"Creating Community as We Grow Older" by Beth Baker

Submitted by Community Animator on January 8, 2015 - 9:40am
An excerpt from her book: With a Little Help from Our Friends: Creating Community as We Grow Older

As I was completing the manuscript of [my] book, our neighbor Ann sent an email inviting those of us on our block who are 60 and older to a potluck.  She and her husband Merrill wanted to discuss aging in place here in our neighborhood. “I realize that for now, everyone's mostly healthy and independent, so there might not be too much interest just yet,” she wrote. “But if there is, we'd like to discuss what, if anything, folks have thought about becoming aged, staying in our homes, and building some kind of cooperative network among us.”

We have a close-knit neighborhood, but still, Ann was surprised when 22 people from a three-block area crowded into their living room. Over plates of baked ziti, chicken, and salad, we began a discussion that echoed the themes in the pages of this book. All but one couple, who plan to move to a continuing care retirement community when they reach their early 70s, want to remain on the street. The questions flowed: How would we make our homes accessible? How would we ensure that people felt comfortable asking for help? What kinds of help were reasonable to expect? Should we include the younger families in our network?

By the end of the gathering, we were launched. I realized how far ahead of the curve we were. We were proactively pushing back against the entrenched denial that we were growing older. More important, we were building our network on a firm foundation of trust. We had all lived in our neighborhood for many decades, helping each other through illness, the death of loved ones, new babies, retirement, bar mitzvahs, and other assorted milestones. We had spent countless picnics and New Year’s Eves together. While we are not all close confidantes, we have each others' backs.

Even before our second meeting, one creative couple was working on a website for our little group. It has photos from various gatherings, some of them hilarious, as our street is locally famous for lampooning topical issues when we march in our town’s July 4 parade. There are links to financial resources like reverse mortgages, to adult education courses, and to upcoming events.

We already are dealing with a serious medical issue as one of our own, who grew up on the street, was recently diagnosed with stage-4 breast cancer. We seamlessly organized meal support and household help for her overwhelmed husband while she was in the hospital. We get regular emails from him about his wife’s condition and unflagging spirits. In one, he wrote: “We believe the prayers and happy thoughts and positive energy sent her way are working. We thank you. 
Love and white light to all of you.”

I realized that aging in community doesn’t begin when we turn a particular age, be it 60 or 80. It begins right now, whatever our age, forming relationships, lending a hand, sharing a laugh, knowing you’re there for each other. That’s the lesson from all who shared their stories in this book. It matters not what form or structure our communities take—or if they have no structure at all—the point is to have a community, a circle of caring—made of family, friends, and neighbors—who will be there for the long haul, as best they can, as we live our final chapter.

Comments:
Being Mortal - book review

Thanks for sharing this excerpt Christie. I want to share this powerful and thought-provoking review of a new book  Being Mortal:  Medicine and What Matters in the End by Atul Gawande,  reviewed by my good friend and colleague Michael Lerner, president of Commonweal (see www.commonweal.org). Enjoy!

This is a book about the modern experience of mortality – about what it’s like to be creatures who age and die, how medicine has changed the experience and how it hasn’t where our ideas about how to deal with our finitude have wrong.  As I pass a decade in surgical practice and become middle-aged myself, I find that neither I nor my patients find our current state tolerable…You don’t have to spend much time with the elderly or those with terminal illnesses to see how often medicine fails the people it is supposed to help.  The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit.  They are spent in institutions – nursing homes and intensive care units – where regimented, anonymous routines cut us off from all the things that matter to us in life.  Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers. (p.2)

 

Atul Gawande’s Being Mortal is essential reading.  It is essential for all who are entering older age.  For all who are facing serious illness.  And for all who are nearing the end of life. 

 

Gawande is a surgeon, a Harvard professor, a public health researcher, a New Yorker staff writer, a global activist for improved health care, and the author of four books.  Born in Brooklyn to two immigrant physician parents, he was a Rhodes Scholar at Oxford and later a MacArthur Fellow.  He worked with the Clintons on their health care task force.  An article he wrote contrasting revenue maximizing health care vs. low-cost high-quality health care systems like the Mayo Clinic influenced President Obama’s thinking on health care.  Who Gawande is shapes how he thinks, how he writes and how this remarkable book is being received.

 

Few societies have come to grips with the new demography.  We cling to the notion of retirement at sixty-five – a reasonable notion when those over sixty-five were a tiny percentage of the population but increasingly untenable as they approach 20 percent.  People are putting aside less in savings for old age now than they have at any time since the Great Depression.  More than half of the very old now live without a spouse and we have fewer children than ever before, yet we give virtually no thought to how we will live out our last years alone. (p.36)

 

While the elderly population is rising rapidly, Gawande tell us that the number of geriatricians has actually fallen 25 percent in the last few decades.  Geriatrics is poorly reimbursed.  Geriatric departments are closing even as the need for geriatrics is rising.  What this means in practical reality is there will be fewer physicians with the skills or interest to address the difficult concerns of the elderly.

 

“Mainstream doctors are turned off by geriatrics, and that’s because they don’t have the faculties to cope with the Old Crock,” Felix Silverstone, the geriatrician, explained to me.  “The Old Crock is deaf.  The Old Crock has poor vision.  The Old Crock’s memory might be somewhat impaired.  With the Old Crock, you have to slow down because he asks you to repeat what you were saying or asking.  And the Old Crock doesn’t have a chief complaint – the Old Crock has fifteen chief complaints.  How are you going to cope with all of them?  Besides, he’s had a number of these issues for fifty years.  He has high blood pressure.  He has diabetes.  He has arthritis.  There’s nothing glamorous about taking care of any of those things.”  There is, however, a skill to it, a developed body of professional expertise.  And until I visited my hospital’s geriatric clinic and saw the work that the clinicians there do, I did not fully grasp the nature of the expertise involved, or how important it could be for all of us. (p.36-7)

 

These simple facts mean that one way or another our collective amnesia about our aging society is coming to a rather abrupt end.  What will we do?  One thing Gawande does not mention is the value of specialized nurse practitioners as a resource for elder care.  Our Coastal Health Alliance in rural west Marin county makes extensive use of nurse practitioners, who are especially well equipped to deal with the multiple complaints of the elderly.  Likewise, our extraordinary family practice physicians have extensive experience in elder care.

 

But Gawande goes far beyond who will provide elder care to make a much more fundamental point about medicine:

 

We’ve been wrong about what our job is in medicine.  We think our job is to ensure health and survival.  But really it is larger than that.  It is to enable well-being.  And well-being is about the reasons one wishes to be alive…Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same:  What is your understanding of the situation and its potential outcomes?  What are your fears and what are your hopes?  What are the trade-offs you are willing to make and not willing to make?  And what is the course of action that best serves this understanding? (p.259)

 

These four questions – how do you understand your situation, what are your hopes and fears, what trade-offs are you willing to make, and what course of action serves you best  -- are at the heart of Gawande’s approach to serious illness and end of life care.  Of these four questions, the question about your hopes and fears – the question of what matters to you now – is the most critical of all.   Gawande does not take for granted that what we say matters at one time will be what matters in later years or at the end.  He describes the ground-breaking research by Stanford psychologist Lauren Carstensen that our priorities shift dramatically depending on how much time we perceive ourselves as having.

 

Our driving motivations in life…change hugely over time and in ways that don’t quite fit Maslow’s classic hierarchy.  In young adulthood, people seek a life of growth and self-fulfillment, just as Maslow suggested…when people reach the latter half of adulthood…they narrow in…They focus on being rather than doing and the present rather than the future…Tolstoy recognized this.  As Ivan Ilyich’s health fades and he realizes his time is limited, his ambition and vanity disappear.  He simply wants comfort and companionship.  But no one understands…[except] his servant Gerasim. (99)

 

But where, pray tell, will the frail elderly will live?

 

Gawande traces the rise of the modern hospital as warehouses for the frail elderly. That failed experiment led to the rise of nursing homes.  The failure of nursing homes in turn led to the rise of assisted living facilities.  Assisted living facilities in turn have been cheapened into a shadow of their original intent by market forces.

 

Who makes the decisions about where elders live?  Adult children are the driving force.  Adult children want a “safe” place for Mom or Dad – and a place that that has curb appeal. “Safety” gets increasingly defined by government regulations and the threat of litigation.  These regulated institutions are driven by market forces toward routinized care.  Elders are stripped of dignity and purpose in the name of care and safety.

 

All privacy and control were gone.  [Alice] was put in hospital clothes most of the time.  She woke when they told her, bathed and dressed when they told her, ate when they told her.  She lived with whomever she had to.  There was a succession of roommates, never chosen with her input and all with cognitive impairments.  Some were quiet.  One kept her up at night.  She felt she was incarcerated, like she was in prison for being old.  The sociologist Erving Goffman noted the likeness between prisons and nursing homes half a century ago in his book Asylum.  They were, along with military training camps, orphanages, and mental hospitals, “total institutions.”

 

First, all aspects of life are conducted in the same place and under the same central authority.  Second, each phase of the member’s daily activity is carried out in the immediate vicinity of a large batch of others, all of whom are treated alike and required to do the same thing together.  Third, all phases of the day’s activities are tightly scheduled…the whole sequence of activities being imposed from above…Finally, the various enforced activities are brought together into a single plan purportedly designed to fulfill the official aims of the institution.  (p. 73-74)

 

Today, Gawande point out, families are scattered across the country and around the world.  More and more people live alone.  When people are married or partnered, most often both partners work.  So the problem of what to do when older parents or relatives need extended care or assisted living is one of the most fundamental problems we face.  There won’t be a single solution.  There are different cultural patterns and tremendous disparities in resources. 

 

I believe a major dimension of the future of elder care and illness care and end of life care lies with grass-roots networks where people band together to get the specific kinds of support they need to stay in their homes or in collaborative living arrangements that have life and vitality in them.  Gawande describes his search for better care as his father’s health worsened in Athens, Ohio:

 

We needed options, and Athens was not a place where anyone could expect the kinds of options for the frail and aged I’d seen sprouting up in Boston.  It is a small town in the foothills of the Appalachia…One third of the county lives in poverty, making ours the poorest county in the state.  So it seemed a surprise when I asked around and discovered that even here people were rebelling against the way medicine and institutions take control of their lives in old age.  I spoke, for instance, to Margaret Cohn.  She and her husband, Norman, were retired biologists.  He had a severe form of arthritis known as ankylosing spondylitis…They didn’t want to be forced to move in with any of their three children, who were scattered far away.  They wanted to stay in the community.  But when they looked around town for assisted living options, nothing was remotely acceptable.  “I would live in a tent before I lived like that,” she told me.

 

She and Norman decided to come up with a solution themselves, their age be damned.  “we realized that if we didn’t do it, no one was going to do it for us,” she said.  Margaret had read an article in the newspaper about Beacon Hill Village, the Boston program that created neighborhood support for the aged to stay in their homes, and she was inspired…They calculated that if they could get seventy-five people to pay four hundred dollars per year it would be enough to establish the essential services.  A hundred people signed up and Athens Village was under way. 

 

They hired a handyman and a part-time director to coordinate volunteers.  A visiting nursing agency gave them free office space and a member discount on nursing aide costs.  Churches and nonprofits pitched in transportation and meals on wheels.    Bit by bit, Athens Village built services and a community that could ensure that members were not left flailing when their difficulties mounted. (p. 224-5)

 

To me, these grass-roots based systems outside the bureaucracy and costs and regulations and market forces and litigious environment that shape nursing homes and assisted living facilities are a central part of the future of real health care and the capacity of people to stay in their homes and communities.

 

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The hope Gawande offers is that there is a better way.  There are better ways for physicians to understand what truly matters to a patient.  Understanding what matters to the patient can have a very profound impact on medical decisions, on what kinds of treatments are chosen, on when to do heroic therapies and when to do conservative treatments or stop treatment altogether.

 

 There are assisted care centers that actually provide good care, nursing homes that actually bring life and autonomy into a highly regulated system, and grassroots networks that are discovering how to keep people in their homes and get them what they need in affordable ways. 

 

But the better ways are not easy.  When it comes to medical decisions that respect what matters, the conversations take more time at the start – but frequently lead to dramatic savings and greatly improved outcomes for the patient.   Simple conversations about what patients want in end of life care can reduce ER visits and enhance skillful decisions that fit a patient’s hopes and values.  At other times, the challenges are quite heroic.  It takes more time for a physician to understand what matters for a patient than to write a prescription – and physician scheduling often doesn’t provide that time.  It takes more time for nursing home staff to help a patient dress than to dress him.

 

 

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Rick! Thanks soo much for

Rick! Thanks soo much for sharing this.  These are very difficult and critical conversations to have. 

We have a library on the site for recommended books.  Would you mind if I shared this review on there!  Always looking for new great reads myself!