The first time Margo Aparicio’s mother, Genevieve, mistakenly put her expensive new hearing aid in the water-filled denture box, Margo was furious. When Genevieve became hysterical, Margo understood that three years of nonstop caregiving had pushed her to a dangerous brink.
Rather than wallowing in guilt, Margo, 44, recognized she had to regain control. “I was freaking out — ballistic,”she says. “But I called my brother, a nurse in Chicago, and asked him to come help. Then I apologized to my mother, told her I loved her and that it wasn’t her fault. I realized she’d had another mini-stroke and didn’t know what she had done.”
The incident marked a turning point in Margo’s caregiving journey, from burnout to blessings. Nine years ago she rescued her mother, who lived 150 miles away, after her father died and Genevieve was near death from malnutrition and dehydration because of neglect by another caretaker. There have been financial crises because Margo’s own chronic tendinitis prevents her from working full time and because Genevieve’s income, at $650 a month, is too high for Medicaid but too low to afford most social or medical services. And there have been countless health emergencies because Genevieve, 81, suffers from diabetes, congestive heart failure, incontinence, and mini-strokes that caused dementia.
Margo perseveres in giving her best, however. “I would never not take care of my mother. She deserves to have as much of a life as she can.” To that end, Margo has worked hard to network and to take care of herself. Although she still averages 35 hours a week tending to Genevieve, who lives in an apartment directly above, Margo’s coping methods include an e-mail chat group sponsored by San Francisco’s Family Caregiver Alliance. Using her creative skills to help her mother retain mental abilities, she has created a family video and devised board games. After two years of trying, she recently enrolled Genevieve in a renowned adult day health program that also provides a few hours of personal in-home assistance such as laundry and dressing — all adding up to alleviating distress.
“You’ve got to have the ability to care,” says Margo. “For a while it was hard; I didn’t feel appreciated. We went through major battles over her expecting me to do everything. But it’s important not to give up; it’s important to get outside support.”
A nation of caregivers
America is graying. One in four U.S. households, or 22.4 ** million people, care for an older relative, an increase of 300 percent in less than a decade, according to the latest available survey by the National Alliance for Caregiving and American Association of Retired Persons. This is the tip of the iceberg: The number of people over 65 is expected to double in the next 30 years, with the over-85 population — those who need the most help to maintain autonomy — growing the fastest.
Nearly two-thirds of family caregivers work, half of them full time. Because many couples delayed childbirth to focus on careers, more than 40 percent of family caregivers, most of whom are women, also have one or more children under age 18 living at home. This “sandwich generation” phenomenon is pushing companies to add elder care to their menu of benefits; a recent study by the Families and Work Institute predicts that 42 percent of employees expect to assume these duties within five years.
We have become a nation of caregivers as advances in medical technology are allowing people to live at home with chronic conditions that would have killed them not long ago. So families are increasingly on the front lines of long-term care, providing services like home modifications, medication management or intravenous fluids that keep loved ones independent and out of costly institutions. Even though most families rally without skipping a beat, the complexities of caring for a frail loved one can be overwhelming. A recent [1996] survey by the National Family Caregivers Association found that a combination of isolation, the changes in family relationships and lack of personal time are the most common stresses of this midlife role — as well as long distance, which affects about a third of all caregivers.
“Yet the biggest strain isn’t always physical but emotional,” says Yvonne Baginski, who facilitates caregiver education workshops in Northern California. “Caregivers may have been trained how to give an injection, but they have no one to help them deal with the strain of the illness itself. Most people don’t have a clue they’re burned out until they’re in crisis, sick or have a heart attack. They don’t connect these things with caregiving.”
Sadly, a caregiver’s financial, physical or emotional burdens can lead to institutionalization of a frail relative before the medical condition might have required it. “There is no question that there is major stress in trying to balance work and family, especially among working Baby Boomer women who are taking care of Mom and grandparents and husband and family,” says Gail Gibson Hunt, executive director of the National Alliance for Caregiving. “But our surveys show that most family caregivers take this on not out of a sense of obligation, but out of love. This is not a pathological event but generally a positive one.”
Most of the time, with support and education, family caregivers not only cope with the need to give of themselves — they thrive on it.
“One of the lucky ones”
For Joanne Clark, 56, assuming care of her mother, Mae, five years ago was a natural life transition accepted with love and devotion. Yet becoming a caregiver has also meant juggling the competing demands of her own family, including baby-sitting twin four-year-old grandsons three days a week. At times, she says, it is “like living on the edge of a cliff.”
For five years after her husband’s death, Mae lived independently. But hip problems changed all that. She left her longtime Florida home and moved to New Jersey to live with Joanne and her husband, Steve. Although there are three supportive siblings, Joanne is the primary caregiver: Not only does she have the extra room, she is also a retired director of a nursing home and lives close to excellent medical care for her mother.
“I’m one of the lucky ones,” Joanne says of her situation even though at times she wishes she could escape the pressures. Mae, 84, has physical but not cognitive limitations, so Joanne takes her to doctors appointments, runs her errands, does her laundry and cleans her room. Although she carefully schedules each week to reduce strain, relying on community resources when possible — social workers, physicians, adult day care, church and friends — watching her mother’s decline is unrelentingly stressful.
“Sometimes I look at the person staring back at me in the mirror and I don’t believe what I see — the constant scowl, puffy eyes and a short-tempered monster,” says Joanne of the worst of times, when burnout sends her to the doctor’s office to monitor hypertension. Yet the resentment doesn’t last: Joanne knows these tough periods are temporary and that love is building a lifetime of memories.
To prevent burnout, Joanne talks to friends, joins on-line chats, gardens and reads. “Be prepared for the change in your life,” she advises. “Don’t be afraid to air your feelings; if you need help, ask for it. You’d be amazed how many people will reach out to you. Ask a friend to stay with Mom or Dad for a couple of hours while you take some time for yourself. They’ll love doing it and will gain a great deal of satisfaction. Most everyone has the need and capacity for giving and loving; give them the chance to fulfill it.”
Trish Dayan, a clinical social worker in Stamford, Conn., says, “The main problem is that caregivers feel they have to do it all, and do it all alone. Whoever starts the process gets involved in the day-to-day needs for food, clothing, medical care and shelter. Then the needs grow and the caregiver gets more involved. It’s a trap when you feel you’re the only one who knows what’s going on, the only one who can do it. That’s when burnout happens.”
“Because we live in a culture that prizes self-sufficiency and taking care of one’s own, caregivers tend not to seek help until a crisis hits. The absence of early financial and legal planning, lack of awareness of resources and poor family communication then result in anger, depression, guilt and helplessness. In rare cases emotional stress can lead to the premature death of the caregiver or to mistreatment of the loved one, although research shows that caregiver stress is not a major cause of elder abuse,” says Bonnie Brandl of the Wisconsin Coalition Against Domestic Violence.
Experts recommend tapping into community resources through each county’s Area Agency on Aging. These offices can suggest services like friendly visitors, peer counseling and Meals on Wheels. Nursing homes and residential care facilities also provide short-term care for loved ones so caregivers can have a respite break. Local chapters of the United Way, social service agencies, religious organizations and hospital discharge planners or social workers are also excellent resources for free or low-cost professional assistance with home care, legal and financial counseling, and care planning. Some long-term care insurance policies, state and philanthropic programs cover some of these family support services.
Balancing work and family
When juggling work and family roles becomes overwhelming, caregivers sometimes sacrifice their careers — through unpaid leaves of absence, cutting back in hours, changing jobs or quitting altogether. Yolanda Maker, 42, is one of them. An insurance broker for 18 years, she had lived in New Mexico for more than a decade when in 1987 she gave up a lucrative career and returned to California to help her mother, Emmalene, who had retired to care for her own mother.
Yolanda’s life changed dramatically again two years ago, not long after her grandmother, and then her father, passed away. After some neurological and psychological tests, a doctor dropped the bomb: Emmalene has Alzheimer’s disease.
“There was no explanation or compassion. I was told that my mother had probably had it for 10 years,” says Yolanda, who is an only child and a single parent. “I was devastated. But I went to the bookstore and library and began poring over every book and journal on the disease.”
Yet troubles multiplied. One day Yolanda came home from work to find the utilities shut off: Emmalene hadn’t kept up with the bills. “She had always been so proficient; now everything was in crisis. At the same time I almost went into financial ruin because the company I dealt with was bought out in a hostile takeover. I was an emotional, financial and physical wreck — a walking zombie.”
Yolanda credits her rescue to getting into the loop of Alzheimer’s support immediately. She joined a group where she could talk about her concerns with people who understood and who kept her from feeling isolated and inadequate.
Today Yolanda takes Emmalene five days a week to an adult day health center, where she is kept active and has lunch. Transportation is provided, so Yolanda can pick up her daughter, Ciera, age 7, after school and arrive home at the same time as her mother. She also takes Emmalene to respite camps and enjoys support from church members. She appreciates that Ciera and Emmalene have their own special relationship — yet the stress never totally goes away.
“Alzheimer’s is such an insidious disease,”Yolanda says of the continuing interplay that keeps her exhausted, short-tempered and unable to complete all the tasks before her. “Even if the person is right there, you go through a mourning period. With my mother becoming like another child to care for and not the person she was, there is constant loss and grieving.”
“I hate this disease — I can’t believe I’m going through this. But I’m determined to take care of my mother at home as long as I can. Every day is a challenge, but I am blessed in so many ways.”
“Caregiving is a gift”
Suzanne Alexander is a geriatric social worker and parent-care support group leader who is also a caregiver to her mother-in-law and mother of four children, with three still at home. She observes that beyond the lack of resources and skills, grief — the convoluted process of examining a lifetime of losses and reprioritizing values even before death of a loved one occurs — is an invisible cause of feeling burned out.
“It’s a roller coaster,” Suzanne says. “One day you feel you have a handle on it, and suddenly you haven’t. The whole grief process is always stressful. Yet caregiving is a gift. It’s different from caring for children; it’s a wonderful way to reconnect with your parent differently. When approached in a positive way, there is tremendous possibility for healing wounds from childhood. It’s an opportunity to let go of the wrongs. We all need forgiveness.”
Despite changes in family dynamics, the difficulties in balancing multiple roles, and dreams postponed, many caregivers wouldn’t trade their experiences. They gain untold satisfaction in knowing the care recipient is well cared for and newfound confidence in handling less life-threatening problems. They say they are grateful, happy and rewarded.
“Before I first took my mother home,” recalls Margo Aparicio of the beginning of her odyssey, “her physician pulled me aside and said, ‘If she goes downhill suddenly, remember, it’s not your fault.” He didn’t expect her to live. That was nine years ago”
“I always thought I wanted to be married, maybe have kids, but it never happened. I used to be frustrated by it, but I think God had another plan,” Margo says. “There’s just no other way my life could have been. Despite all the exhaustion and frustration, I feel good. The reward is seeing my mother live as fully as she is capable of living — there’s vibrancy, there’s laughter. We should never underestimate the power of love to heal the body as well as the soul.”
**The current number of family caregivers today in the United States alone is 54 million.
Reprinted with permission, all rights reserved. This article originally appeared in Family Circle 4/20/1999.
Beth Witrogen McLeod
