Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Extending the Family in an Era of No Growth:
A Rumination on Family Caregiving

James A. Thorson

[Citation: Thorson JA. Extending the family in an era of no growth: A rumination on family caregiving. Innovations in End-of-Life Care, 2001;3(2), www.edc.org/lastacts]

I

I took a group of nurses and physicians to China some years ago. Our purpose was to see how our counterparts there cared for the elderly, given the vaunted Confucian reverence for the aged. We visited colleagues in hospitals in cities and on communes, medical colleges, representatives of medical societies and so on, and we found it all very interesting. But, other than observing what we would call step-down care within acute-care hospitals, we didn't accumulate much in the way of things we could take home and use.

Several times, we asked our guides from the government tourist organization where their long-term care institutions were. We wanted to see a Chinese nursing home. Met with blank looks, we persisted: Where, we asked, were the old people cared for who could not take care of themselves, the demented, for example, or those with degenerative illnesses who were nearing the end of life? The guides responded that people in those situations were cared for by their families. But what, we asked, became of people who had no family or were being cared for by family members when their son or daughter unaccountably predeceased the elder? Light bulbs went on: "Oh, you wish to see an institution for people whose children were martyred." Older people in China have lived through the Japanese invasion in 1936; World War II from 1940 to 1945; the Revolution that ended in 1949, and the Cultural Revolution of the late 1960s and early ‘70s. Many have lost adult children in one of these upheavals.

We were taken to the First Peoples' Social Welfare Institution for the Aged, a three story concrete building that housed 150 older people (an addition that would handle 120 more beds was being built at the time). We were told that it was one of four such institutions in Shanghai, a city of twelve million people. I reflected that the city where I live has about half a million people and has 37 nursing homes.

Our first experience upon entering the place was to be met by patients and staff who were applauding vigorously. Being visited by a busload of foreigners was a big deal, and no one who could get out of bed wanted to miss any of the action. After greetings, the residents hurried back to their own rooms in anticipation of individual visits. Like most delegations visiting Chinese institutions, factories, schools, or communes, our first task was to have the orientation. In a large conference room we were served green tea and listened to speeches from the staff. We were told that almost all of the residents were without any family, and that they had been bereaved of their child or children too late in life to then form a kai relationship with a younger person.

A kai bond is a form of sworn kinship not unlike a blood brotherhood or sisterhood. In the case of older people without children, it was often a kind of foster parent relationship:

The common theme of kai relationships was that of need on the part of one and nurturance on the part of the other. The kai relationship of greatest significance to the elderly was that in which an older person kaied a young adult, preferably one without parents of his own. The two would exchange gifts publicly with the senior providing services to the junior in the early years of the partnerships and the latter providing services to the senior in the later years. Supernatural sanctions and the force of public opinion encouraged the participants to fulfill their obligations.¹

In other words, the childless adult could acquire a young person to sponsor, guide, and nurture, expecting that an obligation would be created that would be reciprocated later.

One could see how it would be difficult to form such a bond if an individual, say, in her 80s were to lose an only child. It would probably be too late for her to then seek a kai relationship. We were told that such bonds were breaking down with the urban migration that had been taking place in China. Community pressures present in village life were absent in the anonymity of the city.

After the orientation conference we were loosed upon the residents, and we spent quite some time going around in small groups to visit. The first floor was made up of women residents who were ambulatory, the second had men who were ambulatory, and the third floor was what Westerners would recognize as a nursing home for both men and women. So, the institution was really a kind of continuing care retirement community with care at multiple levels.

One of the things we found most remarkable was the enthusiasm of the greeting we received, whether the people we stopped in on were bedfast or not. Later, in an exit interview, this was remarked upon. The administrator said, "Remember, these are people who have no visitors." Our few hours there was a very special occasion, for us as well as the residents. One of the ladies there had received her B.A. in 1929 from Macalester College in St. Paul, Minnesota, having been sent there by missionaries.

On the bus ride back to the hotel, some of us noticed a billboard along the highway showing a bright young couple holding a bouncing baby girl. We asked our guide to interpret the legend that was printed on the side of the happy picture: "It is best to have just one child, even if it's only a girl." The message was a reminder of government-sponsored (or government imposed) birth control. And, it was understandable that people would want to continue trying to have a male child in a Chinese culture where it is the son's filial obligation to care for his parents. If a couple has just one child and she is a girl, then later on she'll marry some young man and go off and care for his parents. With social institutions and community values in China in flux, many are wondering if they can depend on forming a kai relationship that can be depended upon. Thus the willingness of many Chinese to risk sanctions by having more than one child. They'll need a family caregiver in later life.

II

I was the adult child in charge of orchestrating my mother's dying. That I believe I may also have accidentally killed her will be explained in due time.

I had not been present at my father's death in 1970. He was in an Illinois nursing home, demented and failing rapidly; I was off in graduate school at Chapel Hill with a wife and a newly-born son. For a variety of reasons, my father didn't get visited very often while he was institutionalized. While I have no reason to suspect that he received poor care, his death had to have been a lonely one. I vowed that when the time came, this would not be the case for my mother.

She was hospitalized four times during 1997, the final year of her life. At 84 she was frail but lucid, living in a senior apartment. I joked with friends that keeping my mother independent was running me ragged. My wife, our sons, and I provided almost every service my mother received. Since the boys lived in other cities and my wife had a job where regular hours were required, I did most of the shopping, hauling, waiting in doctors' waiting rooms, scrubbing of carpets when she'd had diarrhea, and delivering of meals and laundry. I recall being told by my graduate students that adult daughters are the nurturant ones who deliver all the care to elders and responding, "Yes, I was reflecting on that very thought the other night while cutting my mother's toenails." Visiting nurses served as family extenders and eased the load during the final months.

At her last hospitalization when she was admitted for a touch of pneumonia, it was clear that my mother's kidneys were failing and it was just a matter of time. It turned out to be six weeks, although we had expected a bit less, I suppose. After acute care hospitalization she was sent to a geriatrics unit where she received sub-acute care. Fortunately, about half of the staff on that unit are former students of mine. As a keen observer of the influence of staff perceptions of social value when working among the terminally ill, I made sure that my mother wore her mink coat when she was transferred. It worked. Not only was she Doctor Thorson's mother, but she was a real lady. She was treated like a queen.

As the weeks went by, the docs were open to my suggestions that the heart and blood pressure meds my mother was on were in fact an echo of a previous time when we were hoping to extend her life. They agreed to withdraw everything now that our intention was simply to keep her comfortable. Our goal had changed, and it seemed necessary to articulate that fact. Had I not brought it up, I'm sure everyone would have continued to pretend that she would get better.

My role was to be in charge of the visitors, as my mother held court until the final two days of her life. I was literally like an orchestra conductor, now bringing in the woodwinds, now the strings. I was also in charge of keeping out the large and boisterous family friend who made a pest of herself by visiting too often. Out-of-town relatives came and went, but it was the regulars who really pitched in and helped. It was an astonishing parade, an extended community of church ladies, and getting their schedule together meant that I could go back to the university and teach my seminar as well as my morning undergraduate class. I'd go to the hospital and eat lunch with Mom and then come back and spend the late evenings with her. One of the things she enjoyed most was being read to. I recall that the last book was a thick biography of the Windsors (Mother was a Royalist); near the end, she asked me what page I was on, and when I told her it was 86, she said, "Read faster."

At the very end, she was not in much pain, but was restless and semi-conscious. A morphine drip with a patient-controlled analgesic (PCA) pump was installed; it had a hand-held clicker that would allow a predetermined dose once every 15 minutes. I, of course, was on it like a telegrapher, and it helped a lot. However, when summoned to come in at 4:30 the final morning, the morphine pump didn't seem to be doing much good. Hugging my mother and mopping her brow seemed like the best I could do in terms of comfort measures, until at 8:30 I noticed that the wheel of the steel cart holding the IV bag was sitting on the IV's plastic tube. It was a natural reaction to roll the cart off the tube. All the morphine that had accumulated in the tube during the previous three hours then seeped into my mother's arm, and she slipped into the next world.

III

Jerry, an old friend from a dozen years of singing together in the church choir, called one evening to let me know of his frustration with the hospital care his 85 year-old father was receiving. His Dad had emphysema and congestive heart failure. He'd been in a nursing home for three months. When he had a respiratory arrest there, they pumped him up and sent him to the hospital. He was now in the ICU, there was a tube down his throat, and he was barely clinging to life. The docs wanted to do a tracheostomy and put the old man on a ventilator.

I asked Jerry if he knew that once his father was on the ventilator there would be little chance of ever getting him off of it. He did. I also asked him why they wanted to do that procedure on a man who was so apparently near the end of his life. Jerry said that when Dad had entered the nursing home, they'd had him fill out advance directives. Asked if he wanted to be resuscitated if the situation arose, he checked off "yes" on the form. Now, the people at the hospital had seen this in the file and had taken it as a directive that he wanted all available means taken to keep him alive. I asked Jerry if that was what he thought his father, in fact, wanted, and he said no, he didn't think so. He was in fact sure that Dad specifically did not want to spend his last weeks or months on a machine breathing for him. Several times already his father had tried to pull out the tubes that were in his nose and mouth.

So, I advised Jerry to meet with the surgeon immediately, "Tell him or her that you are the person responsible for your father, the situation has changed since he was admitted to the nursing home three months ago, that you do not authorize them to go ahead with the surgery, and that you want only comfort measures for your father."

That was on a Sunday evening. That Thursday I got a call from Jerry's wife. She said the staff had been only too willing to go along with his request. They'd actually been waiting to hear something from the family to prevent what they thought would probably be a useless procedure. Dad was now out of intensive care, in a regular hospital room, his daughters were in from California, and everyone was reconciled to the fact that this was the end of his life. There was just one thing: their youngest son Jeremy would be playing the trumpet solo at the last high school program of the year that evening, and since all the aunts were in from out of town ...

I picked up on where that was going: "And you don't want Dad to die alone. What time do you want me to be there?" So, I took a stack of term papers with me to grade while I sat in the hospital and watched an old man die.

He was lying there on his back with his mouth open, obviously close to the end. His breathing was labored, short little puffs that weren't doing him any good. He wasn't conscious, but he wasn't comatose, either. When I went over and took his hand to tell him who I was, hoping he'd remember me from the many times we'd met, one eye did flutter for a moment. It didn't focus on me, but it did open. And, he squeezed my hand.

As I sat there reading my papers, it was clear that the old man wouldn't be able to keep breathing like that for much longer; he would die of exhaustion. I clocked him. At 7:00 he was taking 23 breaths per minute; at 8:00 it was up to 30; by 9:00 he was taking 43 breaths per minute. I shouldn't say breaths, they were pants. Try taking 43 breaths per minute.

There was a monitor hooked up. The top LED (light-emitting diode) gave his blood oxygen levels, the bottom his pulse. He had an oxygen tube in his nose and an intravenous line giving him saline or glucose. Respiratory therapists came in twice while I was there to suction the gunk out of his trachea. When the light on the monitor indicating his heartbeat slipped below 50 it would turn from green to red and sound a beeping noise. I asked a nurse to turn down the volume, as the noise agitated him. She said, "But if I turned off the sound, we couldn't hear it."

"That's right. It's okay if you don't hear it." It seemed necessary to come to an agreement. She understood, and she turned off the sound; she acknowledged that he was a "do not resuscitate" patient and there was no need for the alarm. We were then in an open awareness: the man was dying and it was all right. On the other hand, he was still hooked up to an antibiotic drip. Damned if I know what good that was going to do.

The readings on both monitors gradually slipped down and down. The light on the pulse monitor was now blinking red much of the time, reading mostly in the 40s. His breathing became even more labored. The first time both monitors went flat and read zero I figured that was it. The old man continued to pant along, though, and I began to have less faith in electronic monitors and more in the basic instinct to cling to life. The monitors went down to zero several more times while I was still on shift.

Jerry and his sister came in to relieve me late that evening. They'd enjoyed the program at the high school and were most appreciative. Dad died at 1:00 that morning. He wanted a Dixieland band at his funeral. He got it.

IV

By far the greatest amount of the care that is given to older people is delivered by family members. There is no greater illustration of this than what we see around us every day with example after example of older wives caring for their husbands, husbands caring for their wives, sons and daughters caring for their parents and grandparents, and so on. Whether it is a service so simple as stopping by the store for someone, or as all-encompassing as caring for an Alzheimer's patient for the rest of his or her life, family members and friends perform countless acts of service for old people. This care goes in both directions; in many instances the primary beneficiary of extended households is the adult child.² In other words, there is a mutuality to family caregiving as well as an expectation that older adults will help their adult children when possible and adult children will be expected to help their parents when the time comes.

Some adult children may perform the services they do out of an anticipation of some type of reward or repayment, a clear example of the exchange theory of aging. Actually getting payment or expecting an inheritance may happen less frequently than getting some kind of psychic reward, feeling good for satisfying a filial obligation, getting praise or positive reinforcement from others, or "building up credits" in the expectation that in the broad scheme of things they will eventually be repaid. Most people, though, have little expectation of any tangible reward for the services they provide for family members and friends. Rather, they help their loved ones because of a sense of filial obligation, the notion that they are supposed to help them merely because that is the way that members of a family behave.

This family feeling is the cement that holds civilizations together. Call it support for the group, tribal loyalty, family obligation, or norms and values of a culture, the interpersonal regard and care provided within families are among the most important factors in human relationships. As a general rule, in the field of gerontology we say that people in late life who have families seem to do better in many ways than those who are without families. When family systems break down, there is a potential for depression and burn-out among family caregivers.³

In the cases presented above, we have seen the need for extending family resources. The Chinese are richly aware of their own demographic problem: The nation is bursting at the seams with too many people, and the result is a draconian birth control policy that has been enforced for the past twenty years. Where will the family caregivers come from for the next generation of Chinese elders? Many more old people will be like the residents of the Shanghai nursing home we described: childless and without visitors.

In my own case, the family extenders consisted of visiting nurses to my mother's home during the last few months of her life as well as a parade of helpful church ladies during her final weeks. In Jerry's case, I was the family extender. And in both of our cases an important point should be recognized: the extension of help was both exceedingly welcome and only temporary. For Jerry, the help of a friend was of great relief to the family and it was only for three and a half hours. In the case of my mother, the visits were spread out over a longer time, but they were relatively brief in terms of duration. These small but important services are what friends do for one another.

One wonders what our own brave new world will look like. The birth rate has declined steadily for two generations.⁴ It is no secret that the fastest-growing proportion of the population is elderly. Many people are remaining childless.

We must conclude that they had better have lots of friends. And this may be the conundrum of the 21^st century. Many of us no longer know our neighbors, or we move so often as to sever neighborhood bonds. Fraternal organizations are literally dying off. In my mother's case, the helpful friends came from congregations, but we have seen a steady decline in church and synagogue participation since the mid-1950s.⁵ It would seem that the group activity of choice among many young urban professionals is going to a fitness center to engage in solitary exercise with others who are also thus engaged. Although some colleagues point to the community strength among older African Americans, which is centered on the church, in fact, African Americans are no more likely to be church-goers than any one else.⁶

This is not to say that all hope is lost. Plenty of people are making plenty of friends all the time, despite our stereotype that most people are becoming urban hermits. Neighbors are helping neighbors. Hochschild found old ladies caring for each other in San Francisco single-room walk-ups.⁷ Kastenbaum observed older people caring for one another in Arizona retirement communities.⁸ Many a person with AIDS has been cared for by a non-kin caregiver. The American equivalents of kai relationships are no doubt being formed even as we lament our collective loneliness. People wise enough to plan for their financial future in old age may surprise us by planning for their social futures as well. Unexpected communities spring up unaware like weeds growing through sidewalks.

The point of extending families when we're running out of family members is that a little help goes a long way. We need to remember too that there is a mutuality to help, so we need to be open to opportunities, to be eager to form relationships, to go to places where friendships are likely to be formed. We need to care for one another.

References