Taking care of an aging or ill family member can be enormously rewarding but also exhausting and emotionally draining.
More than a third of family caregivers rate their job as highly stressful emotionally, and nearly 1 in 5 reports a high level of physical strain, according to the "Caregiving in the U.S. 2020" report from AARP Public Policy Institute and the National Alliance for Caregiving (NAC).
Plowing through might feel doable in the short term, but too much time without a break can lead to caregiver burnout, depression and health problems. Every caregiver needs a caregiver — someone who will tend to your loved one for a few hours, days or weeks so you can take care of yourself.
Respite care can help you make it through the long haul, and that’s good for both you and your loved one. But only 14 percent of family caregivers avail themselves of respite services, even though 38 percent believe doing so would help them, the AARP/NAC study found.
Respite can come in many forms: from family and friends; volunteer groups; faith-based organizations; local, state and federal agencies; or paid respite workers. It can take place in the home, or at an outside facility such as an adult day care center.
Some long-term care insurance plans cover part of the cost of respite care.
Design a family respite care plan
The first step in developing a family plan is thinking through your needs and who’s available to help fill them.
• What do you need? Three hours off, twice a week? Twenty-four hours away from the house? A regular day (or night) out with your spouse or friends? A combination of the above?
• What does your loved one need? Meals? Laundry? Light housekeeping? Personal care? Daily walks? Medical help? List every job, large and small.
• Who can pinch-hit? Cast a wide net. List family near and far, your friends and your loved one’s friends.
Call a family meeting
Include out-of-town siblings, adult children and extended family via video chat. Explain that you need regular and as-needed time away from caring for the loved one you share.
A few elements are key to a successful family caregiving meeting.
• Be specific. Don’t expect your family to automatically know your needs.
Tell them about what you and the care recipient require. Will they need to make meals? Administer prescriptions? Simply offer comfort and conversation?
• Be flexible. Offer options — that makes it easier for family to pitch in.
If family members beg off because work and kids eat up weekdays, ask if they can cover Friday nights or an early morning run to adult day care.
A sibling who can’t contribute time may be able to contribute money to cover a car service or a once-a-week professional caregiver. Your out-of-town sister and her family can come to stay for a week while you take a vacation.
• Answer questions. Many people expect caregiving to be overwhelming, or they fear making a mistake. Ask about concerns and address them as best you can.
For example, if anyone is uneasy about bathing, dressing or helping a loved one go to the bathroom, consider arranging to have a home health worker come during their respite shift.
If the person receiving the care has mobility issues, demonstrate how to assist. Let your substitutes know you’ll leave written instructions about meals and medicine, and phone numbers for backup care providers and your loved one’s medical team.
• Consider using a free online scheduler such as Lotsa Helping Hands or CareCalendar that lets you specify what you need and allows others to sign up to provide services and get updates on how your loved one is doing. Email the link and login to your family and friends and to your loved one’s friends and neighbors.
Longtime friends and neighbors often are glad to spend a few hours a month helping someone with whom they share a history.
Finding outside respite care
Numerous local and national organizations offer information and contacts for paid and volunteer respite-care services. In some cases, federal agencies such as the Department of Veterans Affairs and Medicare offer help covering the cost.
A good place to start your search is the National Association of Area Agencies on Aging. You’ll find contacts for local agencies that can connect you with visiting companions, hourly in-home respite care, adult day care and overnight respite providers.
The association also can tell you about no- or low-cost respite programs in your area and whether financial assistance is available from government programs or other sources.
Several government and nonprofit agencies offer free respite help, among them:
- Faith-based caregiving organizations, including local branches of Faith in Action or Interfaith Caregivers. Many have programs that will set up regular two- or three-hour social visits with your loved one, giving you time to spend on yourself.
- Elder Helpers, a nonprofit online service that prescreens and posts pictures and bios of local volunteers who want to visit older people and help them by doing basic chores. The visits or services come at no charge.
- Senior Corps, a branch of the federal Corporation for National & Community Service. Its Senior Companions program matches volunteers older than 55 with seniors living independently to provide companionship, help with daily tasks and a break for family caregivers.
Another option is adult day care. There are more than 4,000 such programs in the United States, offering supervised activities, social interaction, meals and limited health services. Most centers are open five days a week and some have evening and weekend activities.
Costs for adult day care can range from $25 to more than $100 a day, according to the federal Administration for Community Living. Rates and regulations vary depending on where you live, the type of services offered and whether you’re eligible for government financial assistance (for example, through Medicaid, the Veterans Health Administration or the Older Americans Act).
You’ll find more information in the Caregiver Resource Center article on adult day care options.
Click, connect to respite care
A number of groups are trying to help combat caregiver burnout through respite care:
• The Alzheimer’s Association offers information and advice on respite care when you’re caring for a patient with progressive memory loss.
• The Department of Veterans Affairs provides up to 30 days of respite care a year for people caring for former service members. Click on the tabs Am I Eligible? and What Services Can I Get? for details.
• The National Adult Day Services Association has consumer information on adult day care services and a tool to find centers in your area.
• Respite coalitions in many states bring together public and private organizations to advocate for and coordinate respite programs for family caregivers.
Editor's note: This article, originally created in 2017, has been updated with 2020 information.