By Linda A. Cronin
An important and frequently overlooked part of the caregiving process is taking care of the caretaker. According to the Family Caregiver Alliance (FCA, www.caregiver.org), 52 million informal and family caregivers provide care to someone aged 20 or more with a disability or who is ill. Family members also continue to be the largest source of unpaid caregivers in the U.S. The numbers are estimated to reach 37 million caregivers by 2050, an increase of 85% from 2000.
Respite care gives caregivers a much needed break. The dictionary defines respite as “a delay or cessation for a time, especially of anything distressing or trying, an interval of relief.” Respite offers the caregiver time away from the dual stresses and strains of providing care and managing work, their household, and family life. Most caregivers are employed, and nearly one in five provides more than 40 hours of care per week. Respite care also allows the care recipient a break from the caregiver and exposes them to different people with varied skills. Bonnie Denowski, a Caregiver Community Action Network volunteer (CCAN) with the National Family Caregiver Association (NFCA, www.nfcacares.org), said, “The caregiver’s number one need is to get some relief and to get out.” If they don’t get the help they need, she said, it often leads to feelings of hopelessness, depression, and isolation. Denowski said it is important to realize caregivers “often don’t self-identify” their need for respite. She added, “A shortage of respite care workers exists because respite care is reimbursed at a lower pay rate.”
Respite can be crucial in delaying or deterring placement of a person with a disability in a nursing facility. Depending on the need and situation, respite care services can include adult day care and homecare services as well as overnight stays in a facility. They may be provided for a few hours, days, overnight, a week, or weekend.
For some care recipients, adult day care offers a chance to socialize, enjoy peer interaction and support, and to receive health and social services in a safe, familiar environment. It offers a break when someone needs supervision or help but does not require placement in a 24-hour nursing facility. Two types of adult day care are available. Social day care provides social activities, meals, recreation, and limited health-related services. Adult health day care offers more intensive health, therapeutic, and social services for individuals with severe medical problems. Adult day care is useful for caregivers who cannot stay home all day to provide care, supervision, and companionship.
In-home respite care combines health care and support services to help people with disabilities to continue living at home as independently as possible. Two types of home care are available. Home health care services provide medical care such as medication assistance, nursing services, and physical therapy. Nonmedical home care services include personal care, companionship, housekeeping, cooking, and other household activities.
Institutional respite care in nursing homes, assistive living centers, and occasionally hospitals, provide respite care for individuals with disabilities who need to be away from home overnight or for several days. They can handle people in need of more care. But the cost of paperwork often discourages their use.
The cost of respite care services depends on the type of services needed and who provides the services. It may be possible to ask friends or family members to help out. Some churches or local organizations may have volunteers that can help. In certain circumstances, Medicare, Medicaid, or private insurance may pay for some respite services.
Caregivers should remember that planning regular respite is part of taking care of yourself. It’s easier to arrange regular respite while you are still healthy than waiting until you are worn out, or in a crisis. Keeping a notebook with information about the person in your care will make it easier when someone comes into the home to help out.
A bill, the Lifespan Respite Care Act (S1283/HR3428), has been introduced in both the Senate and the House and is currently pending. The Act authorizes competitive grants to states to make respite care available to family caregivers, regardless of age or disability. According to the National Respite Coalition (www.archrespite.org/NRC.htm): “The bill allows grantees to identify, coordinate, and build on federal, state, and local respite resources and funding streams, and would help support, expand, and streamline planned and emergency respite, provider recruitment and training, and caregiver training.”
Now is the time for caregivers to unite and urge their senators and representatives in Congress to pass the Act.
Linda A. Cronin is a freelance writer and desktop publisher who lives in New Jersey.
