Respite Resources for Family Caregivers: The Top 10 Places to Turn for Help

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Chances are you may be one of the 66 million family caregivers in the U.S. charged with attending the needs of a loved one — or will join their growing ranks one day. Either way, you are likely aware of the many practical and emotional challenges involved in navigating life while providing that care. Caregivers regularly report on the various ways they feel overwhelmed: missing work, neglecting relationships, worrying about finances, dealing with self-doubts, combating intensified family misunderstandings — some even suffering anticipatory grief while confronting the impending death of one held near and dear.

Respite care allows caregivers some hours or days away from the intensity of their duties to rest, take some time for self-care, or reconnect with friends and others who lend support while their charges get care from others. It may be available free — from family members, friends, or volunteers. Or it may be paid help — from designated respite care staff, community organizations, or local care facilities. There may be help in paying through the Veterans Administration or through some types of insurance; Medicare also covers some of the costs if a person is in hospice care. The care may occur at home, an adult daycare center or residential care facility.

Still, it’s hard for many people, especially family caregivers,  to ask for help out of the thicket in which they find themselves trapped — specifically, having no time off and away from it all to regroup and recharge. For some, the barrier is psychological: they don’t want to burden others by asking for help. Or they don’t want to recognize or admit to their own limitations. Or they’re simply so overwhelmed, they can’t see the way to any help providing hope, or feel they can’t take time out even to search for it.

But many caregivers say they simply don’t know where to look for respite care services. Here’s help with that: 10 resources that make the search for respite care more manageable — in joy-sparking alphabetical order.

  1. ARCH National Network and Resource Center: Established in 1990, Access to Respite Care and Help (ARCH), has the goal of helping families locate respite and crisis providers and programs in their communities. Those interested can search by the names of state or Canadian province. Phone numbers and some email addresses are provided for contacts, though those searching can drill down deeper by clicking on “View,” which reveals a summary of more granular information such as type of payment accepted and types of conditions for which care may be provided or limited — such as autism, visual impairments, or Alzheimer’s and other dementia.
  2. Area Agencies on Aging: There are nearly 650 Area Agency on Aging offices throughout the U.S., and each is charged with coordinating services and making referrals that will allow area seniors to stay living at home as long as possible. The number and quality of local services varies widely by geographic region, as does the sophistication and knowledge of those staffing the referral phones — many of whom work as volunteers. The best staffers, however, are able to make the best matches of people and local resources, as well as provide details such as cost and whether or not there is a waiting list. Be specific about the help you’re seeking when calling — and if you don’t get the help you need, consider calling back at another time.
  3. Assisted living facilities, continuing care retirement communities, and nursing homes. Many residential care facilities offer room and board for older adults who need help with everyday tasks as hourly, half-day, full-day, overnight, or extended respite stays. Check first for facilities that you’ve heard good things, or if a nursing home, look into its ratings. A possible added benefit: The arrangement allows a commitment-free way for a potential resident to check out whether the facility might be a good fit down the line.
  4. Community Resource Finder: This online tool, a joint project of the Alzheimer’s Association and AARP, provides access to the groups’ programs and events, as well as a limited amount of resources for home care and community services, searchable by ZIP code. Try searching for Adult Day Care Programs under the “Community Services” tab, or Home Care or Home Health Care under the “Care at Home” tab.
  5. Easter Seals: Established in1919 as the National Society for Crippled Children, and expanded over the years to include resources for both children and adults with disabilities, this organization now provides information on caregiving as well as a directory to respite and day care services at many of the 71 affiliates located around the country.
  6. Eldercare LocatorFunded by the U.S. Administration on Aging, this group is a clearinghouse of community resources providing information and assistance to older people and their caregivers. The site provides a search function by ZIP code or city and state, but it’s a bit antiquated. It may be more useful to connect by phone (800-677-1116) with one of the organization’s information specialists; they’re available Mondays through Friday, 9 a.m. to 8 p.m., Eastern time.
  7. Family Caregiver Alliance: This group, founded specifically to  address the needs of families and friends providing long-term care for loved ones at home, operates a state-specific Family Care Navigator that links to local respite services as well as government health and disability programs, legal resources, and disease-specific organizations.
  8. National Adult Day Services Association: This group operates an online searchable database of the nearly 6,000 adult day services that operate throughout the country. Adult day services generally provide a variety of services that may include social activities, transportation, meals and snacks, personal care, and therapeutic activities such as exercise and social stimulation — while providing family caregivers time off from their duties and the peace of mind in knowing their loved ones are receiving care and attention.
  9. Respite Education and Support Tools (REST): This resource doesn’t provide a searching mechanism for respite providers; it provides the training to become a respite care provider. Training is appropriate for nurses, social workers, counselors, nursing home administrators and therapists who wish to increase their knowledge and skills in the area of respite, as well as family, friends, and volunteers who want to provide respite within a supervised community respite program. A number of former family caregivers enroll once their primary caretaking duties have ended — and they find they had a knack for giving such care.
  10. Shepherd’s Centers of America: This national network of nonprofits provides a searchable database of interfaith, community-based organizations designed by, with and for older adults. Offerings vary drastically depending on location, but may include help with transportation, friendly visitors, home health aides, adult day care, and general respite.

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