ELDER CARE: Caring for California’s Aging Population : Taking Care of Mom and Dad: It’s a Problem That’s Growing
Five years ago, a middle-aged Midwestern businessman made an unusual purchase in Los Angeles: a surrogate sister.
For a fee, the businessman contracted with a gerontologist, Judith S. Tobenkin, to find cost-effective medical and social services for his elderly mother and father.
Tobenkin promised to do all the things for the parents that the man couldn’t manage by himself and certainly couldn’t do long-distance. She visits clients’ homes to see if they are safe and appropriately equipped for the changing needs of the aged. She finds household workers and, where necessary, coordinates medical, legal and financial services. She listens to complaints and sees to it that doctors’ appointments are kept. She even buys food and clothes and acts as chauffeur on occasions when no one else is available.
“When Judy came into my life, I had enormous problems,” said the businessman, who has his own children to support at home but continues to make frequent trips to visit his parents.
“Those problems haven’t gone away, but at least they are manageable,” he said. “She has become like a surrogate sister for me.”
Like many middle-aged Americans today, this grown son from the Heartland is faced with the worrisome, sad and sometimes embarrassing experience of seeing his own parents grow old and feeble.
“I’ll tell you my story,” he promised. “But I don’t want you to reveal who we are because our problems are so personal.”
Personal perhaps, but not unusual.
In fact, there is a name for these middle-aged sons and daughters who are grappling with pressing financial and professional needs at the same time that they are trying to care for the youngest and the eldest members of their families.
They are known as the Sandwich Generation.
Despite the popular image of Americans dumping their aged parents into nursing homes, hundreds of thousands of adult children all over the United States are trying to come to terms with how to care for parents who need help but who want to continue living on their own. Many families must provide assistance and support long-distance. And most have to sandwich it in between jobs and their own families.
And, although the problems of age exist in many American families today, the pressures are especially acute for members of the Baby Boom generation, many of whom delayed having babies until their 30s and 40s and are raising children as they are watching their parents grow old and as they themselves enter middle age.
“It’s a problem that’s getting worse, not better, for several very important reasons,” said Roy S. Azarnoff, who set up the Los Angeles Area Agency on Aging in 1973 and now directs Eldercare Management Group, a private gerontology consulting firm in Santa Monica.
“The elderly are getting older. In fact, the fastest-growing segment of the population is the group over 85. The next fastest are those over 75. Combine that with the changing role of women, who were traditionally the caretakers in our society. Add in labor shortages, which are already upon us and will force even more women into the work force in the years to come . . . and you see that American families are really being pressed.”
“What’s even worse is that most American families don’t even admit they have problems in this area,” said Andrew E. Scharlach, a USC professor of social work and a senior researcher at the university’s Andrus Gerontology Center.
“Caring for an elderly relative is something most people don’t like to talk about in polite company,” Scharlach said.
“While it is becoming increasingly acceptable in many quarters to stay home from work or miss a social engagement because of a sick child, it is not acceptable (to do so) because of a problem with a parent. . . .
“Practically everyone faces these problems at some time in their lives, and practically no one realizes it is a universal problem,” Scharlach said.
Some Americans are lucky. Their parents move into old age gracefully.
The most difficult issue facing one 27-year-old Los Angeles woman is persuading her newly retired parents to treat themselves to better vacations and to pay more visits to their grandchildren. The toughest problem confronting a 42-year old Santa Monica man is learning to accept that his widowed mother is having sex with a man he barely knows.
Many families are not so lucky. Although the specifics may change, the stories are often the same. Sooner or later, the issues of aging become much more intense, often involving questions of freedom and responsibility, physical safety and financial feasibility. All too often the problems present themselves in the form of emergency telephone calls in the middle of the night.
For a 43-year old man from Beverly Hills, the call came in the early hours of the morning from a hospital halfway across the country. His 82-year-old mother had broken her hip. The good news was that she could go home in a matter of days. The bad news was that she couldn’t go alone.
For a 29-year-old woman in Alhambra, the call came in the middle of the workday. It was the supervisor in a Long Beach retirement home informing her that, for the third time in a month, her 76-year-old father had left a pot on the stove. The woman had 30 days, the supervisor said, to find her father another place to live.
For those who have chronic health problems, for those who are forgetful and those who are frail, living alone at home often means depending on the services of others.
Whether it involves getting dressed or managing their money or simply buying groceries, nearly a quarter of the population over the age of 65, and half the population over 85, cannot get through the week--or the day--without some form of assistance, according to a 1987-88 study prepared by the U.S. Senate Select Committee on Aging, in conjunction with the American Assn. of Retired Persons, the Federal Council on the Aging and the U.S. Administration on Aging.
Most elderly people would prefer not to be institutionalized. They have said so in study after study. Research has also shown that most Americans are equally reluctant to live with their adult children--just about as reluctant as their children are to move back home with their parents.
Whatever the reasons, the result is clear: According to the Senate committee on aging, only 5% of America’s frail elderly live in nursing homes and another 5% live with their families. The rest live in their own homes, with family members providing virtually all their care.
To help the elderly live independent lives, an array of programs supported by government grants, private donations and fees from those who can afford to pay has grown up over the last 20 years.
Neighborhood senior citizens’ centers offer housekeeping, transportation, meal deliveries, tax preparation, psychological counseling. Churches and synagogues operate retirement homes and organize volunteers to pay friendly visits and to offer telephone reassurance to shut-ins.
Hospitals and geriatric clinics conduct physical examinations and mental and nutritional evaluations designed especially for people over 65. International organizations provide translation services and referrals. Private foundations offer support groups. Entrepreneurs and social service agencies offer “senior citizens’-sitting” and adult day-care.
Anyone who has ever been faced with looking for such services, however, knows they are not easy to find. By all accounts, eldercare services, as they have come to be known, are not well organized in the United States.
“There are too many; there are too few. Some are in the wrong place; some are at the wrong time. The services are completely uncoordinated,” said Dr. Robert H. Brook, chief of the division of geriatrics at UCLA.
“That may be the understatement of the year,” said Mary Lou Parks, a former nurse who is director of Senior Care Consultants Inc., a firm that provides assistance for frail seniors and their families in Ventura County and parts of Los Angeles County.
“There is no central number to call, no comprehensive and reliable guides to consult,” Parks said. “Simply knowing what to ask for in the way of assistance is an overwhelming task for many families.”
Some families are lucky enough to find the kind of assistance they need, when they need it, as the Midwestern businessman did in finding Judy Tobenkin. But for many others, there is often no way of knowing whether they are getting too much help or too little, or whether they have found the best--or worst--their cities have to offer.
“This is one area in which you can’t let your fingers do the walking,” Azarnoff said.
One of the questions most frequently asked of hospitals and senior citizens’ centers is where families can find a nursing home for an elderly relative who has fallen or who is having trouble maneuvering around his or her own home.
“In fact, all the family may need is something as simple as getting rid of throw rugs, which are one of the major causes of accidents in the homes of the elderly,” said Azarnoff, former director of Los Angeles’ Area Agency on Aging.
“Or what the family may need to do is install some strategically placed grab bars that allow the elderly to sit and stand on their own. The elderly person may not need full-time help at all, and they certainly do not necessarily need to be institutionalized. Unfortunately, that is the conclusion that most people jump to first.”
Other questions that are asked with tremendous frequency have to do with the purchase of adult diapers--where they can be found, how much they cost.
Such inquiries are not surprising given that urinary incontinence is a major problem of aging, effecting 4.6 million Americans--9% of elderly people living at home and 50% of nursing home residents. Yet, experts agree, buying diapers may not always be the best solution for this embarrassing and troublesome disorder.
In some cases, surgery or drugs can help. And, more promising, a recent three-year study by researchers at UC Berkeley shows that there are new and simple bio-feedback or behavioral techniques that can teach bladder control to even very old and frail people.
Some families may give up too fast, and many other families are likely to do much more than they should, said Monika White, associate director of Senior Care Network, Huntington Memorial Hospital.
“It’s not that families don’t give enough care, as is often assumed,” she said. “It is that families sometimes give inappropriate care.”
As an example, White tells the story of one young man who was so attentive to his mother that he nearly killed her.
The mother was unable to get to the bathroom by herself, and the son wanted very much to avoid putting her in a nursing home. So he left work four times every day and went to her home to assist her. The only problem was that the mother then began to worry about her son’s job. So she too came up with a scheme. She began eating less food and drinking less water so that her son would have to leave work less often. She ended up in the hospital, dehydrated and on the verge of starvation.
“The guy was a wonderful son,” White said. “She was a wonderful mother. They both had the right idea but they--both of them--were doing it entirely wrong.”
A few years ago, Los Angeles County spent hundreds of thousands of dollars trying to put together a directory of services for senior citizens. Before it was finished, experts lamented, the list was out of date. New services had started; others had closed.
Much of the reason for what seems to be mass confusion in the field of aging dates to the mid-1960s and early 1970s.
Congress enacted Medicaid, which provides government support to people of all ages who cannot afford medical care, and Medicare, the government’s health insurance plan for people 65 and over, in 1965. In that year and again in 1972, lawmakers authorized millions of dollars in federal grants to states and nonprofit agencies to develop literally thousands of programs for the elderly at the state and local levels.
One of the advantages to the system, experts say, was that it was not orchestrated by Washington. Communities were to set up their own senior citizens’ programs and centers that would serve individual needs of neighborhoods.
Hence, the St. Barnabas Multipurpose Senior Center near Los Angeles’s McArthur Park came to focus on the most basic of services, including showers and meals, for the city’s homeless elderly. The Freda Mohr Multipurpose Senior Services Program in West Los Angeles’ Fairfax District offers a wide range of sophisticated psychiatric and medical services, lectures, travel programs and cultural activities, catering to the needs of its more well-to-do Jewish patrons.
“There are great advantages to our system of eldercare in this country,” said Azarnoff. “But there are also disadvantages, too. It’s basically a non-system . . . (in which) the experts don’t even speak the same language.”
Having a conversation with an expert on aging can be an overwhelming experience for the uninitiated. Along with care managers and case managers, there are home-health aides, homemaker aides, nursing aides. There are board-and-care facilities, retirement communities, retirement hotels, life-long care centers. There are acute care, long-term care, respite care--all terms used with frightening frequency in the world of geriatrics and gerontology.
Given the complexities of the system, the ideal way to begin, experts agree, is by educating oneself about aging and care taking as much as possible--in advance of a broken hip or an unexpected death or some other crisis that can change a family’s life overnight.
There are books, videos and newsletters available. Some organizations offer education programs. Hospitals, schools, public agencies and a few forward-looking employers are setting up seminars, workshops and referral services on how to plan for old age--as well as on how to cope with it.
Once the crisis has hit, the first step for many families is to consult friends who have been through similar experiences. The problem is that experiences are rarely similar enough to be helpful. Moreover, people are rarely honest with themselves, let alone with their friends, about what they actually need, said Lee M. Gilman, a psychiatric social worker who has been specializing in the problems of the aged for 20 years.
Most experts advise starting with the discharge office of a hospital or, better yet, the local area agency on aging or the closest senior citizens’ center.
The problem is finding someone who has both the time and the knowledge to be genuinely helpful.
For the Midwestern businessman whose parents live in Los Angeles, finding the right kind of help halfway across the country was a matter of serendipity. A friend of a friend in Los Angeles told him about a care manager or, as some people call her, a case manager, who could determine what services his parents need, handle the logistics of seeing that those services are provided and cover for him in a crisis.
“True, there are a sea of services out there,” said White of Huntington Memorial Hospital. “But you need a guide, a captain to navigate your way through them. . . . That’s what a care manager can do.”
There are probably 200 care managers in the Los Angeles area, although they are not always easy to find. Some list their numbers and locations in the Yellow Pages, others advertise occasionally in local papers or on radio stations and still others provide information about their services at senior citizens’ centers, hospitals and doctors’ offices. Most, however, get their referrals by word of mouth.
Care management is probably the best solution, but in many ways it is “no panacea,” said White, who has been working in the field 12 years.
Although many care managers have licenses in such related fields as nursing or social work, the profession itself is not licensed or regulated, and there are no reliable rankings of who is good and who is not, said Tobenkin, who has been caring for the Midwestern businessman’s parents for four years and working in the field for 5 1/2 years.
Hiring a private care manager can also be costly. In Los Angeles, charges run from $10 to $85 an hour, excluding housekeeping and medical bills; those costs do not include rent, food and the other normal expenses of living at home.
There are inexpensive or free services available through senior citizens’ centers, religious organizations and some hospitals. But families who rely on low-cost or free services are sometimes subjected to long waits. And, should a crisis happen at night or over a weekend, most families are stuck without any help at the very time they most need it.
When all is said and done, perhaps the single most difficult aspect of watching a loved one grow old is knowing that one day the people on whom we depended for so long, our parents, will one day become dependent on us, their children.
Much has been written about the psychological trauma of aging. The most recent research suggests that for most people, growing older simply means becoming more confident, more accepting of what life has to offer.
“Probably no one ever gladly accepts not being able to run a mile as fast as was once possible,” said Bernice Bratter, director of Senior Health and Peer Counseling Center in Santa Monica, regarded as one of the country’s premier mental health clinics for the aged.
“But when families and professional workers understand the needs of the older person and the person understands himself, the changes are far easier to accept as they come. . . .
“The first thing to remember is that older people have the same needs for love, sex, companionship and intimate relationships as does anyone else. We as a society too often forget that.”
“And,” said Dr. Barbara Bernstein, a geriatrician at UCLA’s Sylvia Olshan Health Clinic at the Freda Mohr Senior Citizens’ Center, “we as families too often forget that our aging parents may not have the same desires and life style preferences that we may have wanted for them. . . . In some cases, the choices that have to be made are not ones the elderly would have wanted for themselves.”
The problem is that, in trying to accept these changes, the families of the aged often have to deal with issues of their own: anxiety that they are doing the right thing, guilt that they are not doing enough, despair that there is nothing they can do.
“People are often just plain angry, angry that age has put their parents--and themselves--in such difficult situations,” Bratter said. “These (feelings) are normal. People need to understand that. It is only when they are not acknowledged and understood as such that the feelings get out of control and lead to neglect and abuse.”
“In my case, it was as if my mother simply walked out of her life, and yet the details of her life still had to be attended to,” said Wayne Friedlander, a Los Angeles gerontologist whose mother has had a series of strokes that have left her forgetful and unable to function without constant supervision in a nursing home.
“I’m an expert in this field, but I have to keep telling myself it’s not her fault,” Friedlander said. “I have had to accept not only that she can’t do it, but that I can’t do it alone, either. I’ve had to work very, very hard to see that she is getting the care she needs. And I think I have succeeded. But I have succeeded not because I have been in this business for so many years but because of who I am. I am a member of the ‘60s generation, the ones who wouldn’t say no, the ones who wouldn’t accept the system as it exists. . . .
“You may have to make more than one phone call. You may have to make lots of phone calls. You have to put demands on the system. And you will probably do it, not just for your parents but because of what’s always in the back of your mind: How you want it to be when you get old.”
‘I didn’t even know where to begin. I called up friends. I called my doctor. I looked in the Yellow Pages. Most people had no idea what to tell me. A few people had some ideas, but I didn’t really know where to go.’--A television executive whose elderly mother recently moved to Beverly Hills from New York.
‘When families call asking for help, they often don’t know what they need, and they rarely know what’s available. That’s our job: to educate them about what’s out there, what their options are.’ --Dottie Cebula, assistant director for public programs at Huntington Memorial Hospital’s Senior Care Network.
‘How and where one breaks into the system often determines how successful a family will be in coping with the problems of aging. It’s unfortunate because in too many cases, families aren’t persistent enough.’--Wayne Friedlander, Los Angeles gerontology consultant.
Elder Care Principal writer: Anne C. Roark Editor: Robert Magnuson Photographer: Ken Lubas Copy Editor: Kathy Gosnell News Editor: Martha Steffens Contributing Writer: Eugene Ahn Researcher: Tracy Thomas For reprints of this section, call 1-800-433-1984.