It can be daunting to plan a holiday when your loved one lives with a chronic illness. Discover Marc Lawrence's top tips for travelling as a caregiver.
Holidays don't have to be off the table when your loved one lives with a chronic illness. Still, planning and execution can be notoriously tricky - even for experienced caregivers. With the holiday period fast approaching, I'd like to share some valuable lessons I learned when travelling with my wife, J.
J had a stroke a few years ago, leaving her with poor motor control, limited speech, fatigue, and occasional incontinence. After J's stroke, I knew we had to approach any travel carefully.
I decided that starting with short trips was best, and then we'd gradually increase the length of trips over the year. These "practice" holidays would help me understand what support and supplies we'd need.
I'd also be able to gauge how much travel affects J and me emotionally and physically. Over time, the shorter trips helped build up J's stamina. Meanwhile, I learned how to minimise stress levels for both of us. The extra efforts were well worth it!
My first holiday as a caregiver
About two years after the stroke, we embarked on our first set of day trips of increasing duration. At first, an hour-long car ride would exhaust J for the rest of the day. However, after several trips and ongoing therapy, she could tolerate journeys that lasted 3-hours or more. Next came some overnight and weekend trips that required much more planning. We had to ensure proper accommodations were available and that we could deal with activities such as toileting and showering.
Last December, we went on a weeklong cross-country trip that required a five-hour flight. This was a giant 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 caregiving travel checklist
Given our experiences of travelling a lot, here are my top tips to prepare for travelling with a loved one living with chronic illness.
1. Pre-plan as much as possible
Every minute you spend pre-planning your trip, the more pleasurable and affordable your experience.
Checklists are your friend! Consider your destination carefully and ask yourself:
- How long will the trip be?
- Who else is travelling with us?
- What support do we need at our final destination?
- What do we need to bring with us?
For one of our recent trips, we were staying near family. I ordered the disposable items I knew we needed and shipped them to our destination in advance, saving on my having to carry them.
If a travel agent or family member plans the trip for you, make sure they understand your requirements. Tell them everything you'll need for accessibility, medical support, and general assistance.
2. Ask for what you need over the phone or in person. It’s the quickest way
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 closest major airport about parking arrangements. If you have a disability badge for your car, you can park in short-term bays and only have to pay the long-term fees!
3. Ensure accommodation is accessible and suits your caregiving needs
When your loved one's condition requires special accommodations, making reservations is notoriously tricky. J's wheelchair requirements meant checking and double-checking every part of the trip. This included how to get to the airport, get to the gate, get on the plane, and so on.
Getting accessible hotel accommodations can also be quite a challenge. The term "accessible" often does not have a consistent meaning.
This ambiguity means I don't make reservations online or through global reservation numbers. Calling removes any uncertainty if I need the bathroom to have a roll-in shower and seat.
Even the height of the bed may be an issue. We once stayed in an "accessible" hotel room with a ridiculously high bed. Even a non-disabled person would struggle to get into it.
Investigating restaurants, attractions, or other venues pre-trip will reduce anxiety and save time. Restaurants don't always have accessible entrances or bathrooms. Or, even when they do, the restaurant's layout may mean moving some tables so you can get to your seats.
4. Carry all the necessary documents, medical and otherwise
In today's increasingly digital world, having good old paper as a backup is the wisest course. I suggest printing out boarding passes and carrying copies of prescriptions if possible.
I also carry a list with J's full name, emergency contact information, the names of her medications, and contact info for her medical team. Ensure that you have the appropriate:
- Driver's license
- Disability badge
- Medical insurance cards
- Permissions if you need exceptions for medications or medical devices
5. Prepare for emergencies
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 announcement said we must evacuate the building by taking the stairs, not the lift. I wasn't sure what to do and couldn't contact the front desk during the alarm. Thankfully, an "all-clear" announcement came soon after, and we had no problem.
Afterwards, I asked the front desk what I should have done. Staff advised that the main service lift would still run during a fire alarm. I should use that to evacuate the building if there were future emergencies.
On the plane, I asked a flight attendant what we should do in an emergency. I was advised that the flight attendants were aware of the locations of disabled passengers and were trained in getting them to the exits.
J is petite, so moving her might not have been difficult. Still, I suggest arranging to be sat near an exit. Overexerting yourself in an emergency situation won't help anybody.
6. Consider travelling with an aide, relative, or friend
Travelling is difficult even under the best of circumstances.
Travelling with someone who requires extra support can make things even more complicated. That said, 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 help. My sister joined us on both long trips. She was happy to help with the trip's logistics and looking out for my daughter. Thanks to her, I could even afford an occasional break.
7. Remember, common sense is a valuable tool for caregivers. Don't leave it at home while on holiday!
I always make the people we are visiting aware of J's requirements. Never assume that people will automatically know how to help.
And don't be afraid to be protective of your time. I return to the hotel if I'm ever overwhelmed by certain activities. After all, the well-being 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. Your life is not on hold, and you can still make new memories to treasure forever. Safe Travels!
NPS-IE-NP-00465 August 2022