In late October 2026, Stanford and Brain Support Network co-hosted a virtual caregiver meeting on traveling with a loved one who has Parkinson’s disease (PD), Lewy body dementia (LBD), cognitive changes, or mobility issues. Jeanne M., who cared for her husband Drew through Lewy body dementia, opened with three lessons she learned from traveling with him. Caregivers then shared their own tips, stories, and hard-won lessons, and asked each other questions, mostly about coping with bladder incontinence when away from home. Participants included caregivers to those with PD, LBD, and other atypical parkinsonism conditions, who are members of the Stanford or Brain Support Network caregiver groups.
Jeanne’s three lessons are:
Make the experience meaningful, but realistic. Focus on experiences that create special memories, like a “bucket list” of moments that matter to your family, fitted to what your loved one can realistically do. LBD is unpredictable and can increase confusion in new environments, so plans may need to change in an instant. Let go of rigid expectations, and focus on what your loved one can handle in the moment. Remember that joy can come from small victories.
Plan meticulously, but leave room for patience. Preparation is everything. Think through medication schedules, dietary needs, comfort items, possible triggers, and how you will respond to them. No plan can remove all unpredictability, though. Success often means meeting your loved one where they are, emotionally and physically. It means staying calm in the chaos and changing course when the unexpected happens.
Don’t be afraid to ask for help. Caregiving is demanding, and travel multiplies those demands. Lean on someone who knows your loved one and understands their care needs. Even an hour or two of help lets you step back, reset, and return with renewed patience and energy. Asking for help isn’t a sign of weakness. It’s one of the strongest, most loving things a caregiver can do.
Here are some other key takeaways:
Short outings still count. When big trips are no longer possible, day outings of two to three hours can still be meaningful. One caregiver takes her husband, who has PD, into nature or to visit close friends who understand his challenges. She stops often on the road so he can stretch, and she plans ahead for food, toileting, and equipment.
It’s okay to scale back. Outings that once worked may stop working as the disease progresses. Several caregivers reached a point where travel no longer suited their loved one, and they switched to short car rides or having visitors come to them. One caregiver realized that a trip back to a favorite restaurant was really about her own wish to relive a good time. Asking “What’s in this for them? Is this still working for them?” can help guide these decisions.
Expect new behaviors in unfamiliar places. Being away from home can bring on confusion or behaviors that never happen at home, such as wandering at night. Plan for extra supervision.
Pack a go-bag. One caregiver keeps a backpack with a handheld urinal, extra pull-ups, wet wipes, an adaptive spoon, a plate rim, straws, a first-aid kit, and easy-to-eat snacks. Others added a change of clothes, small garbage bags, and thickening agents for liquids. For overnight stays, they suggested waterproof bed pads. Many found that strangers, staff, and flight attendants were more understanding than they expected.
Use travel assistance programs. TSA Cares can arrange extra help at airport security if you contact it at least 72 hours ahead. The Hidden Disabilities Sunflower lanyard signals to trained staff that a traveler may need more time and support. Tour groups and travel advisors can also help with big trips.
I really encourage you to read the detailed notes for practical tips shared.
Resources
The online gathering was recorded and is posted here
You can discuss these issues further at a caregiver support group meeting near you. If you live in Northern or Central California, check out these caregiver support groups:
Keep reading for detailed notes,
— Elizabeth
Traveling with Someone with Parkinson’s, Lewy Body Dementia, Cognitive Issues, etc.
Presenter: Jeanne M., former caregiver to her husband, Drew, who had Lewy body dementia
Moderators: Robin Riddle, Stanford and Brain Support Network; and Denise Dagan, Stanford
Co-hosted by: Stanford Parkinson’s Community Outreach (med.stanford.edu/parkinsons) and Brain Support Network (brainsupportnetwork.org)
Meeting Date: October 25, 2026
Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
JEANNE’S THREE LESSONS
Jeanne described traveling as Drew’s caregiver as overwhelming at times and a true test of patience, love, and resilience. It was also deeply meaningful and, in ways she did not expect, rewarding. Traveling as a caregiver is not about perfect trips or picture-perfect moments. It is about creating opportunities for joy and connection amid the challenges. Whether it’s a weekend getaway, a family event, or a long-awaited vacation, caregivers share a goal: making room for moments to treasure while facing the hard realities of the disease. The question is how to balance meaningful experiences with the limits of such a complex illness. Jeanne said that balance isn’t easy, but it is possible.
Lesson 1: Make the experience meaningful, but realistic.
Once it was clear that their time together was precious, Jeanne’s family focused on experiences that would create special memories. They didn’t aim for extravagance. Instead, they made a “bucket list” fitted to what Drew could realistically do. They took a road trip to Reno to visit their son and daughter-in-law, went to a Beach Boys concert, and spent a week in Cabo with loved ones. These moments were not just for Drew. They were for the whole family, a chance to come together, laugh, and make memories. They are now some of the family’s most cherished memories, and Jeanne has no regrets about prioritizing them.
Still, LBD is unpredictable. It disrupts daily routines and comfort zones and can increase confusion in new environments. Travel requires flexibility, compassion, and accepting that plans may change in an instant. At the concert, Drew seemed to enjoy himself but could no longer remember the lyrics to songs he once knew by heart. Jeanne called this a bittersweet reminder of what the disease had taken. Her advice is to let go of rigid expectations, focus on what your loved one can handle in the moment, and remember that joy can come from small victories. Being flexible lets the family not only get through these trips but truly appreciate them.
Lesson 2: Plan meticulously, but leave room for patience.
Preparation is everything: medication schedules, dietary needs, and comfort items close at hand. The more thought you put into planning, the smoother the journey. Before trips, Jeanne rehearsed possible triggers, things that might upset Drew, and her responses to them. Her goal was to keep stress low for both of them. Still, no plan removes all unpredictability. Jeanne said caregivers are navigating an ever-changing map shaped by the mood swings, confusion, and physical challenges of LBD. In Cabo, Drew suddenly demanded to drive home, a moment Jeanne found both heart-wrenching and deeply stressful. Patience matters as much as planning. Success often means meeting your loved one where they are, emotionally and physically, rather than where you hoped they would be that day. That means staying calm in the chaos and changing course when the unexpected happens. It also means constantly reading your loved one’s emotions and comfort level, and sometimes letting go of your own expectations.
Lesson 3: Don’t be afraid to ask for help.
Caregiving is already emotionally and physically demanding, and travel multiplies those demands. Juggling it alone can be overwhelming. Jeanne said asking for help does not come naturally to her, but she would not have attempted these trips without her daughter Beth. Beth knew her dad and his care needs well, so she could help with basic care and step in while Jeanne took time to breathe and recharge. Even with that support, the ultimate responsibility rested with Jeanne as primary caregiver. Knowing she had help, even for an hour or two, gave her much-needed relief and let her come back with renewed patience and energy. In Cabo, she spent one of those breaks painting a hat. Jeanne said asking for help is not a weakness but one of the strongest, most loving things a caregiver can do.
Closing remarks from Jeanne
Traveling as a caregiver for someone with LBD is never easy, but it can be incredibly worthwhile. She admitted that mid-trip she sometimes wondered why she was doing it, but she treasures those memories now. Her advice was to aim for meaningful but realistic experiences, plan carefully while staying patient and adaptable, and lean on others for help. These moments, however challenging, can create lasting memories for both your loved one and your family. When you look back, she said, you’ll be grateful for the effort, time, and love you gave to make them happen.
Questions for Jeanne
- Was Drew upset about forgetting the lyrics? Jeanne didn’t think so. She and her daughter were the ones who were upset, and they never mentioned it to him. It was hard to tell how much Drew enjoyed outings. She estimated they were “maybe 60% for us, 40% for him,” but the family believed it was the right thing to do. After Cabo, Drew said he had a wonderful time.
- How did she handle the request to drive home? The episode came with late-day confusion. Drew went down the hall to find other family members to help him. Jeanne usually didn’t try to reason with him. Instead, she “got into his world.” With a little humor, she told him that driving home would get them there later than flying home at the end of the trip. He agreed, and by the next morning it had passed.
- Restrooms: Jeanne often walked into the men’s room to help Drew and had no hesitation about it. Daughter Beth described one restaurant outing where Jeanne had to take Drew into the restroom after a bad accident.
- Did the loud concert bother him? No. The hardest part was getting Drew to his seat; staff helped transport him to the entrance. He was in the early stages then, so climbing to the seats was more manageable.
DECIDING WHETHER AND HOW TO TRAVEL
- One caregiver’s 83-year-old husband has parkinsonism and becomes very disoriented away from home. He often enjoys himself once out, but sometimes says afterward he would rather have stayed home. She asked whether trips are still worth the stress, especially a five-hour drive and motel stay for Thanksgiving. Her two adult children will be there to help.
Jeanne said caregivers usually know when they can no longer manage. She added that adult children can step up and help, and that helping can leave them without regrets.
The moderator suggested building in a daily break while family members stay with the loved one.
- A caregiver (Nancy F.) whose mother has LBD used to take her to places and events. It was stressful, but it worked. As time went on, she began asking herself, “What’s in this for her (mother)? Is this working for her (mother)?” For Mother’s Day, she brought her mother, in her wheelchair, back to Mel’s diner where they had enjoyed going. She realized afterward that the outing was really about her own wish to revisit something that had worked before. It no longer worked for her mother. The restaurant’s music and noise were distracting. Her mother was also served food on a flat plate, and food slid around on it. At home she had long since switched her mother to bowls, and she hadn’t thought about asking for a bowl or bringing a bowl ahead of time. She decided they wouldn’t do that anymore. Now her mother goes only on short car rides with her, and people come to visit them instead. Even after a short car ride, her mother sleeps more the next day to recover from the extra processing. Her advice was to err on the side of whether the outing is working for your loved one. These outings are stressful not just for the caregiver but for the loved one’s whole system.
- A caregiver whose husband has LBD had two bucket-list trips, an African safari and a Beatles tour, delayed by COVID. By the time they went, he had trouble walking and communicating. They went anyway, in tour groups, one month apart. People were extremely helpful, helping him on and off buses. On the safari, the driver let him ride up front because he couldn’t climb into the back. Later, flying with a wheelchair became too stressful for him, and their last trip was in March 2026. She said she has made peace with that and has no regrets.
- A caregiver (Marcia C.) whose husband has PD takes him on day outings of two to three hours, often in nature or at the home of close friends who understand his challenges. Sitting by the water at a yacht harbor recently, he told her, “I’m going to remember this for a long time.” Socialization remains important for both caregiver and loved one.
- One caregiver traveled with a sister-in-law who has Alzheimer’s disease. During the night, the sister-in-law left the hotel room and had to be found; she said she couldn’t find the bathroom. She had never done this at home. Being out of familiar surroundings can quickly bring on new behaviors, so plan for supervision at night.
Car Trips and Day Outings
- Stop every half hour to hour so your loved one can get out, stand, and stretch. This prevents stiffness on arrival. (Marcia’s tip)
- Keep a backpack with a handheld urinal, extra pull-ups, wet wipes, an adaptive spoon, a rim that attaches to a plate, straws, and a first-aid kit for wound care. A handheld urinal is easier than aiming at a toilet, including in a public restroom stall or outhouse. (Marcia’s tip)
- Bring easy-to-eat finger foods and snacks, such as a PowerBar, cut-up apple, crackers, or a protein drink. Hosts may not have food that’s easy to eat.
- Bring both the walker and a transport wheelchair (a lightweight wheelchair pushed by a companion) in the car, in case the wheelchair is needed. Also bring a cushion for chairs with arms; the added height makes standing up easier.
Air Travel
- TSA Cares: Call at least 72 hours before your flight to arrange extra help through security. Denise heard that some travelers were met at the curb, helped with luggage, and taken through a dedicated screening lane. Services vary by airport. Denise also suggested TSA PreCheck or CLEAR to shorten security lines.
Editor’s Note: TSA Cares (help through airport security for travelers with disabilities or medical conditions), call 855-787-2227 or submit the online form at least 72 hours before travel. tsa.gov
- Hidden Disabilities Sunflower: A green lanyard with a sunflower or a sunflower pin tells airport staff that a traveler has a non-visible disability, such as dementia or other cognitive issues, and may need more time or patience. A caregiver (Helen M.) who couldn’t attend reported that a European airport recognized the program but SFO staff did not on her return, and this was a recent experience. She called SFO to report that the Information Desk was unaware of the program.
Editor’s Note: The sunflowers are free. See hdsunflower.com. SFO launched the program on March 2, 2026. Free lanyards are supposedly available at any SFO Information Desk on the Departures and Arrivals levels, and no proof of disability is required.
- Layovers: Nonstop flights are often recommended. Denise, a former travel agent, noted that a planned layover can sometimes help. Some airport-area hotels offer day-use rooms, usually at about half the overnight rate, for a nap and a shower.
- Travel advisors: For a big or unfamiliar trip, a travel advisor can handle details and solve problems that come up along the way.
TOILETING AND INCONTINENCE
Restrooms
Robin said she once took her father into men’s rooms but found it uncomfortable with men at the urinals. She switched to ladies’ rooms, where there are stalls. She would announce, “I’m coming in with my dad, he needs a little extra help,” and no one ever complained.
Overnight stays
Nighttime incontinence makes many caregivers hesitate to travel.
- In Cabo, Jeanne brought disposable pads for the bed, but the bed was soaked every night. She asked the hotel for a plastic bed cover, but staff didn’t understand the request, and she tipped housekeeping generously.
- Bring a waterproof bed pad, or buy one and ship it ahead to the friends you’ll stay with.
- A caregiver whose husband had months of watery diarrhea stopped staying with family and always books a hotel. She brings a washable, twin-width, full-length bed pad and layers disposable pads on top. She also packs small garbage bags for soiled briefs, disinfecting wipes, body wipes, and pre-soaped washable washcloths. Large plastic cover pants over adult briefs, especially overnight, help prevent leaks; she buys them inexpensively online.
- A caregiver whose mother is incontinent only at night recommended booster pads. These are made to absorb a lot and let excess pass through to the brief underneath. A regular pad has a waterproof backing, so liquid runs over the sides instead. She found booster pads online and at CVS. She said they reduced sheet-washing from every other night to every three or four nights.
- One caregiver (Kaly T.) recommended Abena brand pull-ups. She uses them on outings and overnight for her brother, and they last through about 10 hours of sleep without leaks. She describes these “game changers.”
Condom catheters
A condom catheter, or external catheter, is a sheath worn over the penis and connected by tubing to a collection bag. Unlike an indwelling (Foley) catheter, it doesn’t go inside the body.
- One caregiver (Laurel B.) noted that her husband was introduced to a condom catheter during a hospital stay. He now sleeps through the night using one, with a bag prescribed by his doctor. They haven’t yet found a way to use it successfully during the day.
- Another caregiver (Robin R.) used a condom catheter for her father during the day and at night, including on two trips to Acapulco. By day she used a leg bag strapped under long shorts or trousers. At night she switched to a larger drainage bag. On the plane she used pull-ups and extra pads. She put a pad under herself too, to make it feel like a family thing rather than just about him. The condom catheter worked well for a couple of years, until it stopped working.
- A caregiver planning to try a condom catheter is getting a prescription through her husband’s urologist.
Fecal incontinence
One caregiver described two episodes. One happened at a hotel, where the shower was close by. The other happened at a large store, where she bought gloves, clothing, shoes, and paper towels, then spent about 90 minutes cleaning up her father in the restroom.
Always bring extra supplies when leaving home.
People are more understanding than you might think. When a caregiver’s husband wet himself on an overseas flight, the flight attendants mainly wanted to know whether he was comfortable. They said the ground crew would take care of the seat. She had a change of pants with her.
Caregivers agreed these incidents are often harder on the caregiver than on the loved one.
EATING, SWALLOWING, AND CHOKING
- Learn the Heimlich maneuver.
- Frequent coughing at restaurants can bother other diners. One caregiver let servers know the family was used to the coughing and knew how to handle it, and tipped well.
- Bring a thickening agent to restaurants; clear liquids are the hardest to swallow. Single-serve thickener packets, such as SimplyThick, fit in a purse. You can also carry a zip-top bag of powdered thickener.
- Ask the kitchen to cut food into small pieces and serve it in a bowl, or bring a plate rim. Bring an adaptive spoon or ask for a spoon. One caregiver’s husband had a serious choking episode at a restaurant. A server performed the Heimlich maneuver, and paramedics were called. She said the extra preparation ahead of time is worth it.
- A caregiver whose mother coughed after drinking water through a straw learned two things. Drinking with the chin tucked down makes swallowing easier. Limiting sips to about three before pausing helps avoid aspiration, which is liquid entering the airway.
Choking rescue devices
Participants mentioned portable manual suction devices such as LifeVac (lifevac.net). A support group member reported that one saved her husband’s life.
Editor’s Note: These devices are intended only as a backup; it does not replace calling 911 or performing standard choking rescue protocols: the FDA cleared LifeVac for use when standard choking rescue protocols such as the Heimlich maneuver have failed. The American Heart Association and American Red Cross do not include these devices in their choking guidelines. Talk with your healthcare provider before buying one.
MOBILITY AND EQUIPMENT
Denise learned at a recent travel webinar about lightweight transport wheelchairs that fold quickly. Some have hand brakes on the handles, so they work as both a wheelchair and a walker. One brand mentioned was Rollz, which she said costs over $1,000. She found lower-cost options online for about $300 by searching “transport wheelchair with handbrakes.”
One caregiver uses a Medline transport wheelchair, about $100, that folds small enough to fit in an SUV alongside a U-Step walker. A physical therapist showed her how to bring the wheelchair along behind her husband while he walks. That way she can still hold his gait belt, a sturdy belt worn around the waist for steadying, and bring the walker along.
- Equipment loan programs may have transport wheelchairs available.
- A travel-size bed assist rail, an inverted U-shaped handle that slides under the mattress, can be taken apart and packed in a suitcase.
- Bed and chair alarms can alert a caregiver when a loved one gets up.