Respite Care and Family Members
Author: Wendy Taormina-Weiss
Published: 2012-02-17 : (Rev. 2014-03-15)
Synopsis and Key Points:
Respite care gives family members and other caregivers short term breaks relieves stress and energy while promoting balance in their lives.
Main DigestFor many family members or other caregivers, the challenges associated with caring for a loved one is a part of daily life. Providing care can be a difficult and demanding job and no one is prepared to do it alone.
Respite care is short-term care given to a hospice patient by another caregiver, so that a family member or friend who is the patient's caregiver can rest or take time off. This type of care was created to allow caregivers time away from administering care, with the goal to help the caregivers have lower stress and at the same time fill the needs of the individual receiving care. According to the Centers for Medicare & Medicaid Services, respite care comes from Medicare-approved facilities, like a hospital, nursing home, or hospice inpatient facility.
Family members of people with disabilities, seniors who experience Alzheimer's disease or other forms of disabilities, or parents of foster children may at some point feel as if they need a break from care giving. They may feel as if their own health is diminishing to the point where they have to provide care for themselves in order to be able to provide care for their loved ones. Family members may even feel they are no longer able to continue to provide full-time care for their loved ones at home. At times it may be difficult to convince the person they care for that they do need time out.
For many family members or other caregivers, the challenges associated with caring for a loved one is a part of daily life. Providing care can be a difficult and demanding job and no one is prepared to do it alone. Getting the help caregivers need is essential for their health, and the health of caregivers is essential to their ability to care for their loved ones.
Respite care gives family members and other caregivers short term breaks, relieves their stress and energy, while promoting balance in their lives. Working with family members or friends can be challenging, although there are a number of respite care options or strategies. Pursuing support while maintaining a caregiver's health are the key to managing caregiving years. Use of respite care prior to becoming isolated, exhausted, or overwhelmed is best, although simply anticipating consistent respite from caregiving can be helpful.
Respite can exist in a number of different forms but comes down to a couple of basic ideas - shared responsibility for caregiving, and support for the caregiver. Finding the balance between these two things requires patience, persistence, as well as preparation. Planning begins with analysis of the caregiver's and the loved one's needs and what both need the most. What does the caregiver need the most? Is it free time, or transportation? What does the loved one need the most? Is it social activity, assistance with eating, walking medications, exercise, mental stimulation
Tracking the caregiver's and the loved one's activities, listing both the areas and the times when help is needed the most, as well as identifying the loved one's abilities, requirements, and preferences will help to find the right respite match. There are a couple of forms of respite care that might be pursued; in-home respite, or out-of-the-home respite.
In-home respite care may involve:
- Paid or volunteer companionship
- Informal family relief and support
- Skilled or personal care health assistance
- Online caregiver video workshops and communities
Out-of-home respite may involve:
- Adult day programs
- Residential respite care
- Caregiver support groups
Involving Family Members in Respite Care
Family members and friends might be able to help caregivers who need to run errands, take a break, or who need a vacation. It is important to bear in mind that just as the duties involved with caregiving can wear on caregivers; it can also do the same to family members and friends. The healthiest families can experience severe stress from providing ongoing care and caregiving is many times lopsided. There are some different ways to encourage participation and support.
Speak Openly and Regularly: Ensure that everyone involved remains up-to-date concerning their loved one's condition and needs. Family members who do not share day-to-day care providing experiences might not fully appreciate their loved one's needs.
Be Aware of Your Own Feelings, Discuss Disproportionate Tasks: The harboring of any resentment when you need assistance has the potential to lead to impaired health and burnout. Directly ask for solid support, as well as specific time commitments. Consider establishing a calendar with the goal of organizing relief and then re-confirm schedules.
Encourage Family Members and Friends to Evaluate What They Can Reasonably/Honesty Do: Varying resource levels and changing roles may impact their involvement. Be open to differing viewpoints while accepting limitations. Be willing to try different strategies, and share your own list of needs while pursuing offers of assistance from others.
Make Use of Available Technologies to Bridge Distances: Use free video conferencing to hold family meetings during times that everyone agrees on. Create an Internet-based community with the goal of sharing updates; explore your options in this regard. Use social networking to keep in touch with others.
Check Out a Family Respite Cooperative: Consider trading respite services with other caregivers and their family members or friends. Pool resources with others; it may encourage involvement while reducing costs and increasing flexibility.
Participate in Support Groups: Take the time to learn how other families are coping; it can help you to learn new options while providing you with reassurance. When family members or friends are either unwilling or unable to participate in caregiving, support from peers can be an invaluable thing.
In-Home Respite Care Services
In-home care services may be provided through either paid or volunteer assistance on an occasional or consistent basis. The services can last from a few hours to overnight and might be arranged through an agency. In-home respite care services are popular and enable people to stay in their own environment. These services may be invaluable to caregivers and their loved ones. There are a couple of options that can meet caregiving needs:
C.N.A.'s or Personal Care Providers: Personal Care Providers or Certified Nursing Assistants (C.N.A.'s) assist loved ones with activities of daily living and health care needs to include dressing, bathing, feeding, and toileting. They can provide support through shopping, meal preparation, as well as housekeeping duties. C.N.A.'s have more experience and are skilled; they have the ability to address a wider variety of medical needs that Personal Care Providers are unable to.
Stimulation, Companionship, and Recreation: These services may be provided to family members, friends, or neighbors while a caregiver takes a break. There are community, non-profit, and faith-based organizations that recruit volunteers and home-care businesses with trained staff members who provide care for short in-home time periods.
Successful home respite involves matching the needs of both the loved one and the caregiver to services, selection of qualified providers of the services needed, the provision of meaningful information, as well as evaluation of the results.
Out-of-Home Respite Care Programs
People with disabilities, seniors, and others who have family members or friends providing care for them represent a growing population in America. The need for a range of both private and non-profit respite programs continues to grow along with the needs of this population. There are some different types of programs that serve the needs of this population:
Adult Day Centers: These centers are designed to serve older adults who no longer have the ability to manage independently, or who are lonely or isolated. The centers have activities that are planned and promote the well-being of seniors through social and health services. Adult Day Care Centers usually operate during the day from Monday through Friday and have environments that are safe, cheerful, and supportive. The centers serve meals that are nutritious, as well as afternoon snacks, that also accommodate any special diets seniors might have.
Caregiver Retreats/Respite Camps: These programs are available in some areas and combine respite with peer support and education. The availability of the programs differs from state to state and might be disability-specific.
Residential Programs: Residential Programs offer people temporary care for different periods of time. Hospitals, Nursing Homes, as well as Group Homes and other types of specialized facilities provide both planned and emergency overnight services, giving caregivers 24-hour respite. While medical insurance commonly does not cover overnight respite care, long-term care policies and veterans programs might subsidize these programs.
Researching Providers, Agencies, and Programs
Family members and friends who devote great amounts of love, energy, and time to caregiving can find it exceptionally difficult to trust the care of their loved ones to strangers. Whether they engage a provider directly, or work with an agency, family members and friends can ease their fears by pursuing some basic research.
While caregivers may be anxious to receive some relief, it is important to take the time to find the right person for respite. It is essential for not only the caregiver's peace of mind, but their loved one's safety. It is important to:
- Never pay for any services in advance
- Discuss any payment schedules or compensation
- Pursue an in-depth interview with each potential candidate
- Pursue a personal interview after screening applicants on the phone
- Specifically question the person's skills, tasks, and the schedules involved
- Request a number of both work and personal references and check them carefully
- Verify the person's information, asking every reference about reliability, punctuality, trustworthiness, and their ability to deal with stress
If at all possible, pursue a background check of the person. Professional services may cost anywhere from $100 to $150 and may alert you to potentially serious issues. Check with your local police department, legal aid service, or an attorney for referrals to investigators who are reputable, or search for, 'background checks,' on the Internet. Always make sure you include your loved one in the screening process if they are able to participate to make sure that both parties are comfortable, and that your loved one's needs are being met.
Home Care Agencies and Referral Services
While independent providers are commonly the least expensive option, home care agencies and referral services are many times easier to use. It is important to use your planning lists to assist them to better serve you and your loved one.
Home Care Agency: An agency both finds and places providers. It handles the payroll, and usually provides substitutes for ill or absent people. If problems or issues happen, you have specific means of recourse such as complaints, arbitration, or mediation that are not available to you when you work with individuals.
Referral Services:Referral services match the needs of caregivers and their loved ones with program options that are local. Caregivers can use online registries, the yellow pages in a phone book, or newspaper advertisements to find specialist who know local programs to assist with navigating their systems.
Choosing Programs that are Off-Site for Respite Care
When a caregiver has identified potential out-of-home programs, it is important to plan to visit at least three of them. It is important to observe the care participants in the programs receive, as well as their interactions with staff members. Attempt to picture your loved one in the program, checking your instincts to ensure you are on the right track. Ask yourself, as a caregiver, the following questions:
- How much does the program cost
- What are the procedures for emergencies
- How are payments arranged for the program
- Does the program provide both meals and transportation
- How are the people providing care in the program screened
- How, and by whom, are the people providing care in the program being supervised
- What is the training and level of experience of the people providing care in the program
- Are families limited in the number of hours of services they can receive through the program
- Will the people providing care in the program need more training to meet your loved one's needs
If possible, you should spend a day at the program that you find to be best suited so you can get a feel for both the environment and the people there. Make sure that you bring a site checklist with you and ask plenty of questions. You might want to return a few times to make sure you experience the program on different days to confirm your initial impressions of the program.
Paying the Costs of Respite Care
The economy today is rather challenging and as a caregiver you might believe that respite services are beyond your reach. Thinking creatively; however, may uncover resources that are valuable. For instance:
Trade Respite Services with Other Caregivers: When a loved one is able to change locations for an afternoon, you might alternate weeks caring for both loved ones at once.
Contact Area High School Counselors: Students in college many times need community service experience and might be available during the afternoon or evening.
Retirement Groups: Ask local retirement groups if they have volunteers who can sit with your loved one while you take a short break of a couple of hours to take a walk, watch a movie, or pursue an Internet workshop for example.
Traditional Funding Sources and Respite Care
Reaching for more traditional forms of funding for respite care can involve - paperwork, phone calls, and patience. Interactions with people on the phone and through the mail can take some time. Government, Foundation, Veterans Administration, private insurance and state agencies are all resources that can be approached.
Disability and Nonprofit Organizations: The Alzheimer's Association, The United Way, and other disability-specific organizations might offer respite care funding in your area. Agency care specialists may help you to research funding.
Foundation Grants: Private foundations like the Brookdale Foundation or The Robert Wood Johnson Foundation make grants to organizations that provide direct respite care. The funds are commonly awarded and posted on the foundation's websites.
Insurance: While medical insurance commonly does not include respite care coverage unless licensed medical personnel are involved, long-term care policies often fund respite services up to a specific time, or a dollar amount.
Medicaid: Medicaid does not fund respite care directly, although some states in America use waivers to apply federal funding to offset the costs of respite care for people who experience specific disabilities and conditions. Find out more through your state's Administration on Aging website.
SSI: People with disability coverage might be eligible for home health care benefits. It is important to check with your local Social Security office or call their toll free number to find out if they are eligible.
State Agencies: More than half of the states in America allow family members to receive payment for providing respite care. Eligibility and delivery modes, and well as funding, differ between states.
Veterans Benefits: The VA provides respite coverage on an inpatient basis for up to 30 days a year for veterans who are qualified. When war-time veterans provide care for their spouses, funding for in-home care services are available on a state-by-state basis.
Achieving Successful Respite Care
Finding and implementing respite care certainly sounds like a great deal of work. Respite care is not only important for you as a caregiver, it is important to your loved one and benefits everyone involved in the caregiving process. There are some tips that can help to ease the process:
- Plan for and schedule frequent breaks
- Use checklists to teach providers about your loved one's likes, dislikes, and schedules
- Offer providers suggestions for handling behaviors
- Make backup plans
- Evaluate providers often
- Observe your loved one both before and after respite sessions
- Ask for brief updates and detailed reports on a regular basis from providers
- Expect changes - respite care is a process that many times requires adjustments
Attend a local support group on a regular basis. Informal and structured groups give you as a caregiver the opportunity to meet others who are caregivers. They give you the opportunity to laugh, vent, talk, and exchange tips with others who understand.
Respite care is not simply a service; it is an outcome that needs regular relief. Unplanned emergencies should not prevent you from taking care of yourself. Anticipating and accepting changes in respite care personnel or respite programs can help to keep you from becoming discouraged. If you find that you are unable to easily leave home, message boards, online communities and forums can all provide you with support.
- 1 - Respite Care Information for Children with Autism : ARCH National Resource Center (2009/04/21)
- 2 - Respite Care and Family Members : Wendy Taormina-Weiss (2012/02/17)
- 3 - Importance of Long-Term Care Planning : LifeSecure Insurance Company (2010/11/01)
- 4 - Free Respite Holidays from Channel 4's Secret Millions Charity : Papworth Trust (2013/03/25)
- 5 - Tendercare Services - Service With Care And Compassion : TenderCare Services (2010/07/12)
- 6 - Caring for Yourself While Caring for A Seriously Ill Loved One : Highmark Inc. (2010/11/05)
- 7 - Respite Care for Children with Disabilities and Terminal Illnesses : ARCH National Resource Center (2009/04/21)
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