The Struggles of Young-Adult Caregivers

A local woman’s life is transformed after her father suffers a stroke.

Going to the hardware store is an errand so normal that most dads don’t think twice about it. For Frank Paone, a trip to the Frazer Home Depot was the last normal thing he’d ever do. 

There, near the shower-curtain aisle, Paone passed out cold. Home Depot staff called 911, and an ambulance took him to Paoli Hospital. Cardiologists found that three of his four aortic ventricles were blocked. They did a triple bypass and saved his life.

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That was in November 2011. Over the next weeks, the 63-year-old continued to have chest pain. In February 2012, Paone underwent cardiac catheterization to further address his blockages. The surgery was deemed a success until, while in recovery, a nurse noticed that part of his face was drooping and his speech was slurred. He’d had a stroke during the catheterization procedure, and plaque from his arteries had traveled from his heart to his brain.

Paone was flown from Paoli Hospital to Jefferson Hospital for Neuroscience in Center City to get emergency treatment from its stroke team. So massive was the stroke that nothing could relieve the blockage. Physicians did a craniectomy to remove part of Paone’s skull and reduce some of the pressure on his swelling brain. 

The family was told to expect the worst. But 10 days later, Paone actually showed signs of improvement.

That was three years ago, and Paone’s current life barely resembles the one he led before his cardiac event and stroke. A retired PennDOT highway engineer, he’d been an avid cyclist who worked out every day. Now, he’s unable to feed or bathe himself. He is bound to a wheelchair—and, much of the time, to his 24-year-old daughter, Stephanie. 

“I do his toileting, showering, and dress him,” says Stephanie, who is one of his primary caregivers. “I pick out his clothes and put his clothes and shoes on. I put the toothpaste on his toothbrush and hand it to him so he can brush his teeth. It’s like having a toddler.”

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Stephanie is among the increasing number of young-adult caregivers in this country. In a study published in 2015 by Easter Seals and MassMutual Financial Group, a third of respondents ages 25-45 identified themselves as caregivers. So significant is the number that the Dr. Phil show tackled the subject in an episode that included the Paone family. 

Stephanie’s mom, Jeanne, has gastrointestinal problems that, every few months, render her bedridden for a week at a time. Originally thought to be side effects from her gastric-bypass surgery or Crohn’s disease, the exact cause of her illness has eluded physicians for five years. Without a diagnosis, they can’t help the 55-year-old, and she continues to suffer. 

“It gets so bad that sometimes I have to take her to the ER,” Stephanie says. “They’ll give her fluids and medication for her fever. If she comes up septic, they admit her to the GI department, even though there isn’t much they can do.” 

Eventually, the symptoms do subside on their own. During Jeanne’s convalescence, Stephanie cares for both of her parents. She also runs the house. 

Even when Jeanne is healthy, she’s not home when Stephanie is. A neonatal intensive-care nurse at Paoli Hospital, she works night shifts, caring for Frank during the day. Stephanie takes over in the evenings when she gets home from work. She has two jobs—one as a graphic designer at Today Media, the parent company of Main Line Today, and the other in patient registration at Paoli Hospital. 

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Dr. Phil producers traveled to West Chester to film Stephanie caring for her dad. Then she flew to Los Angeles for the show, which aired in late May. There, Stephanie joined other young adults in talking openly about how their caregiving roles have affected their lives. 

“I really want to move out on my own and have an adult life, but—as horrible as this is to say—I’m worried that I won’t be able to do that until my dad dies,” Stephanie says. “I can’t leave my mom with him as a burden—and if she gets sick, I’ll have to stay home with her. So I can’t plan my future. I want to have independence, but it won’t happen for a long time.”

Gail Hunt is well aware of the dilemma facing young-adult caregivers. She’s president and CEO of the National Alliance for Caregiving, a nonprofit organization dedicated to conducting research and developing national programs for family caregivers and the professionals who serve them. Hunt points to studies that show how young caregivers are forced to limit their social interactions—something that adds to their stress and sense of isolation. These things can also have lasting effects on their ability to form healthy romantic relationships. 

Given all of that, it’s not surprising that young caregivers’ mental health is affected. “Depression is very common in family caregivers,” Hunt says. “Studies have shown that it could be up to half of the caregivers.” 

Stephanie admits to feeling “down-and-out.” She sleeps a lot, often catching naps when her father is stabilized in front of the television. 

Equally distressing is the emotional impact of dealing with a loved one whose behavior has become unrecognizable. Stephanie reports that Frank has been verbally abusive to her and her mother. “He would call us names and say mean things, and I knew it was from the medication and the brain injury,” she says. “But I would run away and cry.”

What can be done to help young-adult caregivers? Hunt says countries like Australia and England provide financial help and other support for family caregivers. In the U.S., health insurance hardly covers everything, and only impoverished families qualify for Medicaid. 

When it comes to supporting family caregivers, there’s one organization leading the way: the otherwise much-derided Veterans Health Administration. “The VA has a very interesting program for vets who were wounded post-9/11 and have a severe disability,” Hunt says. “Their caregivers can qualify for financial support, and the VA provides education and training. In fact, the VA has a system of reaching out to people who are the caregivers to let them know about the programs.”

Families without veterans may have to look harder to find help—but Hunt says it’s critical to do so, nonetheless. She strongly suggests that caregivers turn to qualified mental-health professionals and join support groups for people similar in age or circumstance. 

Caregivers shouldn’t feel guilty about asking for help, Hunt says. If it makes their lives just a little bit easier, it’s well worth the time and effort.

 

Family Ties

Stunning statistics on a growing phenomenon.

Source: Caregiver Action Network

$37 billion: Value of the services family members provide when caring for older adults.

29% … of the U.S. population provides care for an ill, disabled or aged family member or friend.

20 hours: Average time spent providing care per week.

1.4 million … children ages 8-18 provide care for an adult relative.

66% … of family caregivers are women. 

HELPING HAND: Stephanie Paone cares for her father, Frank, at the family’s West Chester home//photo by tessa marie images

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