What Is the Best-Kept Secret of Caregivers in America?
40 percent of them are men
Male caregivers in America form something of an invisible army. About 16 million men care for a family member or friend; that’s 40 percent of caregivers for people over 18. The role of male caregivers remains hidden partly because they don’t feel “comfortable asking for help, and they don’t necessarily know where to turn,” says Jean Accius, vice president at the AARP Public Policy Institute.
Men face the challenges and rewards of all caregivers.
The University of Michigan healthy aging poll, cosponsored by AARP, showed that 4 in 5 caregivers found the duty at least somewhat stressful, but even more found it rewarding. Almost all said it made them more aware of their own future needs. Among male caregivers, a quarter help with feeding and bathing, 29 percent with dressing and 30 percent with the bathroom, according to “Breaking Stereotypes,” an AARP report. More than half perform nursing and medical duties.
Men who haven’t thought of themselves as caregivers “should consider that they probably will be,” says C. Grace Whiting of the National Alliance for Caregiving. By 2050 there won’t be enough family caregivers to support an aging population, according to an AARP analysis.
We talked to some men who care to get their wisdom and advice.
Even in his retirement, John Bordeaux lives a life of precision and routine. His home is meticulous — no clutter, family pictures lined up neatly on the walls, a coffeepot and coffee cups arranged on the table in case visitors stop by. It’s the precision learned in a career as an Air Force fighter pilot and instructor. Those skills come in handy for caregiving.
John, 78, cares for his wife, Iva, also 78, who has dementia. Besides seeing to Iva’s needs, John takes care of the dishes, the grocery shopping, the banking, the yard and the dozens of other tasks that come with maintaining a home. “It breaks my heart to see her struggle to do the things most take for granted,” John says. “These are the reasons that I want to do everything for her.”
His role: “I don’t believe most people I associate with look at it as anything different than just living together and doing what one does to support a spouse.”
Lesson: “Just deal with the situation at home in a mature fashion. That’s what I try to do.” John also has started attending a support group, which helps him mentally and also provides practical advice for daily challenges. “I’m learning how to better respond to her when she doesn’t quite understand what’s going on—choosing the proper phrase and how to keep her calm.”
Worst moment: Iva recently wandered out of the house into a wooded area. John looked for her, notified police and learned that construction workers had found her. “That was the worst moment in my entire life — to wake up and find that she is not there and I don’t have a clue where she is. The circumstances could have led to disaster. Fortunately the weather was decent, but had it been in the dead of winter, things could have turned out very differently.”
Best moments: “She seems to be a little more lucid at times, and maybe she’s understanding the situation. She thanks me a lot for sticking by her. There seems to be some lucidity there at times—that really helps me.”
Santa Fe Springs, Calif.
Juan J. Huerta, 65, strokes his mother’s hair and wraps a blanket around her. Sitting in an armchair, Zenona Huerta, 99, tries to speak. Huerta takes her hand, calls her Niña and explains that he doesn’t understand what she’s trying to say. Zenona was diagnosed with Alzheimer’s disease a decade ago. She often doesn’t recognize her son but sometimes calls out his childhood nickname: Juan Jo.
Transition to caregiver: Zenona would kick, bite and spew bilingual curses when Juan tried to bathe her or give medication. “I felt like I was in a [prison] cell,” he says. “She didn’t know what was happening to her, and I didn’t know how to handle it.” Juan got some assistance from the University of Southern California Family Caregiver Support Center, and medication adjustments helped calm Zenona and reduce her anxiety.
His role: As a man, Juan often runs into skepticism that he can handle caregiving. “If I want to do something for my mom, and [women are] there, they say ‘No, no, no, I’ll do it.’”
Worst moment: While visiting family in Mexico, Juan slept on the floor near his mom’s bed. “I was supposed to be there to take care of her. Instead, she tripped over me and fell. Oh my God, she started crying, and my mom never cries. I turned on the lights, and all of her face was bloody. It was bad. Real, real bad.”
Best moment: Juan and his mom listen to jazz, classical or ranchera music every day. “My best time is when she’s happy and we can dance and sing. She doesn’t remember how [to dance], but she tries. She looks at my feet and tries to follow.”
—Mary Helen Berg
Fort Lauderdale, Fla.
More than 5 million Americans are caregivers to veterans, but Philip Licari, a World War II Navy vet, finds himself on the other side. For the past 10 years he has been caring for his wife, Jennie, 87, who has Alzheimer’s. “I do the cooking. I do the laundry. I do the floors,” Philip says. “I appreciate all the help I can get. I’m 92. I never thought I’d be doing all this work.”
Transition to caregiver: “In the beginning, when you don’t know, everything is a challenge. You learn as you go. I’m proud of what I do. I hear from her how much she appreciates what I do for her.” Jennie attends an Easter Seals day care program for Alzheimer’s patients three times a week, and an aide comes to their home three days a week to give Philip a break when he’s been up late caring for Jennie.
Coping with Alzheimer’s: “No matter what they say, they’re always right. No matter what they do, it’s hard to correct. You don’t want to make them feel bad. Whatever you do, you try to please them. I learned the hard way how to take care of my wife. When she wants to eat, make what she wants. I buy everything she likes; then I have an option to give her.”
Advice: “That’s your wife. You’re in love with her. The first thing you do is make her comfortable, treat her with respect and tell her, ‘We can do this together. Don’t worry about a thing.’” Their children live in distant cities, but Philip knows the situation could be worse. “A lot of people in my building, they’re not with us anymore because they had no one to take care of them. I thank the good Lord that I’ve got what I’ve got.”
Worst moments: “There’s time when I’ve cried in bed because I miss her. We used to play golf together three days a week. We can’t do that anymore. That hurts.”
Best moments: “Anything I can give her that makes her happy, then I’m happy. I satisfy her with a good dinner. I take her to the mall. I take her bowling. We thank God that we’ve got each other.”
Peter Anderson, 67, has been caring for his wife, Louise, also 67, since 1995. That's when she began losing movement in her limbs, after being diagnosed with progressive multiple sclerosis a decade earlier. At first, Peter went home from work every day to help her use the bathroom and make lunch. In 2004, as Louise's condition worsened, they hired a home health aide.
His role: “Word of mouth is that men seem to be more squeamish about some tasks, like changing diapers,” Peter says. But he says he deals with it. “You can always wash your hands.”
Biggest challenge: “It was literally not knowing what to do as things happened. I don’t think that’s male-specific. Most people aren’t educated on what to do.”
Advice: “I try to anticipate what she might want in a given situation. For example, ‘I’m kind of hot. Is she hot?’ Try to be sensitive to what they might need.”
Worst moment: One day, Louise seemed “off.” Peter later found out she had a pulmonary embolism. “That can kill you in hours,” he says, adding that he got her to the hospital in time for medical attention. “Sometimes, you feel very alone when it’s up to you to make a call and you don’t know what you’re supposed to do.”
Best moments: “The times when I realize what I’m doing is allowing Louise to stay home instead of being in a nursing facility.”
Each morning, Frank Whittaker makes breakfast — usually biscuits and gravy with hash browns — for his wife, Doris, 83. Then the 81-year-old must execute a procedure that helps clear fluid in her right arm (the result of removal of lymph nodes during breast cancer surgery). Later, they go to McDonald’s for lunch. “She always wants a McChicken sandwich, a Diet Coke, french fries and an apple pie. And she eats every bite,” Frank says.
Six years ago, Doris had a stroke, which left her unable to speak. She is paralyzed on her right side. “We will have been married 62 years in November,” Frank says. “That’s why I do what I do.”
Lesson learned: “I have to do it all — cooking, the personal stuff. I would have every red-blooded American man know when he says, ‘Til death do us part,’ that he has to really mean it.”
Advice to other caregivers: “All of our children have power-of-attorney since I never know if something might happen to me.” Frank had bypass surgery in 1995 and still takes medication. But he is determined to look after his wife as long as he is able. “I won’t put her in a nursing home unless there is no choice. I can’t do enough for her.”
Worst moments: “The lowest point is simply seeing her being in the condition she is in.”
Best moments: “When she has a smile on her face. I get that smile when I cook her biscuits and gravy at breakfast. Our great-grandchildren were here yesterday, and she laughed all day.”