This is a comprehensive article from HelpGuide.org about all aspects of respite care — types of respite care (including in-home care provided by family and friends and out-of-home care), getting your family involved in respite care, selecting care (including questions to ask), paying for care, and strategies for successful respite.
Respite Care: Finding and Choosing Respite Services
By Melissa Wayne, MA, and Monika White, PhD
For many, the challenges of caring for an elderly, chronically ill, or disabled family member are simply a part of daily life. Caregiving, though, is a demanding job and no one is equipped to do it alone. Respite care provides short-term breaks that can relieve stress, restore energy, and promote balance in your life. Even if working with family members is difficult, there are many other respite care options available to support you and your loved one.
RESPITE CARE BASICS
Seeking support and maintaining your own health are key to managing your role as a caregiver. Using respite care before you become exhausted, isolated, or overwhelmed is ideal, but just anticipating regular relief can become a lifesaver.
Respite care can take many forms, but boils down to two basic ideas: sharing the responsibility for caregiving and getting support for yourself. Finding the right balance requires persistence, patience, and preparation.
Planning your relief
Planning starts with analyzing the needs of both you and your loved one. Assessing your needs for the type, skills, frequency, and location of respite services is critical to ensure you receive appropriate respite. As a caregiver, is support what you need most? Or is it some regular free time? Or maybe help with transportation? Keep track of your daily activities and then make a list of the areas and times when you most need help.
Identifying your loved one’s requirements, abilities, and preferences will also help you find the right match. Are social activities primary? Do they require assistance with walking, eating or medications? Do they need mental stimulation? Or exercise? Answering these questions will help you determine which respite options to pursue.
TYPES OF RESPITE CARE SERVICES
In-home respite care services
In-home respite can be provided by volunteer or paid help, occasionally or on a regular basis. Services may last from a few hours to overnight, and may be arranged directly or through an agency. This popular respite choice enables the patient to remain in his or her own home, and can be invaluable for caregivers. Consider which of these options might meet your needs:
Stimulation, recreation, and companionship can be provided by family members, friends, or neighbors while you take a break. Faith-based, community, and other non-profit organizations recruit volunteers, while home-care businesses provide trained staff to cover short in-home intervals.
Personal care providers assist with daily living skills such as bathing, dressing, feeding, or toileting. Homemaker services support meal preparation, shopping, and housekeeping. Skilled health care, which requires more specialized training and experience, addresses medical needs.
Out-of-home respite care services
As our aging population grows, this range of private and non-profit respite programs continues to expand:
Adult day centers are designed for older adults who can no longer manage independently, or who are isolated and lonely. Planned activities promote well-being though social and health services. Adult day care centers operate during daytime hours, Monday through Friday, in a safe, supportive, and cheerful environment. Nutritious meals and afternoon snacks that accommodate special diets are typically included.
Residential programs offer temporary care for varying lengths of time. Group homes, hospitals, nursing homes, and other specialized facilities provide emergency and planned overnight services, allowing caretakers 24-hour relief. Although medical insurance in the U.S. generally does not cover overnight respite, long-term care policies and veterans’ programs may subsidize care (see Paying for respite care below).
Caregiver retreats and respite camps are available in some areas, combining respite with education and peer support.
GETTING YOUR FAMILY INVOLVED IN RESPITE CARE
Family members and friends may be able to help out while you run an errand, take a break, or even go on vacation. However, just as the burden of caregiving is often more than one person can handle, it can also be a tough process for families to share.
Even the healthiest families can be severely stressed by ongoing care, and the division of labor is frequently lopsided. You can encourage support and participation by:
* Talking openly and regularly. Keep everyone up to date on your loved one’s needs and condition. Family members who don’t share the day-to-day caretaking experience may not fully appreciate the situation.
* Encouraging family members to evaluate what they can reasonably and honestly do. Changing roles and varying resource levels can impact family involvement. Welcome different viewpoints, accept limitations, and be willing to try alternate strategies. Share your list of needs and take advantage of all offers to help.
* Recognizing your own feelings and discussing disproportionate tasks. Harboring resentment when you need more help can lead to your burnout and impaired health. Ask directly for concrete support and specific time commitments. Consider establishing an online calendar to organize relief and reconfirm schedules.
* Using technology to bridge distances. Try free video conferencing services to hold family meetings at times that work for everyone. Create a web-based community to share updates and explore options.
* Exploring a family respite cooperative. Consider trading respite services with other caregivers and their families. Pooling resources with others in the same situation can encourage greater involvement, reduce costs, and increase flexibility.
* Participating in support groups. Learning how other families cope can suggest new options and provide reassurance. When siblings are unable or unwilling to share the load, peer support can be invaluable.
SELECTING RESPITE CARE SERVICES AND PROVIDERS
When you devote so much love and energy to caregiving, it may be difficult to entrust your family member’s care to strangers. Whether you engage a provider directly or work through an agency, you can allay your fears by conducting some basic research.
Using independent providers
Although you are anxious for relief, taking time to find the right person is essential for your peace of mind and your loved one’s safety. Make sure you:
• Conduct an in-depth interview with each candidate. Screening applicants on the phone should always be followed with a personal interview.
• Be specific about all of the tasks, skills, and schedules involved.
• Discuss compensation and payment schedules. Do not pay for services in advance.
• Request several work and personal references, and check them carefully. Verify the information provided, and ask all references about reliability, trustworthiness, punctuality, and the care provider’s ability to handle stress.
• If possible, consider a background check. In the U.S., professional services cost between $100-$150 and can alert you to potentially serious problems. Check with your local police department, legal aid service, or attorney for referrals to reputable investigators.
Always include the potential care recipient in the screening process if he or she is able to participate, to ensure that both parties are comfortable and that your loved one’s needs are respected.
Working with agencies
Although independent providers are generally the least expensive, home care agencies and referral services are often easier to use. Use your planning lists to help these professionals better serve you.
An agency finds and places providers, handles payroll, and usually provides substitutes for sick or absent personnel. If problems occur, you also have specific avenues of recourse (complaints, mediation, or arbitration) that are not available when working with individuals.
Referral services work to match your needs with local program options. Use online registries, or check newspaper ads or the yellow pages to find specialists who know local programs and can help you navigate their systems.
Choosing off-site programs for respite care
When you have identified potential out-of-home programs, plan to visit at least three. Observe the staff and how they interact with care participants. Try to picture your loved one there, and check your instincts to see if you’re on the right track.
Be sure to ask the following questions:
• How are care providers screened?
• What is the training and level of experience of the care providers?
• Will care providers need additional training to meet specific family needs?
• How, and by whom, are the care providers supervised?
• What procedures does the program have for emergencies?
• Are families limited to a certain number of hours of services?
• Does the program provide transportation and meals?
• What is the cost of services? How is payment arranged?
If you can, spend a day at the center that seems best to you, so that you can get a “feel” for the people and environment. Be sure to bring a site checklist with you and ask plenty of questions. You may wish to return a few times to see whether your experience on different days confirms your initial impressions.
PAYING FOR RESPITE CARE
In today’s challenging economy, you may think respite services are unattainable. However, thinking creatively can uncover valuable resources:
• Ask local retirement groups for volunteers to sit with your loved one while you take a walk, watch a movie, run errands, or spend time out with friends.
• Trade services with other caregivers. When a loved one is able to change locations for an afternoon, alternate weeks caring for both recipients at once.
• Contact area high school counselors. College-bound students often need community service experience and are available afternoons and evenings.
Traditional funding sources for respite care in the U.S.
* Insurance: Although medical insurance generally does not include respite coverage unless licensed medical professionals are involved, long term care policies usually fund services up to specific time or dollar limits.
* SSI: Patients with disability coverage may be eligible for home health care benefits. Check your local Social Security office to verify eligibility.
* Medicaid: Medicaid does not fund respite directly, but some states use waivers to apply federal funds to offset respite costs for residents with specific conditions and disabilities. Consult your state’s Administration on Aging website.
* Veterans’ Benefits: The VA provides inpatient respite coverage for up to 30 days per year for qualified veterans. In addition, when war-time vets care for their spouses, funding for in-home services are available on a state-by-state basis.
* Foundation Grants: Private foundations, such as The Robert Wood Johnson Foundation and the Brookdale Foundation, make grants to organizations that provide direct respite. These funds are usually awarded annually and posted on foundation websites.
* Nonprofit and Disability Organizations: The United Way, the Alzheimer’s Association, and other disability-specific organizations may offer respite money in your area. Agency care specialists can assist you in researching these funds.
* State Agencies: Over half of all states allow family members to receive payment for providing respite care. Eligibility, delivery modes, and funding vary from state to state. To learn what is available in your area, check Home Care Agencies in the Resources section below.
STRATEGIES FOR SUCCESSFUL RESPITE CARE
While finding and implementing respite care sounds like a lot of work, relief and revitalization is not just important for you, it benefits all those involved in the caregiving process.
Remembering the benefits and following these six tips can ease the process:
* Plan and schedule frequent breaks. Respite is not just a service—it is an effect that can only come from regular relief.
* Use checklists to inform respite care providers about your care recipient’s schedules, likes and dislikes. Offer suggestions for handling any difficult behaviors.
* Make back-up plans. Always keep a list of alternate respite care providers and resources. Unplanned emergencies should not prevent you from taking care of yourself.
* Evaluate respite care providers often. Observe your care recipient before and after respite sessions. Ask for brief updates and more detailed reports regularly.
* Expect changes. Respite care is a process that often requires fine-tuning. Anticipating and accepting changes in personnel or programs can keep you from becoming discouraged.
* Attend your support group regularly. Structured and informal groups allow you to meet others in situations much like yours. You can talk, vent, laugh, and exchange tips with people who understand. If you can’t easily leave home, online communities, message boards, and forums can also provide much-needed support.
RESOURCES AND REFERENCES
Tips and support for family caregivers
National Caregiver’s Library – A comprehensive reference source, including checklists, links to government resources, and products. www.caregiverslibrary.org
Respite Caregiver Checklist – Helps the temporary caregiver learn about the care of their recipient’s needs. www.agingcare.com/siteimages/R
Respite resources in the U.S.
Elder Care Services Search – A federal government site that includes a search-by-zip code directory of elder care services, planning resources, benefits planners, and links to state agencies. www.eldercare.gov
Respite Locator – Offers fact sheets and a national respite care directory. archrespite.org/respitelocator
Respite Care – A comprehensive guide to understanding, locating, and using respite care. www.alz.org/care/alzheimers-de
Carepages.com – Keep your friends and family members up to date and involved by creaing a secure site dedicated to your loved one.
Lotsa Helping Hands – Organize respite schedules and manage activities using an interactive calendar. LotsaHelpingHands.com