Respite care assumptions
Oftentimes, when "respite care" is mentioned, the following springs to mind:
Care that is, foremost, paid for by insurance.
Care that is provided by home health professionals (nurses, CNAs, home health aides).
Care that is provided in the home.
Care that is 24 hours a day.
Easy to arrange.
Care that is complete, including medication administration, wound care, and other medical/nursing tasks, personal care, homemaking, errands, and companionship.
Respite care reality
Respite care has been shown to improve caregivers' physical and emotional well-being, and caregivers report feeling refreshed and ready to re-engage in caring for their loved one following respite. However, the assumptions (above) that many people make about respite care are not reality.
Respite care is not covered by most insurance plans, and if so, it is only covered in part and/or under special circumstances.
Respite care is predominantly covered for the caregivers of persons receiving hospice.
Respite care is rarely provided in the home. It often requires that your loved one go to a residential or nursing facility. Some plans will cover respite care in adult daycare centers.
Respite care can be 24 hours, like in a facility, though in a daycare or at home, it may only be for a few hours a day or at most an overnight.
Respite care requires provider documentation demonstrating the need for it.
Respite care is not always complete care. In a residential or nursing facility, it is, which is why this is the preferred care setting for insurance plans. But care provided in a daycare, or in the rare cases of being provided at home, is likely not complete care.
Reframing how you think about respite
If respite care is so structured, even limited in fact, then how can you get it and how is it beneficial to you?
If you start to think about respite care as being any time you are relieved of caregiving responsibilities - whether one task or ten, whether for an hour or an overnight - then the available options for relief expand.
If another family member or friend can take over for a few hours - that is respite.
If you can significantly reduce errand time by enrolling your loved one in mail-order prescription service and grocery delivery, sparing you time at the pharmacy and supermarket - that is respite.
If you can save yourself half a day by hiring someone to take care of homemaking chores (cleaning, vacuuming, laundry) - that is respite.
If you can host a family or neighborhood pitch-in, especially one that results in leftovers, and spare yourself the time and effort involved in meal prep and storage - that is respite.
If that same pitch-in increases socialization for you and your loved one, a chance to engage with people other than each other - that is respite.
If you can book transportation for your loved one rather than having to drive them to an appointment, wait there, and drive them back - that is respite.
If your loved one has insurance benefits available that may take some of the load off you, or improve your relationship by increasing communication or your loved one's function - that is respite.
Health and wellness programs
Screenings and disease prevention programs
Nutritional programs
Fitness
Even durable medical equipment (reduces your physical strain and increases your loved one's confidence)
And who pays for respite?
Family, friends, and neighbors are free. Many of the benefits listed above are greatly or wholly covered by your loved one's insurance.
Regarding traditional respite care (complete care), however, it is most often paid for out of pocket, especially if you want respite care in the home.
That said, there are some plans, programs, and services (listed below) that may not completely cover the cost of respite care but can offset some of the cost. For more details on these payor sources, see our Guide: Sources for Respite Care Coverage.
Medicare Advantage (MA) plans (Part C)
Adult daycare, in-home (not institutional) hospice respite, short-term residential
Medicaid
Not a standard benefit, but available via waivers or state plans
U.S. Department of Veterans Affairs (VA)
Various benefits and programs are available, though not all are eligible
National Family Caregiver Support Program
State Family Caregiver Support or Respite Programs (not available in every state)
Lifespan Respite Care Programs (not available in every state)
Private funding sources
Faith-based organizations
