RESPITE: Time Out for Caregivers Part I

By Nancy Carson, National Family Caregivers Association

No one can expend their energy, strength, and time giving to someone else, especially in the demanding role of family caregiver, without replenishing their own reserves. Sooner or later, something has to give. Respite care brings temporary relief to primary aregivers from the continuing demands of someone with special needs. Respite care may be planned or emergency, in home or elsewhere, for a few hours or perhaps a couple of weeks. The purpose of respite is to allow the caregiver to rest, recharge, and remember that there is life beyond caregiving. Respite is about You. (Having someone stay with your loved one while you do the grocery shopping is not respite. It's help.)

Data compiled by NFCA and other groups underscores the physical and emotional impact of caregiving. We've reported numerous times on the data from our 1998 Caregiver Member Survey that despite finding an inner strength they didn't know they had, a majority of caregivers suffer from sleep deprivation and depression. If this wasn't bad enough, the Journal of the American Medical Association reported in December of last year that elderly stressed caregivers have a 63% higher mortality rate than non-stressed caregivers.

Even if caregiving difficulties do not manifest as physical ailments, the adjustment to caregiving takes a toll. Christine Nicholson, RN, MSA, Vice President of Product Development for Boomerang, the company providing caregiver advisory services to NFCA members (and possibly the woman you've spoken to if you called) puts it this way, "Even if you are not clinically depressed, you are likely to be in a depressed state, just because of the loss of your former lifestyle, and the things that you can no longer do."

The good news is respite helps! The National Respite Coalition cites data showing that respite improves family functioning, improves satisfaction with life, enhances the capacity to cope with stress, and improves attitudes toward the family member with a disability (Cohen and Warren, 1985). In a 1989 national survey of families of a child with a disability, 74% reported that respite had made a significant difference in their ability to provide care at home; 35% of the respite users indicated that without respite services they would have considered out-of-home placement for their family member (Knoll, James, Human Services Research Institute, March, 1989).

Take Care! has identified two aspects of respite that caregivers need to consider. The first touches on the difficult issue of how do you come to terms with your need for respite? Some caregivers easily accept help and manage to "share the caring," confident of the benefits for themselves and their loved one. But for others, the prospect of asking for help, or letting someone else provide the care they normally do, is impossible, even if it is only for a few hours. This topic will be the subject of a subsequent article.

This article deals with the more practical side of respite what are the options? Once you've decided that you should take respite, how do you begin to look for good respite care?

Changes are taking place in respite services. There is more understanding of, and emphasis on, this crucial assistance, especially at the state level. On the national level, the recently enacted National Family Caregivers Support Program contains some financing for respite advice and services, and at the community level there are more programs with flexible services than in years past. This article highlights some of the respite options currently available.

Respite Services Provided in Your Own Home

The preferred respite choice for most people is someone who can come into the home to allow the caregiver to leave for a few hours on a regular basis. Perhaps family members can meet this need. If this is not feasible, consider help from a community-based volunteer group, or from a home health care agency. (The choice depends on the skill level that will be needed, and, unfortunately, on your ability to pay for respite services.)

Volunteers provide more and more help for caregivers, as community-based groups respond to the growing need. The Interfaith Caregivers Alliance (ICA)works with congregations to find volunteers who can visit homes, allowing caregivers time for themselves. The ICA now operates more than 1,000 programs in every part of the country, with over 75,000 volunteers who assist over 150,000 individuals.

Meal preparation, transportation, light housekeeping, and similar services are offered by these visitors, who seek to become a friend to the caregiver and your loved one, and then bring to the friendship a new source of social and personal support. These volunteers do not do medical care. New ICA programs are opening all the time, and the Robert Wood Johnson Foundation, the organization that provided initial funding for most of the interfaith groups around the country, has just initiated another round of funding through its Faith in Action program, to expand the network of congregations to more communities.

Connie Ford, NFCA state representative for Florida, is president of Boca Raton Interfaith in Action (BRIA), an organization she started with a Faith in Action grant. BRIA seeks to offer not only support and relief from daily demands of caregiving, but spiritual respite as well. Says Ford, "Spiritual respite is an opportunity to restore oneself in whatever way is meaningful. We talk with caregivers, encourage them to focus on their spiritual needs and make this respite a regular component of their life. The natural tendency is to use the time to do errands, but that is not sufficient to sustain people over time."

The Boca Raton program runs background checks on all volunteers, and requires a pledge of confidentiality. Volunteers go through an orientation and meet regularly for support. A new grant from a Florida foundation means that the program will expand its services, and will offer caregiver assessments and a more dynamic program of help.

Although the various interfaith caregiving programs offer different services, and they don't exist in every community, they are a great and growing respite resource for caregivers across the country.

When a trained volunteer is not sufficient for respite - i.e. when medical skills are required, or when volunteer groups are not a choice in your community - caregivers normally turn to home health care agencies. Good places to start are local affiliates of the Visiting Nurse Associations of America. Visiting nurses essentially invented home health care over a century ago, and since 1983 local groups have organized to offer help that is non-profit, community based and Medicare certified. Unfortunately respite care is not covered by health insurance, whether Medicare or private, so be prepared to pay out of pocket if you contact a home care agency.

VNAA groups and other home health agencies often have a separate arm that supplies private pay care, which may be private duty nursing or a range of non-skilled care. Working with a home care agency has a number of advantages, a primary one being that while you get some respite, a home care aide can actually be providing some "bed and bath" or other caregiving services, so that when you return some of the heavy duty work of caregiving has already been done, thereby allowing the benefits of your respite to linger awhile.

Respite on Location

If care in the home - either medical or social - is not the solution for you, consider day services. Such programs are increasingly available, both for adults and children, through for-pay or subsidized programs. For example, the national mission of Easter Seals is to help people with disabilities to live with independence and dignity in the community. Part of carrying out this mission is the creation of care centers across the country. Lisa Reeves, Vice President for Program Services for Easter Seals in the Maryland-DC area, says, "When people are encouraged to share the care, we hear from them. We also seek out people and encourage them to ask for help, so they can succeed as caregivers. Caregivers need respite so they can remain healthy and vital."

Easter Seals' Baltimore Break-Away Center is typical of high quality adult day programs around the country, and has the special advantage of being able to take people with medical needs. Break-Away is open from 7 am to 6 pm. This center can accommodate 50 people. The person in the center is part of special outings and activities, can learn new things and have social experiences in a safe environment, have a massage or enjoy music. Most people come from two to five days a week. Reeves points out that the center serves both the person with special needs and the caregiver. Adult daycare can meet respite needs or help a caregiver continue to work. "Life should be better for both people," says Reeves.

Helping people remain at home with dignity is one goal of day centers like Break-Away, according to Don Budd, the Assistant Director of ElderHealth Northwest. Washington State is one of the few states with an emphasis on non-institutional care, and it has led to financial assistance for many day care choices. The state's nursing home population is the lowest it has been for 20 years. Budd says both the demand for, and the options of, respite are increasing. For instance, ElderHealth's clients are often supported by Medicaid funds, and help for transportation is also available. Other states are starting to follow Washington's lead and striving to allocate more funds for community-based programs that can serve as a source of respite for caregivers.

Respite Overnights

Respite for longer periods, to allow caregivers to travel or maintain their own health, might be supplied by a home health worker who has come during the day and established a good relationship with the special needs person, or it can also be found at a nursing home, group home or other residential facility. Daphne Butcher, a social worker at the Stafholt Good Samaritan Center in Blaine, Washington, says that while their Center is receiving fewer inquiries about residential respite than in the past, it is still a vital service. "If someone has worked themselves to exhaustion, they just cannot continue to take care of someone else. Also, sometimes people come for a brief stay, to see how it works, and then come for a longer visit." Butcher believes that the best candidates for residential respite are people who are cognitively intact, and who can understand the necessity for spending a little time in a new place.

Expanding Respite Care Services

Although there are more options for in-home, day center and residential respite than in the past, there are not enough, and finding care and paying for it can be difficult. Jill Kagan chairs the National Respite Coalition (NRC), of which NFCA is a member. The Coalition, which has traditionally focused primarily on care for families with special needs children, is expanding its focus and is developing a strategic plan to enact legislation that would unify respite services and help caregivers identify respite financing. This legislation would eliminate the confusion that many caregivers face in finding help, whether they are caring for an adult or a special needs child.

This approach is called Lifespan Respite. It means, in the words of the NRC, "the provision of community-based planned or emergency shot-term relief to caregivers from the demands of on-going care for an individual of any age with special needs." The national effort follows the lead of three states - Oregon, Nebraska and Wisconsin - where Lifespan Respite Acts are in place. Oklahoma also provides this coordinated service.

In a state with a Lifespan Respite program, one phone call to a social worker, area aging council, family social service agency or similar organization will enable the caller to find all local respite options, along with information on how respite might be funded. The information covers all types of service, all means of financing, for all ages and conditions of care, and places the power of choice in the hands of the caregiver. Kagan sees a future in which caregivers can find what they need without dozens of phone calls and dead-end efforts. But until Lifespan Respite becomes a reality, persistence is necessary, according to Evie Rosen, who lives in Colorado and cares for her husband with multiple sclerosis. "Become knowledgeable about community resources and stay on the phone. Be persistent. In most communities, there are resources," says Rosen.

Finding the right respite care can be a challenge-like so much of family caregiving. But the choices are improving, and chances are that after a few phone calls and visits you will identify some promising options. According to Christine Nicholson, "The hardest part of respite is deciding to do it. Once you can envision yourself getting out of the house, or taking Uncle Jack to a center, you will be able to find what you need."

Remember that respite care keeps you going - it is a necessity, not a luxury. It is one element of taking charge of your life and being good to yourself, of seeking support for your hard work, and of being open to ideas that promote your loved one's independence. These are hallmarks of successful caregiving. Respite can help you be a healthier, happier person and also be better able to care for the person you love. In our book that's a winning combination.

In the next issue: Facing the need for respite care, and a checklist of questions for potential providers.

Respite Care Resources

Interfaith Caregivers Alliance trains visitors who provide non-medical care and assistance in homes. www.interfaithcaregivers.org, 816/931-5442.

Family Friends trains senior volunteers to work with disabled and at-risk children. The latest Family Friends projects are listed at www.ncoa.org/news.

Area Agencies on Aging can put you in touch with people who know about respite for the elderly in your area. For this information, call 800/667-1116 (Eldercare Locator). This number is a good starting point if you have no idea who to call about respite services.

The Visiting Nurse Associations of America can be contacted online at www.VNAA.org. This website includes links to state and local VNAA member groups.

National Adult Day Services Association can send you, without cost, the NADSA Guide to Selecting an Adult Day Center. This booklet includes a check list that you can copy and take with you on visits to centers. In addition, you can order a copy of a directory of centers. Contact them online at www.ncoa.org/nadsa/direction/index.html.

Easter Seals operates 60 adult and senior centers, and also has facilities for children. Call 800/221-6827.

For more information on the National Respite Coalition, and a list of Statewide Respite and Crisis Care Contacts (mostly focused on assisting children but likely to help with other needs), go to www.chtop.com/nrc.htm. Call 703/256-9578 or write to Jill Kagan online at [email protected]

Shepherd's Centers of America provides respite care, telephone visitors, in-home visitors, nursing home visitors, home health aides, support groups, adult day care, and information and referrals for accessing other services available in the community. Services vary by center. There are currently 75 centers around the country. You can reach them at: 800/547-7073, or www.shepherdcenters.org.