Few Plan for the Hard Realities of Infirm Parents’ Care

Growing old is as inevitable as the sun rising and setting each day.

Yet few people talk about it with their parents. Fewer still make plans. Most would rather avoid the topic--until old age settles into the life of a parent, refusing to be ignored.

“Who enjoys talking about . . . what you want done in your last [years]?” said Teresa Cuneo, a 35-year-old New Jersey woman. “You don’t face it until you’re forced to.”

A national survey on aging conducted by the Los Angeles Times Poll found that most American families behave as if old age were always somewhere off in the future.

Yet as more people live longer, understanding how to handle the touchy questions surrounding aging becomes increasingly important. Coping with an older parent can alter the financial and emotional health of the entire family. The experience can be devastating, particularly in the absence of planning and given common misconceptions about the extent of government assistance.

The Times poll, taken last fall, found that 81% of respondents not currently providing such care had made no plans for dealing with their parents’ potential infirmity. Three out of five said they had not even discussed with their parents what to do if they become unable to care for themselves.

But parents who are now healthy and vibrant may need significant help in coming years. And studies show that family members will often be the ones to step in and assist. Of the estimated 22.8 million informal caregivers in the nation, half are adult children caring for their parents.

Gerontology experts also say the best time to plan is when parents are healthy--and thus able to make better decisions.

Over the past 12 years, 56-year-old Judy Stover of Arcadia has cared for her mother in ways she never envisioned. The help started when her mother was 75, suffering from arthritis and failing eyesight. Her mind, though, was still sharp.

“Most of the problem came from her not being able to see well enough to do for herself,” Stover said. “I didn’t trust her cooking meals, and there was no way she could drive. She couldn’t do the things she wanted to do.”

There were local services for older people, but her mother was unwilling to use them. Old age had brought new needs, but it did not alter her preferred lifestyle.

“She could have taken a bus or dial-a-ride, but that wasn’t her thing,” Stover said. “She hadn’t done that in her life, and in her late 70s she wasn’t going to start. She wound up being inside and cooped up.”

An Invisible Work Force

Even if Stover had pooled her money with her brother and sister, they could not have afforded years of care at an assisted living or retirement center.

Besides, Stover said, she was raised in a Dutch Mennonite family in Pennsylvania. Families in that farming community took care of one another. She had watched her mother care for her grandmother in old age, and then for her father.

“That’s the way I grew up,” Stover said. “I think that had a lot to do with where I was coming from and what I was going to do.”

So at the age of 44, Stover moved into her mother’s El Monte home. At night she worked as a hospital nurse. During the day she cared for her mom, cooking, cleaning, shopping and driving.

This is often how it happens. There is an invisible work force in America made up of people who step in when needed, offering vital care to parents.

Nearly one-fourth of Americans 65 and over are disabled or in need of long-term care. Nearly half of the adult children in the Times poll said they offer regular assistance to their parents, including 19% who perform daily chores.

Despite such numbers, the issue of aging is seldom discussed.

People approach the topic gingerly, much as if they were explaining sex to a pubescent child. The same questions and worries arise: When is the right time to talk about it? Who should initiate the discussion?

“I don’t want them to think it’s something I’m looking forward to, or that I know something they don’t,” said 42-year-old Dianna Essepian of Visalia, Calif., a poll respondent. “I’m concerned about it being as upsetting to me as it might be to them.”

The best time to talk about aging and disabilities is when it seems most unnecessary--while parents are healthy, mentally and physically, said Donna Benton, a gerontologist at USC’s Andrus Gerontology Center.

Because it is such a difficult topic, Benton co-teaches a class, “Your Aging Parents and You,” that helps adult children prepare. The homework? Talk to your parents.

“Within families, the parent is seen as the leader, the source of strength, the source of advice,” she said. “These discussions bring up, for the adult children, weakness of the parent. We just don’t want to look at our parent as anything less than the people we turn to for advice.”

Parents may also be reluctant to accept what lies ahead. According to the Times poll, about six in 10 Americans over 60 say it isn’t likely that their children will have to support or care for them.

Parents typically will not initiate the conversation. If they do, often it is because some needs have already arisen, Benton said. Even then they may only hint or complain. “They may never ask for help,” she said.

The Los Angeles Times Poll contacted 1,589 adults nationwide, including 807 respondents 60 years of age and over, by telephone last Oct. 20-23. The margin of error for the entire sample is plus or minus 3 percentage points.

The poll shows that some adult children are discussing the topic with their siblings. One in three respondents under 60 who have siblings said they have discussed their parents’ future care with their brothers and sisters.

Of all respondents with siblings who had discussed the issue, 80% said the talks yielded key decisions: who would take their parents in if they were no longer able to care for themselves; which of the siblings would accept primary responsibility; how the task would be shared.

Without such a discussion, however, family members often rely on sometimes inaccurate assumptions.

Jim Wilson, a 27-year-old poll respondent in Huntsville, Ala., said he would not discuss his parents’ care with them unless they brought it up. But he expects his two sisters to raise the subject.

“Women are probably more likely to talk about something like that,” he said. “I’m sure they would say something before I would.”

Women are, in fact, more likely to look after aging parents, making up 72.5% of all caregivers, according to a national survey conducted by the National Alliance of Caregivers and the American Assn. of Retired Persons.

Aside from gender, the decision about who ends up providing the help is influenced by such factors as proximity, finances and, sometimes, birth order.

The family member who accepts the responsibility often adopts a one-day-at-a-time approach, not recognizing that tomorrow may be far more demanding than today. What starts out as cooking and cleaning can later include bathing, feeding, lifting.

Stephanie Tanous, 50, is a caterer and food designer who has cared for her mother, Margie, for 10 years. When she was about 69, Margie started getting lost while driving. Tanous took her to a physician, and Margie was eventually diagnosed with Alzheimer’s disease.

Tanous moved to her mother’s Glendale home. One of the first and toughest things she did was take away her mother’s car keys. “That car was her life,” Tanous said.

Nursing Home Issue the Most Difficult

Margie was still lucid then. But in the years since 1990, much has changed in the lives of both women. With time, Margie lost the ability to feed and bathe herself and to speak. As Margie’s conditioned worsened, Tanous’ world shrank.

“A year ago we were going out to eat all the time. Now we cannot . . . she becomes very anxious,” Tanous said. “Three years ago we were able to go to a movie; now we cannot. She’s afraid of the dark, and it’s loud.”

The only way Tanous is able to leave her mother alone is to hire a caregiver. Tanous currently pays $1,400 to $1,700 a month for the part-time help. There is also an emotional cost: Her mother doesn’t remember who she is.

“When I come into the house, there’s a sigh of relief and she says, ‘Good, good, good,’ ” Tanous said. “She may not know I’m her daughter per se, but she knows I’m the person who takes care of her. She becomes very happy when she sees me.”

Tanous is firm in her desire to keep her mother at home.

Placing a parent in a nursing home is often the most difficult decision adult children ever have to make regarding their care.

When those polled were asked whether they could place their parents in a nursing home if the parent did not want to go, the answers split along generational lines: 51% of respondents under the age of 60 said they could not. But among those 60 and older, 57% said they could, if it were the only option, reflecting a growing awareness of their own physical limitations.

Like many who were polled, 68-year-old Leslie Fiegel views the question with a sharp realization of his diminishing health.

When he can no longer walk up the stairs of his three-story house in Laurel, Md., or shovel snow or take care of his daily needs, he said, he will move to a nursing home.

“I don’t want to saddle [my family] with it,” said Fiegel, a grandfather, who uses an oxygen tank. “I’ve been independent for so long, and I can’t even imagine putting someone in a position to have to take care of me.”

Concern about being a burden is common. But so is the shock when people realize how little affordable help exists for older people.

“We get calls daily,” said Aileen Harper of the Center for Health Care Rights in Los Angeles. “It’s really unfortunate. People really don’t learn about the reality until something triggers [it] in their own lives. They need long-term care for a loved one, a parent or grandparents, and that’s when people really learn firsthand.”

Many families wrongly assume that such help is available through federal health care programs. Long-term care refers to daily assistance people need to survive.

“Medicare’s coverage of long-term care is very restrictive,” said Harper. “It basically pays for what’s called skilled nursing or therapy service, either in long-term care facilities such as a nursing home or at home. Because the coverage is medical care, skilled nursing or therapy, it’s not what people generally need.”

Most commonly, assistance is needed with bathing, eating, dressing and using the toilet.

Medicare typically will not cover those costs, Harper said. The federal Medicaid program for the poor, known as Medi-Cal in California, pays for nursing home care for those whose assets are below a specified level, Harper said, so families end up “spending down” their savings before they are able to qualify.

According to the Times poll, only about a quarter of retirees have or are planning to purchase long-term care insurance to pay for future care in their home or in a nursing home. In addition, nearly three out of four retirees who have Medicare and no other type of insurance don’t have and are not planning to purchase long-term care insurance.

“If you reach 65, there’s between a 40% and 50% chance that you’re going to need long-term care,” said Robyn Stone, executive director of the Institute for the Future of Aging Services in Washington, D.C. “Even though people know that, there is a real denial that they’re going to have to deal with it.”

Experts do not agree on the value of long-term care insurance, particularly if purchased when a person is already old and the monthly premium is thus much higher. And policymakers nationwide do not agree, generally, on how best to address the long-term needs of older Americans.

“It’s probably not a really good idea for retirees to purchase long-term care insurance,” Stone said. “The real time to do it is when you’re younger.”

But Stone, who served as acting assistant secretary of the Administration on Aging under President Clinton, said most people are not even aware of the issue and therefore do not make preparations.

“We all argue that as the baby boomers age things are going to change,” Stone said. “I’ve been in this business 25 years. I have not seen the knowledge of long-term care grow in the public, even though our population is already aging.”

Families who don’t make plans end up having to learn in a crisis, when they are under stress, emotionally and financially. They may also find that reality conflicts with long-standing beliefs.

Attitudes toward treatment of older relatives vary in different cultures, the poll found. Of Asian Americans surveyed, 91% said they could not put their parents in a nursing home. Seventy-one percent of African Americans said they could not. Among Latinos, 58% answered no, and among whites, 41% opposed the idea.

Many who said they could not put their parents in a home spoke of wanting to share their parents’ last years with them and to make sure they are spent well.

“I don’t feel like I owe them,” said Essepian of Visalia, talking about her parents. “I just feel like if I can, and if I’m needed, I want to pay them back.”

‘I . . . Tried to Do Everything by Myself’

For her husband’s parents, Armenians who emigrated from Turkey, a nursing home is “just not an option with them, and I agree,” she said.

In 1998, an estimated 5.8% of people 65 and older lived in a skilled nursing facility, and by 2050, experts predict, that proportion will rise to 8.4%.

Many families may find themselves facing Stover’s dilemma.

In the past few years, her mother’s condition worsened. She is now legally blind and hard of hearing and has suffered several small strokes. She has dementia. “She hasn’t called me by my name for 4 1/2 years,” Stover said. “I don’t have a name, and that’s very hard to live with.”

Stover went from working nights as a nurse, to working at home in telemarketing, to not working, living off savings and caring for her mother 24 hours a day.

Her experience might have been different, Stover said, if she had known years ago about long-term care insurance. Or if she had found out sooner about the Los Angeles Caregiver Resource Center at USC, which paid for a part-time caregiver--allowing Stover some time to herself.

“Up until a year ago, I had tried to do everything by myself, with no help,” she said.

The closest Stover and her mother came to having a discussion took place years before the elder woman became ill. The two had just finished visiting Stover’s father, who had Parkinson’s disease and was in a nursing home.

“My mother said, ‘Don’t ever put me in a place like this,’ ” Stover recalled.

But last December her mother became ill again. Stover felt that a nursing home was the only choice.

“It doesn’t even take me five minutes to get there,” she said. Stover is there every day, visiting her mother, feeding her.

These days, the responsibility of caring for her mom has been replaced with guilt. Now she has time to ponder her own fate--how she will, for example, reenter a job market that is not always kind to people her age.

Stover, who is single and childless, is also wondering who will care for her when she grows old. As baby boomers age, many will ask the same question.

“I have no answers for it,” she said. “And that worries me.”

Elizabeth Armet, assistant director of the Los Angeles Times Poll, contributed to this story.

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Little Planning for Old Age

A national Times poll found that most adult Americans have not planned for their parents old age, including decisions about nursing home care. It is not a popular topic for either generation. Most people over 60 say they dont worry much about being able to live on their own.

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How the Poll Was Conducted

The Times Poll contacted 1,589 adults nationwide, including 807 respondents 60 years of age and over, by telephone Oct. 20-23, 1999. Telephone numbers were chosen from a list of all exchanges in the nation. Random-digit dialing techniques were used so that listed and non-listed numbers could be contacted. The entire sample was weighted slightly to conform with census figures for sex, race, age, education and region. The margin of sampling error for the entire sample is plus or minus 3 percentage points; for those 60 and older, it is plus or minus 4 points. For certain subgroups the error margin may be somewhat higher. Poll results can also be affected by factors such as question wording and the order in which questions are presented.

Source: Times Poll