Whether traveling for business or pleasure, I always have to bring along a caregiver or sometimes two, depending on the length of the trip.
How I choose and work with my personal care attendant is every bit as important as what I pack, where I stay, and whom I visit—maybe more important, because when other things go wrong, then I really need my personal care attendant to come through for me!
In my experience, traveling together transforms a caregiver into something more. She becomes a fellow adventurer, and an ally, as well as an aide. Traveling inevitably involves new experiences, a few challenges, and occasional problems. I neither expect nor want my personal care attendant to take over and solve all the problems that we encounter, but it helps to have someone who is supportive and can keep functioning well in difficult situations.
Over the years, I've learned a few strategies for traveling with caregivers. To other people with disabilities planning a journey and needing personal assistance, I offer the following tips:
1. Select carefully from among the caregivers who are available and willing to accompany you. You should choose someone you know well and trust. Ask yourself whether the personal care attendant has, at a minimum, all the necessary skills and enough energy to meet your personal assistance needs throughout the trip.
Does the personal care attendant have some travel experience, or at least a sense of adventure? Does he or she handle stressful situations appropriately? (Travel almost always involves some stressful situations.) Also think about whether you and this person can be compatible and comfortable spending a lot of time together.
2. Budget for all costs involved in bringing a personal care attendant. If you're flying, you will need air fare for your caregiver as well as yourself. Decide how you will handle meals, transportation, and other incidental expenses. I usually pay all of my caregiver’s necessary expenses during a trip. However, if your personal care attendant has a lot of time off during the day, it may be reasonable to ask him or her to pay for food and transportation while not with you.
A word about wages: If you will need your personal care attendant to work longer hours on the road, over and above your typical schedule at home, then this will likely involve higher wages. Make sure you’re able to cover these extra costs, or that your personal care attendant will accept what you can offer. (Depending on your destination, the attractiveness of the trip itself can help to offset a lower pay rate.)
If you are traveling for work, negotiate with your employer or client organization to include caregiver expenses, including wages.
3. Negotiate the terms of your arrangement with your travel caregiver very specifically. Make sure that you both understand and agree to expectations about the hours to be worked, time off, and compensation.
4. Prepare yourself as well as you can for the journey. If you take responsibility for your travel itinerary, reservations, schedules, directions from place to place, keeping track of expenses, and other details, your caregiver can devote her or his time and energy to the tasks you can't do: your personal care, unpacking, and so on. In other words, don’t put your personal care attendant in the position of scrambling to sort out details that you've failed to think about.
5. Adapt to the different conditions of new environments, and help your personal care attendant adapt as well. Remember that you may not have the same kind of accessibility and adaptive equipment as you have at home. You may be sleeping on a bed that is higher or lower than your own bed, and this can complicate transfers. Your caregiver may have to transfer you in tight spaces, such as airplane aisles or narrow bathroom stalls, and may have to configure your personal care supplies differently in a hotel room or host’s house.
Whatever the challenges, communicate clearly with your personal care attendant about them, and think together creatively about how to minimize the difficulties.
6. Communicate with your caregiver throughout the trip, checking in regularly to make sure you are both satisfied with how things are going. If you have concerns, raise them frankly but diplomatically, emphasizing solutions rather than complaints.
For example, don't say, "Why do you always have to order the most expensive item on the menu when I'm paying?” Instead, say, "I'm concerned about going over my food budget for this trip. Could we agree on an upper limit amount for each meal?”
Likewise, ask your personal care attendant whether he or she is enjoying the trip, comfortable, and getting enough rest.
7. Resolve any problems as satisfactorily as possible. If major issues arise that cannot be addressed to both parties’ satisfaction, try to reach some agreement that will work just for the duration of the trip. Unless the problem puts you at risk, find a temporary resolution that you can live with for now, then wait until after the trip to take other action. A hotel room 2,000 miles from home is not the best place to part company with your PCA!
8. Arrange breaks, when possible, in your caregiver’s work duties. Be realistic about this, assessing your own needs, and try to make and stick to an advance agreement about time off. If you're able to manage without assistance during part of the day, give your PCA those specific hours to rest or sightsee without you.
Don't assume that the personal care attendant who is traveling with you is on the job 24 hours a day, unless you truly require that much care. Even then, try to arrange for a couple of hours a day at least of time off, while you attend meetings, visit friends, watch TV or read a book.
9. Share at least some of the pleasures and rewards of travel with your caregiver. When appropriate, you might invite her or him to attend functions, go sightseeing, or take part in your more interesting activities.
Also, if you take photos during your trip, consider ordering a set of prints to give to your attendant as a token of appreciation and a lasting souvenir. This can help your personal care attendant to remember the good times and consider the possibility of traveling with you again in the future.
See Related Articles
For more information about traveling with your caregiver, see Can Personal Care Attendants Fly Free?
If your partner is also your caregiver, see Preserving Intimacy: When a Partner Performs Your Personal Caregiving Needs.
