Respite care for caregivers

What is respite care for caregivers?

Respite care for caregivers is temporary care for the person you look after, provided by someone else, so that you get a break. The word respite simply means a pause. The care might last a few hours while you go to your own doctor's appointment, a full day each week so you can work, or a week or two while you travel or recover from surgery.

Respite isn't a luxury. When you care for a parent, spouse or child every day, you're doing a job with no shifts and no days off. Caregiver respite is the time off. Without it, many caregivers burn out — and when the caregiver can't go on, the person they look after often ends up in a nursing home sooner than anyone wanted.

Respite can be planned, like a standing Tuesday break, or used in an emergency, like when the caregiver is suddenly in hospital. Many programs offer both.

Types of respite services for caregivers

There are three main kinds of respite services for caregivers. Most families end up using more than one.

Some communities have other options too: volunteer companion programs, faith-based respite, overnight respite houses, and camps or weekend programs for children and adults with disabilities.

In-home respite: in house respite care that comes to you

In-home respite is the most common kind. An aide from a home care agency — or a trusted person you choose — comes to the house for a few hours or a full day and takes over. Some families call this in house respite care. The aide can help with meals, bathing, medication reminders and company, just as you would.

The advantages: your relative stays in their own home, the routine barely changes, and you can leave or stay and rest in another room. It's usually the easiest place to start, especially for someone with dementia who is unsettled by new places.

To arrange it privately, you'd hire a home care agency by the hour — see how to choose a home care agency and part-time and short-term home care. Through a public program, the agency is often chosen from the program's list, and in some programs you can pick a friend or relative as the respite worker.

Adult day programs as respite

Adult day programs offer supervised care during the day, usually on weekdays, in a center with meals, activities and other people. Some — often called adult day health — include nursing, therapy and help with personal care. Others are social programs focused on company and activities.

For working caregivers, adult day care can be the difference between keeping a job and quitting. For the person receiving care, it offers friendship and structure that can be hard to get at home. Many Medicaid programs and the VA cover adult day services for people who qualify.

Short-stay respite in a facility

Short-stay respite means your relative stays for a few days or weeks in an assisted living community or nursing home. It's the answer when you need to travel, have surgery, or simply need several nights of unbroken sleep.

Book early — respite beds are limited in many areas — and visit first. Bring a written summary of routines, medications and preferences. Some families use a short stay as a trial before deciding whether a move would ever make sense; see assisted living vs. home care.

Why caregiver respite matters

Caregivers are more likely to report stress, poor sleep and health problems of their own, and the risk rises with the hours of care. Regular breaks help. They let you see your own doctor, keep friendships and work going, and come back with more patience.

Respite also protects the person you care for. A rested caregiver makes fewer mistakes with medications, lifts more safely and catches changes in health sooner. And if the caregiver's health collapses, there is often no one to step in. That's why caregiver support programs treat respite as a core service, not an extra.

How to pay for respite care

Respite can be paid for privately, but several public programs help. The main ones:

Private-pay respite at home costs the agency's hourly rate, often with a minimum visit length. See the cost of in-home care and private pay home care. Medicare generally doesn't pay for respite for ongoing care needs; the exception is hospice, which covers inpatient respite stays of up to five days at a time, on an occasional basis, for someone enrolled in hospice. Read does Medicare pay family caregivers for Medicare's limits.

Caregiver respite program examples by state

Every state has some kind of caregiver respite program. A few examples show the range:

• New Jersey runs a Statewide Respite Care Program through its Division of Aging Services for unpaid caregivers of adults with functional impairments, with income and asset limits and a sliding-scale fee. Call 1-877-222-3737. See New Jersey.
• Pennsylvania's Caregiver Support Program, run by local Area Agencies on Aging, includes respite and reimbursement of some caregiving costs. See Pennsylvania.
• North Carolina's Project C.A.R.E. offers dementia caregivers consultation and consumer-directed respite, where the caregiver chooses who provides it. See North Carolina.
• Massachusetts offers respite through its Family Caregiver Support Program at local Aging Services Access Points. See Massachusetts.
• California's 11 Caregiver Resource Centers offer respite alongside counseling and care planning. See California.

For the full picture of these programs, read family caregiver support programs.

Medicaid, respite and paid family caregivers

If the person you care for is on Medicaid, ask their case manager or care coordinator whether respite is included in their plan. It often is under home and community-based waivers — for older adults, people with physical disabilities, and people with intellectual or developmental disabilities.

There's a second way Medicaid helps: in every state, at least one Medicaid program can pay a family member to be the caregiver. If you're already doing the work unpaid, getting paid for it can change what's possible — including paying for your own breaks. In some programs, another relative can be paid for respite hours while the main caregiver rests.

Programs vary by state: CDPAP in New York, IHSS in California, IRIS in Wisconsin, Consumer Directed Services in Texas and Structured Family Caregiving in several states. Start with how to get paid to care for a family member or check eligibility.

How to find a respite program near you

1. Call your Area Agency on Aging. Use the Eldercare Locator at 1-800-677-1116. Ask about respite through the family caregiver support program and any state-funded respite.
2. Search the National Respite Locator run by the ARCH National Respite Network at archrespite.org.
3. Ask the Medicaid plan or case manager, if your relative is on Medicaid.
4. Veterans: ask the VA social worker or call the VA Caregiver Support Line at 1-855-260-3274.
5. Disease organizations — the Alzheimer's Association Helpline (800-272-3900, 24/7) can point dementia caregivers to local respite.

Also see home care near me for local agencies that offer respite by the hour, and your relative's state page — for example Florida, Ohio or Georgia.

Making respite work for the person you care for

The first respite visit can be hard — for both of you. A few things help:

• Start small. A two-hour visit while you're home in another room, then longer ones.
• Write it down. Routines, medications, food likes and dislikes, what calms them, who to call.
• Use the same person whenever possible. Consistency matters, especially with dementia.
• Frame it positively. "A friend is coming to help with lunch" lands better than "I need a break from you."
• Actually rest. Don't spend every respite hour on errands. Some of it should be yours.

Guilt is normal. It helps to remember that respite is care for the person you love, too: it keeps their caregiver well enough to keep going.

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