America is on the verge of becoming a nation of caregivers.
One in four American families _ about 22-million households _ cares for someone older than 50, according to a recent survey by the National Alliance for Caregiving. Countless others care for children and young adults. In the next few decades, as medical advances enable people to live to advanced old age, care requirements are expected to increase.
The job of caregiver may require just a few hours a week of grocery shopping, transportation and household tasks. Or it may require round-the-clock care for years on end. The typical caregiver in the NAC survey is a 46-year-old employed woman who spends about 18 hours a week helping her mother who lives nearby. About 41 percent of those surveyed have children younger than 18 as well.
Caregiving is not easy. It can be a heartbreaking, relentless task that breeds anger, resentment and depression. Yet beyond those feelings, caregivers say they have found personal growth and fulfillment. The four caregivers profiled here say their efforts have changed them for the better, in ways they could not have predicted.
A lifetime of love
William P. Culhane, 63, of Clearwater spent much of his Navy career piloting a P-3 Orion over the North Atlantic and Mediterranean, hunting for Soviet submarines. These days, he rises early to bathe, toilet and dress his son, Chris. At 27, Chris has the mental level of an 18-month-old.
When Culhane retired as a Navy captain in 1983, he considered teaching history or working for a commercial company in foreign military sales. His wife, Linda, however, wanted to pursue a nursing career often interrupted by the family's many moves and the caregiving demands of Chris and his two sisters.
Culhane decided, in fairness to his wife, to stay home with Chris and volunteer for several organizations that had helped the family in the past.
Commanding a patrol squadron was demanding, but the job ended at 6 p.m. "I was surprised by the emotional drain of caregiving and the almost constant need to be available," Culhane says. "Even though I helped on the weekends (when Chris was young), I didn't realize the amount of care necessary until I started doing it myself."
Weekday mornings, Chris goes to UPARC (Upper Pinellas Association for Retarded Citizens) for activities and field trips. Father and son run errands in the afternoon, then the two prepare dinner. Most evenings, Chris talks on the phone with a friend from his school days. "They like to identify the letters on Wheel of Fortune, the television show," his father says. Or Chris may play with his 24-piece puzzles or other toys, a collection amassed over the last 25 years. Culhane gives his son a shower, dresses him in his pajamas and tucks him into bed before 8 p.m.
Caring for another person has made Culhane more compassionate and a better citizen, he says. As a volunteer at UPARC, Culhane is a vocal advocate for retarded citizens and other recipients of social services. He is on the UPARC advocacy committee, lobbying for rights and treatment of the mentally retarded _ more facilities, recreational access, transportation.
Recently, he branched out into foster care, child and elderly abuse, adoption, mental health, alcohol and drug abuse as a member of the health and human services board of the Department of Children and Families.
In lobbying lawmakers, Culhane stresses that providing families with respite care saves tax dollars by keeping institutionalization costs down. "If the state doesn't give caregivers a break, the caregiver will break down and the state will be responsible for the whole ball of wax," he says.
He speaks from experience. For six months, Culhane cared for his son non-stop while waiting for a vacancy in the UPARC program. "It was very difficult to keep him energized, interested and motivated for hours and hours on end. It was very debilitating. I'm not sure I could have done it over the long haul," Culhane says.
A wheelchair stays in the trunk of Culhane's car because Chris has trouble climbing stairs and walking long distances. He has five or six seizures a month that cause him to lose consciousness. "Chris becomes a dead weight, and he's 5 feet 2 and weighs 155 pounds. So if we're stuck at Dillard's and the car's a mile away in the parking lot, we need the wheelchair," his father says.
Despite Chris' physical condition, the Culhane family has gone camping in Maine and canoed 120 miles down the Green River in Utah. Such adventures give his parents great satisfaction. "Here we are a hundred miles from the nearest road," Culhane says. "It's kind of exciting to expose him to a situation that seems inconceivable that such a frail individual could survive in this wilderness."
Caregiving for Chris will be lifelong for his parents. "The person I'm caring for is younger than I am, and I will care for him the rest of my life," Culhane says. "So if we want to go to Europe, we take him with us." Last spring, they visited an Irish castle that their ancestors had defended in 1600. Culhane also can attest to the lack of handicapped access in Spanish fortresses built in 1482. ("People just help you carry him, so we get there.")
Raised as an only child, Culhane admits that he was accustomed to doing what he wanted when he wanted. "I'm much better now, but I used to have a lot of problems when my best-laid plans fell apart because Chris had a seizure and couldn't go to school that day, so I'd have to cancel meetings. Sometimes I'd think, "Why does it have to be so hard? Why can't I be like everybody else and just go to that 8:30 meeting?' "
Successful caregivers tend to be realists: The Pollyannas burn out fast. Culhane acknowledges the bad moments. "Truthfully, I wouldn't mind being the horrible selfish person I was before and not have Christopher in the condition he's in, but you don't get that choice."
The Culhanes wrestle with the long-term plans for their son's care. While his wife would not object to placing him in a good group home, Culhane is ambivalent. "Chris is so vulnerable, and I'm afraid of the unknown. It's a problem with parents in our situation. At what point do you turn loose of your child and let them go to a residential center?"
One thing that holds him back is the knowledge that there is a severe shortage of residential placement in Pinellas County. "The waiting list is years long, and some of the other caregivers are quite elderly. I'm told there are 50 to 60 parents over age 70 in upper Pinellas caring for a retarded adult child at home . . . As long as we're capable of caring for Chris, I don't want to take a placement away from someone who really needs it."
Meanwhile, Culhane does as much as he can with his son. The extra effort sometimes brings unexpected rewards. "(Chris is) a hero to his nephews. With the wheelchair, we always get to the head of the line at Disney World," Culhane says.
At 71, caring for a parent
Statistics are not available on how many caregivers older than 65 care for someone age 80 or 90, but it's a trend that health care experts expect to grow.
For five years Sister Dolores Keller, 71, of Dunedin, has cared for her 91-year-old mother, Stella Keller. Finding a balance between caregiving and work was important to her after her mother's health deteriorated, Sister Dolores says.
"Mom came first, and I knew I had to cut back. I learned to draw back (from activities) without self-pity," she says. "Then I realized I couldn't exist without being involved with people. I'm a people person. And Mom didn't want me to give up the things I love."
Known around Dunedin as "Sister D" _ it's even on her license plate _ Sister Dolores resigned from seven of the boards and committees she served on but retained a spot with three. She reduced her work week from five days to three.
Voted Florida's Teacher of the Year in 1978, the former teacher is in charge of pastoral ministry for the homebound elderly at Our Lady of Lourdes Catholic Church in Dunedin. She organizes transportation, housework, grocery shopping and distribution of the Holy Eucharist for homebound parishioners. She also writes a newsletter and runs an activity group for the healthy seniors in the parish.
Outside help was the key to Sister Dolores' balancing the work/caregiving equation. A home health aide from Neighborly Senior Services spends a few hours five days a week helping her mother with personal care and light housework at her apartment.
Sister Dolores, who lives in the same apartment complex as her mother, visits her three or four times a day. Her mother takes a tram to the Meals on Wheels at a congregate dining center at lunch and spends her afternoons napping, writing letters, praying or keeping a journal. On the weekends, the women go to church or out to eat.
Apart from chronic back trouble, Sister Dolores says she is in good health. A mild stroke in 1992, however, taught the self-described independent woman about depending on others. For more than a month, a group of young mothers from the church cooked, cleaned and cared for her.
"It was a marvelous learning experience," she says. "It was a revelation to me to be waited on. If you can't do something, you've got to be wise enough to know you submit and be grateful."
Many caregivers try to make life perfect for their ailing loved one, then feel guilty when they fail. When her father was seriously ill in a nursing home some years ago, Sister Dolores learned she could not solve every problem and eliminate her father's suffering. A friend who asked to pray with her helped her to see the dangers of perfection.
"She prayed that I would learn not to be a savior to my parents. I thought (she) is prophetic." Keller realized she had done her best so she accepted her father's pain and eventual death as God's plan. "Then I was at peace," she says.
For respite, Sister Dolores counts her blessings, prays often and talks to friends about common caregiving experiences. Occasionally, family members assume her responsibilities so she can travel.
Caregiving demands can try anyone's patience, even a very patient nun's. Her mother's memory loss means Sister Dolores must remind her of simple instructions.
"I can get tired and crabby," she says. "I can get sharp with Mom, but she's so gracious. She'll say, "I know. You just told me (the same thing) three times within the last minute.' I'll say, "Well, yes, as long as you can remember that, you're okay.' "
Parenting a parent can be an awkward and uncomfortable transition, but Sister Dolores says it has taught her "the resilience of the human spirit."
"Both of us have grown and adapted. When I have to step in and make decisions, I see her graciousness in accepting it. And I have learned to use the gifts and skills I have to be creative and inventive in her care."
She also relishes the opportunity to know her mother as a friend, not just a parent, learning the details of her mother's life. "She showed me some cake tins that she bought on time for 25 cents a week in 1925 because she couldn't afford to buy them. How many of us realize how our parents struggled and the sacrifices they made for us?"
Sister Dolores and her sister have videotaped their mother's reminiscences for her 22 grandchildren, 50 great-grandchildren and four great-great-grandchildren.
"It's important to me to know that I am where God wants me to be," Sister Dolores says. "The fact that I've been a public speaker, I have written, I have traveled, I have taught, I have organized . . . I am using those skills right now. Nothing in life is done in a vacuum. We build on it. I'm so grateful that I can use what I know.
"Let's face it," she adds with a laugh. "Given my personality, I probably enjoy being in charge."
Knowing when to ask for help
Bernard Lilavois describes himself as "the father of two, plus one angel."
The angel is Bradley, born "a perfect baby" on April 30, 1992, in Manhasset, N.Y. Two weeks later, Bradley grew lethargic. Doctors diagnosed spinal meningitis. Lilavois, 39, and his wife, Diahan, were told that their son would live for a month at most.
"Our first thought was to keep him as comfortable as possible until he went to heaven," says Lilavois, a St. Petersburg respiratory therapist. The couple quickly decided that Bradley would fare best in a warmer climate, so Diahan took the baby and his brothers, Shamir, 11 and Brandon, 7, to live with her mother in St. Petersburg.
For a year, Lilavois worked in New York, traveling to Florida every eight weeks to see his family. When he joined them in St. Petersburg, he chose to stay home and care for Bradley while Diahan, a registered nurse, supported the family.
Bradley's room became a miniature intensive care unit, where he slept most of the time under sedation for pain and seizures. After his first birthday, his chest congestion worsened, so his father performed chest percussion therapy day and night. Twelve to 15 times a day, Lilavois would cup his hand and vibrate the baby's chest to break up secretions that he suctioned out.
"We were so afraid he would drown in his own fluids," Lilavois says. "I would put him to sleep on my chest and wake up several times a night to suction him. I wore a monitor and put one by Bradley's bed. Whenever he coughed, I knew he needed to be suctioned."
Bradley's brothers, at ages 5 and 9, learned how to suction their brother when their parents were unable to react immediately.
Six sleepless months later, doctors found a medication that helped reduce the congestion. By the time Bradley was nearly 3, his condition had stabilized enough that Lilavois returned to work.
Lilavois and his wife rode an emotional roller-coaster, he says, because Bradley's condition would decline periodically. The caregiving required Herculean effort.
At one point, Bradley developed gastro-esophageal reflux, or heartburn, regurgitating into his feeding tube.
"It was very painful. The acid was almost eating the flesh away" at the feeding tube site, Lilavois recalls. "I was like a zombie. I would go to work, come home, medicate him, take care of him. Often he had diarrhea, so we constantly had to change him or his skin would break down." Doctors finally found a treatment to control the reflux.
Because of their medical backgrounds, Lilavois and his wife thought they could manage Bradley's care without help. But after three years of struggling alone, the stress was overwhelming, and they looked for help.
"We said this is our battle. We don't need anybody. We're educated. If we had reached out earlier, we would have saved ourselves so much pain," Lilavois says.
A support group at Children's Medical Services at All-Children's Hospital in St. Petersburg was an "eye-opener," Lilavois says. It provided emotional bolstering plus valuable information.
"At first we thought we were alone, but in the Windmill support group we had other kids with respiratory trouble, Down's Syndrome and other problems," he says. Families shared tips on financial and medical resources, and Lilavois discovered that he could help others as much as they helped him.
As his condition worsened, Bradley developed sleep apnea. A light sleeper, Lilavois would listen for his son's cessation of breathing, wake up and rub the boy's chest and head until he resumed breathing.
"You're sitting up at night with this child, and you don't know if he'll make it until morning. I was trying to be strong for my wife, so I did a lot of my crying at night when everybody was asleep, walking the floor with this child."
The hospital recommended that they take Bradley to a local day care program for disabled children to provide them some respite. "One day I was called at work from the center," Lilavois says. "Bradley was having a bad episode. They thought he was going to die _ he was turning all blue."
The center suggested that the family contact Hospice of the Florida Suncoast; it was a difficult decision for them to make. Friends from church reassured Lilavois that he had done his best and that he owed his wife and two other children his love and attention. To see how Bradley would fare, they left him at a residential Hospice facility for a weekend. Later, they decided to place him there permanently.
The family's devoted care never slackened. For nearly two years, they visited Bradley every night, often staying until midnight or later if he were in pain or couldn't sleep. They celebrated his birthdays and decorated his room for every holiday.
"Some nights, driving home from Hospice, I would almost fall asleep at the steering wheel," Lilavois recalls. "We'd work eight hours a day, pick up the boys, grab dinner at Wendy's or McDonald's and stay at Hospice for half the night. We were never sure if we'd get home and they'd call to say Bradley didn't make it."
In November 1997, the family wanted to show their gratitude to Hospice, so they cooked a Thanksgiving meal for the staff and clients. "We came home and the following morning Hospice called and told us Bradley had passed," his father says quietly.
Although Bradley never learned to walk or talk, Lilavois believes his son recognized his family's voices. "He knew us by the way we hugged him and cared for him. He was a beautiful baby. He'd give us that big smile.
"Caring for Bradley gave me a second heart," Lilavois says. "I learned that the nicer you are to people, the more God blesses you. I look at people in a different way now. I find myself reaching out to people I don't even know because so many reached out to us."
After Bradley's death, the family received cards and letters from all over, from friends of friends touched by the story of the Lilavoises' devotion to their son.
"Bradley filled up the whole church for his service," his father recalls. "That's the way he spread his love. For five years and seven months he lived a full life and touched so many people. And every day I kept him alive, I did my best."
Mom comes home
When Nina Wolfson wants to entertain her mother, Alice Gavzy, she drafts a grocery list organized by aisle order and sets the 82-year-old Alzheimer's patient loose in Publix. "Nothing refrigerated or frozen, all dry goods, canned goods or cleaning products," Wolfson says. "She'll spend hours in there, looking for stuff. It really makes her happy."
A creative touch and a healthy sense of humor have helped Wolfson, 43, turn her Temple Terrace home into a modern multigenerational household. Five years ago, her widowed mother moved in with her, her husband, Bill, and their two sons, Joey, 8, and Stevie, 6.
Although nearly half of all care recipients live alone, about one-fifth live with their caregivers, according to the NAC survey. Nearly 70 percent choose this living arrangement because of the care recipient's medical needs, the survey showed.
After her husband's death from arteriosclerosis six years ago, Gavzy grew depressed and reclusive. Wolfson, her two brothers and a sister persuaded their mother to sell her large New Jersey house and move to Florida. Many social service experts advise families to think hard before combining generations because of the stress that it can create in a family, but the arrangement works well for the Wolfsons.
"There really was no alternative. My sister lives in Italy, and my brothers weren't able to help out. If Mom stayed in New Jersey, none of us would have had a chance to visit her much," Wolfson says.
Her mother considered, then rejected, other housing options in Florida. Wolfson was afraid her mother would isolate herself and not make friends at a retirement complex. "By that time, we'd bought a five-bedroom house, and I wanted to keep an eye on her," Wolfson says. So Gavzy occupies a bedroom with private bath that is separated by a pocket door for extra privacy.
A couple of years ago, Gavzy began complaining about her memory. The changes were subtle at first. "She knew who the president was and what day of the week it was," Wolfson says. "But she would get lost driving the car and just meander around until something looked familiar. She always had a bad sense of direction, so it was hard to tell."
A year ago her mother was diagnosed with Alzheimer's. She participates in a clinical drug trial at Suncoast Gerontology Center in Tampa, where Wolfson goes for advice and counseling.
So far, caregiving demands haven't been onerous. Gavzy can dress and bathe herself and stay alone while Wolfson runs errands. Money management and paying the bills are Wolfson's chief tasks. After a couple of dunning letters to Gavzy, Wolfson persuaded her mother to open a joint bank account with her. "We haven't had the keys in the oven problem yet," she says, referring to the tendency for Alzheimer's patients to put things in odd places, "but she wasn't recognizing invoices and there were papers all over the place."
Because of Gavzy's tendency to say yes to every phone solicitor who calls, the family has had its phone service switched often from one company to another. "We just tell them to switch it back," Wolfson says good-naturedly.
For safety concerns, Wolfson persuaded her mother to stop driving last July. Gavsy turned over the car keys when Wolfson came up with the ruse that her younger brother needed the car.
Wolfson says her first reaction to the Alzheimer's diagnosis was selfish: "Is this hereditary, and is it what I'm destined for? My next thought was, "Okay, this is going to be a lot of fun,' " she says sardonically. "I was anxious, but we calmed down because Mom is still very much a functioning human being. Plus, I get periodic breaks when she goes to Italy to visit my sister for several weeks."
A year ago Wolfson took a leave from her job as a software product marketing manager so she could spend more time volunteering for the Cub Scouts and the Museum of Science and Industry in Tampa. She has extended that 12-month sabbatical indefinitely to accommodate her mother's care. "I've been working since I was 15, so I'm happy to take a break," she says.
Most mornings, Gavzy is in her room until Wolfson takes her sons to school. Then she helps with housework, reads books and newspapers, putters and watches TV. Her favorite PBS hour-long shows have given way to the Weather Channel and local newscasts, which require a shorter attention span.
There are household conflicts, but Wolfson ignores them. "There are some images of grandmothers being sweet, loving types _ Mom's not like that. I just compartmentalize. She can be grumpy and critical. We're not as strict with our kids as she would like. Boys like to roughhouse, particularly at this age, and if there's nothing breakable, I say go ahead."
Still, Wolfson relishes the chance for her boys to really get to know their grandmother, even as she fusses at them for squabbling or putting their feet on the furniture. "When she's away, they miss her and ask when she's coming home. It's wonderful for her, too."
Wolfson says without her husband's support and cooperation, the arrangement wouldn't work. Private time for them has been minimal with kids and an older adult under the same roof. But they manage an occasional evening out.
Some caregivers report feeling frustrated or trapped by their commitments. Not Wolfson. "Once a week I have my reprieve and play the flute with the Tampa Community Band. I keep very busy, so there's not a lot of time to ponder the fate that life has dealt me."
She also has "a safety blanket" _ her mother's long-term health care insurance. "If this gets to point where it is negatively impacting my family, or if I feel I just can't deal with it any longer, Mom does have insurance to pay for a nursing home," Wolfson says.
"I'm a bit surprised to find I'm more patient than I thought. I can have the same conversation a couple of times a day (with her mother) and just shrug it off," she says with a laugh.
Caring is a family tradition she's proud to continue: Her father dropped by his parents' house daily, she says, and every Sunday, Wolfson and her siblings visited their grandparents. "I'm trying to imprint those lessons on my kids in case I need help someday."
For Rosalynn Carter, a personal stake
There are four kinds of people, says former first lady Rosalynn Carter: Those who have been caregivers, those who are so now, those who will be and those who will need caregivers.
Caregiving is a universal issue that deserves more recognition, says Carter, who wrote Helping Yourself Help Others, (Times Books/Random House, 1994, $20) to address the challenges caregivers face.
Growing up in southwest Georgia, Carter had firsthand experience with caregiving.
"When I was 12, my father became terminally ill with leukemia," she says. Her father died a few months later, leaving her mother at age 34 with four young children and few resources.
"Eleven months later, my mother's mother died and grandfather came to live with us," she says. "Mother cared for him for 25 years. I watched her juggle the duties of working in the post office, rearing her family and caring for her father in his old age."
Although family and friends helped, Carter says caregiving demands tied her mother down for years. The former first lady's frequent travel for the Carter Center and the Rosalynn Carter Institute means she is often a long-distance caregiver _ checking frequently on her mother, Allie Murray Smith, who lives in Plains.
"Caregivers often forget about their own needs," Carter says. They can make their job easier, she adds, by educating themselves about their loved one's condition, asking other family members for help, joining a support group and planning for a potential crisis.
The Rosalynn Carter Institute's recent two-year study of caregivers revealed the positive side of a demanding duty.
"For many, caregiving deepens their compassion, strengthens their ability to listen, builds confidence and dispels fears of the sick or disabled," Carter says. "Providing care has turned some into outspoken champions for those who cannot fight for themselves."
Elizabeth Pope is a freelance writer who lives in Tampa.
Bill Culhane of Clearwater, retired from the Navy, now spends his days caring for son Chris, 27, who has the mental capacity of an 18-month-old. Even the brushing and rinsing of teeth requires a helping hand. Culhane says caring for another person has made him more compassionate.
Father and son share a walk to class at the Upper Pinellas Association for Retarded Citizens, where Culhane takes Chris on weekday mornings. Although Chris sometimes uses a wheelchair, the exercise does him good.
As did the child, so does the adult. Sister Dolores Keller, 71, clasps the hand of her mother, Stella Keller, 91.
Sister Dolores Keller shares a prayer with her mother, Stella Keller, 91, at her mother's Dunedin home. Sister Dolores lives in the same apartment complex and visits her mother three or four times a day. "Both of us have grown and adapted. When I have to step in and make decisions, I see her graciousness in accepting it," Sister Dolores says.
Diahan Lilavois of St. Petersburg holds a tiny framed picture of her son, Bradley, who was cared for until his death at age 5 by family and Hospice.
Nina Wolfson of Temple Terrace opened her home and heart to her mother, Alice Gavzy, 82, who has Alzheimer's. Also sharing the home is Wolfson's husband, Bill, and their two sons, Joey, 8, and Stevie, 6. "I'm a bit surprised to find I'm more patient than I thought. I can have the same conversation a couple of times a day (with her mother) and just shrug it off," Wolfson says.
Former first lady Rosalynn Carter, shown with her mother, Allie Murray Smith, knows firsthand the joys and trevails of caregiving. She is the author of Helping Yourself Help Others.