Make respite care work for your family

These guidelines will help make respite care a positive experience for everyone involved. They’re mostly common sense and courtesy. Your local Lifespan Respite program may also have some suggestions; read all of the program’s information. Ask the program staff if you have questions; that’s their job.

• Plan ahead -- Have all the information the provider will need on hand and ready on short notice. There may be times when you need respite with little advanced notice.
   
  
• Give yourself a break -- Make respite part of your routine. Don’t wait until you’re exhausted. Practice using respite for activities you want to do rather than for things you ought to do.
   
  
• Request respite services in a timely manner -- Apart from emergencies, it usually works best for families to request respite care three to five days in advance. This helps providers and programs to plan respite for all families more effectively.
  
  
• Give early notice of cancellations -- If respite must be cancelled, give 24-hour notice whenever possible.
   
  
• Be prompt in returning -- Return home or pick your family member up at the scheduled time; be sure to call if you are going to be late.
   
  
• Provide emergency contact information -- Leave a number where you can be reached and the name and number of someone who can be called in an emergency. Tell your provider right away of any changes in plan.
   
  
• Provide written medication instructions -- This includes prescription and nonprescription drugs.
   
  
• Encourage questions -- Let providers know up front that you welcome their questions. If there are things that you can’t answer, or that must be kept confidential, say so clearly to the provider.
   
  
• Be consistent -- If there are two parents in the home, or if siblings are giving instructions, everyone must agree on what the provider needs to know and do.
   
  
• Have a backup plan -- You and the provider should be prepared for unexpected events. Suggestions: a neighbor or relative to contact, or provision to take your family member to the provider’s home temporarily.
   
  
• Provide all necessities for longer stays -- This includes changes of clothes, spending money, special food, etc.
   
  
• Meet with prospective providers in advance -- Have a “pre-respite” meeting at your home for the providerto get acquainted and to meet the family members he or she will care for. Discuss family rules and guidelines, and write them down. Do this in front of the person being cared for if appropriate. Allow enough time to explain any special communication or care needs.
   
  
• Confidentiality -- Clearly communicate your wishes regarding confidentiality. By being in your home and caring for your family member, a provider becomes aware of information that some families do not want to be shared. Be certain that your provider is aware of any concerns and expectations you have about private information.
   
  
• Clarify provider expectations and boundaries -- Let the provider know what he or she is expected to do and not do. Discuss whether visitors are allowed, access to food, household appliances, stereos, VCR’s, the telephone, etc.
   
  
• Be clear about “house rules” for the person being cared for -- Discuss the rules at the start of each visit. Give clear instructions regarding bed time and other routines, who is permitted to visit your home, where your child is permitted to play, and any items (like tools or appliances) that are off limits to your child.
   
  
• Reveal any potential safety risks -- Talk about potential behaviors of the person being cared for, as well as physical risks from things like loose steps, faulty play equipment, pets that bite or scratch, and other things that might cause harm to both the care receiver and care provider.
   
  
• Debrief -- Do it right away if possible, or later by phone. Include the person receiving care if possible. Ask for a brief summary of the respite time and activities. Ask if there were any medical or behavioral concerns and the provider’s response to them. Find out if there is anything that you or the provider need to clarify. Don't “grill” the provider, but be alert to possible problems or indications that the provider used questionable judgement.
   
  
• Voice your concerns -- If a provider or respite program staffer does something that is not all right with your family, deal with that person openly and honestly. Bring up concerns promptly. Encourage your provider to do the same.
   
  
• Say “thanks” to your provider -- Recognize what your provider goes through when care is especially challenging. Occasionally, ask how he or she is doing.
   
  
• Work as a team with your local Lifespan Respite coordinator -- Share your concerns and ideas to solve problems and to improve respite care services.