Caregiver burnout, and what actually changes it

It isn't a feeling. It is arithmetic.

Burnout gets talked about as an emotional state, which makes it sound like something you could think your way out of with a better attitude. It isn't that. It is what happens when the demand on somebody exceeds what they can supply, for long enough, with no scheduled relief.

Attitude doesn't change either side of that. Hours do.

What it actually looks like

Not sadness. Most burned-out caregivers aren't sad. They're flat, efficient and slightly numb, and they're getting a great deal done.

• You've stopped going to your own appointments, and you couldn't say when the last one was.
• There is a small dread before the phone rings, even when it is good news.
• You're irritable with the person you're caring for, and then ashamed of it, and the shame is heavier than the irritation.
• You've stopped seeing people, and you tell yourself it is because you're busy.
• Your sleep has changed, and you listen for sounds at night even when nobody needs you.
• You've had the thought "I can't keep doing this," followed immediately by guilt about having had it.

That last one isn't a sign of weak character. It is an accurate report from somebody who is closer to the data than anybody else.

Why "take care of yourself" is useless

Because it is advice aimed at a person with free hours, offered to a person with none. A bath and an early night don't touch a seventy-hour week.

The only thing that changes the arithmetic is somebody else taking some of the hours. That is what respite is, and everything else is decoration on top of it.

What respite actually is

The word covers a wide range, and the range matters more than the word.

A few hours. Somebody comes in so you can leave the house. Usually the easiest to arrange and the easiest to dismiss as not worth it, which is a mistake: it is the only kind that can be weekly.

A regular slot. The same hours, the same day, every week. This is the one that changes things, and the reason isn't the hours. It is that you can plan against it. A dentist appointment, a class, a friend who knows they will see you on Thursdays.

A block. Several days, or a week, usually so a family caregiver can travel, have their own surgery, or sleep. It takes more arranging and it is what people mean when they say they can't possibly.

An overnight. Specifically for the caregiver who hasn't slept properly in months because they're listening.

What it changes

Honestly: less than you hope on the first day, and more than you expect by the second month.

The first time is often bad. People report feeling useless, anxious, guilty, and unable to enjoy the time. That is normal, and it isn't a sign respite is not for you. It is a sign of how long you've been on.

What changes with repetition is your planning horizon. Somebody with no relief lives in a two-hour window, permanently reactive. Somebody with a reliable Thursday starts thinking in weeks again, and thinking in weeks is most of what people mean when they say they feel like themselves.

What it doesn't change

It doesn't fix the underlying situation. If the person you care for is declining, respite doesn't slow that down, and expecting it to is a setup for disappointment.

It also doesn't remove the mental load. You'll still be the one who knows which pills are which. Respite buys hours, not responsibility, and the two are different exhaustions.

How to spend the first few hours

Not on chores. This is the most common mistake and it is completely understandable: you've three hours and a backlog.

Spend the first few on something that is recognizably your life. A meal that is not eaten standing up. A person you haven't seen. A thing that has nothing to do with any of this. The chores will still be there, and the point of the hours isn't to be more productive. It is to be somebody other than a caregiver for an afternoon, because that person is the one who has been disappearing.

Making it regular instead of an emergency

Almost everybody arranges respite for the first time in a crisis, which is the worst time: you're choosing fast, from whoever is available, while you aren't at your best.

If you can, set something small up before you need it. A standing few hours that you may not feel you need yet is the cheapest insurance available, and it means the person who comes is somebody your parent already knows on the week you're ill.

Paying for it

In Minnesota, respite is one of the things a waiver may cover, and a case manager is the person to ask. If there's already a waiver in place, ask directly what respite it allows and how many hours. If there isn't, the county is where an assessment starts.

Long-term care insurance policies sometimes cover it too, and people routinely don't know what their own policy says. It is worth half an hour and a phone call to find out.

If you're the only one

Some people reading this don't have a sibling to share with, or have one who isn't going to help.

The arithmetic doesn't care why you're alone, and neither does your health. Being the only one is a reason to arrange paid relief earlier rather than later, not a reason to prove you can go without it.

Where relief actually comes from in the East Metro

Worth being plain about this, because the word respite gets used loosely and families waste weeks calling the wrong places.

The county, if there's a waiver. Respite is one of the things a Minnesota waiver may pay for, and the case manager is the person who can say how many hours a particular support plan allows. If there's no waiver yet, the county is where an assessment starts.

The Metropolitan Area Agency on Aging. It offers caregiver consultants who work one to one with family caregivers, support groups, education, family meetings, and respite. This is the part most families don't know exists, and it isn't means tested in the way people assume.

Minnesota Aging Pathways, formerly the Senior LinkAge Line, on 800-333-2433. Free, state run, and the right first call if you don't know which of the above applies to you. They won't sell you anything.

Abloom Senior Living doesn't provide respite. What we do is ordinary in-home care for the person being cared for, on a regular schedule, which is a different thing wearing similar clothes: the caregiver comes for your mother, not for you, and the relief is a side effect rather than the service. For some families that is exactly enough. For others the right answer is a respite program through one of the routes above, and we would rather say so than take the call.

What to ask for when you call. Whichever door you knock on, the useful sentence is the same: I'm the main caregiver, I'm providing roughly this many hours a week, and what I need is a regular slot rather than an emergency one. Say the number out loud. Caregivers routinely understate it by half, and the number is what moves a conversation from sympathy to a plan.

Frequently asked questions

What is the difference between respite and regular in-home care?

Respite is care arranged for the caregiver's sake, to give them time off. In-home care is arranged for the cared-for person's sake, on a schedule. The hours can look identical from the outside. The difference matters when you're asking who pays and who provides it, because respite is funded and delivered through different routes.

How many hours of relief does it take to make a difference?

Less than most people expect, if it is regular. A reliable weekly slot changes a caregiver's planning horizon from hours to weeks, and that shift is most of what people mean when they say they feel like themselves again. An occasional emergency fill-in doesn't do the same work.

Who pays for respite care in Minnesota?

A Minnesota waiver may cover it, and the county case manager can say how much a particular support plan allows. Some long-term care insurance policies cover it, and policyholders routinely don't know. The Metropolitan Area Agency on Aging is the other route. Minnesota Aging Pathways on 800-333-2433 can point you at the right one.

I feel guilty even reading this. Is that normal?

Yes, and it is nearly universal. Most caregivers report feeling useless and anxious the first time somebody else takes the hours, and unable to enjoy them. That is a measure of how long you've been on rather than a sign relief isn't for you. It passes with repetition.

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If this is where you're

If the arithmetic in this piece is your arithmetic, the hours have to come from somewhere, and it is worth knowing which door to knock on: how care at home actually starts

Abloom Senior Living runs a small residence in Woodbury, and the nurses and certified caregivers who staff it also work in people's own homes across Saint Paul, Maplewood, Woodbury, Cottage Grove and Stillwater. If you would rather talk to somebody than read another article, tell us about your week and we will read it before we reply. We won't put you on a list.

This article is general information from a care provider. It is not legal, financial, or medical advice. For questions about a specific person's health, medication or safety, talk to their physician.