The Rewards of Risk: Traveling With Chronic Conditions

by: Jonathan Scott

When Norman received the call from his granddaughter in San Francisco, he took the good news with mixed feelings. He and his wife, Elaine, had been eagerly anticipating the birth of their first great-grandchild, and Norman knew that Elaine was determined to fly out to see the baby. He knew that visiting the giant sequoia forest in nearby Yosemite was on Elaine’s bucket list, something they had put off for years, waiting for the right time. But Norman was painfully aware that Elaine was struggling with forgetfulness, possibly in the early stage of Alzheimer’s Disease.

The two of them sat on their deck after dinner that evening. “You can’t stop me,” Elaine said, knowing the subject was on both their minds. “I’ll go without you if I have to.”

“You won’t have to,” Norman reassured her. “We’ll go together.”

She patted his hand. “It’ll be fun. Just like the old days.”

Norman and Elaine had occasionally traveled in their nearly 50 years of marriage, but they had postponed some of their dream destinations until retirement. Now they had the time and means, but health issues as mild as Norman’s sleep apnea and as serious as Elaine’s dementia, kept them cautious.

Intent on having them see her baby, their granddaughter in San Francisco got to work online. She discovered that

not only are seniors traveling more, they are traveling despite chronic conditions, 

and the travel field is full of advice and accommodation.

First on the to-do list she gave Norman was to buy Elaine her own cell phone. He put on an app which would allow him to know Elaine’s location at any time. The two of them also loaded it with Elaine’s favorite music, so she could stick in her earphones and close her eyes if she started to feel agitated.

Norman also decided to book them into a hotel room rather than impose on the family. It would be quieter and give them a chance to keep to their own schedule. Before leaving for the airport—allowing them the extra time recommended—Norman stuffed Elaine’s favorite pillow and throw blanket into one of the suitcases. That had been suggested to bring a touch of the familiar to a new environment. But the last thing on his list would prove to be the most challenging: convincing Elaine to wear a bracelet marked with her name, his phone number, and identifying her as someone with memory issues. 

Not all medical conditions are as challenging for travelers as dementia. The CPCP device that Norman used for his sleep apnea was small enough to take with him, and a phone call was all it took for his granddaughter to arrange for an extension cord and some distilled water. Under the Americans with Disabilities Act, a CPCP device doesn’t count as a carry-on item, so Norman took it through security rather than risk having it wind up at the wrong destination in his checked luggage. He didn’t need documentation from his doctor regarding the device, but found out that TSA suggested having it if possible.

Of course, Norman and Elaine took all their prescription medications with them, but they were in pill form and weren’t much of an issue at security. TSA does allow an exception for liquid medications from their 3.4 ounce carry-on limit, but the meds need to be in their original containers. TSA expects people to proactively declare these items as well as any ice packs or accessories. It also expects people to repack all these things after inspection.

Fortunately, neither Norman nor Elaine suffered from diabetes. Traveling with insulin products like Humulin or Novolin can, however, create an issue. Normally, those products are stable at room temperature for a month, but left inside a parked car in the sun, they can be damaged. A bit of planning, a cooler, and an ice pack (not touching the meds) can solve that problem. And there’s no need to be concerned about the X-ray machine. Medications don’t seem to be affected by a small amount of radiation.

Iris had been a widow for nearly eighteen years when she received a call from a family member. For her, it wasn’t the good news of a new baby in the family. Her sister in Chicago was moving into hospice care. Not wanting to fly wouldn’t be an excuse for this situation. She would have to go—despite being hard of hearing.

Iris didn’t have the advantage of a tech-savvy granddaughter to reassure her with travel tips. She tried calling the travel agent she used when she and her late husband went on vacations, but the familiar person had retired. Fortunately, the young lady she spoke to was more than willing to help.

“Do you ever wear a visor,” she asked Iris.

Iris was confused. Even using her special captioned phone, she sometimes misunderstood.

“One thing we’ve found to be helpful is to clip a card to a visor that lets people know right off the bat that you might not be able to hear them. Do you have a smart phone?”

She did, but she didn’t know how to use it. 

“Bring it with you when you come in to pick up the tickets. I can ask the airline for text alerts. We can put your phone on vibrate. That way you won’t have to worry about not being able to hear the announcement if there’s a last minute schedule change when you’re in a noisy terminal.”

When Iris picked up her tickets from the agent, the young lady had already printed out a TSA notification card which she could use at security to let them know she was wearing a hearing aid. As it turned out, the device still triggered an alarm, and she had to go through a pat down. The inconvenience of that was barely balanced out by the flight attendant’s reassurance that Iris didn’t need to turn off her hearing aid when the pilot asked that “all electronic devices be turned off.”

The Chicago hotel where Iris stayed provided her an amplified phone at no extra charge. The gentleman who carried her bags gave her a surprising tip of his own. He saw the card Iris still had clipped to her visor. “Do you wear a hearing aid, ma’am?” he asked. “Don’t put it down next to your room key. It can demagnetize the strip.”

When Neva was traveling with her mother, the assistance personnel at the airport offered the older woman a wheelchair. Neva’s mother refused and protested. “Wheelchairs are for handicapped people.”

“No, Mom,” said Neva. “They are for people who want to get through an airport in a reasonable amount of time.”

Neva Fairchild is the National Aging Initiative Specialist for the American Foundation for the Blind. She is a crusader for seniors traveling despite chronic conditions. 

“It’s important that people learn ways to do the things they care most about—like going to visit family. 

That gives them the tools to do the ordinary things they need to do.

“Many seniors who find themselves with vision impairment don’t identify with terms like blind. But the single most important advice we give is to not be embarrassed. Identify yourself as having a vision impairment right off the bat.”

She recommends people traveling by any means use a white identity cane. “It’s an instant way of letting people know you might need some assistance. And people are generally very solicitous and nice.”

Neva should know. She is visually impaired herself and travels constantly for her work.

For those who aren’t hesitant to embrace new technology, a service called Aira provides glasses mounted with a small camera that transmits live video images to a real person who then can explain to the wearer what is in front of him or her. This can make all the difference in the world if someone needs to read a departures sign, find the right train platform or meet someone in baggage claim. The cost of the service depends on the amount of time in use, but two hours of assistance per month costs only $99.

A free option for the same type of service is available on a smart phone app called Be My Eyes. Currently there are two million volunteers around the world who are on call to “see” through someone’s phone camera and explain it in real time. Other apps, such as Facetime, can also be used in the same way with family or friends, but Be My Eyes volunteers are always available and never feel imposed upon or resentful.

Iris returned to North Carolina grieving the loss of her sister. But she was comforted by the fact she had been there at the hospice center for the end of her sister’s life. She felt proud she had mustered what she called “the gumption” to make the journey alone despite her limitation.

After visiting their granddaughter, Norman and Elaine rented a car and drove to Yosemite where they spent the night at the Big Trees Lodge. The trip wasn’t without problems. Norman admits there were times when he nearly regretted undertaking it. But, back home, he often shows Elaine the photos of her being dwarfed by the ancient sequoias. He feels good about helping her fulfill her dream, despite the challenges. “There can be a great deal of reward,” he says, “just from taking a risk.”

Additional Information

1-800-778-483The Hotline for Air Travelers With Disabilities is available from 7:00 a.m. to 11:00 p.m. seven days a week. It provides general information to consumers about the rights of air travelers with disabilities and assists air travelers in resolving time-sensitive disability-related issues that need to be addressed in real time. 

Amtrak offers a 10% rail fare discount to adult passengers with a disability, as well as a 10% discount for persons traveling as a companion. Those designated as a companion must be capable of providing the necessary assistance to the passenger with a disability.