A Chance Encounter?

Carol A. Hand

Looking back, I wonder if our meeting was really a chance encounter. Who would believe that an hour or so with a stranger could open up compelling possibilities for an unimagined future? Even though it’s hard to remember who I thought I’d become “when I really grew up,” I can hear it in the old cassette recording. Timid, resigned to live in obscurity, and self-effacing. Some days, I’m like that again. And on those days, I feel like a battle-wearied soul in a world gone mad. On those days, I’m convinced there’s absolutely nothing I can do to make a difference. Yet I also hear the soft lovely voice reflecting warmth and kindness on the cassette, carefully modulated but honest thoughtful responses, and the lilting infectious laughter that has sometimes filled airplanes or restaurants with joy. There are days when I feel that, too. I have had the courage to face challenges and conflicts head on with nothing more than the belief that things could change if I did my homework and remained mindful and fully present no matter what I encountered. And sometimes, situations were transformed, and sometimes not. But either way, there was deep satisfaction in knowing that I did what I felt needed to be done to raise awareness about liberatory alternatives and possibilities.

It was the winter of 1977. At the time, I was living in Venice, California, an escapee from a commune that had nearly shattered my belief in people and possibilities. Escape meant starting over from scratch with a six-year old daughter and a partner who couldn’t let go of the past. It meant living in one tiny room in an old hotel near the beach, a disgustingly filthy shared bathroom on the first floor, and cockroaches falling through the ceiling from the room above ours. It meant working as a waitress on the night shift and walking my daughter to and from school in a dangerous neighborhood.

Drawing: Carol A. Hand

I don’t remember why I decided to see an astrologer, or how I found this particular one, but our one and only meeting proved to be powerfully transformative. I wish I could thank her and let her know how important our conversation turned out to be, but all I have left after so many years and so many moves is a cassette tape-recording without her name.

Why listen to this old tape now? Perhaps it’s because my battle scars are healing, similar to the ones I carried so many years ago when we met. But I really think it’s because I no longer want to feel like I’m sitting on the sidelines in a crazy world that is threatening the well-being of everyone I love. So I pulled out the old tape and typed out the dialogue to see if I could discover just what inspired me to go back to school and finish my degrees four years after the 1977 chance encounter. The message from the astrologer gave me courage to begin to discover the strengths she highlighted.

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Memories from 1983

What can you do when you’re caught in the middle of a dispute about who has access to your volunteer efforts? I remember my first practicum placement as a social work student. One of my tasks was to help organize a new statewide organization for the providers of a relatively new service in Wisconsin, “adult daycare.” At the time, there were several models for providing services for adults who needed somewhere to go during the day because of physical or cognitive conditions that made self-care too difficult. The social model merely provided a place to socialize, meals, activities, and staff to ensure safety. The health maintenance model provided additional services to help with medication and treatment. The third model focused on a blend of social and health maintenance. Obviously, health maintenance models required more professional nursing staff and hence, were more expensive.

On the second day of my practicum placement, I met with the professional staff from the two agencies that were interested in forming a statewide association for adult daycare providers. As they began arguing which agency should host my work, it was clear that this would not be an easy year. They had different ideas about the model that should be the focus of the organization. As the argument grew more heated and appeared to be leading to a final dissolution of any further collaboration, I interrupted to remind them that I was a resource. If they really wanted to create an organization, they would need to agree to work together. It didn’t really matter to me which agency housed my placement, but it did matter that they were both willing to work with me toward a shared goal. They calmed down as we outlined a simple plan for beginning the daunting task ahead.

I discovered that the conflict between the two professionals was mild compared to the dissent among providers across the state. Filling out the necessary nonprofit incorporation papers was easy. Getting people to agree on the purpose and structure of the organization took far more thought and effort. And a funny thing happened. I was tired of the futility of writing papers for classes that never resulted in real world benefits. Because I was also taking a class in interpersonal skills that required being videotaped, I got to know the social work department’s videographer, Dennis. (In these days of austerity, it’s hard to believe that there were ever such positions in the old days!)

I asked Dennis if he ever got to do educational videos. When he said not recently, but he would like to, I asked if he would like to travel through the state with me to interview people and film different adult daycare centers. Of course, I had to get clearance from faculty and administrators, but we found ourselves on the road, often loading his video equipment into my little Honda. We mostly focused on the southeastern part of the state because, like many other resources, centers were located in the most populated areas.

My two field supervisors were supportive and both agreed to be interviewed. One provided an overview of adult daycare. The other showcased her socialization model and explained why she felt it was the most appropriate, cost effective approach. We filmed the two other models and interviewed the directors, and then began the editing process. I wondered why I ever thought this would be easier than a paper! Before we edited our videos, I had to write the script and figure out how to sequence select material from hours and hours of tapes! Yet script in hand, Dennis helped me find a student in the theater department to read the script on audiotape. Then we began the tedious job of arranging clips. When we were finally done, I realized that it took at least one hour to edit each minute of our 33-minute final tape.

Photo Credit: Aging Wisconsin – 1987

The agency that had finally housed my placement hosted a premiere of the final product: Daycare: Censored for Adults Only! A fascinating and unanticipated thing happened during the well-attended premiere. But first, I want to digress. I saw myself on video for the first time in the interpersonal skills class that Dennis taped. I remember my first reaction. I had never realized that my nose was so pronounced – a sharp beak that reminded me of Cyrano de Bergerac. When I walked up the stairs after seeing the video, I remember being surprised that my nose wasn’t bumping into the walls three feet away. It was truly humbling and left me with this odd ability to see myself from another vantage point whenever I was speaking in public.

I witnessed the same humbling experience among the daycare directors who saw themselves on tape during the premiere. Maybe it wasn’t their first time, but I know they were so shocked that they actually listened to what their peers had to say. Afterwards, they came together humbly to discuss the benefits of each of the models and were energized to support an organization that would include all of the various models.

Now I have to admit that the video is embarrassingly amateurish and endearingly silly, but it did work to bring people together. By the time my internship was done, the incorporation papers were submitted and approved and the new provider organization was ready for another intern to staff it as an organizer and grant-writer to take it to the next level. (And in case you’re wondering, I passed my practicum and classes but Denis and I weren’t nominated for an Academy Award.) Unfortunately, my only copy of the video was lost sometime in the past during one of my many moves, and the one listed in Worldcat disappeared from the library years ago as well. The video did feature a gifted jazz pianist, a van driver, who played for us during our visit to one of the sites. (In the process of hunting for a copy of the tape, I reconnected with old friends and also learned that the organization still exists.)

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I sincerely doubt that I would have discovered these abilities had it not been for my chance encounter with an astrologer. I was so timid and battle weary. She also taught me an even more important lesson by the way she treated me during one of my most vulnerable times. We can use our different kinds of knowledge, our different kinds of skills to either liberate or oppress others. It’s a choice we have every moment. It really never mattered to me whether I believed in astrology or not. What made a difference in my life at that time and for decades to come was someone who used the tools she had with kindness and compassion in order to help someone in need. It’s something I have tried to do consistently in my own life and work through the years. It’s something I know I need to continue to do with renewed intensity during these crazy times.

Drawing: Carol A. Hand

Copyright Notice: © Carol A. Hand and carolahand, 2013-2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Carol A. Hand and carolahand with appropriate and specific direction to the original content.

March 22, 2015

Kindness Matters

Carol A. Hand

“Honour the Aged; in honouring them you honour life and wisdom” (Basil Johnston, 1976, p. 93)

I remember Clara. I was just a young teenager when we first met. At the time, I lived with my family on the upper floor of a three-story brick building, once a fancy upscale home in a small county seat in northwestern Pennsylvania. By the time my family moved there, it had been turned into a nursing home with 20 elders who needed varying degrees of 24 hour care. My mother purchased the business and assumed the role of administrator. (Thanks to the generosity of a wealthy resort owner on the Ojibwe reservation where my mother was born and raised, my mother was able to attend Loyola University and received her degree as a registered nurse.) I was twelve when we moved and not happy about leaving all of my friends in a more cosmopolitan setting with a far better educational system.

Spending time with elders was far more enjoyable than handing out with my new peers, so my mother gave me a “volunteer” job as a nurses’ aide. Clara arrived a short time later. She was a tall, thin, lovely woman with wavy silver hair. I can still remember her sitting in the rocking chair in the corner room that she shared with two other elders on the second floor, right below our upstairs apartment. Neither of her roommates was mobile or able to speak. Clara could speak, but she seemed to prefer to scream instead, nonstop, unless someone with a calming presence was with her. She taught me how to be that presence, how to use body language, facial expressions, and my voice to help her feel more at peace.

I don’t know much about her life before she moved to the nursing home. I was told that she had once been a gifted and beloved teacher. One winter day, she slipped on an icy sidewalk and the head injury she sustained left her as she was when we met, unable to care for herself or communicate with others. Although she couldn’t pay the full cost of her care, and Medicaid and Medicare didn’t yet exist, my mother agreed to give her a room at whatever price she could afford. There were no other humane options for someone with her level of needs.

Photo Credit: Antique Rocking Chair

As two outcasts, we found a sense of peace and belonging in each other’s company. The first thing I did when I got home from school many days was to stop by to visit Clara. When I appeared in her doorway, she would often be seated in her rocker, screaming. She would stop screaming as I said hello. Then she would smile and reach out her arms to welcome me. The worries and insults of my day would vanish as we sat together and I told her stories in my gentle lilting musical voice. She helped me discover that voice, that compassion, and that depth. It was her kind and accepting presence that helped me survive tumultuous teenage years. My grandmother’s often repeated messages that I was ugly, my father’s escalating physical and emotional abuse, my homogenous peers with whom I had little in common added to the angst of transformative years.

Spending time with Clara became my sanctuary. I was powerless to prevent her worsening physical health, and finally, my mother was forced to send her to a facility that could provide the level of care Clara needed. I realize now that don’t know how she fared in her new home, or if she lived long after her move. I do know her absence left me adrift for a while.

I hope she was treated with kindness and respect in her last moments. Yet, I have witnessed too many institutions where people have not been treated with kindness. It’s odd to realize how powerful the underlying belief has continued to be in the dominant Euro-American culture that people are only worthy of respect if they contribute something that is viewed as worthwhile from a narrow economic perspective. Self-reliance and the Protestant work ethic…

Many years after my peaceful days with Clara, I returned to the university to finish a social work degree that I hoped would enable me to develop state policies in partnership with elders – policies that were founded on the recognition of their dignity. Of course I encountered faculty examples of what I didn’t want to become when I grew up. “Older people are like children,” said one faculty member interrupting my class presentation. “I don’t know why you want to study elder abuse policy in this class. Older people are so useless and troublesome to deal with. Their abuse is understandable,” said another, interrupting yet another presentation. But I was fortunate to have other faculty who taught me important lessons about the plasticity of brain development and adaption, the wisdom factor, and ecosystems theory. I learned that we’re never too old to keep learning and contributing. And the challenges that make living independently difficult come largely from our socially constructed environment and institutions. When an elder who has lived in a two-story house for decades develops arthritis in her knees and can no longer climb stairs, her ability to live independently is threatened because of how we build houses, cabinets, and bathrooms. It’s because of where we locate stores and service agencies, how we provide (or fail to provide) affordable transportation, the proximity to family and informal support, and the income people have once they retire.

Photo Credit: Tools of the Trade (by Artist Caren Caraway)

Instead of building housing and communities that support aging in place, we force people to move to “handicapped accessible buildings,” often huge institutional looking structures. In smaller communities, homes like the one I spent my teenage years in are retrofitted as housing for older people. When I worked as the state aging network supervisor, one of the areas I focused on was housing. I took the time to travel the state with the state staff who licensed facilities that received state funding – “the good, the bad, and the ugly,” as the inspectors dubbed the wide variety of facilities we visited. I also had the opportunity to be part of a team of ten state professionals in a week-long program that applied a 50-category assessment tool to evaluate the degree to which social service agencies, like residential facilities for elders, were founded on the recognition of dignity. Imagine your first impression when the administrator of the participating facility greeted the team with the following introduction. “Let’s meet in the dining room for our orientation.” We all followed her lead. “The table is round, you see. Old people like to sit in circles. You know, the people here are all waiting to die. We do our best to keep them comfortable in the meantime.” Sometimes, I have the wisdom to be patient. I merely listened and observed. I knew there would be time to meet with the elders who lived there later, and time to talk privately with the rest of the team.

The experience turned out to be valuable, but heartbreaking. Elders from 60 to 95 were categorized as “waiting to die” – waiting with untreated injuries, hearing loss, and serious depression, sitting alone in their rooms. They clutched at my hands begging me to stay after we spoke, even though the rest of the team was waiting somewhat impatiently. The experience actually taught me about the many ways we fail to acknowledge dignity. I remember the many facilities I visited with names like “Shady Acres,” the long drive to the outskirts of town with a road sign signaling what we would find, DEAD END. As we entered facilities, we sometimes found elders who appeared to be overly medicated parked on couches and wheelchairs facing the blaring TV.

Photo Credit: Elder’s Building – Spring 2012

How I wish I could say that things have improved over the years since those days. I’m sad to say they have not. In my visits to friends in the apartment complex across the street, I am reminded of the many ways elders may be safely housed without being accorded respect or opportunities to share their wisdom of develop new skills. I voiced some of my observations in recent comments to an earlier post.

To Rowena at Beyond the Flow, I replied – Recently, I have been observing the many ways in which everyday actions that are based on lack of compassion affect people’s lives. Actions that may appear insignificant on the surface have profound consequences for the quality of life of many people through ripple effects. The elders’ apartment complex across the street is an example. Elders who love to garden are denied access to garden plots because those in charge of maintenance prefer easy-to-mow lawns. Denying this simple request has profound consequences on the health and well-being of residents on many levels. Many residents have accepted this limitation after voicing their desires repeatedly and simply adjusted their lives to give up something they love, something that feeds their spirits and brings beauty into the world. They could join together and become “guerilla gardeners.” I would welcome the chance to help them dig up the lawn at night and help them build gardens that are high enough to accommodate varying degrees of limited mobility. But that is their decision…

To Debra at My Land Restoration Project, my reply was – It’s so easy to cultivate fear and shame, to destroy confidence and hope, and so challenging to rekindle a sense of real possibilities. In fact, it’s how I met my neighbors across the street. When I moved to this neighborhood a little over three years ago, the yard was filled with piles of tree limbs and brush. I began the long process of bringing in soil and compost, and building gardens. It was difficult manual labor and I wondered if it made any difference at all to anyone else. Then, this past year, two of the women who live in the elder’s high rise stopped to talk when I was working in the front yard. Now we meet for monthly tea and share stories. Neither one is able to have one of the coveted garden plots in the small space allotted for residents, so they come and sit with me sometimes when I’m working, sharing stories about the gardens they’ve had and advising me on what to plant. One is eagerly waiting for the tulips and daffodils I planted this fall as she watched. (The garden is too low for someone who needs a cane to walk because of knee problems.) It’s a small thing, but it gives me hope and allows my neighbors to spend time in a place they see as a sanctuary. But ever a rebel who automatically wants to challenge oppression, I hope they choose to organize creative resistance and create a midnight garden by digging up the lawn. I can bring my shovel and do the heavy work to help…

My neighbors have raised children, survived abuse and many losses, and they’ve become adeptly ingenious at living on less than poverty incomes. I have learned so much from them and eagerly anticipate our monthly “Tea for Three” discussions. I wish more residents would join us, but my life is blessed by the presence of these two lovely women. I wish the administrators of the facility where they live would treat my friends and all of the residents with the respect they deserve – the “dignity of risk” and the “right to folly” – “respecting each individual’s autonomy and self-determination (or “dignity”) to make choices for himself or herself.” It was something my mother made possible for Clara as long as possible.

Chi miigwetch, dear Clara, for teaching me some of the most valuable lessons I learned in my life – the gifts of kindness and compassion.

Photo Credit: Public Domain Pictures

Work Cited: Basil Johnston (1976) Ojibway Heritage. Lincoln, NE: University of Nebraska Press.

January 25, 2015

Miracles Won’t Happen If We’re Afraid to Take Risks

Carol A. Hand

When I wrote A Birthday Wish about my hopes for the future, I seriously questioned whether sending the list to my Congressional Representative would even matter. I hesitated to send it, and I questioned whether it was worth posting on my blog. The list I wrote was simple, hardly something that would ever be seen as a cogent political analysis, a meritorious literary contribution, or even a realistic possibility. I suspected I might even be easily dismissed as a “wingnut” or flakey romantic. Then, it occurred to me that people need to have the courage to share what’s in their hearts even if others judge them as ridiculous. I was motivated to write because of my concern for my grandchildren’s future. It was my grandson’s sixteenth birthday and I was inspired to reflect about the world I wish for him and all of the children of the future. But I remembered something Albert Einstein wrote and decided to send the email and post my reflection.

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” (Albert Einstein)

Photo Credit: Dandelion Resilience

This morning I found myself wondering what would happen if every one of us sent a letter or email to our congressman or senators listing our hopes for the future. What if we sent one every week? After all, my email account is bombarded daily by scores of fear-based messages listing all of the threats we face – threats to animals, the environment, and people. I care about all of these issues, but they’re all connected. Sometimes I sign the petitions (although I can’t afford to make the requested donations), but I doubt that petitions will have much impact. None of the petitions really address root causes, and all are focused narrowly on addressing a part of one issue for one species or group. And all are really focused on problems, with quick-fix solutions that are firmly nested within prevailing solutions’ paradigms. Why not turn it around and connect the dots – identify the underlying causes and address those as a set of positive goals that describe the best we can imagine?

What is the best I can imagine? It’s a question I learned to ask in the first job I had after I finished my master’s degree. As Aging Network Supervisor for the Bureau on Aging, Wisconsin Department of Health and Social Services (DHSS)*, my job, with assistance from the five professionals I “supervised,” included developing the details of state policies for aging programs delivered by an array of regional, county and tribal agencies. (Really, any influence I had over what Network staff did was hard won by earning their respect, but that’s another story.)

The first six months of my job mostly consisted of responding to mischief fomented by the directors of the two most conservative regions farthest away from the State Capitol where I worked. Ed and Jerry (not their real names) sent an unceasing number of letters to the Secretary of DHSS and the Governor alleging that the Bureau on Aging had violated fiscal and administrative policies. Although I no longer remember the details of their allegations, I do remember that I spent at least 75 percent of my time scouring legislation and administrative codes to write responses to their charges. I vowed to myself that I would find a way to shift the focus so they would be responding to positive initiatives that the Bureau initiated. It took six months to begin turning the tide. I travelled to both regions with Bureau staff and got to know the agency staff, advisory council members and boards of directors, and I listened to the concerns of the older citizens in the region. I also observed the way the two directors omitted key facts and misrepresented the information they shared when they met with the elders on the councils and boards.

Information is power. People are easily manipulated if they don’t have all of the facts. I began to ponder a number of possible strategies. What would happen if state staff were a regular presence at all of their meetings, to listen and share accurate information? Would boards be able to make wiser decisions if they were better informed? And what if we took the time to actually consult with them on crucial decisions that affected the funds they administered and services they provided?

We decided to explore whether increased state staff presence would make a difference. It was certainly easier than continuing to deal with the never-ending irritation of responding to negative non-issues. Staff, including the Bureau Director, became a permanent feature at board meetings for all regions. Relationships and communication improved, as did the quality of policy decisions. The elders on the boards felt their views were important and their thoughtful input helped inform policy decisions. Soon, Ed and Harry were kept busy responding to the agendas proposed by elders on their boards, and the allegations they leveled at “THE STATE” ceased.

The important point is that Ed and Harry did highlight a crucial issue – the Bureau was not doing its job well. We were not making the effort to involve rural elders in the decisions that affected their lives. The elders we ignored didn’t know that they should and could have a voice. The problems Ed and Jerry uncovered helped me identify what we needed to do to include elders who had been ignored. My job, after all, was to serve as an effective and visible advocate in partnership with elders, particularly those in greatest need.

When I was initially hired by DHSS, I commented to my faculty advisor at the time that I was afraid because I really didn’t know anything of value. How could I possibly develop policies and oversee a State network? His response, chuckling, “Don’t worry. You won’t have any power to do anything in a state bureaucracy. They never get anything done.” I was revisited by a similar thought after I wrote the letter to my Congressional Representative. Why bother? Who cares what I have to say? I’m no one special.” Then, I remembered my own experiences. When I worked for state government, it was my job to listen to the people who were directly affected by the policies I helped to develop and implement. It was not my job to serve the power interests of petty bureaucrats like Ed and Jerry who wanted to manipulate others for the own agendas. In essence, at least in theory, it’s much the same job as that of an elected official in a representative republic.

The challenge as I see it how is to let legislators know what constituents really need now and want to see in the future. Legislators don’t have time to understand many issues in depth or look for the root causes, so they rely on their staff, policy think tanks, lobbyists, and opinion polls like the one my representative sent me. They are not likely to read our blogs. But what if we each decided to send at least one letter or email a week that made it easier for legislators to access accurate information about their constituents’ needs and visions, along with thoughtful suggestions for addressing the root causes? Many of us have accepted the fact that those in power won’t listen to anything we have to say, like the elders in the state regions Ed and Jerry oversaw. But what do we lose if we try? If enough of us communicate with our legislators on an ongoing basis, things may begin to change in a positive direction. Who knows, some of our ideas may take root and blossom like seeds of dandelions that come to life in the cracks between slabs of concrete… Miracles may happen if we continue to share alternative views of what could be.

Photo Credit: Two views of power (Bill Moyers (2001). Doing democracy: The MAP Model for organizing social movements. Gabriola Island, BC, Canada: New Society Press.

*Note: The structure, names and functions of state agencies have changed many times since those years.

January 12, 2015

Reflections on the Importance of Knowing One’s Purpose: Blogging 101

Carol A. Hand

“I really HATE that report you’re working on!”

Imagine hearing this this every morning as you walk through the door to do your job. Delivered in a strident nasal tone, this was my supervisor’s greeting and her commentary on my efforts to develop the first-ever report on the demographics and services for elders in the state. Each morning, my response was the same. “I welcome any specific suggestions you have to improve it.” None were ever offered by my supervisor, but fortunately, the director and staff all provided assistance, ideas and support as part of a team effort to write, organize, and illustrate the final product.

Photo Credit: Aging Wisconsin – Cover Page

The report, Aging Wisconsin: The Past Three Years: 1984-1986, was so popular that the first 6,000 copies went quickly. Even during tight budget times, the report went through a second printing and generated hand-written letters from elders thanking us for creating something to make their lives better. My supervisor never liked it, but I now realize she really wasn’t the audience, nor were legislators, administrators, or academics. The report was written to help elders learn about the range of services and supports available to improve their lives. Focusing on task completion is important, yet I also learned an equally important lesson about the value of process from my supervisor, although not the one she probably intended. Any project can be approached from a coercive power-over stance, or from a liberatory joyful stance. The staff and director, often easily divided by petty issues, joined together to produce something that was fun and gave them a sense of purpose and pride in their work.

Photo Credit: Aging Wisconsin – Long Term Support

Photo Credit Aging Wisconsin – Transportation

Photo Credit: Aging Wisconsin – Caregiver Support

Photo Credit: Aging Wisconsin – Home Delivered Meals

Photo Credit: Aging Wisconsin – Housing Options

As I look back on this experience, I realize how grateful I am that I had the opportunity to work on this report shortly after graduating from college. I am grateful to the director who believed that I could do it, and the staff who offered their support, assistance, ideas, and encouragement. I am grateful to the elders who penned hand-written thank you notes. And interestingly, I am grateful to the supervisor who kept spurring me on to do the best I could with what seemed like an overwhelming, impossible task at the time. Today, looking at the photos we gathered for the report so many years ago, I am grateful that I didn’t give up trying.

Photo Credit: Aging Wisconsin – Community Support

I left that job decades ago, but this memory resurfaced this morning as I reflected on today’s blogging 101 assignment, reviewing the About statement for Voices from the Margins. The memory and the assignment both remind me that it’s important to be mindful of purpose. Not everyone will like what you do, and that’s as it should be. Knowing that I was hired to serve elders in the state, not the whims of my supervisor, helped me find creative ways to build a team to be successful any way. Clarifying the purpose of the blog helps keep me focused. I have attempted to explain our blog’s purpose. It’s a space that celebrates diversity and welcomes creative efforts to resist status quo critiques. a place to give voice to different “truths.” Like all bloggers, I hope people will read what I write and engage in dialogue, but I also try to speak about what I see as important during these challenging times.

(A final note: I just couldn’t decide which photos to share so I went a bit overboard I fear 🙂 )

Work Cited:

Carol Hand (1988)(Ed.) Aging Wisconsin: The past three years – 1984-1986 progress report on the Wisconsin State Plan on Aging. Madison, WI: Bureau on Aging, Department of Health and Social Services.

September 22, 2014

In Honor of Caregivers

Carol A. Hand

After my policy class this week, I decided to write about a project I coordinated many years ago to address elder abuse. After reading the first draft, I realized that it was missing important details about the challenges caregivers face. That meant I had to face my dreaded file cabinets!

As a child who loved not only to read, but re-read, it was sometimes excruciating to live in a house that had very few books. Although I discovered the public library, I never wanted to return the books I borrowed, resulting in overdue notices and fines that were so embarrassing. I learned to avoid the library if at all possible. As an adult, I started buying my own books, and as a student and professional, I collected copies of every article I read and every handout I gathered from workshops. The number of bookcases and file cabinets I needed grew each year. My file cabinets have taught me an important fact about myself. I am a piler, not a filer. On the days I am determined to organize papers, I come up with logical ways to sort and label. But when I am working on something and need just the right information, I am never able to remember the logic! If the articles are piled, I have little problem remembering which pile it might be in – because I have had to look through every pile hundreds of times to find things. But once they disappear into closed drawers in neatly labeled file folders, I become paralyzed with indecision. “How did I categorize this article in my all-too-fleeting moment of analytic clarity?”

Photo Credit: The messy process of looking for details

I have learned to avoid my file cabinets as assiduously as I avoid libraries. But I have kept stuffing new things in them – there are now 5 of them with extra file drawers in 2 desks. But I haven’t left them behind as I moved from state to state – I might desperately need something that is in them someday! I really did intend to clean them out before my last move, but I only had 3 weeks to get ready and sorting files was just not a priority.

Adding details meant I needed to face my file cabinets. The only way I could ethically describe details from a project so long ago would be to overcome the resistance I feel when I even walk into the room where they are arranged and overcome the dread of opening the drawers. But I did face the challenge and actually made an important discovery not only about the project details, but also about myself as a much younger program developer and person. Even then I really did “walk the talk” of community-driven program development and egalitarian partnerships. Now I think I can tell the “real” story …

***

Many years ago, I made the decision to leave a well-paying job as a planning and policy analyst for a state government to pursue advanced education and the opportunity to keep learning. In part, my decision was based on the outcome of a recent gubernatorial election. A job that had once made it possible to advocate for improvements for elder services shifted to constant surveillance of every conversation I had with constituents and written justification for every exchange with legislators who requested information. It also shifted from developing innovative new programs to defending programs that were important for elders’ survival and well-being. And in part, the decision was because bureaucracies are stifling places to work even in the best of times. The political appointees who set the agenda for executive branch activities rarely have the power to make many changes that actually improve peoples’ lives within or outside the organization. They can, however, easily make it worse.

To help pay my tuition, I decided to take on a part time job coordinating a federal research and training project to develop and test an intervention to address elder abuse, The Male Caregiver Training Project. The project, conceptualized by a professor and a graduate student, was intended to reduce elder abuse by targeting men who were providing care for older relatives – parents, wives, siblings, or other relations. Although men were less likely to be family caregivers (about 25% of family caregivers at the time), they were more likely to be reported as perpetrators of elder abuse (about 66% of reported perpetrators were men). The assumption of the grant writers was that men who were at risk of abusing elders would voluntarily agree to attend eight, two-hour “training” sessions that were based on behavior modification techniques. The “trainers” would be social work graduate students under the direction of the professor, and the results would be measured to determine the effectiveness using pretest and post-test self-reports. The student who was going to coordinate the project left just as the funding was awarded, so I was asked if I would be willing to coordinate the project.

Of course, I didn’t know all of these details until after I accepted the position and read the grant. As soon as I did, I was amazed that such a proposal had been funded and set out to conceptualize something that might make a difference in the real world. What did I know about being a male caregiver? Really, not much. The only way to learn more was to talk to men who were caring for relatives. I also needed to meet with key staff in the two pilot counties to build trust and partnerships. And the best way to build authentic partnerships was to change who led the sessions. What would university students know about the communities and resources for caregivers? Community staff already had contacts, credibility, and knowledge. Why not involve them not only as leaders of sessions, but also as partners in designing what the intervention would actually involve? And if the intervention was successful, wouldn’t it make more sense for community staff to have a vested interest in seeing the sessions continue after federal grant dollars ended? I called the federal project manager to present my suggestions, and he became excited by the possibilities.

Photo Credit: Artwork by Caren Caraway for Tools of the Trade for Men Who Care

I met with the directors of human services in both counties and found a key staff person in each who agreed to work with me. They helped me find men who were willing to talk with me about their experiences. The men I met with all had so much to teach others about tenacity and compassion. They also had a great deal to teach me about the types of support that would make their lives as caregivers easier.

The stories I heard were a testament to the best people can be. Six of the seven men who agreed to meet with me were, or had been, caregivers for their wives and were themselves in their 70s or 80s. One was a primary caregiver for his father in his 80s who was experiencing mobility and self-care challenges. A few were understandably guarded in their comments, while others saw the interview as an opportunity to share challenges, sorrow, and struggles with anyone who was willing to listen and care. Alzheimer’s and dementia were the reasons men were caring for their wives. They spoke, often tearfully, about the loss not only of someone they loved to a disease that erased memories and made them strangers, but also about the loss of their closest friend and confidant. They saw it as their responsibility to provide care, often at great personal cost as they dealt with their own physical limitations and financial challenges. Most importantly, they all felt alone. There was no one to talk to about the conflicting emotions they faced. There was no one who could share the physical burden of doing all the cooking, cleaning, shopping, and being on call 24 hours a day. They did the best they could as caregivers because they cared, and they did it alone because they didn’t know anyone they could ask for help or information.

So I summarized the findings, and with the help of my partners in each county, held a general planning meeting in each county that involved all of the key agency staff who dealt with elder issues and services. The purpose was to identify a team in each county that was willing to help develop and present the sessions. I spent a sleepless night before the first community meeting. Yes, I had these powerful interview summaries, and based on that, a suggested list of topics. But we couldn’t call this the Male Caregiver Training Project! Training is something that is done to horses, not that I recommend this approach for horses, but it certainly shouldn’t be how we work with people. As I was taking my morning shower before the meeting, I had an epiphany – we should call the sessions Tools of the Trade for Men Who Care. It highlighted the fundamental strength of the men who shared their stories, and reflected the suggestions they had for ways to help.

Staff in both counties identified resources that could serve as tools and resources to help caregivers. We all learned a great deal from the first workshop session in each county. We thought it would be difficult for men to share emotions, so we began with more informational topics. Yet during the first session in the first county, the men who participated shocked us with their willingness to share the depth of their distress – some spoke of contemplating suicide and murder – so we added crises counselors to the workshop teams. After testing and revising the intervention, six more counties tested the approach. More than 60 men participated in all during the project. Ten years after the grant ended, most of the counties were still conducting sessions, not only for men who were caring for relatives, but also for women. It spread to other counties and other states and eventually was nominated for a national award.

What made the experience rewarding for me was not public recognition. It was the opportunity to meet people, caregivers and staff who cared deeply enough about others to make so many personal sacrifices, and the honor of hearing their stories and working side-by-side to create an intervention that succeeded in improving some peoples’ lives. Among those I met was a reporter for a local paper who captured the essence of the challenges of caregivers and the importance of providing resources and opportunities for sharing.

…For better, for worse. For richer, for poorer. In sickness and in health. To love and to cherish, till death us do part.

When Jacob and Martha exchanged wedding vows 45 years ago, he was an Army private and she was a schoolteacher. “She was a lovely little gal,” he said as he pulled out a black and white photograph – now yellowed from age—of their wedding day from a manila envelope. “Wasn’t she something?” he asked, speaking more to himself than to a recent visitor….

Like many couples, Jacob and Martha, not their real names, worked for the day they could retire and spend their days growing old together. Today, they are in their 80s, but their dream of carefree retirement is tarnished. Martha has Alzheimer’s disease…. She is easily confused and requires 24-hour-a-day care. Jacob provided that care. Despite his own failing health, he dresses, bathes and feeds his wife. He cooks, cleans the house, does the laundry and orders groceries to be delivered. He is with his wife all the time, declining offers of respite care because, he says, “it upsets her,” when he is gone. Her illness dominates his life….

Jacob was one of the six men who attended the first [Tools of the Trade] workshop series offered last fall…. “It’s was kind of nice getting out,” Jacob said. “The workshop was a very good thing for me. It helped me realize that I’m not alone. I had a chance to talk with others who are in similar situations.”

(Carla McCann, The Janesville Gazette, Wednesday, April 11, 1990, p. 1C)

***

I didn’t realize until many years later that I would need to know what I learned from caregivers during this project. I remember when my mother first realized something was happening to her. I went to pick her up because she had driven to visit my bother and could not remember how to get home. On the ride home she said, “I don’t know what is happening to me. I can’t remember things. I am so humiliated. I don’t want people to see me this way.” It broke my heart to know that this gentle woman who outlived her husband and survived years of abuse always wishing for a chance to enjoy life would never have that opportunity. At least, I thought, the bad memories will disappear as well.

Dealing with file cabinets has led me down memory lane with memories that are both grateful and sad. I think I will quickly find a place to stuff the project folders back into drawers and wait for the next polar vortex before opening them again. Yet I am grateful that I remembered how many kind and loving people I have met in my travels. I am sharing these memories to say miigwetch (thank you in Ojibwe) to the caregivers of the world and to those who support them.

***

February 12, 2014

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