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Respite care: how people actually get a break
The word covers everything from four hours on a Tuesday to a week while you go to a wedding. Here is where caregivers say the hours actually came from.
Respite is one of those words that gets used as though everybody already knows how to get some.
It just means somebody else is responsible for a while. Four hours, a day a week, a few nights. Below is where caregivers say those hours actually came from, roughly in order of how often people find them.
Rules and funding vary enormously by state and by program, so treat all of this as a list of things to ask about rather than a description of what you will be offered.
Your Area Agency on Aging is the first call
Every part of the US is covered by one, and they are the single most commonly recommended starting point among caregivers who found help. The Eldercare Locator, run by the federal government, is how most people find theirs.
What they can do varies. Sometimes it is a funded number of respite hours, sometimes a list of local programs, sometimes a caseworker. It is free to ask, and people who put it off for a year almost always say they wish they had not.
Adult day programs
A building, a day, activities, lunch, sometimes a nurse and transport. Often the most hours for the least money, and frequently subsidized.
Caregivers who expected refusal are often surprised. People who resist the idea for weeks regularly end up going happily, partly because it is a room with people in it and their house is not.
The usual advice is to visit without your person first, and to plan on a few sessions before judging it.
The hospice respite benefit
If your person is on hospice, Medicare has historically included short inpatient respite stays, which people describe as a handful of days at a time. Used for surgery, a funeral, a wedding, or simply because the caregiver was finished.
Many families never learn this exists. If hospice is involved, ask them directly what respite is included.
Medicaid waivers, if they apply
Home and community based waiver programs fund in-home hours in most states, and in some states a family member can be the paid caregiver. Eligibility, waiting lists and what is covered differ so much between states that no general description is worth much.
Two things caregivers say consistently: apply before you think you qualify, because the lists are long, and ask specifically about respite hours rather than care hours, because they are sometimes counted separately.
Paying for a few hours privately
Not an option for everyone, and worth saying plainly that cost is the reason most people do not do it.
Where people do, the pattern that works is small and regular rather than large and occasional. The same person, the same three hours, the same day each week. Your person gets used to them and so do you.
The part nobody warns you about
Arranging the break is not the hard part. Using it is.
Caregivers describe spending the first free afternoon cleaning the house, doing the paperwork, or sitting in the car in a parking lot unable to think of anything they want. Then feeling guilty for having wasted it.
The advice that helps is to decide beforehand what the time is for, and to expect the first two or three to be strange. Nobody switches off on command after two years on duty.
One caregiver: "I got four hours a week in March. It did not fix anything. It is the only reason I am still doing this in September."
That is the honest version of what respite does.
Everything here is what worked for people doing this at home. It is not medical advice, and Kind Soup is not a medical or emergency service. If somebody is in danger, contact your local emergency number.
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- Sundowning: what actually helps at four in the afternoonShe is fine all day. Around four it starts. Here is what caregivers do about the hardest two hours of the day.