With the prospect of holiday travel fast approaching, I would like to highlight some of the valuable lessons I’ve learned as a caregiver when traveling with my wife, J. J had a stroke a few years ago which left her with poor motor control, limited speech, fatigue, and occasional incontinency. Although our experiences are specific to her condition, I’m hoping you will be able apply these learnings to your particular situation also.
Our approach to travel was to start slow and short, and take increasingly longer and more arduous trips over the course of a year. These trips helped me to understand what support and supplies we needed and, most importantly, how the trips affected J both emotionally and physically. As with any type of rest and recuperation, the shorter trips helped build up J’s stamina and enabled me to learn how to minimize the level of stress on both of us.
About two years after the stroke, we embarked on our first set of day trips of increasing duration. Initially, an hour-long car ride could exhaust J for the rest of the day. However, after multiple trips along with the ongoing therapy, she was able to tolerate rides that lasted 3-hours or more. Next came some overnight and weekend trips that required significantly more planning to ensure that proper accommodations were available, and that we were equipped to deal with overnight issues such as toileting and showering.
Last December, we went on a weeklong cross-country trip that required a five-hour flight. This was a big leap of faith and tested our stamina and resourcefulness. Finally, after building up our confidence, we were able to take a trip to Hawaii for a week for J’s grandmother’s 100th birthday. This involved a 10 hour non-stop flight and a short connection.
Given our experiences of traveling a lot, here are my top tips to prepare for traveling with a loved one who is living with chronic illness.
Every minute you spend pre-planning your trip before making reservations and confirming your itinerary with friends and family, will be rewarded with a more pleasurable and affordable experience.
Checklists are your friend! Consider your destination carefully and ask yourself:
For one of our recent trips, we were staying near family, so I ordered the disposable items that I knew we needed and shipped them to our destination in advance, which saved on having to carry them. If a travel agent or family member is planning the trip for you, make sure they understand all your requirements for accessibility, medication, mobility, and medical support.
I planned our trips (mostly) on my own and found that phone calls are the best way to understand what facilities and services are available to us. When uncertain, call them! I once called our local major airport and found out that, if you have a state-issued handicapped placard for your car, you can park in short-term parking near the terminal and only have to pay the long-term parking rate.
Making reservations when your loved one’s condition requires special consideration, may be the toughest thing about traveling. In our case, J’s wheelchair requirement necessitated a careful approach to every aspect of the trip. This included how to get to airport, how to get to the gate, how to get on the plane, and so on.
Getting accessible hotel accommodations can also be quite a challenge. The terms “accessible”, and “ADA-compliant” in the US, do not have consistent meanings. This ambiguity has stopped me from making hotel reservations online or through the global reservation numbers. A call directly to the hotel may be necessary to ensure that the “accessible” bathroom definitely does include a roll-in shower and a shower seat.
Even the height of the bed may be an issue. We once stayed in an accessible hotel room where the bed was so high, that even an able-bodied person would struggle to get in it.
Any pre-trip investigation of restaurants, attractions, or other venues that you expect to visit during your trip will also help to reduce anxiety and save time. Restaurants don’t always have accessible entrances or bathrooms, and even when they do, the spacing of their tables may require moving the dining room around in order to get to the table.
In today’s increasingly digital world, having good old paper as a back-up is the wisest course. I suggest printing out boarding passes and carrying copies of prescriptions if possible. I also carry a wallet-sized list containing J’s full name, her emergency contact information, a list of medications, and her medical team’s contact information. Be sure to check that you have the appropriate passports, driver’s license, handicapped placard, medical insurance card, and information for airport security if exceptions are needed for medications or medical devices.
It’s also important to ask the airline or hotel how best to evacuate if an emergency arises. On our first night on the 4th floor of a high-rise hotel, there was a fire alarm. The public announcements said to evacuate the building by taking the stairs and not the elevators. I wasn’t sure what to do and was unable to contact the front desk during the alarm. Thankfully an “all-clear” message was announced soon after and we had no problem. Afterwards I asked the front desk what I should have done, and they advised that the center service elevator would still be running during a fire alarm, and that I should have used that to evacuate the building.
On the plane, I asked a flight attendant what we should do in an emergency and was advised that the flight attendants were aware of the locations of disabled travelers, and were trained in getting them to the exits. J is petite so moving her might not have been difficult, but I would suggest trying to get seating near an exit to minimize the effort.
Traveling is difficult even under the best of circumstances. Traveling with someone who requires special assistance can certainly complicate things, but using common sense and not being afraid to ask for help can soften the blow.
Have someone travel with you if possible – a relative, an aide, or a friend can be of great assistance. My sister joined us on both long trips helping with logistics, looking out for our daughter, and providing me with an occasional break.
I always make sure to make the people we are visiting aware of J’s requirements. Never assume that people will automatically know how to help. Also don’t be afraid to be protective of your time. If I’m ever feeling overwhelmed by certain activities I go back to the hotel. After all, the wellbeing of yourself and your loved one is paramount.
Finally, take time to enjoy yourself. Try to stay in the moment and appreciate the experience. Let others support you. Take advantage of any services and discounts that are available to you. Remind yourself that this is your chance to prove that your life is not on hold and you can still make new memories. Safe Travels!