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.
My first trip as a caregiver
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 three 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.
My travel checklist
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.
Pre-plan as much as possible
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:
- How long will the trip be?
- Who else is traveling with us?
- What support do we require at our final destination?
- What do we need to bring with us?
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.
Speak to people!
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.
Ensure accommodation is accessible
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.