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Virginia Stem Owens


What Shall We Do With Mother?

One day a year or so ago, my father found my mother lying on the bedroom floor where she had fallen while tucking in a sheet. Her collarbone, they discovered at the emergency room, had snapped when she fell, an entirely predictable consequence of her combined ailments—Parkinson's disease and osteoporosis. Something else appeared to have broken in my mother as well, however. Confused and fearful, she took to wandering from room to room at night, looking for intruders. My father, 80 years old and profoundly deaf, felt helpless to deal with the rapidly deteriorating circumstances of their lives.

Since then, my husband and I have moved back to Texas and now live just down the road from my parents. During the past nine months, my father has had three operations, including a triple by pass. Between the two of them, they have seen a total of 12 different doctors over the past year. I have become an expert at reading medical billings, insurance claims, and Medicare statements. My computer's Web browser is bookmarked for a number of disease and medication sites. The learning curve for me has been Matterhorn-steep, however. At first I didn't even know the difference between Medicare and Medicaid.

My parents are scrupulous people who wanted to cause their children as little trouble as possible. Since I am the executor of their wills, they long ago gave me copies, as well as a key to their safety deposit box. They made sure I knew where to find their insurance policies. I was present when they planned and paid for their funerals. We had all prepared for death. What we hadn't prepared for was decline. I soon found that I needed a crash course in what is al most as inevitable as death—caring for aging parents. Kubler-Ross may have taught my generation the five stages of grief, but no one had told us about the long good-bye.

Nor was I alone in facing this largely ignored crisis ignorant and unarmed. Just last night, for in stance, my friend Ted called me from Pennsylvania. He mentioned that while his stepfather and mother were visiting for the holidays, the stepfather had suffered a stroke. After his release from the hospital, the elderly couple returned to Georgia. Nevertheless, Ted doesn't think his stepfather is long for this world.

"So, what are you going to do, then?" I ask.

"What do you mean?" he says after a long pause.

"I mean, what will your mother do then?"

No pause this time, just a long drawn-out "Wellll … " as Ted considers this, obviously for the first time. "I don't think she'd live in that house by herself. There's five acres to mow, and I'm not sure she'd be safe alone."

"Have you talked with your brother and sister about this?"

"No," he says, sounding a little uneasy. "But I don't think Mother would want to leave Georgia. All her friends are there." Ted's sister lives in Cleveland. His brother lives in Georgia, but, since he is on probation for transporting stolen pecans, he's not likely to be much help.

"Well?" I persist.

"Of course, my sister would be glad to have her. We would, too, for that matter, but," and again he speculates that his mother wouldn't want to leave Georgia.

I admonish him to talk the situation over with his sister and even his black-sheep brother before his stepfather's next stroke catches them all flat-footed. In fact, I now urge all my fiftysomething friends to ponder their parents' future. For, unless you are an orphan or thoroughly estranged from your parents—and those of your spouse—the chances are that you'll be facing such a crisis sooner or later, if you haven't already.

If you doubt this prediction, poll your own friends who are over 50. You will probably be as surprised as I was to discover how many of them are already wrestling with this problem. Of course, their stories will be as diverse as the individuals who tell them. The particulars are not predictable, only the overall pattern.

My friend Jessie, for instance, turned 60 this year. Twice divorced, she directs a small nonprofit foundation at a private college a thousand miles distant from the small town where she grew up. Jessie's father died in 1978, and her mother, at 95, still lives in the family home. Jessie's brother lives with her; he moved in after re turning from combat in Vietnam. A bachelor, he spends a good part of every day drinking at the local VFW.

Jessie either flies or drives across three states to visit her mother several times a year. On her last visit, she found the house filthy and the yard overgrown with weeds. Stacks of bills mixed with advertising flyers spilled off the dining table. She had hardly set down her suitcase before the phone rang.

"Welcome home," her brother said. "I'm at a motel. There's an extra key on the window sill over the kitchen sink. Just put it back there when you leave. I need a break."

A neighbor confided to Jessie that her mother might not be getting enough to eat, so Jessie arranged for a woman to come in every day, do some cleaning, and make Jell-O and soup for her mother. Jessie did not discuss this arrangement with her brother. She fears he might resent her interference, and in the past he has refused to use his mother's money to hire help. So Jessie sends a check every month to the neighbor who pays the housekeeper.

My friend Florence, also divorced, sees after the needs of her father and widowed stepfather, both in their eighties. Her father has, for the past 50 years, lived alone in Houston until last year. Long before his health and memory began to decline, he made both his daughters swear they would never take him into their homes. But after his second minor car accident, Florence moved him into an apartment about ten minutes from her house and hired a college student to drive for him and help him with shopping. On most days, her father still thinks he's living in Houston.

She has taken him to the hospital emergency room twice so far, both times for cuts he got in falls. For the past two weeks she has gone twice a day to change the dressing on an abscessed cyst on his back.

"Why not get a home health-care nurse to do that?" I ask.

"He wouldn't let a stranger in the door," she says. "And for Daddy, even the same nurse would be a stranger every time."

Florence pays the bills and arranges doctor appointments for both her father and her stepfather who has survived a stroke. Florence has durable power-of-attorney for both her charges and keeps the documents handy in the glove compartment of her car, along with the "Directive to Physicians" specifying that they are not to be put on life-support systems.

I have similar papers now for both my parents. Jim, the rector at my church, advised me, soon after I re turned to care for my parents, to arrange not only for durable power- of-attorney, which would allow me to handle their financial affairs, but also power-of-attorney for health care. As the elder of two sons, Jim had learned this lesson the hard way a decade earlier when his father, sinking into dementia, had to be admitted to a nursing home.

"But your mother is still alive. Why didn't she handle it?" I asked.

"She just refused to deal with it. She was simply overwhelmed, so she tried to ignore the situation, even though it was dangerous for both of them," he said, shaking his head. "I had to go before the judge to get my father declared in competent before I could get him into a place where he'd be taken care of adequately. You don't want to have to go through that trauma if you can possibly avoid it."

Colleen and Carrie were school teachers who never married. In their fifties, the two women moved back to the family home to care for their widowed mother after she developed Parkinson's disease. A brother lives in the same town but has school-age children, a condition that exempted him from primary responsibility for his mother's care. Not long after their mother's disease began seriously to erode her functioning, Colleen was diagnosed with cancer. After a couple years of surgery, chemotherapy, and a desperate pursuit of alternative cures, she died.

Carrie continues to work to support herself and her mother. Since her mother cannot be left alone, Carrie first tried a combination of home health-care workers and "sitters," but their schedules proved too unreliable. Also, Medicare funds for home health care have recently been cut back.

After much agonizing over the decision, Carrie moved her mother to a local nursing home. A few weeks later she brought her mother home again. Both her mother and her brother had been unhappy with the arrangement, and the expense was eating up their combined resources. (Contrary to what many middle-aged innocents believe, Medicare does not pay for long-term nursing home care.) Recently Carrie has found a couple who care for six patients in their home. By supplementing her mother's social security checks, she can just afford this arrangement.

Thirteen million Americans presently care for their aging relatives in their homes. That number includes none of the friends I have mentioned above. Nor would I count in that official census of "caregivers." Thus, I figure that the number of people who have made major changes in their lives and spend a good part of the day helping with aging parents is at least twice that large. And I also suspect that their new role came to most of them as a complete surprise.

Very few parents, I suspect, actually sit down with their grown children and talk about what's going to become of them when they get old and infirm. Once they edge past 60, they find themselves using the stark words "old" or even "elderly" less frequently, even though they may still joke about failing memory and "senior moments." At 70, however, they often greet references to Alzheimer's and Depends with prickly rejoinders that old age comes to us all eventually. Their friends and children must tender offers of help with increasing diplomacy.

For their part, very few children are willing to face, much less force, the issue with either their parents or their siblings. And not simply because they fear being thought ghoulish or insensitive. What we fear goes much deeper. Parents—mothers especially—are the oldest things we know about the world. They are an archetypal necessity in the structure of our universe. When they begin to weaken, we feel the foundations tremble.

Faced with our parents' inevitable decline and mortality, we must choose then between causing pain by broaching unpleasant realities or conspiring in the dangerous illusion that everyone maintains good health and mental competence until the moment we draw our last breath.

But making the hard choice gets even more complicated if we must take into account the wishes and fears of our siblings—and perhaps those of our parents' siblings as well. Decades of accrued family history have already tangled the strings of attachment, preference, personalities. Finances, geographical proximity, spouses, and jobs must all be factored into decisions. The combinations of complications seem endless. And for the child who volunteers or is elected to care for an aging parent, always and at bottom lies the daunting prospect of an open-ended personal commitment that could last for decades. Middle-aged children remember all too clearly what it's like to be tied to toddlers and teenagers. Now the care of an ill and elderly parent could rob us of our last chance at personal autonomy and freedom.

On the other hand, we may remember how our grandparents were cared for within the extended family. Perhaps we've seen our own mothers take on this responsibility. Don't we owe them the same consideration? If they could do it, why shouldn't we?

THE CULTURAL CONTEXT

In 1900, when the United States was still largely an agricultural society, two out of three men over 65 were still working and supporting a household. By 1984, that figure had dropped to only one in six. The other five have "retired." Obviously, men do not quit working at a younger age now because their jobs were more physically demanding than milking cows and plowing fields. A variety of economic and social forces brought about this change, most notably the Social Security Act, which specifies 65 as the age at which one can collect full benefits from the system. We may not have invented the concept of retirement in this century, but we have certainly defined it more dogmatically than any previous generation. But whereas retirement used to carry the stigma of "being put out to pasture," we have made it desirable, a goal to work toward. This shift in attitude has also altered the way elderly parents are cared for.

Agricultural economies are, of necessity, geographically stable. Grown children stick around instead of absconding to distant cities. Typically, families in agricultural societies care for their aging members, even when the patriarch is no longer able to do much but sit in the sun. To some extent, economics accounts for this age-friendly arrangement. In Ethiopia, where the Sidamo live by herding sheep and goats and cultivating maize and bananas, the older generation maintains such a tight grip on the means of production that their culture has been labeled "gerontocratic."

Such cultures, organized around the extended family, from Hellenistic Greece to prewar Japan, have generally been willing to support those members no longer able to work. Even the socialistic People's Republic of China, still largely dependent on agriculture, made it a legal requirement for children "to support and assist their parents."

During most of our country's history, family-owned farms operated somewhat like corporations, with grandfather as the CEO and chief stockholder, while his grown sons were upper-level managers and his grandchildren supplied much of the work force. Thus, aging landowners maintained some degree of legal and social control that today's retiree cannot command.

Ethical values derived from the Bible were shared by large segments of the agrarian population. The fifth of the Ten Commandments, for instance, links filial responsibility to the land: "Honor thy father and mother that thy days may be long upon the land which the Lord thy God giveth thee." Paul later pointed out to the Ephesians (as my mother often has to me), that this is the first commandment "with promise."

The Old Testament emphasizes that great age was a sign of special favor in the epoch before Noah, and many of Israel's early heroes achieved impressive feats in their latter days. Abram, for instance, was just setting out on his lifelong trek around Mesopotamia at the age of 75. Not until we reach the Psalms are we told that "three score years and ten"—or in exceptional cases, "four score"—marks the reasonable limit of life's expectancy. Nevertheless, nowhere in the Old Testament, with the possible exception of the self-mocking Ecclesiastes, do we find the infirmity of old age ridiculed for its own sake the way it often is in Greek and Roman literature.

Remarkably little is said about old age in the New Testament, perhaps because so few of the chief players survived that long. The Gospel of Luke shows us Anna and Simeon, both exemplars of messianic hope, surviving into old age. From Jesus' picture of Peter's fate at the conclusion of John's gospel, we infer that the apostle lived to a ripe, if not particularly comfortable, old age. Jesus' own dilemma about what to do with Mother must have dogged him throughout his earthly career. As eldest son, he was responsible for his widowed mother's well-being, a duty that his younger siblings must have rebuked him for neglecting. And indeed, he was at pains to tie up this domestic loose thread, even as he hung dying on the cross.

Though the early church made provision for elderly widows, it was in the early Middle Ages that monasteries began to establish infirmaries for indigent old people. Some fiefdoms and parishes likewise provided pensions for the elderly. But as successive assaults of the bubonic plague carried off disproportionate numbers of children and young adults, the demographics of Europe became distorted (much as our own population will be in the next few decades by aging baby boomers). An overload of elderly citizens and a dearth of younger workers resulted in generational conflicts.

The medieval church tried to de fend the elderly against the resentment of the young by insisting that old age was a valuable period of preparation for death, a time to review and rectify one's soul before presenting it to God. In his Convivio, Dante compares one's proper activity during these last years to that of a boat slipping peacefully into harbor following its long voyage. At the same time, he preserves the psalmist's upper lifespan limit of 80 years, claiming that Jesus, had he not been crucified, would nevertheless have been translated directly to heaven when he turned 81.

During the Renaissance, a "youth culture" every bit as pervasive as our own elevated the kind of strength and beauty that belongs only to the young. Old age was generally regarded as an aesthetic affront. Thomas More, one of the few Renaissance writers sympathetic to the aged and who supported a poorhouse for old men out of his own pocket, tried to find a suitable place for the elderly in his Utopia. In this ideal state where reason reigned, aged citizens were to be treated with respect and given suitable work to do. However, when they would become absolutely too decrepit to benefit the community, More, a Catholic so devout he died for his faith, nevertheless felt they should have the good grace to commit suicide!

Lorenzo Tonti, a Neapolitan banker of the seventeenth century, was more practical. He invented an age lottery that operated something like an office football pool—the precursor to our modern life insurance and annuity policies. The church, however, opposed this speculating on the life and death of human beings as a gross usurpation of divine privilege. But once the Plague no longer decimated the population, the workforce swelled once more and annuities became a popular investment.

At about the same time, care for the aged infirm began to migrate from families to national governments. In 1601, the British Parliament passed the first Poor Law, which assigned to parishes the care of the elderly indigent within their geographical jurisdiction. In 1880, the first social security system was put in place by Germany to compensate infirm workers for loss of in come. Great Britain adopted old-age pensions in 1908. A couple of decades later, in response to the Great Depression's effect on the elderly, the United States set up the Federal Old Age Insurance system. But social-security checks, which now make up the major source of income for old people in the United States, are often inadequate to meet basic needs. Consequently, a disproportionate percentage of the nation's elderly live below the poverty line.

Lest we grow nostalgic for a land-based economy where older parents retained economic power and social control, it should be pointed out that the younger members not only of the Sidamo in Ethiopia but also the Chaggas of northern Tanzania, the Zulus of South Africa, and the Swazi tribes show ambivalent attitudes toward their elders. Generational conflicts over inheritance and use of farmland sometimes lead to fratricide and clan warfare—as indeed was the case with the Old Testament stories of Cain and Abel, Joseph and his brothers, and Isaac and Ishmael, the longest-running family feud in the history of the world. How to care for the infirm elderly is not an equation easily solved by any culture.

Since coming back to Texas to help
with my mother's care, I have at least
learned not to repeat that oft-repeated
cliche that perpetuates our idolatry
of independence:
I don't want to be
a burden to my children.

THE DEATH OF AN ILLUSION

In 1946, the year after the war ended and the exodus of the young to the cities began, Edwin Muir, the Scottish poet and critic, used Shakespeare's tragedy King Lear as the lens through which to focus on how "the old generation and the new are set face to face, each assured of its own right to power." Lear's daughters, Goneril and Regan, Muir points out, consider themselves blameless. In fact, they see their father as "merely an old man who thinks and feels in a way they cannot understand, and [who] is a burden to them."

How much our current culture has adopted this attitude is evident in the way Jane Smiley reversed Shakespeare's King Lear in her novel A Thousand Acres. Here, the daughters are the victims of an autocratic and abusive patriarch. One daughter dies from the effects of her father's pesticides and the other two drift into urban isolation. They are freed from his power only by the loss of the land itself.

If industrialization isolated the elderly, where are they to find a foothold in today's electronic ether? In less than 20 years, from 1975 to 1993, the number of Americans over 65 who live with their adult children declined by half, dropping from 18 percent to less than 10 percent. There are doubtless many reasons for this decrease, from the improved health of older Americans to the number of two-or-more-job households. Nevertheless, a third of the over-65 population live entirely alone. One might expect the older that people get—and thus the more help they need—the more likely they are to live with one of their children. Just the reverse is true. If you make it to 85, the odds of your living alone jump to one in two.

I have noticed the tone of pride and satisfaction with which middle-aged children in America announce that their 80- or 90-year-old mother "still lives in her own house," as if voluntary isolation were the pinnacle of geriatric heroism. In other parts of the world, however, people would find this arrangement both strange and shameful. Most older people on this planet today live close to, if not in the household with, their children. At least until the last couple of decades, three-quarters of Japan's middle-aged children cared for their aging parents in their homes—almost eight times the rate in this country. In China, despite the deconstruction of traditional Confucian ethics by the half-century of communism, almost all old people still live with their sons' families. One re searcher found only ten elderly people living apart from their families in a collective village of 40,000.

A bewildered delegate to a U.S.-China writers' conference once asked the American author Annie Dillard, "The old people in the United States—they like to live alone?"

No doubt some of them do. Or at least some of them prefer living alone to the changes and compromises that living with others entails. Independence, is, after all, the chief and most honored virtue in this country. The ideal, in grained in us early, persists even when we can, quite literally, no longer "stand on our own two feet." When our aging parents' need for help grows too obvious to ignore, we say they are beginning to "fail." Losing one's independence is, for Americans, a shameful thing. And needing help, we know, evokes in our potential benefactors pity, frustration, and fear—in roughly equal parts.

Independence. Autonomy. Isolation. On this unstable trinity the lives of older Americans are precariously balanced. But if you live long enough, independence inevitably becomes an illusion. Slowly the edges of your sovereign island start to erode. You can no longer keep up with the yard work, so you move to a condominium or even a retirement center. You can't see well enough to drive anymore. The checkbook gets tangled in knots, the Medicare maze impossible to negotiate. You call the pharmacy, and a computerized voice gives so many instructions about pushing phone buttons you hang up in despair.

Seeking help with these mundane chores of living means surrendering control as well. If you ask others to take you to the grocery store, you must fit your shopping to their schedule and preference for supermarkets. Rely on Meals on Wheels to deliver your dinner and you have to accept unfamiliar dishes. If your daughter volunteers to clean your house, you can't point out to her, the way you could when she was a teenager, the dust she missed. After a lifetime of doing and having things your own way, you may have to work at feeling—or even faking—gratitude.

Of course, the fear of losing control of one's own life afflicts middle-aged children—my generation—as well. We are as skittish about pledging an unknown number of years to the care of our increasingly needy parents as they are about surrendering their autonomy. No wonder it typically takes a crisis to break through the stolid denial both generations erect to shield themselves from the obvious. A parent has a heart attack or a wreck, falls ill or just down, often in a distant city or several states away. You rush there, shocked not only by the disaster, but the deteriorated living situation. How could things have gotten so bad without your knowing about it?

You call your siblings, if they make reliable allies, and only then do you talk about what you're going to do about Mother or Dad. Despite the fact that this is one of the most predictable prospects you will have to face in your lifetime, no one has prepared for it. It comes as a complete surprise that Something Will Have to Be Done. Not next year, but next week. Or even tomorrow. You mentally inventory the entire family for the most flexible schedule, the most plentiful resources, the most compassionate or cooperative spouse. And no matter how much you love your parents and want to see them well cared for, you feel your own stomach clench as you try to imagine the future. Two sets of people, each with deep though unspoken fears and reservations, must now work out a way of dealing with a difficult situation. They will feel frightened, powerless, cornered, and overwhelmed. Their respective worlds are about to be turned upside down.

At this point, my parents live in their own home, but only because my father can still fix their breakfast, help my mother to the bathroom, and call for help if she falls. And also because I am nearby for emergencies—and to schedule and take them to their doctors' appointments, supervise their many medications, monitor their nutrition, and find suitable and reliable household help for them. During my daily visits I place their catalogue orders, pay their bills, deal with Medicare and their private insurance companies.

At night I lie in bed wondering how much longer my father's own precarious health—and strength—will hold out. What will I do if it doesn't? My parents' resources are not sufficient to hire round-the-clock nursing. I picture past scenes of my aunts and my own mother caring for their parents in their last days. And I remember that no one in our family has ever died—or lived—in a nursing home.

I still have many questions and quandaries about the future—my parents' and my own. But since coming back to Texas to help with my mother's care, I have at least learned not to re peat that oft-repeated cliche that undergirds and perpetuates our idolatry of independence: I don't want to be a burden to my children.

We are all, throughout our lives, a burden to others. From the moment of conception, we are nourished and nurtured by others. As adults we learn to pay for or negotiate our mutual needs, but the fact remains that it takes an invisible army of other people to grow our food, clean our clothes, maintain our roads, fuel our furnaces. When we marry, we accept another's pledge to stick with us in sickness and health, prosperity and poverty. The load we lay on others only becomes more visible, less deniable, as we age. Even though nothing is more predictable, Americans simply aren't much good at—and consistently fail to prepare themselves for—either bearing or being burdens. (As for wishing for a quick and trouble-free death that will cause our families no fuss or bother, only one in four of us can expect such an easy exit.)

Our still relatively new culture, which makes both living anywhere and living longer possible, will no doubt devote a good deal of public resources and private energy in the near future to figuring out how best to care for its older members. In the meantime, I will be moving into that category my self. Yet nothing in our culture to date encourages us to accept the reality of our future liability. Instead, we are enticed to believe in the Centrum Silver myth—that our latter days will be spent on cruise ships or jogging into the sunset, not alone but with our spouses. The truth is, though, should I live another 20 years, I will be a burden—to my spouse or my children or the state, if not all three. What I most want to learn during those decades, therefore, is not how to live longer, not necessarily even how to live a healthier or more productive life, but how best to be a burden. One that might also be a blessing.

Virginia Stem Owens is a novelist, poet, and essayist. She will lead a nonfiction workshop at the 1999 Glen Workshop, "Stones, Bones, & Clouds: The Shape of What's Given," August 9-16 at Ghost Ranch in Abiquiu, New Mexico. The registration deadline is July 1, but there may be late cancellations; call 302-652-8279 or visit www.imagejournal.org for information.

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