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.
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.
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.