Kristie Opaleski was drowning in a sea of guilt.
In 2021, her mother and her father were diagnosed with devastating illnesses; her father with leukemia and her mother with Alzheimer’s.
For four years, Opaleski, 48, found herself driving what seemed like an endless loop from her home in Howell, N.J., to her parents’ house 45 minutes away in East Brunswick. This was in addition to working as a high school teacher and raising a teenager.
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She tried hiring caregivers but her father kept firing them. She begged them to sell their five-bedroom house and move into assisted living but her father refused. The breaking point came when her father called her and shouted that her mother wasn’t making dinner for him. At the same time, her mother was calling to ask why the chicken wasn’t baking. It turned out she had mistakenly turned on a burner on the stove instead of the oven. Because her father couldn’t climb the stairs to get to the kitchen, Opaleski had to call a neighbor to turn off the stove.
After she collapsed on the floor “crying like a lunatic,” her husband told her something had to change, She realized it was past time to set some boundaries.
She and her husband went to visit her parents that weekend, and she told them, “I can’t do this anymore. I can’t be everything to everyone.” Now both are 83 and live in assisted care.
Everyone tells caregivers to be sure to care for themselves. But the question is — how?
“I get kind of impatient and a little irritated with ‘go get a massage and have a bubble bath,'” says Deborah J. Cohan, a professor of sociology at the University of South Carolina Beaufort and author of Welcome to Wherever We Are: A Memoir of Family, Caregiving and Redemption. “Caregiving adds so many layers of stress to our lives, and then there’s this added stress of all the other things you should do for yourself,” says Cohan, 56, who spent most of her 30s caring for her terminally ill father.
“I know when I was in the throes of the caregiving process, there was a lot of that noise coming at me from well-meaning people,” she adds.
The toll of caregiving
Almost one-quarter of adults — 63 million — in the U.S. provide ongoing care to adults or children with ongoing medical conditions or disabilities, according to Caregiving in the U.S. (PDF), a 2025 research report by the AARP and the National Alliance for Caregiving. That’s a 45% increase over a decade, the report states.
While it can be very rewarding, caregiving can also take a toll on those who do it, both on their finances and health. Caregivers may have to leave their employment, stop saving or go into debt to take care of a family member or friend. The American Psychiatric Association Foundation notes that studies show caregivers experience higher levels of stress than non-caregivers, and that women in particular (who make up the overwhelming majority of caregivers) are at risk for increased anxiety, depression and poor physical health.
Suzanne Horton, 48, a licensed mental health therapist from Tacoma, Wash., took care of her father, who suffered from cancer and kidney failure, from late 2019 until he passed away in early 2025.
“In five years, I can count on one hand how many times I truly stepped away to do something for myself,” she says. “Part of that was lack of access to support, but a big part of it was fear about what would happen if I were not there.” Her only break came when her father went to dialysis for four hours, six days a week, “and even though it was a break, there wasn’t a lot of space for me,” she says. Her stress showed up physically and mentally. She was diagnosed with sciatica — both, she says, from the tension she was holding in her body and from transferring her father from his wheelchair to the bed or the car.
People often told Horton not to forget to take care of herself, “and in my head I would say, when?” she says. “My caregiving season has been over for a year now and I still have moments where focusing on me is hard. Taking care of me was one of the hardest parts.”
Knowing you need help
Professionals hear stories like Horton’s all the time. Caregivers say they feel overwhelmed but don’t know who or how to ask for help. They’re afraid an emergency will occur just when they aren’t around and they’ll feel guilty for the rest of their lives.
Often caregivers may not even recognize they’re burning out. They become irritable and fatigued and snap at the person they’re caring for, which leads to guilt.
David LoPresti’s mother had a lifelong disability, and it was just the two of them living together, so, as he says, he “grew up inside the rhythm of caregiving.”
“What I want non-caregivers to understand is that caregiver burnout doesn’t look like collapse — it looks like a competent person quietly making worse decisions for months,” says LoPresti, 48. “The fix isn’t a vacation. It’s designing your life so the load is survivable.” He now runs a company, ADA Compliance Professionals, which helps organizations make their websites, software applications and other digital properties accessible to people with disabilities and compliant with the law.
What does survivable look like? Everybody’s situation is different, but mental health professionals, researchers and caregivers themselves say there are strategies that have proven useful.
First of all, understand that what works for one person doesn’t work for everyone. Friends and family can offer plenty of suggestions about what you should do but often the advice is well-meaning but frustrating and repetitive. They tell you that you can’t drink from an empty cup, or remind you that you should put the oxygen mask on yourself before helping others.
“I never say those things, I find them completely ineffective, and you’re never going to be the first person to tell someone to take care of themselves — they’ve heard it a million times,” says Barry Jacobs, a clinical psychologist who spent seven years caring for his mother with dementia. He also co-wrote the AARP Caregiver Answer Book.
“When I was my mom’s caregiver, I would say ‘not on my watch, nothing bad’s going to happen on my watch.’ It meant I was standing sentry all the time, and that wasn’t very good,” he says. Fundamentally, Jacobs says, people have to understand that taking care of themselves is going to help them meet the goal of taking care of their loved ones.
Often caregivers start by assuming their situation is going to be temporary, but the AARP caregiving report found that about 30% of caregivers provided care for five or more years. It’s when people realize this is not going to be a short-term situation that they understand they have to find ways to sustain themselves, Jacobs says.
“I talk about the caregiving marathon, especially caring for someone who has a progressive condition,” he says. “You don’t run a marathon by going all out full tilt from the moment the gun goes off and you don’t run past the water station at mile five, and say ‘no thank you, I’m not thirsty’ to people waving water bottles. People get the idea that they have to pace and replenish themselves and if they want to meet the mission. The mission is not to run halfway and drop out.”
In order to make caregiving sustainable, people also have to realize that they can’t do it flawlessly.
“I was so governed by the tyranny of perfection,” says Cohan, the sociology professor who spent her 30s taking care of her father. “It was agonizing, worrying about always doing the right thing and making the right choices and second-guessing myself. I needed a way to let go.”
For Jacobs, that’s where the concept of the good-enough caregiver comes in — allowing that you’ll make mistakes. And trusting your gut that you know your loved one best; while doctors and other professionals may offer helpful suggestions, don’t defer if you disagree.
Also, discard the idea that caregiving is your job alone.
“I felt that it was my family, my burden and my time to help them,” says Opaleski, the New Jersey caregiver who eventually moved her parents into assisted living. But she found she had set herself an impossible mission.
She learned that she had to lean more on neighbors and extended family, which meant requesting specific tasks on a regular schedule, such as asking a neighbor to bring groceries to her parents once a week.
“I’ve had to abandon the martyr complex,” she says.
A “systems failure”
For Donna Benton, an associate professor of gerontology at the University of Southern California and director of its Family Caregiver Resource Center, caregiving has been framed as a personal issue — if you can’t do it, it’s because you failed — “as opposed to a recognition it’s a systems failure. We haven’t supported caregivers as the structure of the family has changed.”
Families are smaller, so there are fewer relatives to take care of aging relatives. People live longer with illnesses that once were fatal.
Benton and others have long worked to put in place policies and laws to more systemically assist the needs of caregivers. One example is the Caregiver Advise, Record, Enable Act (CARE), developed by the AARP and now enacted in most states.
It requires hospitals to record the name of family caregivers on the medical record of the patient, inform them when the patient is scheduled for discharge and provide education and instruction on the medical tasks they will need to perform for the patient at home.
On the federal level, in 2024, the Centers for Medicare and Medicaid Services took two important steps.
It put in place codes under Medicare Part B that allow healthcare providers to bill for training family caregivers of Medicare beneficiaries who have a mental or physical health diagnosis. Models developed by researchers and healthcare systems report reduced burnout from caregivers who participate in training, according to the Center for Health Care Strategies.
At the same time, the Centers for Medicare and Medicaid Services also introduced an ambitious eight-year pilot program to cover and provide coordinated care for those enrolled in Medicare who have dementia (with some exceptions) and their caregivers.
Named Guiding an Improved Dementia Experience (GUIDE), one of its goals is to address unpaid caregiver needs through improved access to education and training, support services and resources, including respite care. Explanations on how to apply to participate in the program are online.
Many people — caregivers and health care providers — don’t know about these options, Benton says, so education is key. But the fact they now exist demonstrates the growing recognition of the crucial role of caregiving and the importance of supporting it through government and other resources.
At the same time, the burden still falls on the individual to find outside resources.. That’s why a geriatric care manager, or life aging life care associate, as they’re now called, can be very helpful. Typically, such managers once worked as nurses, physical or occupational therapists, or social workers. They assess clients and help find and coordinate needed services.
The Aging Life Care Association offers a database to find such professionals locally. In addition, every state has an agency on aging with a family caregiver support program, which is often an underutilized resource, Benton says. Such agencies are listed in state government directories and the national Eldercare Locator.
Finding space
While systemwide action is needed to address the needs of caregivers, many have found that small changes can make a difference.
For LoPresti, whose mother had lifelong disabilities, it’s non-negotiable boundaries: a hard stop most evenings, one full day when he’s not reachable by the caregiving team and a standing rule that when he’s feeling depleted he doesn’t make major decisions.
Horton of Tacoma, Wash., decided to stop being the point person between her dad and other friends and relatives. Some were annoyed but it gave her peace, she says, and “if I could take a little off my plate that’s what mattered.”
She also started taking care of the flowers she had transplanted from her father’s garden when he moved in with her and realized gardening gave her mind a break. Having her hands in the dirt “gave me a moment to breathe,” she says.
Opaleski, the teacher from New Jersey, discovered that self-care is a combination of things — professional therapy and anxiety medication, the scheduled 20-minute venting call with a friend “who promises not to offer solutions, just a witness.” It’s tea at 4:00 PM, “a small, hot anchor in a sea of medication logs and teenage angst.”
And there’s humor. It doesn’t seem there would be much to laugh about in Gigi Marino’s situation — she’s been taking care of her 68-year-old husband for 15 years, when he was diagnosed with end-stage liver disease. There was hope of a transplant, but then it was complicated by pancreatic cancer, diabetes and a host of other ailments. He is now in hospice at their home in Orlando with Marino and her sister, who lives with them.
“We joke about ‘death-card bingo,’ trying to guess which disease will get him first,” Marino, 65, says. “Strangely, our gallows sense of humor — and just being upfront and honest about the situation — is the best stress reliever, and I believe laughing our way through dozens of hospitalizations and a handful of near-death experiences has kept him alive and going.”
Finding other people who understand your situation is also key, experts say, and for that many turn to support groups. There are in-person and online s groups that can be found through organizations for the aging or through those that address specific diseases such as Alzheimer’s.
Monique Frahm is a care educator who works with Trualta, a company that offers numerous free online sessions for caregivers facilitated by educators. They run for an hour and can range from 15 to more than 100 people, depending on the topic and format.
Frahm, a registered nurse, was a caregiver in her 20’s for both her parents. And she wishes she had the type of help then that she now offers. It’s a place for caregivers to find some answers, but even if the group doesn’t have a solution, “we can hear them, and we can validate them,” she says. “There’s going to be people in the group who say, ‘Me too, I went through this six months ago.’ Hearing ‘I’m not alone’ is so healing for people.”
Note: This item first appeared in Kiplinger Retirement Report, our popular monthly periodical that covers key concerns of affluent older Americans who are retired or preparing for retirement. Subscribe for retirement advice that’s right on the money.
