Do you need to step back from caregiving? How to spot the signs

(Aging Untold) — Caregiving is often called an act of love, but over time it can wear down your mind, your body and your relationships.

The Aging Untold experts explain the warning signs of caregiver burnout, why stepping back can actually be the safer choice and how to make the transition without falling into guilt.

“It’s OK if you’re even deliberating quitting”

Amy O’Rourke, an aging expert, says the first step is giving yourself permission to admit you’re struggling.

“The first thing I would say is, it’s OK if you’re even deliberating quitting. And it’s very understandable,” O’Rourke said. “If you’re really, really tired, you’re not sleeping, everybody’s making you mad, and you’re getting burnt out — the first thing I would do is do whatever you need to do to get unburned out. Don’t make a decision in the middle of that stress.”

O’Rourke recommends caregivers step back, let someone else fill in and let their nervous system settle before making any long-term decision.

“Get your central nervous system kind of dialed back a bit, and then make the decision,” she said. “If you’re going to make the decision — I want to quit — then have a plan. What’s the transition plan? Is it a community? Is it a relative? Is it a paid caregiver, whatever it is.”

Expect “buyer’s remorse” after the decision

O’Rourke said caregivers who do step back should prepare for a wave of conflicting emotions afterward.

“Be fully prepared to what I call buyer’s remorse,” O’Rourke said. “You make the decision and then you regret it, and you’re back and forth. ‘I’m a bad daughter.’ ‘I couldn’t do it.’ So there’s some back-and-forth emotions. I’ve had clients do this and they end up quitting. And then I have others — they got the rest they needed, and then they went back and did it differently.”

Sam Cradduck, a gerontologist, compared unmanaged caregiver stress to a fire waiting to happen.

“We often love to tell caregivers, don’t let yourself get burnout. But listen, guys — the match is lit, the kindling’s sitting there, and there’s literally gasoline on it,” Cradduck said. “And there’s not oftentimes water in the area to put the fire out. We fail to tell people how not to burn out.”

Respite care can offer a reset

Cradduck pointed to hospice respite care as one option for families whose loved one has reached that stage of care.

“If your loved one has reached the stage of hospice, hospice respite care is part of that program,” Cradduck said. “You can have your loved one, if they’re in the home, transported to a community for a week to 10 days. And they can do this every quarter. It can give you that reset and that break. And then you can go, ‘OK, I can do this a little longer.’ Or maybe you’re like, ‘You know what, I can’t.’”

O’Rourke added that respite care isn’t limited to hospice situations.

“If they’re not terminal, communities have respite care. Home health has respite care too,” O’Rourke said. “I love the idea of just saying, temporarily, I’m taking a leave of absence.”

Love doesn’t mean you have the ability to do the job

Dr. Rhea Rogers, a board-certified physician, said one of the hardest parts of caregiving is separating love for a person from the physical and emotional capacity to care for them.

“Being a caregiver takes away from your identity over time,” Rogers said. “One of the hardships is understanding that love doesn’t mean ability. When you recognize that you’re at a crossroad, I think that’s really empowering, because if you continue to do what you know is not working out, you’re going to take it out on your body physically as well. And then the resentment comes in, and then that fight-or-flight — you’re stuck in this mode and you just can’t heal. It becomes detrimental to both parties.”

Aging well coach Katherine Ambrose shared what she has seen.

“I see people that say, ‘I loved my mom all the way to heaven. It was the greatest honor of my life,’” Ambrose said. “And then I see other people that say, ‘I can’t put my husband in a home. My children are ready to support me doing that, but I just can’t do it, and I don’t know what to do.’”

Ambrose noted that overwhelmed caregivers sometimes reach a point of hopelessness.

“Sometimes caregivers don’t outlive the person they’re caring for,” Ambrose said. “That’s sad when people are so overwhelmed that they may hope that they just pass away in their sleep, and that’s the way they see the burden being lifted.”

Caregiving doesn’t have to mean hands-on, 24/7 work

Ambrose said families should remind caregivers that stepping back from hands-on duties doesn’t mean stepping away from the relationship.

“Maybe mom needs even more than just, ‘Mom, we’re ready to support you when you’re ready,’” Ambrose said. “Maybe she needs to be rescued, because many caregivers do not outlive the spouse or the parent they’re caring for. But here’s the deal: Caregiving doesn’t have to be 24/7 hands-on. It can be advocacy and still being the spouse, still being the mom, still being the daughter.”

Ambrose described leverage as the key to sustainable caregiving.

“How can you use leverage? Leverage is three things: it’s systems, people and tools,” Ambrose said. “You may not know what those are, but you can reach out to people that work in home care, home health, the doctor’s office, the social worker at the hospital. Just keep asking questions, and you’ll find the resource to the resources. You’ll find your answers.”

Give yourself permission to get help

Cradduck said many caregivers stay in unsustainable situations because of a sense of duty tied to marriage vows or family roles.

“The problem that I see so frequently is the duty – It’s my duty. ‘Sickness and in health, better or worse — and this is the worst, and this is the sickness,’” Cradduck said. “I say you can still live those out as the spouse and not be the one that’s doing all the work. Try your darndest to find somebody that can help you out and give you that break. And then if that break’s what you need on a permanent level, go ahead and have somebody else step into the role. Give yourself permission. This is the hardest job you will ever do.”

Key takeaways

• Love doesn’t automatically equal capacity. Being the closest emotionally or geographically doesn’t mean you’re the one who has to have the skills or ability to provide hands-on care.
• Burnout harms both people — the caregiver and the person receiving care — through resentment, stress and physical health decline.
• Stepping away may be the healthiest choice.
• You can exit in planned stages — rest to clear your head, plan finances and arrange who will fill gaps in coverage.
• Caregiving can mean advocacy, not just hands-on labor. Using “leverage” — systems, people and tools — can let you stay involved without doing everything yourself.

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