National Family Caregivers Association

Wednesday Jul 9, 2008

Respite: Time Out for Caregivers, Part 2

By Nancy Carson

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. In the previous issue of TAKE CARE!, we explored the numerous and growing sources for obtaining different types of respite help. In this issue, we explore the psychological and emotional obstacles that must be overcome before a caregiver can even decide to take respite.

Chris Nicholson, 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 Connie Ford, Director of 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, Connie 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. Connie Ford 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 Nicholson. 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 Bowers has a deep understanding of what it takes to help caregivers accept respite. Debbie led the fight for lifespan respite in Oregon and is now the Respite Care Administrator for the state, which leads the nation in offering 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. Linda Baker, 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."

Connie Ford suggests we remember that respite, like all decisions, reflects where the caregiver is on their journey. Connie's interfaith volunteer caregivers group does not offer medical or nursing help, but rather brings friendship and support to the family. Connie 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 Bowers 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.

Nancy Carson is a freelance writer and a long distance caregiver. She lives in Alexandria, VA.