Nobody can function in any role 24/7 without a break. Yet, that’s what some family caregivers do. Taking time away from the immense responsibility of caring for a loved one seems like a luxury: hard to afford and nearly impossible to manage.
Even so, finding a way to take a brief respite is a necessity for maintaining the caregiver’s physical and mental health. Moreover, the family member receiving care benefits from having a better-rested, reinvigorated caregiver looking after them. See what short-term respite entails and how to find respite care.
Life as a Family Caregiver
Family caregiving has degrees of difficulty. Taking full-time care of someone you live with — such as a spouse with a debilitating physical condition or a parent with Alzheimer’s or other dementia — is the hardest.
You’re always on the alert. You frequently suffer from broken sleep as you attend to your loved one’s needs at night. You may perform tasks such as patiently feeding them meals or taking care of their catheter. You coax them to drink so they don’t get dehydrated. You meticulously manage medications.
You listen for sounds of a frail person trying to get up on their own so you can intervene before they risk a dangerous fall. You accompany them to every doctors’ appointments and take notes. You sympathize, soothe and remind. With all this, you can forget to take care of yourself.
What Is Respite Care?
While that respite care definition sounds simple, respite can take various forms. It can mean a few short hours without caregiving responsibilities and worries, while a sibling steps in or an in-home caregiver takes over. Respite could involve dropping a parent or spouse off for adult day services. Respite might mean a long weekend away for caregivers during their loved one’s temporary stay at an assisted living facility.
Any successful respite involves some planning and preparation, for instance when using adult day services to enjoy that period of comparative freedom and downtime.
“It can make a huge difference for the caregiver,” Bradley Bursack says. “Yes, you have to get them ready, or get them on the bus or drop them off,” she says. “(But then) you can have a few hours that day, whether it’s to get yourself organized and your shopping done, or even go out to lunch with a friend. You would have that time.”
Understandably, your loved one will likely need time to feel comfortable when you introduce a new respite arrangement. You probably don’t want to start on the same week you’re attending a committee meeting or taking a class, she suggests.
How to Find Respite Care
Once you realize you need brief respite, how do you find it? You might turn to other family members or friends, or look at professional forms of respite.
Respite Care Types
Respite care can take place in a variety of settings including:
— Adult day care centers. Also called adult day services, these programs offer assistance and supervision for older adults during the day. Adult social day care offers respite care, meals, recreation and social activities and may include some health services. Adult day health care provides respite care and more-intensive therapeutic, health and social services for older adults with serious medical conditions who otherwise might need nursing home care.
— In-home caregiving. In-home respite care brings professional caregivers such as certified nursing assistants, or when needed, a visiting nurse to provide care where the older adult lives. In-home services can encompass help with preparing meals, personal hygiene, toileting and other needs, depending on the individual. This respite could encompass a few hours during the day or overnight stays.
— Assisted living stay. Family caregivers can arrange short-term stays in some assisted living facilities, for instance to go on vacation or attend an out-of-town event. Medication assistance, meals, help with activities of daily living and a variety of social activities are all included.
— Informal family respite. Siblings or other relatives, friends and other volunteers through community networks like CaringBridge let people pitch in to give the primary caregiver a break.
Supporting Caregiving Families
Respite care is by far the most popular resource for caregivers associated with the National Family Caregiver Support Program, established by Congress in 2000 as part of the Older Americans Act.
The NFCSP provides funding though grants to private and voluntary agencies that assist family caregivers with services including respite. NFCSP funding is also provided to every state, territory and tribe, requiring the establishment of a basic set of services and supports to family caregiver.
More caregivers use respite care than other NFCSP offerings such as education or training, individual counseling and support groups combined, according to a December 2018 report from the Administration for Community Living.
“With those supportive services, respite included, caregivers said that they could care three years longer for their loved they didn’t have that service, and how much it reduced caregiver burden and stress,” says Sandy Markwood, the CEO of USAging, the national association representing the network of Area Agencies on Aging. “There’s the value of the service itself. But giving people the opportunity just to renew themselves, so they can come back in refreshed to care for their loved one — I don’t think there’s a dollar value you can put on that.”
According to NFCSP, respite care involves trained caregivers who provide care for individual, either at home or at adult day facilities, so that the family caregivers can rest or attend to their own needs.
Using services like respite, for at least four hours per week, reduced caregiver burden over time and helped them continue in their role for longer periods, which is “an important factor in delaying or preventing the institutionalization of the care recipient,” according to the ACL report.
The importance of family caregivers, issues they face and need for meaningful supports like respite care are increasingly recognized through government policies and programs. The RAISE Family Caregivers Act was enacted in January 2018 to address the diverse and complex issues faced by family caregivers through development of a national family caregiving strategy.
When People Seek Respite
“Most family caregivers don’t identify as caregivers, so oftentimes people don’t search for things like respite until they are overwhelmed and stressed,” Markwood says.
Siblings may share in caregiving responsibilities, but that doesn’t work for someone who is an only adult child. Some may turn to online communities like CaringBridge, where family members and friends can all pitch in, for instance when a loved one is recovering from a fall. “It’s great if you have that kind of network,” Markwood says. The issue can become how sustainable the response really is.
“Caregiving often extends beyond an episodic event into months and years,” Markwood notes. “So, trying to continue to maintain that level of support over time becomes difficult, the families find. It’s one thing if Mom and Dad are returning from a hospital stay and they need help for a couple of weeks, or maybe a month or so. But if it’s three or four years? It’s a different situation.”
As signs of overwhelming stress arise, that means you need a respite. “It’s just that overwhelming anxiety when, oftentimes, the caregiver’s health suffers,” she says. “They are feeling depressed. They are starting with physical symptoms that weren’t there before — because they’re exhausted. Really, when the caregiver goes down health-wise, then not only do they go down, but the person they’re caring for is impacted, too.”
Drain of Caregiving
In the past, the traditional ratio of caregivers to older adults was seven-to-one, says Nora Super, executive director of the Milken Institute Center for the Future of Aging, part of the Milken Institute, a nonprofit, nonpartisan think tank based in Washington, D.C. But family sizes have gotten smaller, and relatives are often scattered throughout the country. “We don’t have the built-in network of family members that used to be available when people lived in the same town for generations,” she says. “So the ratio is actually decreasing with a prediction of four-to-one by 2030.”
The unpaid role can put a tremendous strain on someone who’s already coping with multiple obligations. “Family caregivers often can’t juggle all the responsibilities,” Super says. “Of course, many have children on their own, they’re having to care for their elderly parents or have full-time jobs.”
Inequities exist in the toll that caregiving takes. “This disproportionately impacts lower-income populations that have hourly wages or (work in) a gig economy,” Super says. Health conditions that can lead people to need caregiving also have unequal ramifications. “A lot of these diseases, especially Alzheimer’s disease, disproportionately affect people of color, especially Black Americans and Latino Americans,” she says. “So there’s really a critical need there.”
Eventually, family caregiving may become untenable. “What typically happens, if somebody becomes completely burned out or they can’t make it work, then they actually have to put their family member in a nursing home,” Super says. “So, by providing services, you can actually save money in the long run because these people can take a break, go on a vacation or something and come back.”
That can ultimately reduce the expense of nursing home care that Medicaid might otherwise have to cover.
“Most people really want to care of their loved ones,” Super says. “They see it as really meaningful and rewarding. But it’s exhausting too.”
Advantages of Respite Care
Respite offers advantages to the person receiving care too. “It’s having a caregiver who is refreshed,” Markwood says. “One who is able to care, and able to be there and be present.” When a caregiver has a chance to take a breather, “It’s renewing on both sides,” she says.
With respite, family caregivers can make it to their own doctors’ appointments, go to the grocery store or watch a child’s soccer game, Markwood says. “Or it’s getting away for a weekend so they could just spend time with other family members or go to a college graduation.” Respite means “just making sure that their loved one is safe and secure so they can go off and do things that are important in their lives, but not worrying the whole time about the care their loved one is getting.”
Bradley Bursack agrees that everyone can benefit from respite. “The misunderstanding is that our loved ones will lose out if we take any time off,” she says. “But it goes back to what they will gain if we take better care of ourselves.”
Initially, it may seem less complicated to just soldier on without a break in the routine, Bradley Bursack admits. “But some kind of respite, even if it’s just an afternoon a week, can feel like a vacation,” she says. “So, even if it’s a tiny amount and you can arrange it with a sibling, if you can even do that much — and not everyone can — that can mean a lot.”
Respite Care Costs
Respite care can be expensive. While rates vary by type of care and location, these are average costs:
— Adult day services. The average daily rate for up to eight hours in U.S. adult day care facilities is $78, according to the 2021 Cost of Care Survey conducted by Genworth Financial. Availability of these services has been “decimated” by the pandemic, Markwood notes, so check with area providers before making any plans.
— Assisted living facilities. The average rate for one day of assisted living facility care is $148, according to the Genworth survey. However, respite care might not be offered on an occasional, short-term basis, and there may be a minimum stay requirement.
— In-home respite care. The average cost for a home health aide is $27 an hour, or $169 per week. “If you sign up for in-home care, usually there’s a minimum package that these agencies will accept,” Bradley Bursack points out. So you may not be able to just hire a home health aide for an hour or two at a time, or for a single afternoon, for example.
Respite Care Challenges
People may push back at being attended to by anyone other than their comforting family caregiver, at least at first. That reluctance can be heightened when respite involves a short stay in an assisted living facility.
With that kind of arrangement, Bradley Bursack says, “I’m a little leery because I’ve seen so many move from their home into a care facility, and unless they can truly understand this is only for few days, the adjustment is huge.” Anxiety about your loved one’s adjustment can keep you from relaxing and defeat the purpose of respite. However, it can work, she adds.
Your loved one’s cognitive status impacts their ability to understand the situation. Ideally, you can explain how that temporary stay allows them to get their insulin injections as needed, or be protected from falls during the short separation, Bradley Bursack says.
Hiring in-home care may be a simpler possibility, she notes. As with most aspects of caregiving, she adds, there aren’t cut-and-dried answers or solutions.
Respite Care Near Me
These are good starting points for family caregivers seeking respite care and support:
— ARCH National Respite Network and Resource Center. Funded by the Administration for Community Living, ARCH offers the National Respite Locator among myriad services for family caregivers.
— National Adult Day Services Association. The NADSA directory lets users find adult day services throughout the country.
— Eldercare Locator and call center. The interactive tool connects caregivers and older adults to their Area Agency on Aging, which can direct users to local services including respite care. They can also call 800-677-1116 to speak with an agency staff member.
— Disability Services. To ask about services like respite for caregivers of younger people who have a disability such as a cognitive or mobility impairment, call the Disability Information and Access Line at 888-677-1199.
— Alzheimer’s Association. For caregivers of a family member with Alzheimer’s disease or other dementia, these are helpful respite-related resources.
— Department of Veterans Affairs. VA medical centers can give the veteran’s caregiver a break by taking over that care for a limited time, for up to 30 days in a calendar year. This respite care may be provided at the VA medical center, in a community facility or in the veteran’s home.
A geriatric care manager can be a professional ally for family caregivers, with extensive knowledge of local options. They can organize respite like arranging for the older adult to move to an assisted living residence for a week. Some geriatric care managers are quite hands-on, Bradley Bursack says, actually going to the home themselves to offer respite or providing transportation to the respite care site.
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