By Suzanne Mintz

It isn't possible to talk about self-care for family caregivers without talking about respite. More than any other service respite, or a break, is what family caregivers want most. The primary purpose of respite care is to provide relief from the extraordinary and intensive demands of ongoing care to someone with special needs, thereby strengthening the family's ability to provide care. Respite care is planned and proactive.

Respite means taking a break before extreme stress and crisis occurs.

The French Riviera is Nice, but the Coffee Shop will Do

A respite doesn't have to mean a week on the French Riviera, although that sounds pretty nice. It doesn't even have to be a weekend visiting friends, at least not at first. A respite can be as simple as lying on the couch with the lights dimmed listening to your favorite music, especially if you do it on a regular basis. It can be going to the movies or having a manicure every other week. You might even think of your three times a week exercise routine as a respite, if you enjoy it, rather than thinking of it as something you do because it is good for you.

What you do on a respite break, regardless of its length, is up to you. It has to meet your needs, break your tensions, and renew your spirit. It needs to be the right medicine to cure, or at least ameliorate your current stress. It needs to be for you, precisely because you do so much for others and because you deserve it.

Stop Feeling Guilty!

Next time you feel guilty for even thinking about taking a break, remember it is only partially for your benefit. Your loved one will reap a great deal of the benefit as well. Respites are guaranteed to take the edge off your tension, renew your energy and give you a fresh dollop of patience with which to pick up your caregiving duties once again. Respite is the primary mechanism you have as a family caregiver to refill your tank and thereby keep on going.

"Two family members volunteered to give us relief [from caring for my mom] for a week's family vacation. We had a wonderful time with our sons and came back refreshed."
—Ruthann S. McDonough, Carmel, Indiana

Better Than Therapy?

A number of studies have proven the value of respite to caregivers and their loved ones. A paper published in the Fall of 2001 in Focal Point, a journal of the Regional Research Institute for Human Services at Portland State University, explored the benefits of respite for parents of children with emotional and behavior disorders. It showed that respite enhanced the capacity to copy with stress, lessened the number of institutionalizations, and created greater optimism about the caregiver's ability to continue to provide care.

A study of caregivers of Alzheimer's patients published in the Journal of the American Medical Association in 1996 showed that respite and counseling lessens depression and helps caregivers avoid nursing home placement for their loved one for as much as a year.

Respite Resources

Easter Seals
230 West Monroe Street, Suite 1800
Chicago, IL 60606
800-221-6827

Easter Seals provides a variety of services at 400 sites nationwide for children and adults with disabilities, including adult day care, in-home care, camps for special needs children and more. Services and fees vary by site.

Faith in Action
Wake Forest University School of Medicine
Medical Center Boulevard
Winston-Salem, NC 27157
877-324-8411
Email: info@fiavolunteers.org

Faith in Action is an interfaith volunteer caregiving program of The Robert Wood Johnson Foundation. Faith in Action makes grants to local groups representing many faiths who volunteer to work together to care for their neighbors who have long-term health needs. There are nearly 1,000 interfaith volunteer caregiving programs across the country.

Family Friends
National Council on the Aging, Inc.
409 Third Street, SW
Washington, DC 20024
202-479-6672

This group provides respite (and other services) by matching men and women volunteers over the age of 50 with families of children who have disabilities or chronic illness. Programs are located throughout the country.

National Adult Day Services Association, Inc.
8201 Greensboro Drive, Suite 300
McLean, VA 22102
866-890-7357
This association provides information about locating adult day care centers in your local area.

National Respite Coalition
4016 Oxford Street
Annandale, VA 22003
703-256-9578
NRC provides a list of states that have respite coalitions. These state coalitions then list respite services available in their state. The majority of the information is focused on helping families of children with special needs, but lately there has been an effort to enlarge their referral base to include lifespan respite information. The NRC is working to gain passage of national lifespan respite legislation.

National Respite Locator Service
800 Eastowne Drive, Suite 105
Chapel Hill, NC 27514
800-473-1727, ext. 222
Access a list of sites nationwide. While the vast majority focuses on respite care for families of special needs children, the service now assists programs that provide respite for caregivers of adults and the elderly.

Shepherd’s Centers of America
One West Armour Boulevard, Suite 201
Kansas City, MO 64111
800-547-7073
Email: staff@shepherdcenters.org The organization 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.