Respite care: how caregivers can take a real break

What respite is

Respite is short-term care for the person you look after, so that you can have a break. The ARCH National Respite Network describes it as planned or emergency care for a child or adult with special needs, provided to give temporary relief to family caregivers.

It can be a few hours, a full day, a weekend or longer. It can be used for rest, for your own medical appointments, for work, for other family members, or simply because caring for someone every day without a pause is not sustainable. Needing it is not a failure. It is part of keeping care going.

In-home respite

In-home respite brings someone to the house, so the person you care for stays in familiar surroundings. ARCH lists several forms this can take.

• Home-based services from an agency, with a trained and sometimes licensed worker.
• Sitter-companion services from people trained to care for children or adults with special needs.
• Self-directed respite, where the family chooses and trains its own provider, sometimes paid through a voucher program.
• Informal respite from trusted family members, friends or volunteers.

Out-of-home respite

Out-of-home respite means the person you care for spends time somewhere else, from a few hours to an overnight stay. ARCH describes options including adult day services, center-based programs at places like community centers or churches, host-family homes, group homes, camps, and residential facilities that set aside beds for short stays.

Overnight or multi-day respite tends to need more planning, because the setting will want to know medical needs, medications, routines and what helps on a hard day. It is worth arranging a short first stay before you need a longer one.

How to arrange it

Start before you are at breaking point. Respite is much easier to set up as a plan than in an emergency. If you already know of a date you will need cover, such as your own surgery, travel or a family event, start calling well ahead, because many programs need paperwork and a visit first.

• Search ARCH's National Respite Locator at archrespite.org for providers in your state.
• If the person you care for is an older adult, the Eldercare Locator (1-800-677-1116) can connect you with local services for older adults and their families.
• Ask the person's care team, social worker or case manager what respite options they know of locally.
• Check coverage. ARCH lists Medicaid waivers, private insurance, state and federal funding, sliding fees and vouchers as possible ways respite is paid for. Confirm with the plan or program what applies to you.
• Visit or call ahead, meet the staff, and do a short trial stay or visit.

When the person you care for has a mental health or substance use condition

Respite is not only for physical disability or older age. Families caring for someone with a serious mental illness or a substance use disorder carry a heavy load too, and some programs offer respite specifically for those situations, including short supervised stays in a residential setting.

When you ask about a program, be specific about needs: medications, triggers, any history of crisis, and what the person can and cannot manage alone. Ask how staff handle a mental health emergency and who they contact.

What to have ready for whoever takes over

A one-page summary makes handoffs safer and calmer. Keep it current and give a copy to anyone providing care.

• Current medications, doses and times, and the prescriber's contact details.
• Medical conditions, allergies and anything that needs watching.
• Daily routine: meals, sleep, bathing and what tends to help or upset.
• Who to call, in order, if something goes wrong.
• Insurance cards and any legal documents the provider asks for.

Common worries, and looking after yourself

Many caregivers hold off because of guilt, or because the person they care for does not want anyone else involved. Starting small often helps: a few hours with someone they have already met, then a longer stretch. Framing it as time for them, an outing or a change of scene, can make it easier to accept than framing it as a break from them.

It is also normal to worry that no one else will do it right. Clear written notes, a trial run and a phone call to check in usually ease that more than waiting does. Ask the provider how they will reach you during the stay and what they will tell you afterwards.

Caregivers often put their own health last. If you are exhausted, low, anxious or no longer sleeping, that deserves care in its own right, and a therapist or your own doctor is a reasonable place to start. Support groups for caregivers, including groups for families of people with mental illness or addiction, can also help you feel less alone with it. If you or the person you care for is in crisis, call or text 988, or call 911 if anyone is in immediate danger.