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More Than 60% Say Caregiving Increased Their Level of Stress and Worry, New AARP Report Finds

Survey sheds light on caregivers' daily stressors and shares ways some manage anxiety, pressure

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For Linda Simons, the most important part of her daily caregiving ritual begins long before the sun rises and well before her 82-year-old husband, who suffers from Parkinson’s and cognitive decline, sees the first light of morning. 

Her most critical caregiving actions of the day, she says, are her own stress-busting, pre-sunrise moments of personal self-care. This typically involves taking time to exercise, shower, apply makeup and put on an upbeat outfit that helps her feel like something more than the family caregiver for her husband, Harvey.

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In a post-pandemic nation, the stress of family caregiving has only gotten more complex and the nation’s 48 million adult family caregivers — who are not paid for their labor — must take daily steps to first attend to their own physical, emotional and mental well-being, according to a recent AARP study, “A Look at U.S. Caregivers’ Mental Health.” The survey of 1,001 U.S. adults ages 18 and older was conducted May 1-14, 2023. All participants were currently providing unpaid care for an adult loved one or had provided care in the last three years.

“By the time he comes downstairs, I’ve at least had a chance to enjoy some quiet time,” says the 68-year-old resident of Newton, Massachusetts.

Self-care works like armor for Simons. She has learned to balance the stress of tending to her husband’s many needs on and off through the day and night, with daily actions that give her mental oxygen.

“If you are a family caregiver, don’t let anyone shame you into thinking that self-care is selfish,” says Simons.

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Linda Simons is the primary caregiver for her husband Harvey.
Courtesy Linda Simons

Daily caregiving challenges

By and large, these overstressed caregivers are mostly women, whose caregiving responsibilities include everything from cooking to driving to assisting their loved ones with activities of daily living — from dressing to showering to toileting.

The survey emphasizes how much all that extra work weighs on family caregivers: Half of caregivers (50%) said caregiving increased their level of emotional stress, while more than one-third (37%) said it impacted their physical feelings of stress. Female caregivers experience more stress and anxiety than their male counterparts; and younger caregivers (under 35) have more emotional challenges than older caregivers, with higher levels of anxiety. A whopping 4 in 10 caregivers (39%) report they rarely or never feel relaxed.

“You don’t think you have time for your own medical needs and mental health support when you’re spending so much time taking care of others,” says Charlotte Yeh, chief medical officer for AARP. 

That is wrong, she says. Family caregivers must learn to care for themselves first and foremost. And, yes, that’s hard. Some 61 percent of family caregivers also hold down jobs. Another 30 percent also have children or grandchildren in their home. Not only are family caregivers unpaid, but the typical caregiver spends more than $7,000 out of pocket annually on caregiving. And perhaps most stressful of all, she says, 6 in 10 are regularly being asked to perform medical procedures — such as monitoring blood pressure or giving injections — that they might not be trained to do.

How to relieve the stress?

Simons takes one Pilates class and two strength-training classes every week. She also meditates and practices Reiki on herself every day — an energy healing technique that uses gentle hand movements.

Another great source of emotional relief for Simons has been the Parkinson’s Caregiver support group and the private AARP Family Caregivers Discussion Group on Facebook that she links up with regularly. “When people understand what you’re going through, you don’t feel quite so isolated,” she says.

Simons has also learned one other “trick” that she says has brought her great stress relief: knowing when to leave the room.

On those occasions when Harvey becomes argumentative, instead of engaging in a disagreement, she turns around and walks out for a bit. “Sometimes it’s easier to walk out of the room than to get involved in an argument,” she says.

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When she walks back into the room a few minutes later, she says, her husband has often forgotten what they were arguing about.

In the end, successful caregiving means tapping into whatever inner strength you have, says Simons. “When you have those days when you feel totally overwhelmed, it’s OK to cry. You’re not a bad person.”

Even more than that, says Yeh, family caregiving has an unusual benefit that 80 percent of caregivers report feeling: a sense of purpose.

If you spend 100 hours annually helping friends or family in some sort of caregiving role, you not only help your loved ones but also yourself, says Yeh. The act of caregiving not only gives most folks a sense of well-being but — if they also take care of themselves — can reduce the caregiver's risk of hospitalizations and lower mortality risks, according to many reports.

The unexpected rewards of caregiving

Few understand the positive vibes that can come from family caregiving any better than Veronica Yepez.

Her 74-year-old father, Manuel Zavala Rodriguez, suffers from a debilitating array of illnesses and can no longer feed or bathe himself or take care of many of his most basic personal needs. The Los Angeles resident was a janitor for a printing company who retired at age 62 when health issues began to take hold. He’s had several strokes and also suffers from dementia.

For 48-year-old Yepez — and her two adult sons and two adult daughters — caretaking for Rodriguez 24/7 has become a family matter especially now that Yepez works full time as a school resource navigator in Los Angeles. 

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“Being able to work is lifesaving,” says Yepez, noting that she enjoys interacting with the other adults.

She’s had the job for about two years. For the two years before that, she had quit her previous job during the pandemic to become her father’s full-time caretaker.

When Yepez accepted the new position, her adult children (and her sister) agreed to take over most of the caregiving duties while she was at work. Each of the four adult children has put off pursuing their own personal goals while their grandfather is living in the house. “Every one of my kids say they have plans — but only after Grandpa is gone,” Yepez says.

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Manuel Zavala Rodriguez, joined by his beloved caregivers, daughters Veronica Yepez (left) and Maricela Vallin.
Courtesy Veronica Yepez

When someone leaves the house, they always make sure that two “helpers” stay at home because caretaking for Rodriguez can get complicated.

In the meantime, each family member has developed their own ways of dealing with the pressures of caregiving. The family’s single most effective stress-buster: laughter.

Sometimes they will sit down as a family to find out which of them is having the most stressful week — and then they’ll plan outings for that person that almost always involve some sort of laughter. Yepez will often schedule Sunday morning breakfasts with her husband simply to get some private time together outside the house.

Yepez also says that cooking is a huge stress-reliever for her. Her dad loved to cook, too, so she serves up meals that makes her feel more connected to him, she says. She also likes to crochet, knit and read Harry Potter books. “It takes you away from reality,” she says.

In the end, she says, the over-arching feeling the entire family shares at the end of the day is mutual love and support. There’s a shared sense of purpose that keeps them all going.

That’s the most important lesson learned in real-life Caregiving 101. Those who have a sense of purpose tend to take better care of themselves — and even live longer, says AARP’s Yeh.

Never mind that her father continues to lose awareness of many of the things going on around him. He can’t talk. He can’t move. He can’t eat on his own. But every once in a while, when Yepez is feeding him, he’ll move his hand in a certain way or maybe smile just a bit. Or occasionally look at his daughter from the corner of his eye with an unexpected gleam of love. 

“The rewarding part,” Yepez says, her voice slightly cracking, “is knowing that we are all there for him.”

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