Caregivers: You deserve a break

Being a caregiver for a family member — particularly for someone with substantial needs — is a labor of love. Whether you're caring for a spouse, parent, adult child, grandchild, or another family member, the job has high demands, grueling hours, no pay, little time for yourself, and, in some cases, health risks. "Meeting a loved one's needs can come at the cost of the caregiver's own well-being. While the role can be deeply satisfying, it can also lead to burnout and risks for high blood pressure, fatigue or sleep problems, depression, isolation, significant weight loss or weight gain, and even premature death," explains Marie Clouqueur, a therapist and geriatric case manager in the Division of Geriatrics at Harvard-affiliated McLean Hospital.

You need a breather now and then — to exercise, go to doctor appointments, see friends, or simply recharge — to maintain your equilibrium and have the strength to continue as a caregiver. The way to do that is with respite care.

What is respite care?

Respite care involves a substitute caregiver giving you a break. It can last for just a few hours or as much as a few weeks. Respite care might come from a family member or friend who volunteers to help out. Or it can come from outside services such as adult or child day care centers, short-term stays (seven to 30 days) in a skilled nursing or memory care facility, professional child care services, or private duty care.

A private duty care agency can send someone to be with your loved one up to 24 hours per day. Agencies can provide several types of professionals for adult or pediatric care, depending on your loved one's needs: a registered nurse; a licensed health aide who can provide hands-on physical care (such as help bathing, eating, or using the bathroom); or a companion, who can help with meal preparation, light housework, or transportation. (A companion for healthy children falls under professional child care.)

Costs

Respite care can be expensive. For example, the national rate for private duty care workers is about $26 per hour. It's $12 to $20 for professional child care. A temporary stay at a nursing home might run about $200 per day.

Many nonprofit groups (such as senior centers and religious organizations) offer volunteer respite care services. And there are hundreds of organizations — including federal and state governments, the Veterans Administration, and nonprofits (such as Easterseals) — that offer financial assistance for respite care. The pots of money are often small and restricted, and eligibility requirements vary.

Finding respite care

Several government and nonprofit organizations can help you find respite care (and potential funding) that suits your needs. The primary places to call are your state's Lifespan Respite Coalition, your local Area Agency on Aging, and (for veterans) the U.S. Department of Veterans Affairs.

When you contact an agency, be specific about what you want. "These agencies offer a lot of services, and you want to get the right person. Ask for the caregiver coordinator. When you speak to the coordinator, explain that you need a break and you're looking for respite care and a way to pay for it," suggests Jill Kagan, director of ARCH National Respite Network and Resource Center. ARCH is a national resource program that can guide you to respite services in your area. Its website has information and links for all of the agencies we've mentioned.

Transitions

Having someone substitute for you as a caregiver can feel uncomfortable at first. Here are three issues that often come up, and ways to cope with them.

Concern for your loved one's well-being. Check the caregivers' credentials and spell out what you want them to do. "Be clear about your loved one's needs, ask if the program can accommodate them, how you'll know if caregivers are actually following your instructions, how often you'll hear from them, and how often you can contact them," Clouqueur says. For more questions to ask, visit www.health.harvard.edu/rcf.

Difficulty breaking the news. You may wonder how to explain respite care to your loved one. "Tell them what your goal is for this care. For adult day care, you could say, 'You're going to a place with peers who want to meet you and get to know you, where you can do some enjoyable activities together.' For private duty care, you could say, 'I'm bringing in someone who can make sure you're comfortable and find interesting things for you to do while I'm gone,'" Clouqueur says.

Guilt about leaving. It's normal to feel guilty about getting time to yourself. "Consider it an experiment, and look at the outcome. Did the benefits of respite care outweigh the costs and feelings of guilt?" Clouqueur asks. "Taking a break can help you restore a sense of who you are, and allow you to bring your 'best self' back to your role as a caregiver."