hard days, we try to meet its challenges with humor whenever we can. Laughter has become one of our greatest coping tools—because sometimes, in the middle of confusion or chaos, a shared joke or a ridiculous moment reminds us that joy still lives here, too. It helps us stay grounded, connected, and human in a journey that often feels anything but.

FOOTNOOT from Ryan:This picture was the start of the journey, there were no fish in this hole but I knew there should be a fish across this stream and in the main river about 100 yards away. So I asked him if he wants to go over there and he agreed. We walked down to a shallow spot to cross and he didn’t approve so he went to a swift, deep spot and I stood downstream to keep him from getting swept away. We end up at the fishing hole and one thing about Chuck is he likes to help people catch fish so he won’t go to the good hole where I’m certain there is a fish. 

I sit there for a bit and I finally decide if he’s not gonna come up and catch the fish I will. I cast and no sooner than the bait hit the water a fish is on. I really wanted him to catch it so I did the only thing I thought would make sense and acted like I hurt my ankle and yelled for him to come help me! He slowly made it up the river bank and I was sitting on the ground holding my “injured ankle” and he said “do you need help?” And I said “yes take the rod and catch the fish!” Which he did and my ankle had miraculously healed in order to net it for him. That was a gift from god because that fish stayed hooked for at least 10 minutes and should have gotten off the hook multiple times. 

Shortly after he caught it and released it I asked him if he wanted to go back and get some lunch and he said “yep.” As we started back to the golf cart he asks me “Did you even get a bite? Because I didn’t get anything.” To which I responded “nope not a thing.”

So we started back across the stream we had crossed earlier and again he chose the path of most resistance while I carried both our rods. It took a while and he was struggling to get his feet under him but he finally made it to the other side. After we rested for a few minutes we walked to the golf cart and when he saw it he nearly sprinted toward it just to sit down and we headed back to the cabin for lunch. •

•Follow me on Instagram @debbieelkins

Downsizing with Dignity: How Chuck’s FTD Diagnosis Changed Our Home.

Painting of our old home by our daughter, Lindsay Rotella

💡for more information on FTD & to find support, visit www.theaftd.org



When Chuck was diagnosed with frontotemporal degeneration (FTD) in 2023, our world shifted. It wasn’t just the emotional weight of the diagnosis—it was the sudden awareness that everything about our life and lifestyle, our routines, and even our house needed to change. Deciding to sell our two-story home of over 33 years and move into a smaller, one-level house was a decision driven by love, safety, and practicality.

Why I Chose to Downsize

Our old home held decades of memories— raising our children, homework and art work, birthdays, kids’s sleepovers, holidays, late-night talks, crackling fires and lazy mornings with coffee.

It also held was stairs, lots of them. A full set of stone steps up to the entrance, more stairs to the second level, stairs from the garage into the house, stairs up to the back deck. There were tight turns upstairs, narrow doorways, and a layout that no longer suited our needs. There was no first floor primary suite, but there was a formal living and dining space we rarely ever used!

As Chuck’s FTD progressed, I could see that navigating that house would only grow more difficult for us and dangerous for him. He was recovered physically from a stroke in November but cognitively declining, getting slower and weaker. He was no longer able to help maintain this house. We needed a change, fast.

I wanted a space where he could move around safely and comfortably, and where I could care for him with less physical and emotional strain.

The Gift of Preparedness: A Durable Power of Attorney

One thing that made the financial transactions and the transition much smoother was the durable power of attorney (DPOA). We had a DPOA created and in place early—right after Chuck’s diagnosis. The document gave me agency to make financial and legal decisions once the dementia progressed and he no longer had capacity to do so.

Having the DPOA meant I could make decisions on Chuck’s behalf without unnecessary roadblocks. I could list our home, sign documents, manage proceeds, and purchase our new place, signing on his behalf using the DPOA—all without having to petition the courts or prove decision-making authority.

That piece of paper became a quiet but powerful ally during a time filled with uncertainty. I encourage anyone facing a dementia diagnosis with a loved one to make it a priority. In addition, I challenge everyone regardless of age or health status to make these documents a priority, along with your living will and medical power of attorney. You never know when the need for a DPOA may suddenly present itself.

A DPOA is not just about managing a home sale, bank accounts or assets—it is about maintaining dignity, reducing stress, and staying focused on what matters most: caring for your person. I was able to buy and sell a house without him being required to sign a thing.

A New Chapter

Letting go of our long-time home wasn’t easy. It felt like saying goodbye to a version of life that I cherished deeply. So many memories of our children and grandchildren are in that house. But those memories are also in my heart. Selling the house became an act of love and adaptation—choosing what’s best for our new reality rather than clinging to the past. Our 6 kids (that includes our son-in-laws!) and family helped us with the move, and they continue to help take care of us. I am filled, and over flowing, with gratitude for them!

I knew it would be hard for Chuck and so far we are seeing some increased agitation and confusion in this unfamiliar house, but overall he is adapting with help. He remains that solid, stoic guy with killer one-liners.

Our new, smaller, one-level house is a true blessing. The fact that the house remained on the market, until I finally went to see it, is astounding. This home will be easier to manage, is more accessible, and is infinitely more aligned with the simplicity and peace I now crave and prioritize. It is smaller, but it isn’t about square footage—it is about quality of life. A quality of life for both of us. It is exactly the home we need.

Today, with a smaller home, there’s a different kind of peace. Less stuff, less home maintenance, fewer bedrooms and fewer stairs… but also fewer worries. And that’s something no square footage can measure.

If you’re on this journey, know this: change isn't easy, but it can be healing. Making big changes due to an illness can have positive outcomes. Being prepared—legally, emotionally, and practically—makes all the difference.