Story by Mary Jacobs in the Dallas Morning News Senior Living section.
As head of the Houston chapter of the Alzheimer’s Association, Richard Elbein thought he knew all of the pitfalls of traveling with a person with memory loss. For a trip last summer with his aunt, Blossom Brooks, who has dementia, he chose a cruise along the Rhine on a riverboat, a relatively small and self-contained environment.
“I thought I had thought of everything,” Elbein said. “But I hadn’t.”
When the boat was docked in a small town in Germany, he returned from a short outing to discover that Brooks, who’d been napping earlier, had left the boat and taken a bus into town — alone. Thankfully, he located his aunt within a few hours.
As Elbein’s story shows, vacations are almost never carefree for those traveling with a loved one with Alzheimer’s disease or another form of dementia.
“You can’t always anticipate how a person with dementia will respond to a traveling situation,” said Debra Adams of the Dallas chapter of the Alzheimer’s Association.
Unfamiliar surroundings can trigger behaviors such as agitation or aggression. The possibility that the person could wander and get lost is a constant worry. And travel often involves situations where “people are moving you along,” Adams said, and when you add a person who’s having trouble processing it all, problems can arise.
For some people in later-stage dementia, travel might be out of the question. People with dementia tend to cope best when following a routine in familiar surroundings; travel disrupts both. But for those who are in earlier-stage dementia, travel may be doable if you plan ahead, enlist help and allow plenty of extra time.
Expect the unexpected
An estimated 6 out of 10 people with Alzheimer’s or another form of dementia will eventually wander, and the risk is highest when the person is in unfamiliar surroundings.
Even a person who’s still functioning fairly well in his or her usual setting can get lost on the road, says Mary Ann Childs of Garland. Although she had her suspicions, she wasn’t clear that her husband Ed, 79, even had a problem until a trip to Arkansas in 2013.
When their car had a flat, just a few blocks away from the hotel, she continued on foot while Ed stayed with the car. But once the tire was fixed, he called her when he couldn’t figure out how to find his way to the motel.
The next morning, she found him on the floor of the motel bathroom, unable to stand up. He wasn’t injured or ill. “He just couldn’t focus enough to figure out how to get up and out of the bathroom,” Childs said. Finally, she had him crawl into the bedroom and helped him up. Her suspicions were later confirmed: Ed had Alzheimer’s. Now he lives in Abba Care Assisted Living in Garland.
“Traveling is a real question mark for me,” she said. “You just can’t leave him alone. He needs to be in familiar places.”
Fred Reeves and his wife, Doris, 75, who has Alzheimer’s, live at Belmont Village Senior Living in Dallas, but they’re still able to travel for weekend trips to family events, such as funerals and weddings. There have been some tough moments, however.
“If she gets out of sorts, she gets pretty hostile,” he said. “It’s part of her disease. You have to manage that.”
Reeves’ advice: “Avoid situations where you have a rigid time frame.” For a recent funeral, for example, he took Doris along during visiting hours, but not to the funeral service itself, which followed a set schedule.
Offering something to occupy the person will help too. On road trips, they sometimes bring their schnauzer, who sits on Doris’ lap in the car, and that keeps her soothed and happy.
Bathroom visits are another key issue. People with dementia might need assistance, which is problematic when Reeves’ wife needs to visit the ladies’ room. On the roads they travel often, he knows where the best family restrooms are located.
“And the fewer stops you have to make, the better off you are,” he said.
The special precautions begin even before the trip, says Marilyn Kowalski, who cares for her husband, Ted, who has Alzheimer’s.
He packs his own bag, but she needs to check to make sure he’s got everything. When the couple travels from their home in Houston to visit family in Denver and New York, she always makes sure the itinerary includes time for rest, because people with dementia can tire easily.
“I make sure that, sometime during the day, we have time to rest and recharge,” she said.
When Chris Henger traveled with her father-in-law, who has since died of Alzheimer’s, they missed their plane, more than once, due to holdups in airport security lines.
“He was intimidated by the TSA officers,” she said. “He was a veteran, and the uniforms, in his mind, reflected an area of war to him.” Even when she explained his condition, TSA officers often didn’t understand and chalked up his aggressive behavior to him being “a very cantankerous old man,” said Henger, who is executive director of Oxford Glen, a memory care community in Sachse.
Monica Moreno is director of early stage initiatives of the Alzheimer’s Association’s national office in Chicago. She books travel for people with early-stage disease, who speak at the organization’s educational programs. Moreno says it’s important to think carefully about each step of the journey.
“The one thing we have found is that every airport and every airline is different,” she said. “That puts the burden on the traveler to understand what the airport or airline offers. And you’re never guaranteed things will go as you anticipate.”
She advises taking advantage of airlines’ meet-and-greet services, where an airline staff person will meet the traveler at the gate and accompany him or her to a connection or to baggage claim. That’s absolutely essential for a person with dementia traveling alone, and helpful even when there’s a traveling companion, Moreno said.
“They can provide a cart, they help you find your way, and it’s one less thing the caregiver has to worry about,” Moreno said. Book a meet-and-greet through a travel agent or through the airline (but not online). This service is usually free, but Moreno advises travelers to ask and to reconfirm on the day of travel.
Moreno also suggests bringing a letter from the person’s doctor explaining his or her condition, and showing that to TSA agents at the security line. Tell the TSA agent that you need to stay with the person, so that you aren’t directed to separate lines. She also suggests that the caregiver should go through the line first, ahead of the person with dementia, so that he or she doesn’t have an opportunity to wander off once inside the gate area.
Henger suggests consulting a physician about the option of medicating the person before a trip to help calm him or her. She added that some home-care agencies provide travel companions who are experienced in accompanying and helping people in this situation. It’s expensive, and you’ll have to buy a separate ticket for the caregiver.
All the experts agree that, since most forms of dementia are progressive, likely there will come a time when travel is no longer an option for those with dementia.
“On an airplane, a person with dementia may decide he wants to get up and go out the door, and doesn’t understand why he can’t do it,” Adams said. “It can just become impossible.”
But when travel is doable, Elbein believes it’s worth the effort. He plans to travel again with his aunt this summer, on a cruise on the Danube. She lived in Germany after World War II, and with her long-term memory intact, she remembers those days and still speaks four languages fluently, including German.
But this time he says he’ll be sure to inform the boat’s crew that she has dementia and should not leave the boat by herself, something he didn’t do last year.
“I thought I was being kind,” he said. “That was a big mistake.”
Mary Jacobs is a freelance writer who lives in Plano.
TIPS FOR A SAFER TRIP
Take precautions in the event the person wanders. Consider enrolling in MedicAlert + Alzheimer’s Association’s Safe Return, which provides an ID bracelet with an 800 number, where operators can help reconnect you with a lost loved one.
Keep a bag with essentials on hand at all times: medications, travel itinerary, a change of clothes, water, snacks and activities.
Travel early in the day or when the person tends to function best. That’s especially key for those who tend to exhibit sundowning — periods of confusion or agitation in the late afternoon.
Keep the itinerary simple and don’t pack too much into a day. Choose nonstop flights, rather than connections, if possible.
Inform hotel staff and others who might need to understand the person’s situation.
Bring this number: 1-800-272-3900 is the Alzheimer’s Association Helpline, which is staffed around the clock with people who can advise you on how to plan travel and handle problem situations.
SOURCE: The Alzheimer’s Association