Sometimes it starts small: Maybe Mom needs a little help with her checkbook or a hand with the housework. Other times, it arrives like a thunderclap, with a catastrophic injury or shocking diagnosis. But however an illness or disability arrives, the person who steps up to assist a stricken loved one earns a title: That person becomes a caregiver.
Many caregivers don't even recognize themselves in that word, though. To them, helping family is simply what you do. Their contributions are quiet and often overlooked. But caregivers are legion. In the United States, about 40 million people provide unpaid care to an ill or disabled adult. One-quarter of those caregivers have been in their roles for five years or longer. And these loving helpers often go it alone. Only half of family caregivers say they get unpaid help from another family member or friend.
On one day this past summer, we visited caregivers across the nation to talk about their joys and challenges. Together, they showed us the meaning of devotion.
Ackerman + Gruber
24 Hours, 8 Families
8:51 a.m. / Manitowoc, Wis.
Her parents have been divorced for more than 40 years. But when Cyndie Rhodes' dad, George Fix, 91, and mom, Katherine Gibble, 86, needed care, both moved in. "They hadn't seen or spoken to each other in all those years," recalls Rhodes, 61. Fix, who uses a wheelchair, has lived with Rhodes since 2008. Gibble arrived the following year and stayed until 2011, when she moved to a nearby residential facility. Still, Rhodes visits often. "It has been a period of forgiveness and healing," she says. "They kid around together and play cards." Fix loves to play old records; his daughter adds: "He always wants to polka with me."
10:30 a.m. / Palm Springs, Calif.
Angie DiPrinzio, 66, was a personal trainer and extreme athlete when, in 2008, she suffered a stroke. The cause: a routine root canal that allowed bacteria to get into her bloodstream. DiPrinzio still has short-term memory loss and struggles with language and dexterity, says her partner, Estelle Sandler, 68. "I live with a child some days," says Sandler. "But some days, she has a better idea than me." The New York residents travel regularly to California for therapy. "I'm the tour director," Sandler says. "Angie doesn't know what to do until I give her something to do."
1:11 p.m. / Boca Raton, Fla.
Leah Davidson first met Scott Shettleroe in 1981, when he briefly rented a room from her. A choreographer by trade, Shettleroe became a close friend. "My husband wanted to adopt him so we could write him off on our income tax," jokes Davidson, 75. Two years ago, after Davidson's husband died and Shettleroe, 57, became ill with COPD, the choreographer moved in with his pal. "He's here to keep me company, and I'm here to take care of him," she says.
3:36 p.m. / Gurgaon, India
"People are surprised that I take vacations with my son," says Wichita, Kan., resident Anita Raghavan, 48. "It would take more energy for me to figure out how not to do this." Raghavan's son, Tavrick Lawless, 19, has Down syndrome and needs steady supervision to stay safe. "He knows there are bad things out there," says Raghavan. "But he doesn't recognize that they can happen to him." In July, the two visited relatives in India. After Raghavan's husband died in 2012, she resolved to guard her health. "I need to be an extremely feisty 80-year-old," she says. "I can't get tired of caretaking. That is not an option."
4:22 p.m. / Chicago
Melida Butler, 83, was always a "fiery, hardworking, upbeat Caribbean woman," recalls her son Marcus Waller. But by 2001, Butler was so disabled by rheumatoid arthritis and a spinal infection that Waller, 56, moved home. He works full time as a mail handler, then helps his mom exercise, eat and bathe. "For me to not be able to lift my mother's spirits is just one of the most disheartening things that I've ever had to endure," he says.
5:02 p.m. / Nashville
When Peter Rosenberger met his wife in college, he noticed that she walked with a limp. "But I just saw the courage, saw the beauty," he recalls. Gracie had been in a car crash, and the pain from her injuries has never gone away. To ease it, she has had dozens of operations, including two leg amputations. In search of balance, Peter, 52, took up the martial art of hapkido. Caring for Gracie, 49, means embracing happiness in the midst of pain, he says: "Even while you have tears on your cheeks, you can experience deep levels of joy. You're not cut off from life. This is life."
6:23 p.m. / Outer Banks, N.C.
In 2005, Alice Arnold's husband, D.W., was injured in a mortar attack in Iraq. The Army chief warrant officer broke one of his knees, both of his ankles and seven disks in his spine. The explosion also caused a traumatic brain injury that has gradually led to confusion and short-term memory loss. Alice, 69, helps keep him on track. A hot tub soothes her arthritis as well as his pain. D.W., 65, can get aggravated by his limitations. "I see him struggling," says Alice. "He used to run every day — three, four, five miles — and now just walking can be a challenge."
11:04 p.m. / New Orleans to Los Angeles
Melissa Lee lives in New Orleans; her widowed father, Joseph, stayed in the California home where she grew up. But a heart attack last year led to a cascade of health crises for Joseph, 79. Now Melissa, 42, shuttles back and forth to see to her father's care. "He's always taken amazing care of me," she says. "Now it's my turn." In hospitals, part of her role is to "represent who he is as a human being," she says. "To say, 'This is a man, and here are his wishes.' " Kindnesses from friends and relatives help her to endure the emotional stress, she says: "Just sitting with you. Or picking up your mail while you're gone. It goes a long way."
16.6% of Americans provide unpaid care to an adult
7% of caregivers live more than two hours from the person they help
One-quarter of care recipients have problems with memory
40% of caregivers are men
56% of caregivers work full time
2 million Americans are caring for their own adult children
13% of caregivers are assisting a friend or neighbor