May 152014

The worlds of frailty, caregiving, and geriatrics tend to be a women’s world—men grow old, but women grow even older. Although more men are now acting as family caregivers, the high-touch, hands-on work continues to land mostly on women. The eldercare workforce teams with women, from direct care workers to geriatricians. For all that we aim to teach women to be more assertive in the workplace, in the main, we are socialized to be polite and quiet, and keep complaints to ourselves. When it comes to the paired worlds of frailty and aging, our silence leads to ongoing suffering.

People in the throes of taking care of others affected by the very complex situations frailty creates often do not have the time, energy, or insight to complain or object to what is happening: They are too busy with work-arounds, trying to make the system function for whatever family is currently struggling through it. Families themselves are often just shattered by the experience, and do not have the context or awareness to see that what they are experiencing is, in fact, what millions of others are—or will—be experiencing.

Too often, we are unwilling or unable to raise our voices when something goes wrong—no home health nurse can make it to the house, or medications interact with severe consequences, or a meal is not delivered—even if it goes terribly wrong. Anger and outrage make us uncomfortable. It’s a little like being in a restaurant and getting the wrong food, but not sending it back because you worry that a cook might spit in the dish. You eat something you dislike or didn’t order, and pretend that everything is okay. So too, in healthcare, people are often reluctant to speak up, fearing reprisals within and from the system, and worrying that they and their loved ones will suffer even worse care.

So, we know to act as if everything is okay, even when we can see that it is not. Or we act as if a problem is a rare event, and deny that it is, in fact, a routine occurrence. Such compliance with the way things operate keeps things operating, and so that’s what clients, patients and families, clinicians and system leaders do all the time –put up with awful situations, unreliable care and rampant errors.

In the last few years, we have seen an outpouring of blogs, articles, and books about end-of-life experiences—but these narratives, heart-stirring and gut-wrenching as they are, seldom connect individual experience with the policies and practices that shape what all of us face.

We need new habits. A book about habits—The Power of Habit: Why We Do What We Do in Life and Businessdescribes how the habits that moved Rosa Parks’ solitary action culminated in the Civil Rights Act. The author, Charles Duhigg, attributes this social movement to the strong and weak social ties Parks had with the greater Montgomery community. He writes:

 [The first mass movement of the modern civil rights era] began with Rosa Parks because she had a large, diverse, and connected set of friends—who, when she was arrested, reacted as friends naturally respond, by following the social habits of friendship and agreeing to show their support (p. 222).

What drove Parks’ singular action into incredible social action grew from a social habit we all learned in junior high—peer pressure. Peer pressure, the author says, builds on the power of “weak ties” to pull people in, to adapt new habits, and to create change. Anyone who has ever tried to persuade a middle schooler not to try cigarettes will know the incredible force peer pressure can exert.

Community Mobilization

 Without knowing it, Rosa Parks and her social network actually implemented a theory of mobilization pioneered by Harvard professor Marshall Ganz: the I-Us-Now theory of community organizing. At its most basic level, that theory relies on the power of storytelling to engage people in a community, to give them insight into an organizer’s motivation and purpose, and to help them find a way that they, too, can get involved.

In short, Parks acted on her story: She sat in the front of the bus. Later, she said, “The only tired I was, I was tired of giving in.”

Her story became the springboard to major social and civic change.

Each person seeking to change care for frail elders can apply a similar model, starting with the story of “I”—your experience, and why it matters, how it led you to become involved in an issue. Why are you motivated to make a difference in policies affecting caregiving? Have you been a caregiver in a difficult situation? How did you make it through? A story of “I” gives organizers some legitimacy to speak to, for, and with others.

Next, leaders must tell the “story of us”— connecting your individual story to a broader narrative of how others are experiencing the same issue. Once the community realizes its shared concern, it needs to have a convincing “story of now”—why is caregiving such an urgent issue? What disasters await if we do not act? Why is our current approach failing? How can we improve it?

We need to step up and speak up. We need to see how what we experience each and every day in someone’s life—ours or that of someone we love or serve—is a universal experience. We need public policies that address the barriers, challenges, and outright inequities in caregiving.

What can YOU do? A few simple things:

  1. Go online, Google “family caregiving,” and comment (if the site allows) on a few of the many articles you find, or email its author or affiliated organizations.
  2. Find a caregiving or aging-related story in the Sunday paper, and write a letter to the editor. These seem to run daily, and are easy enough to find.
  3. Find out how to contact your local government representative—and then write an email about caregiving, and your desire to make it better. Even better and more effective, if you can, visit your elected officials at all levels of government. And be specific in your ask: ask that respite care be covered, or that caregivers be identified and made an explicit part of the patient’s plan before hospital or nursing home discharge.
  4. If you are a staff member or leader, take notice of problems, realize that they are likely not one-offs, and correct them. Instead of trying to make things right by smoothing them over and patching it together, complain. Identify root causes. Propose solutions. If you are a patient or family member, ind out where and how and when to file a complaint. The process can be time-consuming and daunting, but it is often worth the effort. And although it may not spare your loved one further suffering, it can help prevent it for others in the future.

If you take any of these steps, please be sure to let us know. We’d like to hear more from others about what they are experiencing—and even more, what they are doing to improve the situation.

key words: MediCaring book, Joanne Lynn, Janice Lynch Schuster, Charles Duhigg, social change, grassroots, Marshall Ganz

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