Caregiving has a burnout problem

More than 63 million people in America are caregivers — of kids, of parents, and loved ones. And nearly half of caregivers under the age of 50 are taking care of a parent and a child at the same time. Maybe you’re one of them. Maybe you’re also trying to hold down a job and handle everything else that life throws your way. And maybe it’s got you feeling spent. When we think of burnout, we often think of work, but caring for a loved one can leave you exhausted too.

Amy Goyer is the AARP’s National Family and Caregiving Expert, and she also knows this exhaustion first hand. Goyer has been a caregiver for most of her life, beginning in her 20s — first, for her grandparents, then, later, for her parents and her sister. 

“I felt like I was living four people’s lives,” she told Explain It to Me, Vox’s weekly call-in podcast. “When you have someone, especially someone that you love, who is going through so much, and it’s physical stress, it’s emotional stress, financial stress, you know, every type of stress you can think of, you may be absorbing that. And that’s on top of the normal stress of caregiving. It’s like the membrane between the two of you kind of gets thin.” 

Goyer says this phenomenon is known as secondhand stress. In the latest episode of Explain It to Me, Goyer explains the signs of secondhand stress, how you can recover from and prevent burnout as a caregiver, and more.

Below is an excerpt of our conversation, edited for length and clarity. You can listen to the full episode on Apple Podcasts, Spotify, or wherever you get your podcasts. If you’d like to submit a question, send an email to askvox@vox.com or call 1-800-618-8545.

What is the definition of secondhand stress?

It’s the emotional strain of being with a person who is experiencing pain or trauma or stress. You start to find yourself also feeling those things — feeling the anxiety, the sadness, the frustration. It’s not your experience, but your experience with them. It’s almost like catching somebody’s emotions, like catching a cold from that person. It’s like you are absorbing those things and that starts to cause you stress as well.

Recently, we talked about burnout at work. And the thing about work is that you can quit if you absolutely need to. But with caregiving for a loved one, that’s not really the case. You can’t just walk away the way you would in another situation.

Wanting to walk away is one of the big red flags. I have a philosophy that I developed during those years when I was caring for so many people at once. I was driving my car, and I realized I was on fumes; I had no gas. You know, that feeling of, “I’m not going to make it.” So I went straight to the gas station and filled the car up. 

As I pulled out of the station and started driving, I thought, “Wow, you know, the car runs better on a full tank of gas.” I could feel a difference in how the car was driving. That was my “aha moment.” I expected myself to run on empty all the time and be just as efficient. That doesn’t make sense. So I thought about what fills my tank, what fuels me so that I can keep going. 

Mostly, it’s little fill-ups. You may not have $60 to fill your tank, but you’ve got $10. So maybe I have 10 minutes, and I’m going to do some stretches, or jumping jacks, or walk around the block, or I’m going to get a good cup of coffee or tea. I’m going to call a friend. I’m going to text with someone. I’m going to [join] an online caregiving group. I kept fresh flowers in the house; that filled me up. I had Pilates once a week. That was kind of my deal-breaker; I only canceled for a true emergency. You know what those premium fill-ups are for you. 

The other big thing that I learned as a caregiver is that I can do anything, but I can’t do everything. So what are the things I can outsource and have somebody else do? What are the things that have to be me?

The cost of care is just so expensive. That can be stressful, and it gets harder over time. What role do finances play?

For me, the finances were one of the most stressful things. My parents planned. They had a financial adviser. They did the best they could. Their budget paid for caregivers while I was working. Then, I started absorbing the costs above their budget. When they moved in with me, I paid the mortgage, I paid for all the food, I paid for their clothing, and it added up as their needs increased. 

After more than a decade of this very intensive caregiving, my mom passed away in 2013. My sister passed away the following year, and I had to empty her house and manage her estate and ended up still caring for dad at the same time. The upshot is by the time he passed away, I had so much credit card debt that I was using to try to catch up with things. And I kept thinking, “I can handle this. I’ll dig out.” And I ended up in bankruptcy. I can tell you that’s one of the most difficult, humiliating, terrible experiences. But I talk about it openly, because I know I’m not the only one. I know many, many caregivers are struggling financially, and nobody talks about money.

Try to look at any benefits they may be eligible for. I eventually got my dad enrolled in veterans’ benefits, which was a huge help. See if your loved ones have long-term care insurance that might help pay for some things. Some people may qualify for help just paying their energy bills. You can contact your area agency on aging and ask about any type of help with benefits and case management and care management. They will connect you with someone who can help you with those kinds of applications.

How does that also shape your relationship with the person you’re caring for? What are some things people can do to navigate that?

I think the most important thing is to have a financial adviser for yourself — somebody who looks at the situation and gives you some good advice. 

There are things I probably should have done differently. Long-distance caregivers actually spend more than caregivers living nearby, and that’s partially because of the travel. They have to go back and forth, and they’re paying people to do things they can’t do. So look at the ways that you can maximize any services they can get, any benefits, anything like that. That’s one really important thing to do. 

Also, just to have a handle on what the costs actually are. There’s still a lot of people that say to me they thought Medicare was going to pay for long-term care, and Medicare does not pay for ongoing long-term care. The vast majority of people are cared for at home, because the cost of assisted living in nursing homes is just exorbitantly expensive.

This can be a lot to process. Are there resources and tools that people can turn to when this part of life becomes emotionally overwhelming?

Emotionally overwhelming is kind of the biggest piece of it. I just wrote a Care for the Caregiver guide for AARP this past year, and it’s free. You can get counseling, even if it’s not ongoing. I really recommend that. Caregiver support groups — I think connecting with other caregivers is maybe your top priority, because we get it. We understand each other, and it is a relief sometimes just to talk about it.

If you could go back in time and say one thing to the version of you that began caregiving, what would you say to her?

I think I would say, chill out a little bit. I can’t control the diseases my loved ones have or what happens to them health-wise, but I can control my own mindset. 

I think that’s the most important thing. I’ve seen thousands and thousands of caregivers across my career and different people will have very similar situations, but they have very different attitudes, and they come through it differently. 

It’s not even the resources they have; it’s their mindset about it and how supported and at peace they feel with it. The biggest difference is their mindset.