PPD601 CalPolyPomona Management Of Long Term Care Organizations

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Please read the book( PDF), then follow the requirement answers 4 questions ( Picture), the questions should about our class, so you can check our syllabus to know about our class. Need 750 words around 2 and half pages. Due US pacific time, 11/6

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With a Little Help from Our Friends 2 With a Little Help from Our Friends Creating Community as We Grow Older Beth Baker Vanderbilt University Press Nashville 3 © 2014 by Beth Baker All rights reserved Published 2014 by Vanderbilt University Press Nashville, Tennessee 37235 This book is the recipient of the Norman L. and Roselea J. Goldberg Prize from Vanderbilt University Press for the best project in the area of medicine. This book is printed on acid-free paper. Manufactured in the United States of America Library of Congress Cataloging-in-Publication Data on file LC control number 2013041118 LC classification number RA564.8.B345 2014 Dewey class number 362.16—dc23 ISBN 978-0-8265-1987-0 (cloth) ISBN 978-0-8265-1988-7 (paperback) ISBN 978-0-8265-1989-4 (ebook) 4 To Ross for his support in so many ways 5 Contents Acknowledgments Prologue: The Oncoming Train Part I. A Time Like No Other 1. The End of Denial: Taking Charge of How We Live 2. Interdependence: Reconsidering “Aging in Place” Part II. A Wealth of Options 3. The Village: Neighbors Helping Neighbors 4. Cohousing: Creating Community from the Ground Up 5. Cooperatives: Living Affordably 6. NORCs: Retiring Naturally 7. Community Without Walls: Weaving a Web of Friendship 8. Generations of Hope: Living Well by Doing Good 9. Affinity Groups: Settling with Your Tribe 10. Housesharing: Finding Companionship with Friends—or Strangers 11. The New Family: Balancing Togetherness and Privacy Part III. Getting from Here to There 12. Design for Life: Building Homes and Neighborhoods that Serve Us 13. How Will We Pay?: Planning for the Unknown 14. Who Will Help Us?: Advocating for Direct Care Workers 15. Is There a Robot in Your Future?: Accepting Non-Human Help 16. “What If?”: Mapping Our Plan B Epilogue Appendix A: Glossary of Alternative Models Appendix B: Questions to Help Guide Our Choices Notes Index 6 7 Acknowledgments This book would not have been possible without the openness of the many people who allowed me to visit their communities and who were willing to share their stories. Their names are in these pages, and I thank each one of them for their time, their honesty, and their trust. In particular, Gail Kohn was a valuable resource and font of insights who made many of these journeys more rewarding (and fun). My friend Barbara Armstrong greatly encouraged me with her enthusiastic review of my manuscript. Katie Pugliese contributed her considerable computer skills to assist me with the index. My wonderful neighbors and the members of the Washington Ethical Society have taught me the meaning and value of living surrounded by a close community of support. Many other friends and family members—you know who you are—have consistently believed in this project and encouraged me throughout the years I worked on it. Finally, Michael Ames, director and editor of Vanderbilt University Press, has been a steadfast believer in my work, and for that I am eternally grateful. 8 With a Little Help from Our Friends 9 Prologue The Oncoming Train In 1922, my maternal great-grandfather Albert Nisley and my great-aunt Marie were killed by a train after their car stalled on the railroad tracks. From the time I was a little girl, I wondered how this could have happened. Why did they not get out of the car in time? I picture my great-grandfather desperately trying to start the engine. Did he shout at his daughter to escape while she could? Did she refuse to abandon him? Were they on a blind curve and did not realize that disaster loomed? My mother, who was three years old at the time, could not answer these questions. “It wasn’t that uncommon,” she shrugged. “You heard about accidents like this. Maybe they didn’t know how fast the train was coming.” The scene of this drama was outside of Washington Courthouse, Ohio, a rural community thirty-five miles southwest of Columbus where my mother was born and raised. It still looks much the same, flat land broken by the occasional grove of trees and neatly kept farmhouses, barns, and silos. Farmers on enormous combines now cultivate hundreds of acres of corn and soybeans, and the small farms have given way to ever larger holdings. The train wreck changed the lives of my grandparents, Ralph and Elsa, in unwelcome ways. Good, upright Methodists with a strong moral compass, they accepted the heavy mantle of duty. At the time, they lived in the small house down the road from the family farm, where my cousins still live. My grandparents were contented there. But when my great-grandfather was killed, all that changed. My great-grandmother Hannah expected my grandparents to move into the main farmhouse and take care of it and of her. Elsa did her duty, but I can picture her, lips pursed, doing her chores with resentment. Her brother-in-law and his wife, she believed, could have moved in with Hannah, with whom Elsa did not get along. After all, they did not have children, while my grandmother had two little girls to care for, with another to come soon after. To make matters more difficult, my great-grandmother may have developed Alzheimer’s disease or some other type of dementia. “I remember she asked me once, ‘Did you ever darn ears?’” my mother told me, laughing and still mystified. Such an odd question that it stayed with her 10 for more than eighty years. Toward the end of her life, my great-grandmother stayed upstairs in her room, tended by a nurse. When she died, the funeral was held there in the farmhouse parlor. Because of this story, I have always been a bit skeptical about the good old days when families took care of their own. Much as we like to think of those times wrapped in a rosy gauze of nostalgia, the truth was often more complicated. Friction and misunderstandings are as old as human families. Nevertheless, throughout history, and still today in many cultures, families were expected to care for their elders. Midway through the twentieth century, this narrative shifted in the United States. Along with the death of the family farm, the outward migration to far-flung places for work and women entering the workforce in greater numbers led to the unraveling of the old rules and assumptions. A dominant refrain of the older generation became, “I don’t want to be a burden on my children,” and an often unspoken corollary, “I want to stay independent; I don’t want my children to control my life.” But this new perspective on aging may be no more satisfying than the old obligations of extended family. After my father died, my mother kept their house for many years but eventually moved to a continuing care retirement community, first living independently, then in assisted living, and finally dying in the rehab section of the nursing home. It was not a future I would want for myself. Although she had a lovely small apartment in assisted living, a sense of ownership and control is difficult to maintain once you are in a large facility. Many forces conspire to undermine your autonomy, and in small ways you are made aware that you are a visitor and not the mistress of your castle. My mother had all of her faculties, including her Scrabble skills and wonderful wit. Yet because of institutional fire concerns, she was not allowed to have a toaster. I feel a deep dread as I imagine myself in that situation, a fear of that loss of control. Of course my mother could have wheeled herself down to the dining room and gotten whatever breakfast she wanted. But she was a late riser and liked to have a leisurely breakfast in her robe. The price she paid, then, was to spend her final year beginning each day with a wistful longing for hot buttered toast. My mother-in-law would seem to have it better. At age ninety-five, though frail with multiple mild medical problems, Ruth lives in a roomy apartment in a high-rise complex where she and my father-in-law moved nearly thirty years ago in downtown Silver Spring, a suburb of Washington, DC. She is fiercely independent and would not dream of moving to an agerestricted community as my mother did. While my mother had an almost 11 Zen-like detachment from her “stuff,” Ruth is surrounded by a wealth of belongings that are precious to her: hundreds of books and videos; her mother’s gold embossed china; her piano, which she plays regularly; family photos; file drawers of articles and leaflets from political and union organizing; and art work that covers every available inch of walls. Only in the last few years did she hire someone to help with cleaning once a month. But even with the blessings of independence, my mother-in-law faces difficulties. She no longer drives, and as she has grown more frail, she finds it more difficult to use public transportation. She is lonely and misses not only the companionship of her husband of fifty-two years, but also of friends who have died or moved away. She spends considerable time going to doctor appointments. She clings to the silver thread of hope that nothing will happen to her physically or mentally to unravel her present situation. Meanwhile her rent has escalated dramatically, and she wonders if her fixed income and savings will be enough to allow her to remain where she is. My family, then, represents the range of options that have existed for most people in our country as they age: move in with family, move to a retirement community or long-term care, or live alone. But these are not the only ways we can imagine growing old. A significant cultural shift is underway. More than any other time in human history, people of the “Third Age” are realizing that they can make other choices about where and how to live. With intention and planning, people around the nation are creating ways to live in community, alternatives that give them more control, more companionship, more dignity and choice than generations past. In my last book, Old Age in a New Age, I told the story of a movement dedicated to transforming nursing homes, those institutions of last resort, to homey communities based on relationships and person-centered living. What drew me to that topic were the inspiring leaders who were committed to sweeping transformation. I learned that with imagination, commitment, and hard work, people can find solutions to seemingly intractable problems. This book, too, is a story of imagination, commitment, and hard work. But unlike the culture change movement in long-term care, this movement is driven less by enlightened organizations than by small groups of individuals —families, friends, neighbors, or kindred spirits—bonding together to take charge of their destiny as best they can. As I enter my sixties, my own perspective on growing old is evolving. The aftermath of my great-grandfather’s fatal crash continues to ripple, affecting me four generations later. I don’t want to be caught unawares, oblivious to the oncoming train. Neither do I want to be the survivor, like 12 my grandmother, who feels she has no choices. It’s time for my generation to slow down, see what’s around the bend, and choose wisely. 13 Part I A Time Like No Other 14 CHAPTER 1 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 rear-view 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 15 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.”1 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 16 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.”2 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 postCivil 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.3 17 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.� …