An estimated 65.7 million Americans provide care for an older adult, or someone living with illness or disability, according to the National Alliance for Caregiving. “Caregivers often ignore their own health,” says Rick Greene, executive adviser of the National Alliance for Caregiving.
One-third of all caregivers describe their own health as fair to poor, often report suffering from depression, and are more prone to becoming physically ill. Studies have found that caregivers under “high strain” are at an increased risk of early death, heart disease and stroke.
But there are numerous inexpensive and often free ways to help caregivers reduce stress so they can maintain their own health.
As with most things related to elder care, caregivers can access resources through the Eldercare Locator and their local Area Agency on Aging, or by calling (800) 677-1116. Services include caregiver education and training, counseling and support groups, and emergency assistance.
Other free, nonprofit caregiving resources include:
Caregiver Action Network.
National Alliance for Caregiving.
Family Caregiver Alliance.
National Volunteer Caregiving Network.
Rosalynn Carter Institute for Caregiving.
The U.S. Department of Veterans Affairs, or VA, also has a Caregiver Support Program. Caregivers of veterans can access services online or contact a caregiver support coordinator at their nearby VA medical center.
Caregivers sometimes need to just get away. That’s where respite care comes in. Respite care is the provision of short-term care for a person to relieve the normal caregiver. But the cost can be high.
The national average in 2010 for an adult day care center was $67 per day; for a home health aide, $21 per hour, with most agencies requiring a 2- to 4-hour block of time; and $205 per day for a semiprivate room in a nursing home, according to the U.S. Department of Health and Human Services.
The National Family Caregiver Support Program provides federal funds to state Area Agencies on Aging to help caregivers better manage their responsibilities to keep their loved ones at home, including paid respite. To qualify, caregivers must be 18 or older, must be unpaid by the patient, and must be caring for a loved one age 60 or older, or of any age if they have Alzheimer’s disease or related disorders. Respite care ranges from several hours in an adult day care center or in the patient’s own home, to several days in a respite-approved facility.
State Lifespan Respite Care Programs, available in 32 states and the District of Columbia, provide “coordinated, community-based respite for family caregivers caring for individuals with special needs of all ages.”
Through the VA, veterans are eligible to receive up to 30 days of respite care annually while the family caregiver takes a break. Hospice patients receive up to 5 days of respite care paid for by Medicare at an approved facility. Medicaid patients also qualify for paid respite, usually through an adult day care program.
Because AAA and federal respite funds are limited, the Family Caregiver Alliance and the ARCH National Respite Network and Resource Center offer online searches for local respite providers and additional funding.
Universities are another place to find low-cost or volunteer respite care. Fraternities, sororities and other campus groups often require that members meet a volunteer component. Temple University in Philadelphia goes one step further through its Time Out Respite Program, which pairs the frail elderly with students trained to provide respite companionship for a semester. The cost is $8 an hour, for a minimum of 8 hours per month, and a $25 annual registration fee.
Caregiver retreats provide another outlet, and can be found through FCA and other caregiving organizations.
Well Spouse Association, a spousal support organization, offers respite weekends to its members, who pay a $30 annual membership fee. Jan Schein, who has attended respite weekends, says spending time with other spousal caregivers is worth the small cost. Schein’s husband recently turned 59 but was diagnosed with multiple sclerosis 20 years ago. He retired when his physical and mental health declined.
“It’s a chance to laugh and not have to do anything for anyone else,” Schein says. “Being with others who had all left their caregiving responsibilities behind empowered me to accept the fact that the illness that disabled my husband did not have to disable me, too.”
“Let us know what we can do to help” is a common sentiment expressed by friends and family, but it’s often turned down by caregivers, says Leah Eskenazi, director of operations and planning for the Family Caregiver Alliance. “They don’t want to burden other people. So they end up isolating themselves when they should be saying ‘yes.'”
Another reason to say “yes” to volunteer assistance: It’s free and could be helpful for smaller tasks.
If coordinating volunteers seems overwhelming, Eskenazi advises caregivers to write down their top 100 needs and keep the list handy in case someone offers to help.
Technology also can help caregivers assemble a care team. Several nonprofit health organizations, including the Alzheimer’s Association, the National Stroke Association and Colon Cancer Alliance use the online caregiving app through LotsaHelpingHands.com, which helps primary caregivers divide monthly duties.
Caregivers enter when and why they need help. Let’s say you want a caregiver to sit with your father on Sunday for 2 hours while you go to church, or you need someone to pick up Mom from adult day care on Tuesday. Volunteers then fill in where and when they can best help. Other free smartphone apps, such as CareZone and Unfrazzle, also provide the same caregiving scheduling.
Although not specifically geared to caregivers, many hospitals, medical groups and health plans, such as Kaiser Permanente, offer free or discounted health classes and seminars to patients and the community at large.
These organizations have online monthly event calendars, or you can be added to their mailing list of activities.
Some of Kaiser’s classes include the meditative martial arts of tai chi and chi gong ($28 for members; $32 for nonmembers), a series on managing depression (free), and a class on understanding anxiety (free to members; $120 for nonmembers). Cadence Health in Illinois offers a free “Dinner with the Doc” series, held at local restaurants and golf clubs.
Local chapters of the Alzheimer’s Association offer free social outings that Alzheimer’s patients and caregivers attend together. Events for an Alzheimer’s Association, Massachusetts and New Hampshire chapter, have included private guided museum tours, tickets to a musical production, and clay pottery-wheel classes.
Sometimes, caregivers just need to relax. “There really needs to be a release for caregivers. They need to be able to laugh and have fun,” says FCA’s Eskenazi. “Taking a walk in the park, reading a book — there are a number of ways to take a break that are free.”
Many caregivers begin giving assistance without any previous experience. It helps to get some training and create a care plan so you know what to expect and what can make your life easier.
Caregivers can access free training classes through a local Area Agency on Aging, including the 6-week program known as “Powerful Tools for Caregivers,” which National Alliance for Caregiving’s Green recommends. “The program actually teaches caregivers how best to take care of themselves,” he says.
Local chapters of the Alzheimer’s Association also offer free caregiver training classes, such as the Savvy Caregiver, a 2-hour, 6-week class designed for family caregivers of individuals with Alzheimer’s or related dementia.
“We’ve found the more information that caregivers have, the better able they are to manage their stress about caregiving,” Eskenazi says.