By June Price
Q: How do I arrange for help when traveling? Are there special issues to bring up? How much do you pay? Do you sleep in the same room? Is a contract required?
 June Price
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A: This is a great question but one with myriad answers. Here are some considerations before beginning your search for a travel companion:
Destination. It's clearly easier to find someone to accompany you on a Caribbean cruise, a weekend in Paris, or a trip to Disney World than if you were attending a conference on pond scum in Mayville, Utah.
Transportation. Are you providing first-class air travel, or will you expect your companion to drive your 1982 VW from Maine to Montana in January?
Purpose. What type of trip are you taking--a weekend in Las Vegas, or a three-week wilderness trek? Each will attract a different kind of person.
Duration. How long will you be gone: a weekend, a month? The longer the stay, the harder to find someone.
Personal care. Do you just need limited morning and night care or do you require help 24/7? Do you primarily need strong arms to lift you or an RN to do vent care? Does your companion need to assist you during the night or are they free to party till dawn when you retire? Are they on their own during the day or must they take notes for you at the pond scum lecture?
Contracts are the best way to spell out every last detail of needs and responsibilities but are seldom legally binding. Detail where you will go, the duration, mode of transportation, lodging arrangements (here is where you'd state whether or not you'd share a room), extent of job duties, work schedule, free time, expenses you will cover, expenses they must cover, and so on.
Don't assume anything. If you both mutually agree to see a movie while you're on the trip, who pays for your companion's ticket or the snack afterward? There are no right and wrong arrangements, just poorly understood ones.
As for cost, each type of trip and each set of needs will dictate what you offer to pay in dollars and perks. In some cases, a "free trip" is payment enough (such as that Caribbean cruise!). In other instances, it may be necessary to hire multiple companions--or even nurses--and to provide full expenses as well as an hourly wage.
EDITOR'S NOTE: See the upcoming June issue of New Mobility for a feature on flying solo with a power chair and hiring attendants locally at your destination.
Q: I need assistance in taking my medications, but I resent when my workers ask what pills I'm taking and why! It's none of their business, but they argue it is their business! Who's right?
A: You're both right. You certainly have a right to privacy; but when you hire someone to help you, you relinquish some of those rights, the degree of which depends on whom you hire.
If you contract with an agency for personal care or nursing assistance, a case manager will evaluate your needs, including medications taken, and pass on this information to the nurse or home health aide assigned to your case. Clearly, "privacy" becomes a mute point in most of these cases. With medication, note that home health aides are permitted to assist the client in taking prescriptions but cannot directly administer them.
Contrarily, privately-hired personal care attendants are given information and instruction by the employer--you. Provide the PCA with as much or as little information as you wish, but keep in mind they are there to work with you, not against, you. This doesn't mean you need to say that you take Prozac because of your suicide attempt. "It helps stabilize my moods," is a sufficient explanation. Describe other medications similarly: "this one reduces my spasms," "this one helps with my bowels," etc. No need for too much detail.
It is critical, however, that complete medical information be available in the event of an emergency. Develop a detailed list of your medical information, including allergies, doctor's name/address/phone, and prescriptions/dosages/frequencies. Place two copies in a clear, plastic holder (the type used in three-ring binders). Include a cover sheet with emergency contacts. Post the packet in a readily accessible place (e.g. inside cupboard door, behind bedroom door, etc.). Instruct your PCAs that these are your emergency contacts as well as medical information to be given to emergency response personnel (EMT, paramedic, ambulance staff) and the hospital, if you are unable to provide instruction. I've never had a PCA look inside my packet, yet I'm comforted in knowing the information is there if an emergency should arise.
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