BY BETTY BOOKER
RICHMOND TIMES-DISPATCH STAFF WRITER
© 2004, Media General, Inc. All Rights Reserved
Monday, December 29, 2003

Wesley T. Carter has a new role at 96: He has joined the growing ranks of male caregivers.

This late-life task presented itself to this dignified retired educator when his wife, Louise Byrd Carter, 94, had a massive stroke last year a month after their 69th anniversary.

It left her bedridden, partly paralyzed and dependent on her husband. That's a new role for her as well.

Nearly one in three of the nation's estimated 52 million caregivers are men who are being called on to help with the often-grueling, expensive, life-changing task of providing care.

Women still do most caregiving, but male caregivers increased by 50 percent between 1984 and 1994, according to the National Long Term Care Survey.

There's no end in sight for husbands, sons and male partners, predicts Dr. Donna Wagner of Towson University in a 1997 report for the National Alliance for Caregiving.

The 78 million-member baby-boom generation is aging, and the number of people with chronic diseases increasing.

With more women working outside the home, men have had to step in, notes Dr. Betty J. Kramer, author of "Men as Caregivers: Theory, Research and Service Implications."

Families are smaller, like the Carters', leaving fewer hands to lighten caregiving tasks. Economic forces have pushed families across the globe and far from aging relatives. For example, the Carters' only child, Dr. Wesley Byrd Carter, a psychiatrist, directs a psychiatric hospital in Leesburg.

Most men "don't even think of themselves as caregivers" and, therefore, rarely ask for information or for help to lighten the task, notes Dan Phillips, a retired Army colonel who heads the Male Caregiver Support Program at the Peninsula Agency on Aging in Newport News.

"They say, 'This is my spouse. This is what spouses do for each other.'"

That's Wesley Carter's take on his situation, too. Although he was pragmatic enough to hire nurses to help when he realized that 24-hour care was more than a nonagenarian could manage.

"Marriage is about commitment," Carter says. "You have to learn to compromise and to negotiate to stay married a long time. It's what I'm committed to, for better or for worse, in sickness and in health.

"There is no way that I would put my wife in a nursing home. She was in a nursing home after her stroke, and the things I saw happen you wouldn't believe. No, she's better off at home, in her own bed, where the nurses can take care of her better. When she came home, she smiled. She was home. Her health is better since she came home."

Carter forbade a photograph of his ailing wife. "Too personal," he says, offering instead their 50th-anniversary portrait and pictures of their wedding day 70 years ago, taken by his brother with a box camera.

"Everybody in this picture is dead except for Louise, me, the flower girl, Pauline Rollins Ware, and the ring bearer, that's Melvin 'Blutsie' Byrd Jr."

"We got married on Sept. 7, 1933. It's etched inside my wedding ring: WTC LBC 9-7-33," he says from memory.

"St. Stephen's Baptist Church, that's her home church at Central Point. Her grandfather helped build that church. She's still a member. For 60 years, we drove to Caroline County every other Sunday. Rain, snow, sleet." She added her alto to the church choir.

The Carters have had a busy life, both teaching for decades in Richmond public schools - he as an Armstrong High School math and science teacher, audiovisual director (and study hall teacher with 250 students "because they thought I was a good disciplinarian"). Louise Carter, her high school's valedictorian and an honors graduate of Virginia Union, was a special education teacher of nearly three dozen subjects to homebound students.

They were involved in community organizations, social clubs, university alumni groups, college sorority and church programs involving hundreds of people in several generations. The family-room walls of their North Richmond home are covered with awards.

Carter eased into caregiving when his wife tripped and fell in 1999, leaving her cognitively aware and mobile but, for unknown reasons, unable to speak or to swallow anything but liquids. They went everywhere nonetheless. She wrote what she needed to communicate.

He noticed, however, that some shied away from conversations with his lively, friendly wife. "I think it made them feel uncomfortable, but it was hurtful. She could still communicate by writing.

"She has to communicate with her eyes now. I can understand her. But I can count on my hands her old friends who have come to visit her. I don't know why people don't do that. Maybe they feel awkward. Some have been loving to us, though.

"It's not hard to talk to her. You just sit by her bed and talk about what's going on in your life, talk about the weather and people and news and anything you're thinking about. I do that with her. I miss having her talk back, but I think she understands."

Phillips notes that many caregivers report a dwindling away of acquaintances.

Phillips says that in his talks to civic clubs, he asks how many notice when longtime members suddenly stop attending meetings.

"When someone remembers to call the person who is stopping coming to say he's missed, he'll say, 'I had other things that needed to be attended to.' How many of you follow up by asking about his wife? Taking care of his wife is often the reason for the absence. People turn their backs on caregivers. They don't mean to do it. They're not comfortable even hearing about it."

Meanwhile, Carter's days are dominated by the comings and goings of four round-the-clock nurse's aides, whom he pays from the couple's life savings.

"I provided for my future in my early life. Sure drains you though."

How much does caregiving cost? "That's rather personal," he says, politely disapproving the question.

But the math isn't difficult: $10 an hour x 24 hours a day x 30 days a month = $7,200. In Richmond, agency rates are typically higher.

Carter is dropping out of his men's club after 60 years. "I'm the oldest one. Everybody else is 30 years younger than me. Maybe they're going to make me an honorary member so I wouldn't have to pay."

Phillips says, "The bottom line is this: In this society, men are the providers of their spouses, and they tend to think, if I can't take care of my wife, am I not a good husband? It's my responsibility to take care. It's a vow that I took, for better or for worse.

"Men are having to stretch to be caregivers. It's a new and difficult territory for them.

"But those who have been in it for a long time are doing a very good job. Until you've walked in their footsteps, you don't know."

Better or worse

Spousal and parental caregiving by men requires going into new territory:

Problem-solve: Physically and emotionally, caregiving is hard work. Most people have to learn how to dress, toilet, bathe, feed, change and medicate another person. Ask for advice. Delegate jobs to relatives, friends and professional caregivers.

Advocate: Keep trying to find answers as you begin looking for assistance. Talk to the doctor first, then to your local area agency on aging if you or the care recipient is 60 or older. Educate yourself about the disease.

Honest: Be open about your feelings. Caregiving is a job for which few men have been prepared. Denial, disappointment, frustration, guilt and anger are common and in time tend to give way to acceptance. Many men feel lonely from the loss of a companion and friends; talking about that helps.

Humor: Laugh at the funny things that happen while caregiving. Laugh with the care recipient or friends, at funny shows or books, anything. Outlets: Find outlets for exercise, socialization and mental stimulation. Get sufficient sleep, including naps. Understand that friends, co-workers and relatives typically can't understand what you're going through until they've experienced caregiving. Join a caregiver support group to exchange practical ideas and to get support.

Lemons into lemonade: Keep a positive mental attitude. There are many pluses about caring for another person. If you experience negative behavior from your patient, stay curious about what's happening and try not to take the behavior personally.

Sources: Alzheimer's Association; "Caregiving!"; Peninsula Agency on Aging's Male Caregiver Program; www.webmd.com