Reflections – August 2020

Sunflower from a Squirrel-planted seed

I’m scared

sometimes

of living in an

aging body that seems

unpredictably more fragile

when just one wrong move

cracks my back and sends me

to bed in agonizing pain for a week

It’s not the thought of dying that I fear

I’m terrified by the possibility of having to rely on others

for kind, compassionate care if I am not able to take care of myself

***

My thoughts today reminded me of a song by Laura Nyro, “and when I die.”

I also remembered the things I witnessed when I worked as a nurses’ aide in nursing homes and a university hospital, as an attendant in the infirmary of a state school for people with mental retardation, and as a home health care aide for people who were recovering from major illnesses or dying. I have written about some of those experiences in previous posts (Mickey, Clara, Rita, and Donald), including the motivation they provided for me to complete degrees that would enable me to try to humanize long-term care systems at a policy level.

My mother meeting her great grandson – March, 1999

I learned enough to be able to try to create more humane care for my mother for the last 16 years of her life, although it required tenacity, vigilance, and creativity. I don’t know if she was aware of her losses or where she was because of Alzheimer’s Disease. It’s not something I wish for my daughter to shoulder.

My mother, daughter, and grandson – March 1999

I don’t know what the future will bring, but I do know that I need to make major changes in where and how I live. Things that were easy for me to do, or at least manageable just a short while ago like landscaping and shoveling heavy snow, could mean serious injury and permanent disability the next time I don’t move just the right way.

That’s just how life is. Things change and old bodies wear out one way or another. So many others in the world right now are suffering far greater challenges and losses. I am grateful for the many blessings in my life and feel no need to mourn what was. I have courses to prepare for the fall semester that will be beginning in early September, a family to care for as long as I’m here, and dear blogging friends who hopefully know how much I care even though my presence on WordPress has been so infrequent this summer.

Sending my best wishes to all.

In Honor of Caregivers

Carol A. Hand

As many of you may guess, teaching often means I have much less time to spend on writing posts and visiting your lovely sites. I spent the past few days trying to catch up with visits and replies to comments. Now, I face the daunting task of updating syllabi and building the online components for two classes that begin in less than two weeks. In the interim, I have decided to share some older posts that few people have seen. I will do my best to visit and reply, but I can’t make any promises. I do want you all to know how much I value your work and your presence in my life.

Here is the first installment. It was the first post I wrote for this blog when it was created in February of 2014.

***

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?”

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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.

tools of the trade caren caraway

Artwork by Caren Caraway for Workshop Series: 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.

***

Work Cited:

Carol Hand (1991). Workshop Series: tools of the trade for men who care. Madison, WI: New Ventures of Wisconsin.

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

*

Post Script: I would like to thank Decker at Dispatches from the Asylum for another one of his powerful and lovely short stories. His work reminded me of this old post and inspired me to share it again.

Post-Post Script: I did finally clean up my files on rainy days this summer and managed to reduce the number of file cabinets, although it it still a work in progress…

*

Stewardship Anyway

Carol A. Hand

Ageist messages that I’m too old
at 70 to do simple chores
sometimes makes me hesitant to try
But my courageous daughter inspires me
and a funny thing happens when I do try
anyway

 

A Mini-maple gutter garden – July 2017

 

I realize with the right tools
like my “new” $20 8-foot ladder
from Habitat for Humanity’s “Restore”
I can clear the gutters of
sprouting baby maple trees
anyway

 

 

With my little green garden wagon,
work boots and heavy-duty gloves
I’m not too frail to haul and carry
landscaping blocks to upgrade gardens
and prevent continuing erosion
anyway

 

July 30, 2017

 

I’m not ashamed to sweat buckets
in my raggedy work clothes
doing honest manual labor
It’s a gift and a privilege
to take care of what I can
anyway

 

July 30, 2017

 

Privilege requires responsible stewardship
regardless of what others do and think
with simple tools to extend our reach
and help us carry heavy loads
‘though the efforts are always a work in progress
it’s important to keep shouldering what we can
anyway

 

July 30, 2017

***

Reflections – Tuesday, October 11, 2016: New Discovery of Historical Places

Carol A. Hand

Recently, I looked through the pictures that I have taken since I moved here five years ago. Most are photos of my gardens and house. Some are of my neighborhood, and only very few are shots of downtown or the surrounding area. It’s true that I don’t often think of taking my camera with me, but I have often wished that I had. This morning I took it along as I headed out early for a dental appointment to deal with a painful tooth. The office of the specialist I was referred to by my dentist was in a part of town I hadn’t visited before.

toothache-2

Image: Microsoft WORD Clip Art (modified)

You’d never know from looking at my crooked funny-colored teeth that I have taken care of what I was given and spent a lot of money just to keep them. (Finding good dentists when you move a lot is not an easy task.) The good news this morning? The painful tooth appears to be fine even though it’s still making it’s presence known by gently throbbing at the moment. The bad news, another one needs expensive work – one third of my annual income.

Yes, I have Medicare, but dental work is not something that’s covered by Medicare. (See Endnotes below for more information.) I could buy dental insurance, but it’s been my experience that insurance companies always manage to make a profit on what they charge those who buy their products and produce nothing of value in return, unless you find it somehow amusing when your requests for coverage of necessary services are denied.

But I don’t need to make the decision of what to do about this new dental problem for a few weeks. It’s a hard decision in large part because I can’t easily reconcile the privilege of being able to even contemplate fixing a tooth while so many people in the world are suffering for lack of food, water, shelter, clothing, safety.

But you know what they say. Simple minds are easily amused. As I walked out of the building after my appointment, my attention was captivated by the building that took up the whole block across the street. And for a few minutes before I headed home, I was lost in the delight of taking photos. The images aren’t anything special, but I’m sharing them anyway. They inspired me to learn a little more about architecture and the history of some of the buildings here.

Focusing on the wonder and beauty of the moment takes my thoughts away from pain. Sometimes, when my thoughts once again return to my physical being , I realize that my brief journey into a different state of mind has even made pain seem less intense. This morning, it lifted my spirit to see something I might not have noticed otherwise and gave me an opportunity to learn something new.

chester-terrace-1

chester-terrace-2

chester-terrace-3

chester-terrace-4

I learned that this building, Chester Terrace, is listed on the National Register of Historic Places.

“Historic brick and brownstone Chester Terrace takes up an entire block on E. First Street in downtown Duluth. Built in 1890, the Richardsonian Romanesque row house apartments were designed by architects Oliver Trephagen and Francis Fitzpatrick. Special features include towers, turrets, finials, and gables. It received its name from neighboring Chester Creek which flows into Lake Superior. The building is still being rented out as apartments and was put on the National Register of Historic Places in 1980.” (Source: waymarking.com)

Endnotes:

Wikipedia provides a clear and helpful overview of Medicare, a complex policy:

“In the United States, Medicare is a national social insurance program, administered by the US federal government since 1966, currently using about 30-50 private insurance companies across the United States under contract for administration. United States Medicare is funded by a Payroll Tax, premiums and surtaxes from beneficiaries, and general revenue. It provides health insurance for Americans aged 65 and older who have worked and paid into the system through the payroll tax. It also provides health insurance to younger people with some disabilities status as determined by the Social Security Administration, as well as younger people with end stage renal disease and amyotrophic lateral sclerosis.

“In 2015, Medicare provided health insurance for over 55 million—46 million people age 65 and older and nine million younger people. On average, Medicare covers about half of the health care charges for those enrolled. The enrollees must then cover their remaining costs either with supplemental insurance, separate insurance, or out-of-pocket. Out-of-pocket costs can vary depending on the amount of health care a Medicare enrollee needs. They might include the costs of uncovered services—such as for long-term, dental, hearing, and vision care—and supplemental insurance premiums.” (Source: Wikipedia)

***

Reflections – Tuesday, August 23, 2016

Carol A. Hand

Ah, summer outdoor chores, you have to love them
Mowing the lawn that remains, “Sweating to the Oldies” comes to mind
This is really more like the oldy profusely sweating
But it’s something I can still do because life’s been kind
One has to find the humor in getting older
And be grateful for the challenging tasks we can still shoulder.

lawn mower

My old rechargeable battery-powered mower

I encourage you to watch the embedded video link above if you need to laugh today, or read the following poem. I discovered it many decades ago when I developed a workshop for men who were caring for an older relative.

This Will Shock You!
(Anonymous)

This will shock you!
I’m never lonely here – for I have four men in my life.
Don’t tell!
I get up in the morning with Charlie Horse.
I spend all day with Arthur Itis.
I dine with Will Power.
I go to bed every night with Ben Gay.

Everything is farther away now than it used to be.
It is twice as far to the corner, and they have added a hill I’ve noticed.
I have given up running for the bus; it leaves faster than it used to.
And it seems to me that they are making stairs steeper than in the old days.
Have you noticed the smaller print they are using in the newspapers now?
And there is no sense asking people to read aloud.
Everyone speaks in such a low voice I can hardly hear them.

It is almost impossible to reach my shoelaces.
Even people are changing.
They are much younger than they used to be when I was their age.
On the other hand, people my age are so much older than I am.
I ran into a classmate the other day, and she had aged so much I didn’t even recognize her.

I got to thinking about the poor thing while I was combing my hair this morning
And in so doing I glanced at my reflection in the mirror.
You know, they don’t even make mirrors like they used to.

***

It Just Doesn’t Make Sense

Carol A. Hand

You may call me an idealist
You may see me as a fool
But I’ll just never understand
Why some folks seem to need to be cruel

“We’re just following orders”
You often hear them say
Or “it’s not in my job description”
So just get out of my way

“Everybody’s doing it”
“We’ve always done it this way”
So many lame excuses
For making some else’s life difficult today

What would Krishnamurti say?

Dancer (2)

Drawing: Carol A. Hand

“… Society is always trying to control, to shape, to mould the thinking of the young. From the moment you are born and begin to receive impressions, your father and mother are constantly telling you what to do and what not to do, what to believe and what not to believe; you are told that there is God, or that there is no God but the State and that some dictator is its prophet. From childhood these things are poured into you, which means your mind – which is very young, impressionable, inquisitive, curious to know, wanting to find out – is gradually being encased, conditioned, shaped so that you will fit into the pattern of a particular society and not be a revolutionary. Since the habit of patterned thinking has already been established in you, even if you do “revolt” it is within the pattern. It is like prisoners revolting in order to have better food, more conveniences – but always within the prison….

“You see, all reformers – it does not matter who they are – are merely concerned with bettering the conditions within the prison. They never tell you not to conform, they never say, “Break through the walls of tradition and authority, shake off the conditioning that holds the mind.” And that is real education: not merely to require you to pass examinations for which you have crammed up, or write out something you have learnt by heart, but to help you see the walls of this prison in which the mind is held….

“Freedom lies outside the walls, outside the pattern of society; but to be free of the pattern you have to understand the whole content of it, which is to understand your mind. It is the mind that has created the present civilization, this tradition-bound culture or society and, without understanding your own mind, merely to revolt as a communist, a socialist, this or that, has very little meaning. That is why it is very important to have self-knowledge, to be aware of all your activities, your thoughts and feelings; and this is education, is it not? Because when you are fully aware of yourself your mind becomes sensitive, very alert.” (Krishnamurti, 1964, pp. 84-85)

These are just some reflections about people who appear to enjoy enforcing arbitrary socially-constructed policies that make others’ lives less pleasant, or even place them in harm’s way. This post was inspired by a visit to a friend in the elders’ apartment building across the street. During our visit, she shared an important concern. The management is unwilling to address elevator doors that don’t stay open long enough for elders with walkers or canes to enter and exit safely. Instead, they issued the following new policy:

PN

No matter how many times elders press the button for a new elevator, the doors will still make exit and entry unsafe!

How do we escape the “walls of programming” that imprison us all?

Work Cited:

Krishnamurti (1964). Think on these things. New York, NY: Harper Perennial.

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.

Reflections for a Friend

Carol A. Hand

I was saddened to hear you’ve begun a new journey, dear friend
To a distant place that, although common, still has a mysterious end
As I watched you struggle to find words, it was my heart that cried
Yet with your usual grace, you simply replied
You’re not worried about losing memories that are sometimes hard to bear
Of hardships and the most painful losses in a life that often didn’t seem fair

I will remember you as I first met you, your radiant smile and sparkling eyes
Scrambling over obstacles with your cane under sunny summer skies
I’ll remember how much you taught me about gardening and life
When we shared “tea for three,” laughing ‘til tears flowed despite stories of strife
I’ve always found your uncensored honesty an absolute delight
Even though you always felt you were intolerant, somehow just not right

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Photo: Butterfly Garden Mystery Plant (Lychnis Chalcedonica)

As you begin the journey of Alzheimer’s dear friend, this is all that I can say
I’ll remind you, if I can, of the kindness, joy, and laughter you always brought my way.

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.

I Write Because? – Writing 101

Carol A. Hand

Yesterday, before I read the prompt for today’s Writing 101 assignment, I addressed this question. I wanted to reflect before the class began.

“As I look at the larger patterns in my life, I realize that it’s important for me to share knowledge from the heart as well as from the intellect in words that are clear and simple. Lately, I’ve given some thought to the question “why do I write?” I write to share the simple things I’ve learned in hopes that it will help others. I follow my mother’s footsteps, not as a healer of bodies (I grow faint at the sight of blood), but as someone who sees the beauty in others even in times of adversity. I hope to be a mirror that reflects back the beauty I see in others so they can see it in themselves.” (Carol A. Hand)

As soon as I hit publish, I realized this was only part of the truth. What are the other reasons I write? When I asked myself that question this morning, an image and a memory of Mickey flashed through my thoughts. I was one of the strangers responsible for his care, a fifty year old man lying in a nursing home bed, forgotten, unable to care for himself, dependent on the kindness of strangers who weren’t always kind.

I only know bits and pieces of Mickey’s story and the accident that brought him to the nursing home many years before I took this job. He broke his neck when he fell down the steps one night while he was doing his job as a janitor. The accident left him paralyzed, paraplegic, unable to do the simplest self-care tasks. He needed to rely on overworked, underpaid nurses and nurses’ aides to do everything for him. Many didn’t have the time, patience, or inclination to realize there was a sensitive, alert human being inside his motionless body.

I had the luxury of listening to him because I worked the graveyard shift. (A fitting title for the night shift in this facility, although it’s hardly respectful of the people whose care and safety depended on our presence and compassion.) It was difficult for Mickey to speak as he struggled to make his jaw and tongue move. His softly spoken words were almost impossible to decipher at first. It took me time to learn the meanings behind this new language. One memorable story often comes to mind. Mickey told me in his halting, painful-to-witness way, that the nurses’ aides seldom talked to him or asked him if he needed anything. There were a few who were kind and treated him like a human being. But one in particular, according to Mickey, was incredibly rude. When it was time to get residents ready for bed, she would come in with a washcloth and rub it over his face without removing his eyeglasses first. In fact, she just left his smeared eyeglasses on, shutting off the light as she left him alone in his the room for the night. He lay there unable to do anything about it until I arrived for my shift.

I write because people like Mickey can’t. Someone needs to write their stories. I write because women with small children and bills to pay have to work at low paying jobs at times of the day or night that allow them to attend to their children’s needs during waking hours. They didn’t and don’t have access to affordable, reliable, high quality daycare and may be locked into pick collar, low-wage jobs for many years. They need to work at whatever jobs they can find in a society that does little to ensure that families have adequate safety net benefits. The long-term care industry (or childcare industry) is staffed by a steady stream of low-income women – mothers with young children or elders who can’t afford to retire. It’s an industry that is built on the backs of poor women often with few other options. (I mean that quite literally – lifting people like Mickey is heavy, back-straining work.) Their stories need to be included in national conversations about the need to pay workers living wages.

AW nursing home

Photo: Nursing Home Resident – Aging Wisconsin (full citation listed below)

Warehousing those who need assistance in institutions like the one Mickey lived in, or worse, is what we’ve been conditioned to see as the best or only option for people who need 24-hour care and assistance. Yet studies show nursing homes are not always the best option. It’s important to realize that one accident could place any one of us in a situation like Mickey’s – or worse. Is that what we want for ourselves, our parents, our children?

I write because these are important issues to consider. The legislators and experts who decide what types of services to provide as a nation rarely if ever ask those who are most affected by their decisions what they (elders, parents, workers) need and prefer. These are the people on the margins, like me, who need to have a voice in designing a nation and a world that care more about people.

“The moral test of a government is how it treats those who are at the dawn of life, the children; those who are in the twilight of life, the aged; and those who are in the shadow of life, the sick, the needy, and the handicapped.” (Hubert H. Humphrey, 1976)

While I doubt that my modest stories will have much of an impact, it’s what I can do today to try. It’s what I can do to honor Mickey’s memory and the many women (and men) who help people in the situations Humphrey describes with such poetic eloquence. Words can bring hope and healing to a troubled world. Writing with this purpose in mind is something I love to do. Ultimately, it’s why I write.

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.

Contextual Note:

This essay was inspired by the new course I began today, Writing 101. My intention for taking the course is described below.

“I’m looking forward to meeting all of you and learning more about your blogs. I’m also looking forward to the discipline and challenge of writing every day. It’s my hope to use this class to help me work on a new approach for a book that I originally thought would be non-fiction based on a research study I did a number of years ago. Instead, after experiencing the freedom of writing a play that required creativity and freed me from the constraints of objective reporting, I decided to explore fiction as an option. Fictionalized accounts would also be a better way to protect individual and place identities. So, I see this course as a challenging and exciting opportunity to experiment with new ways of writing.
I send my best wishes to all!”

Despite my desire to learn to write fiction, the prompt for today inspired a different direction. But then, it’s Labor Day. And unbidden and unplanned, the memory that came to mind allowed me to honor the many women I’ve worked with who do the heavy-lifting in the profitable long-term care industry, although they see little of the industry’s financial rewards.

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.

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.

childs pose

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.

AW adult daycare

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.)

************

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.

dancer

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.

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.

antique rocking chair

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.

tools of the trade caren caraway

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. neighborhood apartment bldg

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. bird-feather-13486506267nW

Photo Credit: Public Domain Pictures

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

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.

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