Respite care: how to get a break without moving anyone permanently

Respite care is temporary care for someone you normally look after, so that you can stop for a while. A few hours, a day a week, or a fortnight.

It is the most under-used thing in this whole subject. Families ration themselves until something breaks, and then make a permanent decision at the worst possible moment.

The four kinds

Adult day programs. Your relative spends the day at a center — meals, activities, personal care, often nursing oversight and transport. Usually weekdays, often several days a week. Many specialize in dementia. This is the form that most reliably keeps a working caregiver working, and it is often the cheapest.

In-home respite. A paid caregiver comes to the house for a few hours or a day. Agencies are licensed and cover sick days; independent caregivers are cheaper and you become the employer, with the background checks and tax obligations that implies. Overnight is available and costs more.

A short stay in an assisted living or memory care community. A furnished room, all meals and all care, typically for a week to a month. This is what to use for a vacation, surgery, or a stretch when you simply cannot continue. Most communities offer it if they have a room free.

Hospice respite. If your relative is on hospice, Medicare's hospice benefit includes short inpatient respite stays for the caregiver — a defined number of consecutive days at a time. Ask the hospice team; this is frequently not mentioned.

Who pays

Mostly you. Adult day is generally charged by the day, in-home by the hour, short stays by the day at a rate usually above the community's normal monthly rate pro-rated.

Medicaid, in many states. Home and community-based services waivers commonly cover adult day and in-home respite. Waivers are capped and have waiting lists — join one early.

The VA. Eligible veterans can receive respite through VA programs, and the Aid and Attendance benefit can be used toward it. A county Veterans Service Officer will help you apply, free.

Medicare — only through hospice. Medicare does not otherwise pay for respite, because respite is custodial care. The distinction is the same one that governs everything else.

Long-term care insurance. Many policies cover respite. Check the policy; it is commonly forgotten.

Local grants and nonprofits. Alzheimer's Association chapters, faith communities and disease-specific charities sometimes fund respite directly. Your Area Agency on Aging will know what exists locally.

The thing nobody tells you

A short stay is the best trial run there is.

If a permanent move is coming, a week or two of respite in a community you are considering tells you more than any number of tours. You see how they handle your mother on a real Tuesday. She discovers the building is not what she feared. And if it goes badly, nothing is irreversible.

Families who go this route almost always find the permanent conversation easier afterward — sometimes because the parent raises it themselves.

Making it work

Book early. Adult day programs and good communities have waiting lists, and a room for the week you need is not guaranteed.

Expect the first time to be bumpy. Your relative may be unsettled, and you may feel guilty enough to cut it short. Don't. The second time is almost always easier.

Send the information ahead. A one-page sheet: medications and times, what they like to be called, what calms them, what upsets them, the routine, foods they will not eat. Good staff use it; it is also the document you will need eventually anyway.

Actually rest. Caregivers routinely use respite to catch up on the paperwork that has been piling up. Do some of that, and then sleep.

Use it regularly, not once. A standing Wednesday is worth more than a heroic week once a year.

Where to start

Call your Area Agency on Aging — local, free, and they hold the list of adult day programs, respite providers and waiver programs where you live.

For a short stay, our city and state pages list the communities near you and the level of care each is licensed for. Call and ask specifically for respite or short-term stay; not every community advertises it, and most will say yes if they have the room.

If you are reading this because you are past the point of coping, caregiver burnout is the companion guide.