Dolly Parton Discussed Caregiving
An American legend, Dolly Parton, sadly just passed. A CNN article shortly after her passing discussed a video interview she gave before she passed where she said:
“Back when my husband Carl was sick, that was a long time, and then he passed, I didn’t take care of myself, so I let a lot of things go that I should have been taking care of.”
A link to CNN article is here and its an interesting read:
The article goes on to indicate...
When you care for someone else, it is all too easy to neglect to care for yourself.
“The data shows this is happening in millions of homes across America. Caregivers’ health is worn down by the labor of care. Even with her privilege, Dolly is not an exception,” said Jason Resendez, president and CEO of the National Alliance for Caregiving.
Some 23% of caregivers report that they find it difficult to pay attention to their own health while caring for another, according to a report from the National Alliance for Caregiving and the AARP. The percentage goes up for female, LGBTQ+, Latino and lower-income caregivers.
Nancy Slavin, 57, is a “24-hour” caregiver to her mom in their shared home near Portland, Oregon. She deeply values this time they have had together, but the care has come at a cost to her health. Slavin had neglected routine cancer screenings for years until she finally got around to it and had a scare that got her attention. On top of that neglect, it has limited her capacity to socialize and do things like attend literary readings and gatherings she once loved.
“Ultimately, I love my mom and will never regret having done this,” she said. “But at the same time, I don’t want it to kill me because I am a mom, have a spouse, and I want a good life.”
Even those who do long-distance caregiving can experience burnout and self-neglect.
Heidi Lescanec, 54, lives in Vancouver, British Columbia, far from her mom in Ontario. Still, the demands of caring for her mom physically and emotionally overwhelm her. She’s found it hard to take deep breaths, chew her food, let alone do other types of more meaningful self-care while feeling deeply responsible for another person.
“You can’t distribute that work. You are the one person they will speak to. Even if you wish to delegate some of the work, there has to be one person at the helm and that’s me,” she said.
The average family caregiver spends 27 hours a week on care, Resendez told me, and many put in 40 hours or more. “There is an intensity that comes with caring for someone with a serious illness. It is a job that doesn’t leave much room for self-care,” he said.
And many caregivers physically and emotionally struggle because they lack financial resources to hire help with care, and therefore receive no assistance with, or break from, the repetitive and demanding work.
Close to two-thirds of caregivers report emotional stress, and 45% report physical strain. There is the additional burden of loneliness, experienced by nearly a quarter of all caregivers who may be missing opportunities to socialize and connect outside their homes, away from the family members and friends they care for.
As Parton’s last chapter tells us, even caregivers who can afford hired help, along with easy-to-navigate medical care, risk compromising their own well-being while tending to another.
Caregivers’ self-neglect often comes down to practical matters. “There is a logistical piece that drives a lot of this,” said Allison Applebaum, professor of geriatrics and palliative medicine and director of the Steven S. Elbaum Family Center for Caregiving at the Icahn School of Medicine at Mount Sinai in New York.
Also, when people are spending much of their days dealing with hospitals or at doctor’s offices with those they care for, they just don’t want to spend any precious free time in a medical setting for themselves.
Neal K. Shah, cofounder and CEO of CareYaya Health Technologies, a health-tech platform that connects families with affordable elder care, said Parton’s story felt very familiar.
During the several years he was the caregiver for his wife, who had cancer, he didn’t go to a single doctor’s appointment for himself. He said his health needs just didn’t seem as important as hers.
“Many people caring for spouses brush off every symptom. In my experience it felt like: I can’t be sick because I need to do my job here. Also, because this person is majorly sick, and it is growing fast, and chances are that whatever is wrong with me is not, so I will deal with my thing later.”
Applebaum said that even those who can overcome the practical obstacles often still struggle to take care of themselves. This is especially the case when the affection and connection between caregiver and care recipient runs deep, as appeared to be the case with Parton.
“Caring for someone we know is going to die inevitably engenders a feeling of powerlessness in us. We can’t save them, but we can put everything under the sun into caring for them,” Applebaum said. “Caregiving can help us feel in control.”
Currently, unpaid family caregivers are responsible for an estimated $1 trillion worth of healthcare in the United States. Tens of millions of Americans wouldn’t survive without them. And yet, when a caregiver takes their care partner to a doctor’s appointment, hospital or treatment, they are rarely asked how they, the caregiver, are doing, or if they need support.
“Only 15% have ever been asked by a provider what they need,” Resendez said. “They are navigating a complex system, doing complex healthcare, and yet very few are getting the kind of social, emotional and practical support they need.”
Unsurprisingly, this leads to worse health outcomes for both the caregiver and care recipient. Meanwhile, when caregivers are given support, the vast majority feel more confident in their role and believe they offer better care as a result. Resendez said things like respite care, in-home healthcare, and palliative care can go a long way in relieving caregiver burden.
Applebaum said it is her “mission to embed support for caregivers into every health system.”
In her vision, the moment someone is registered as a patient, their caregiver or caregivers would also be registered and screened to determine how they are doing. Such screenings would look at their physical and mental health, as well as if they have the social and economic stability necessary to be able to care well without excess burden. Should any concerns arise, they would be offered help.