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RESPITE: Time Out for Caregivers

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 caregivers 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.) 

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. 

Boca Raton Interfaith in Action (BRIA) is an organization 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 BRIA, "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. The 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. It is important to point 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 Easter Seals.

Helping people remain at home with dignity is one goal of day centers like Break-Away, according to 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. ElderHealth Northwest 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, 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." Daphne 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.  The National Respite Coalition (NRC), 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. NRC 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, 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 Evie. 

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, "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.

Common Obstacles to Overcome Before Taking Respite

Family, friends, and professional counselors talk a great deal about respite- allowing a family caregiver to turn over full responsibility for their loved one to someone else so they can get some rest, restore their own sense of themselves, and find the strength to continue. It seems like a logical step, particularly in a long-term caregiving situation. But often, caregivers either reject respite outright or specify so many requirements that it never happens. It is important to explore the psychological and emotional obstacles that must be overcome before a caregiver can even decide to take respite. 

Chris, RN, MSA, who has been counseling caregivers for the past ten years, understands the complexities of respite and lends caregivers a sympathetic ear. "To people on the outside, it's obvious that the caregiver needs respite. It's the rational thing to do, but caregiving is a highly emotional situation and reason can't always cut through the thick foliage that surrounds a caregiver's heart." 

"Caregiving is as much about relationships as it is about tasks, and we overlook this," says Boca Raton Interfaith in Action (BRIA). "It's so much easier to focus on and talk about all the tasks of caregiving. And in terms of needing relief, if the caregiving is short-term, it's emotionally easier to do it yourself-just tough it out. Over a long period of time, however, you will become too taxed and your survival is at risk." 

But even if the caregiver is healthy and managing, BRIA and other professionals point out, the relationship itself-the core value-is placed at risk by constant stress. Just as we advise parents not to spend every hour of the day and night with their children, because it is not healthy for the family, so two people living under stress need the refreshment of occasional separation and change to keep the relationship loving and healthy. And the presence of a third person, especially on a regular basis, enables the caregiver and the person cared for to have a new conversation, see things from a different perspective, and occasionally even vent their feelings in confidence. 

Fears That Paralyze 

There are four deep fears that impede caregivers from taking respite. The first, and most obvious, fear is that the person who comes in or the institution that provides care will not do a good job, will not care for the person carefully or lovingly. In other words, something will go wrong. And of course, this is not an unrealistic fear-things can and do go wrong. But this is a reason to try to find respite help early on, so that reliable people and institutions can be in place, and that the caregiver has access to a trustworthy, dependable, and competent person when a respite break is desperately needed. 

The second fear is harder to talk about. It is the fear that the temporary caregiver may do an excellent job-and that the family caregiver will feel inept or not needed. BRIA observes that this fear can be very difficult to overcome for people who are plunged into caregiving with little or no training, which of course is true of most caregivers. "They often think they are 'supposed to know' how to do everything, although they have had no education in these skills. If the person has no training and perhaps is not entirely secure about caregiving to begin with, the fear that an outsider will do a better job can be substantial." 

A third fear, and one that is seen in other life situations in which people are fully engaged in a difficult and daunting task, is that when the role of caregiver is removed, the person faces an emotional void. If your whole identity has become that of constant caregiver, who are you when you do not do that job? If you have no life outside the home, what do you do with free time? Time away may open your eyes and cause you to begin to face the reality of the situation and how very hard it is, and this can be overwhelming for some people. 

Finally, there is another powerful force at work, stemming from a value that is fundamental to the health of families. It is the fear of not meeting our responsibilities and commitments to those we love. A parent's job is to protect and care for their child. The Ten Commandments direct us to "honor thy father and mother." Wedding vows are promises made and kept. "For better or for worse" translates into 24-hour care for some people. 

"We want to honor that instinct and we want to realize that this is a wonderful value. We need to intervene in a way that makes sense emotionally as well as practically. What if that promise is more important than anything in the world?" says Chris. Caregivers who can't recognize that the demands of caregiving often cross the line between family responsibility and responsible healthcare for themselves have a very hard time acknowledging their own needs and attending to them. 

Accepting Respite 

Debbie has a deep understanding of what it takes to help caregivers accept respite. Debbie led the fight for lifespan respite in Oregon and served in its Respite Care state program, which offers coordinated and accessible respite help to caregivers of all ages. Oregon's program of community partnerships brings together all the types of respite and all the providers in a given community. A caregiver can make one phone call and get a motherlode of information. As Debbie emphasizes, the basis of lifespan respite is that it is family-centered. The whole family is helped, not just the caregiver and not just the person with special needs. 

"Each person is different, and respite needs to be what they want and can accept," says Debbie. "Respite programs must respect individual needs if they are going to be successful," she adds. "For example, we had one mother of a special needs child who just wanted to go upstairs and take a bath without interruption, for an hour and a half once a week. For her, that was a much-needed respite. The respite provider was in the house, so the mother knew there would be no knock on the bathroom door and she could truly savor her bath. For another family, where the disabled father used to love playing golf, respite meant that an understanding man would take the father to the golf course on Sunday afternoon so he could have some pleasure and the family could relax in their own home. 

"All of us at the respite program respect that caregivers need to proceed at their own pace. Someone might make an initial contact, get a list of resources, and then not do anything for two months. They need that time to get comfortable with the idea of moving ahead. It's not up to us to tell them what to do or make the choice for them." 

Debbie points out that accepting respite and asking for help may be especially difficult when the situation is seen as more behavioral than medical. "If someone in the family is in a body cast, people in the neighborhood come over with casseroles, offer to run errands, ask if they can come in and read to the person. But if someone has behavioral changes and needs monitoring, or their behavior is unpredictable, fear of the unknown sets in. The person is still there, looks the same, is in the house eating or watching television. But things have changed. People in these families get less help, and it's especially difficult because the caregiver is in some sense grieving for the person that is lost." 

Good Advice 

Choice, patience, and flexibility can add up to making respite possible. The Director of the ARCH (Access to Respite Care and Help) National Network and Resource Center reminds us that our culture emphasizes self-sufficiency. "We are supposed to take care of our own problems and meet our own needs. For many people, it's just embarrassing to ask for help. They were taught not to do it, and they don't want to. And they don't like admitting that they can't do everything themselves." 

BRIA suggests we remember that respite, like all decisions, reflects where the caregiver is on their journey. BRIA's interfaith volunteer caregivers group does not offer medical or nursing help, but rather brings friendship and support to the family. BRIA believes that having some kind of friendly visitor or helper early on allows the caregiver to adjust to the idea of sharing the care and prevents a crisis from developing. Respite needs to be part of the routine from the beginning, not something added on after an emergency. 

Similarly, Debbie is working to normalize the public understanding of respite, for caregivers and everyone else. "I try to bring it to an everyday level," says Debbie. When I speak to groups, I point out that at school, there is recess. In football, there is half time. At work, we have a break for lunch and coffee, and even more importantly, we earn vacation time, typically two weeks a year off for a 40-hour work week. At night, we all take a break and go to sleep. Our bodies and minds demand it. 

If you are a family caregiver, every 24 hours can seem the same. Wednesday looks like Saturday, which looks like Tuesday. There is no break, and there is nothing to look forward to. You can lose yourself going along like this. You need managed, scheduled respite of some kind, so you can have something to look forward to. It's important for your physical and emotional health. It is important for your soul.