• a mobile home cooperative in small-town Oregon
• a senior artists colony in Los Angeles
• neighbors helping neighbors in "Villages" or "naturally occurring retirement communities"
• intentional cohousing communities
• best friends moving in together
• multigenerational families that balance togetherness and privacy
• niche communities including such diverse groups as retired postal workers, gays and lesbians, and Zen Buddhists
Drawing on new research showing the importance of social support to healthy aging and the risks associated with loneliness and isolation, the author encourages the reader to plan for a future with strong connections. Baker explores whether individuals in declining health can really stay rooted in their communities through the end of life and concludes by examining the challenge of expanding the home-care workforce and the potential of new technologies like webcams and assistive robots.
This book is the recipient of the annual Norman L. and Roselea J. Goldberg Prize for the best project in the area of medicine.
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With a Little Help from Our Friends
Creating Community as We Grow Older
By Beth Baker
Vanderbilt University PressCopyright © 2014 Beth Baker
All rights reserved.
The End of Denial Taking Charge of How We Live
Lynne, a fifty-something dietician in Port Gibson, Mississippi, has had a fantasy for years. When she grows older, rather than move to a retirement community or live alone, she and a handful of close friends will find a way to be together. "We talked about buying a piece of property and building us a place to live," she said. "We envisioned maybe a round building, where everyone had their own apartment, to come and go as they please, but also a central living area. We would be some place we had chosen as a group. We would hire someone to cook and clean for us. That would be a way of taking care of each other, but still have privacy."
Conversations like this are happening all over the United States, as my generation of baby boomers realizes that middle age will soon be in the rearview mirror. And then what?
That question often arises as we struggle to assist our parents, now very old, as they lose mobility, lose memory, lose independence. We see them, whether resistant or acquiescent, cheerfully accepting or refusing "to go gentle," and it is troubling, even terrifying, to imagine ourselves in their shoes. Can it really be that in a blink of an eye we will be the ones our own children fret about? Will we face the same limited choices as our parents?
And will we continue the age-old practice of denial? The SCAN Foundation, which focuses on transforming health care, including long-term care, in ways that foster independence, dignity, and choice as we grow older, has held focus groups around the country of people who are forty to sixty-five years old and who have been family caregivers. What these conversations revealed was that participants of all ethnic and class backgrounds were unable to imagine themselves as growing frail and needing help. "They can describe the experience of caregiving very accurately," said foundation CEO Bruce Chernof, MD, in an interview. "People acknowledge it was a lot of work. Generally people were caring for someone who was a family member or close friend and they felt a lot of pride in what they had done. Even though they could intellectually describe it, when they applied that knowledge to themselves, they couldn't do it." It's almost as if we are hard-wired to not imagine our own vulnerability.
Many of us have said our last good-byes to parents, and suddenly, there at family gatherings and funerals, we turn around and realize to our surprise we are the old ones. The torch is ours, whether or not we are ready to accept it.
"The very cultural and technological forces that protect us from early death are also redrawing the social maps we need to find our way through life," wrote geriatrician William H. (Bill) Thomas, MD, a pioneer in transformative eldercare. "Long-settled ideas about how life is to be lived are remade in less than a lifetime."
Our nation and indeed the world are undergoing unprecedented demographic change. In 1900, 4 percent of Americans were over sixty-five. Today that figure is 13 percent; it will be 17 percent by 2020 and continue to grow over the next twenty years or more, fueled by seventy-two million baby boomers. "Those may not seem like big differences, but they're huge," said Margaret Perkinson, a gerontological researcher at St. Louis University.
Throughout human history, cultures have taken a similar trajectory, she explained. Preindustrial societies have a high birth rate and a high death rate. People die from infectious diseases, poor sanitation, and lack of food. In the next stage people start to live longer but the birth rate is still high, with families counting on children to help in the fields. "With improvements in public health, you tend to have a population still relatively young, but increasing in size," she said. "In the next stage, the birth rate starts to decline because you get to a point where there are a lot of cultural changes, shifting from an agricultural to an industrial economy, where it's no longer as advantageous to have huge families." Labor laws prohibit children working in factories, and as women join the workforce, caring for large families becomes expensive and difficult. With both a declining birth rate and a declining death rate, the population grows relatively older.
These sweeping changes have very real consequences for individuals and families, said Perkinson. As recently as 1900, the average US life expectancy was just forty-five (in part due to high infant mortality, not only to people dying at a younger age). "The demands of caring for older adults are much more significant than they were before," she said. "In the past, in a typical family, the father would die before the children left home. The whole notion of empty nest is a modern concept. The notion of retirement is a modern concept. These are hugely significant developments."
Despite changing demographics, elders have always yearned for independence and control, said Andrew Achenbaum, professor of history and social work at University of Houston. Society as a whole has voiced ambivalence about the meaning of old age. In his book, Old Age in the New Land, Achenbaum wrote, "Philosophers, poets and other writers for millennia have pondered the aged's strengths and weaknesses and alternately affirmed the potential and despaired the decline that comes with age."
On one hand, older people were seen as wise counselors with a highly developed sense of morality. The loss and frailty that accompanies old age were understood to give elders more compassion and wisdom than younger people who had not yet faced life's trials, and older people were viewed with respect and admiration. This view was most commonly held in the United States before the Civil War, according to Achenbaum's research, when retirement was not mandatory and people worked as long as they were able.
But the view of old people as somehow different from the rest of the population was a mixed blessing. Eventually their status was undermined, and the shift to labeling old people as "the other" began. "Instead of depicting the elderly as stately and healthy, more and more observers described them as ugly and disease-ridden," Achenbaum wrote of the post-Civil War era.
By the twentieth century old people were seen as a vexing problem. They were portrayed as physically and cognitively in decline, economically useless in the industrial age, sometimes even deviant in their behavior. Moreover, the popular press focused on all manner of disagreeable qualities supposedly common in the elderly; they were presented as being bitter, grumpy, lazy, judgmental, unkempt.
Once they became viewed as a problem, then of course they needed to be "fixed." Eventually a vast network of solutions to the "problem" of old age was developed, including the development of tens of thousands of nursing homes, assisted living and retirement communities, and now a $100 billion industry in "anti-aging" products. Increasingly, younger to middle-aged adults came to be viewed as "normal," and older people as "less than." A 2013 study led by Becca Levy of the Yale School of Public Health documented extreme ageism on Facebook, the popular social media site, identifying eighty-four groups (made up of more than 25,000 members) that, according to their own descriptions, focused on older people. Of these groups, all but one were sites where people espoused extremely negative views, with one group even proclaiming that anyone "over the age of 69 should immediately face a firing squad," while other groups described elders as "infantile" people who should not be allowed to drive or shop.
Increasingly, though, researchers, advocates, and older people themselves have pushed back against long-held ageism. In an article on aging in place, scholars writing about "naturally occurring retirement communities" (NORCs; see Chapter 6) challenged the assumption that being old, by definition, means being frail, vulnerable, and helpless. They suggest that powerful images and stereotypes have the force of self-fulfilling prophecy. They point to a body of research that has found that older people who believe they have something valuable to contribute to their families and their communities and who assume they will not end up in institutions actually feel healthier and are much more likely to successfully age in place than their peers who hold more negative views about their lives. The researchers called for fundamentally changing our "images and perceptions of needy, dependent older adults," replacing them with "images and perceptions of older adults as wise, resilient, and capable of offering resources to their communities." This transformation, the researchers suggest, actually promotes our ability to age in place.
This goes along with what the SCAN Foundation and other researchers have found. "At some level all of us really want to be the person we are today and we don't want to see ourselves as functionally limited tomorrow," said Bruce Chernof. "Most people want to see themselves as good and hardworking and successful."
* * *
Dale, a striking eighty-year-old widow who lives in a lake community outside Columbia, South Carolina, reflected on her conflicted feelings about this time of life. "It's hard to believe I'm actually eighty," she said with a laugh. "The only reason I wouldn't care for someone to know how old I am is we have so many stereotypes. I hate the thought of being stereotyped—the 'daftness' [people associate with old age]."
Dale, who still drives at night, lives alone, has a full life with friends and family, and is a youthful-looking and beautiful woman, does not fit the image that most people probably carry in their heads of octogenarians. I met her at a friends' gathering on a boat dock, where we drank wine and watched July fourth fireworks over Lake Murray. In this and later conversations, what struck me about Dale was her thoughtful consideration of what her future might hold.
As Dale illustrates, the definition of "old" grows ever more malleable. Does getting a Social Security check and receiving Medicare in your mid-sixties make you "old"? After all, when the Social Security Act was passed in 1935 one of the main purposes was to ensure that older Americans did not live in desperate poverty. It was called "old-age assistance." But I venture to guess that few of the baby boomers getting ready to collect their "old age assistance" feel old. Now we have terms like "old-old" for people over eighty-five, and even that is not always descriptive. The very notion of chronological age is being questioned: a sixty-five-year old with multiple chronic medical conditions and poor mobility may share much with a ninety-year old in a nursing home, while someone like Dale may be much "younger" than her age would suggest.
In a New York Times "New Old Age" blog, experts were asked what to call this demographic group now that baby boomers are among its youngest members. There was little agreement—seniors, elders, the elderly—none seemed quite right. Even the word "aging" itself is so associated with decline that many reject it. (Teddi, seventy-six and a resident of the Burbank Senior Artists Colony, told me she preferred the term "recycled teen.")
"The culture's problem is that we split aging into good and bad," Thomas Cole, director of the McGovern Center for Humanities and Ethics at the University of Texas Health Science Center at Houston, wrote on the blog. "We're unable to sustain images of growing older that handle the tension between spiritual growth, the good, and physical decline, the bad. In the Hebrew Bible, aging is both a blessing and a curse. But our culture can't achieve this kind of synthesis."
A senior cohousing community in Santa Fe even decided to change its name from ElderGrace to Sand River because of the connotation. "The main reason is, we have some men in our community who didn't want to tell anybody where they lived—they felt it created an image of gray-haired people walking around with walkers," explained Marty, a resident there. "People asked if it was assisted living. I actually had someone I ran into who came to dinner and she asked if we'd sold the last two units in 'ElderCare.' That convinced me."
In a 2013 piece on NPR headlined "For Elderly Midwife, Delivering Babies Never Gets Old," about a seventy-one-year-old practitioner, a huge outcry erupted over the label "elderly," including a complaint from the midwife. (As an example of how language evolves, one commenter on a Washington Post blog reminded readers that humorist Stan Freeburg in 1957 rewrote the lyrics to a classic show tune, singing "Elderly Man River," since the word "old" had been censored.) In fact, journalists are now advised to avoid any descriptor such as "elderly" for fear of offending someone. "Use this word carefully and sparingly," according to the Associated Press Stylebook.
Many writers have tried to make sense of this new era. "Anti-aging" books have been published for the last twenty years, promising elixirs that will keep our bodies youthful, our sex drive in fourth gear, our skin petal-fresh, and our lifespan stretched well past the century mark. Others reject these promises as naive at best, hucksterism at worst. Instead, some argue, we need to embrace our Inner Elder, reclaiming our rightful place as wisdom-holders and keepers of the flame. Some see the Third Age—the stage between the Second Age of employment and childrearing and the Fourth Age during our last chapter of life—as a time of liberation, forever young on our own terms, with retirement as rediscovery.
Although most would welcome this, the truth is that old age is a frontier that none of us can predict until we're trekking through the middle of it. How our health—physical, emotional, cognitive—holds up depends on our genes, our environment, and our lifestyle, and to pretend otherwise can leave us unprepared to face serious difficulties that are bound to arise. Millions of us face financial hardship as well, challenging our expectations of what old age will be like.
We would do well to contemplate the next chapter of our lives. What will our homes be like? If, like my mother, we begin to fall or have difficulty walking or our vision fails, will our home serve us or be an impediment to our wellbeing? How will the fabric of our lives be woven? Are there people nearby—family, neighbors, friends, members of our congregation—who care about us, who would be willing to help us or accept help from us?
The essential question facing each of us as we age is: how can we balance our desire for independence with staying connected to others? That we even can raise this question is remarkable. Never before have older people, often through their own imagination and determination, had real options from which to choose.
* * *
In modern US culture, the concept of "retirement living" was born in 1955, in Youngtown, Arizona, the nation's first age-segregated retirement community. This was followed in I960 by Sun City, the brainchild of developer Del Webb. According to the corporate website: "Spurred on by the early success of Youngtown ... Webb Company officials developed the idea of taking the 'retirement' community concept to the next level. Youngtown was created for retirees living on minimal, fixed incomes. The homes were small—the amenities nonexistent. Del Webb toyed with the idea of creating a self-sustaining community that would be all encompassing with affordable housing and recreation." In 1962, Del Webb made the cover of Time magazine, with the headline, "A new way of life for the old." (Never mind that in the accompanying story we learn that the hard-charging Webb "could not stand the life in one of his own Sun Cities for more than a few days—or a few hours.")
Today there are fifty-nine Del Webb communities, forty-four of them age-restricted, with golf courses, swimming pools, wellness centers, lifelong learning opportunities, art studios, and clubs. According to the website, "everyone plays a part, everyone brings something to the party. So chart a new course, start fresh, free your inhibitions, let yourself shine at Del Webb."
Much as the "active seniors" want to believe they will be lobbing tennis balls until the end, frailty and forgetfulness sneak up. This was recognized by the next iteration of elder housing which came in the 1970s with assisted living, essentially the "NOT-nursing home" alternative for those who could no longer live independently. Assisted living encompasses a spectrum, from very modest single rooms to full, accessible apartments (often minus the stove, for safety reasons). Residents are provided meals and assistance as needed. In nearly 90 percent of cases, people pay for assisted living out of pocket. Although nominally considered "independent" living, assisted living increasingly attracts people with dementia and chronic medical conditions.
Excerpted from With a Little Help from Our Friends by Beth Baker. Copyright © 2014 Beth Baker. Excerpted by permission of Vanderbilt University Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Prologue: The Oncoming Train 1
Part I A Time like No Other
1 The End of Denial: Taking Charge of How We Live 7
2 Interdependence: Reconsidering "Aging in Place" 19
Part II A Wealth of Options
3 The Village: Neighbors Helping Neighbors 29
4 Cohousing: Creating Community from the Ground Up 40
5 Cooperatives: Living Affordably 56
6 NORCs: Retiring Naturally 67
7 Community Without Walls: Weaving a Web of Friendship 86
8 Generations of Hope: Living Well by Doing Good 99
9 Affinity Groups: Settling with Your Tribe 109
10 House sharing: Finding Companionship with Friends-or Strangers 131
11 The New Family: Balancing Togetherness and Privacy 144
Part III Getting from Here to There
12 Design for Life: Building Homes and Neighborhoods that Serve Us 159
13 How Will We Pay?: Planning for the Unknown 170
14 Who Will Help Us?: Advocating for Direct Care Workers 178
15 Is There a Robot in Your Future?: Accepting Non-Human Help 186
16 "What If?": Mapping Our Plan B 197
Appendix A Glossary of Alternative Models 219
Appendix B Questions to Help Guide Our Choices 221