Welcome to the Club

The Clubhouse

I wake up from pleasant dreams that I can’t remember, but I do know I felt good in them. Slamming awake I realize that it’s still there, the reality of my life. My husband, Jim, has a chronic condition that will require care the rest of his life.  Currently, it’s acute and my days revolve around it. I eat breakfast, not only standing, but taking a bite and then doing something that needs doing before the lymphedema nurse arrives. I haven’t showered, but the dog’s been walked, I’ve tidied, and I’ve thrown a load in the washer. This is the life of a caregiver, disjointed and always on call.

I am not alone in my call to give care, indeed, having joined a club that welcomes all members. Nearly 42 million adults in the US care for elderly parents or friends, with three out of five of these, women. The average age of caregiving recipients is 68.9 while the average age of caregivers is 49. I’m outside the norm on that one. But I’m not outside the norm of a 20 hour work week for caregivers (See https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf.).

I’ve been thrust in the roll of caregiver four times in my life, and each experience was completely different. Context matters, who you are taking care of matters, your life at the time matters, the malady matters, how long the caregiving will go on matters, and your attitude matters. I suspect this is just a minimal list of all the permutations. For now, let me tell you a little about how caregiving has impacted my life. Maybe others will be inclined to share their experiences.

Two thoughts dominate my internal monologue. The first is how long will this last? Will it consume my entire retirement? There’s anger behind this thought, and I don’t like that in myself. But I’m not only angry. My second prevailing thought is compassion. Someone I love is coping with pain and the knowledge that his life will never be the same, that many of his favorite ways of spending time are gone. Probably toughest of all is watching him cope with the knowledge that this recurring illness is a harbinger of the end of life.

My first introduction to caregiving was when my mother, Margaret, was dying of kidney cancer. My two sisters and I agreed to do two-week stints to help her and our stepfather. I went first. It was heart wrenching to see her in pain all the time. Her cancer had spread to her bones, and she lay, mostly moaning in pain. A strong painkiller patch deadened some of her pain, but she was also in pain about dying. “I’m not ready,” she told me. “I wanted more time.” She never talked about how she would use more time. She knew she wasn’t going to have it.

My mother lived three months from those first two weeks when I cared for her.  I never had a chance to care for her again. When I returned home, my second husband, Gary, was diagnosed with pancreatic cancer. I was to be a caregiver to him instead. Caring for my mother felt like a loving responsibility. I was to quickly learn that caring for a husband whom you love very much is a completely different experience.

Gary lived fourteen months from his diagnosis of cancer. We had a mix of good and bad times, and I never resented caring for him. During the hard times, he was extremely cross from his pain—understandable, but still difficult. During the good times, we mourned the loss of our future together. I was with him every step of the way. A part of my heart was broken when he died. A wise counselor has taught me that within the brokenness is the memory of a man I dearly loved. I can hold that memory and go forward with my own life.

Seventeen years after Gary died, I met Jim, my third husband, whose own wife had died of cancer. We were going along nicely, forgetting how life can turn on a dime. Over one Labor Day weekend, he developed sepsis and went into septic shock, almost dying. We later learned it was from a perforated ulcer. When he came home from the hospital, I was back in the club. What I didn’t expect were the demands of helping someone who’s in great emotional turmoil from the aftermath of the disease itself—depression. We muddled through, not realizing that chronic edema, a consequence of his illness, would create the ideal conditions for another bout of sepsis three years later.  

So here I am again, a fourth time, which I sense will be indeterminate. I must say it feels different. Two days ago, a nurse bluntly said to us “It’s not edema, it’s lymphedema, a different condition. And you’ll have it the rest of your life.”  She kindly didn’t add, “Get used to it,” but it was implied.

Once again, those same two thoughts haunt me—what will happen to my life? Will I be able to do the things I enjoy? Will I ever be able to travel again? And what about my writing? Rosemaling?

Then there’s that second haunting thought about his suffering and fears. I feel challenged to alleviate these and help him go forward. I also feel great sadness for him. Am I up to the challenge?

Susan Allen Toth wrote an excellent memoir, No Saints Around Here: A Caregiver’s Days,  about caring for her husband who died of Parkinson’s disease. She writes:

“So much.” I think that simple phrase could easily be the motto emblazoned on a caregiver’s shield. Love, pain, courage, endurance, loss. So much, so much.

We caregivers are a club. We don’t have to feel isolated because we are in the company of caregivers all over the world, not to mention the circle of help from home nursing services, friends, and family. And we have love, the foundation that helps us go forward no matter how uncertain the future may be. As for me, it’s early, and doggone it, I will do my utmost to take care of both Jim and Karen. If there’s one thing the caregivers club has honed in me, it’s determination!

Retirement During a Pandemic

Garden in July

In the middle of July 2019 I announced my intent to retire at the end of June 2020; nearly one year in advance.  Some people thought that time frame a little excessive.  Would I not be considered a lame duck for the entire year?  What would this mean for my ability to lead?  Yet I know my boss, the Superintendent of Schools, appreciated the long lead time.  I was a department Director for a school district and sat on the Superintendent’s cabinet.  This gave him plenty of time to find a replacement. 

I had a plan for winding down my time in the school district.  Get as many projects as I could completed (or at least underway) before I left.  And start helping my husband with his business.  Things were moving along nicely.  I was very productive at my job while also helping my husband deliver in-person workshops around the state on weekends.  I was a little overwhelmed but feeling good. 

Then came March 15, 2020.  That was the day the Governor of Minnesota announced that, due to the COVID-19 pandemic, the state was going into lockdown and school districts would start planning for distance learning.  Students’ last day of in-person school would be March 17.

That changed everything. For everybody.

For me, as a school district employee, that meant stopping everything I was doing and refocusing on distance online learning and childcare for essential workers.  It meant many daily meetings (virtual, from home), onslaughts of emails, sifting through pages and pages of Department of Health and Department of Education guidance that changed daily, checking in with my staff, checking in with others in my field, all while still trying to move some projects forward with the hope that school would reopen in the fall.  It also meant that my husband’s in-person workshops (and therefore his business) came to an abrupt halt.  Not that I would have been able to do them anyway – I had to work on weekends as well. 

This went on for three and a half months – right up to June 30.  Then on the morning of July 1, I woke up to – nothing.  It was jarring to say the least.  Don’t get me wrong – the weight of the stress lifted from my shoulders made me feel I was floating on air. I was happy to shed that weight.  Yet I pride myself on being productive and I didn’t have any idea what to do. 

Do – it’s a small word with a huge amount of baggage attached to it – at least for me. Does gardening count as doing? Does reading a book count as doing? Does cooking meals count as doing? Does going for walks count as doing? Does sitting and contemplating my life count as doing? Does it count as doing if I’m not earning money?

That last question gets to the heart of my dilemma.  I have been a consistent earner since I got my first job at age 15, nearly 47 years ago. I took only four weeks off for each of my kids. I’ve never been laid off.  I work; I earn money. That’s how I see myself. That’s been by design.  My dad died leaving my mom a widow at age 53.  She had not worked for pay since she was pregnant with me. Even though he left her with enough money to take care of herself, it hit me that it might not have been that way. What if he hadn’t left anything, and she had not been able to take care of herself?  I vowed that I would ALWAYS be able to financially take care of myself and my family.  I was 23 years old.  And I fulfilled that promise to myself.  The problem is I didn’t make any promises for what I would do in retirement.

It’s taken me nearly three months to start cutting myself a little slack.  After all —we are in COVID times. The retirement life I visualized is not viable —at least for now.  It’s time to start visualizing something different and, possibly even better. We are in a period of flux where things are changing for everyone. I can use this time to my benefit.

The concept is called liminal space. “The word “liminal” comes from the Latin root, limen, which means “threshold.” The liminal space is the “crossing over” space – a space where you have left something behind, yet you are not yet fully in something else. It’s a transition space.”  (Alan Seale, Center for Transformational Presence)  This time of pandemic could be considered a very long liminal space for me, and for everyone else.

It’s time to leave behind the idea that I need to earn money for money’s sake. Financially, my husband and I are in a good place.  Between my pension, his Social Security and our savings, we can take care of our basic needs and then some.  (Although I will admit that we need to earn money if we want to live an exciting life of travel – when we’re able to travel again.)

It’s time to explore what it would look like if I were truly doing something I loved to do.  That means trying new things and further exploring familiar things. And it means shedding old ideas of what it really means to be productive and unpacking the word “do.”

When I was 23, I didn’t think to make a promise to myself for what my life would look like when I retired.  And why would I?  It was so far into the future.  Now the future is here. One of my favorite sayings is “When is the best time to plant a tree?  20 years ago.  When is the second best time?  Today.”  So today I make a promise that I will open my mind to the possibilities of what an actualized life really means for me.

Nostalgia 101

Image result for nostalgia

(https://tvtropes.org/pmwiki/pmwiki.php/Main/NostalgiaFilter)

Sometimes I think I could teach a course in nostalgia, that longing for a past perceived as perfect. I seem to nostalgize (who knew it’s also a verb) often.  A couple of weeks ago nostalgia for school hit me full force as I watched the neighborhood children, on the first day of school, weighed down by enormous back packs filled with new pencils, notebooks, glue, rulers, etc., waiting for the school bus. I was immediately back in school smelling that gummy stuff they used, in my day, to sweep the floors; remembering how the smell of cinnamon rolls baking used to fill the school where I taught; and recalling those Bunsen burners in junior high that we loved to mess with when the teacher wasn’t looking.

 We all have our own memories of favorite places.  Having spent most of my life in schools, as a student, a parent with children, a teacher, a college professor, and now a tutor, mine are about schools—my geomagnetic field is probably over the nearest school. In fact, just to indulge my nostalgia, here are some pictures of favorite school-related places—my elementary school, junior high, and the Danish bakery we’d frequent on our way home from school (I grew up in Racine, Wisconsin).

Although I suspect nostalgia has been part of being human forever, it was first coined to be a condition in 1688 by a Swiss doctor, Johannes Hoffer, who called it a “neurological disease of essentially demonic cause.” In the 19th and 20th centuries it was still considered to be a pathological condition, but when Dr. Sedikides, Tim Wildschut and other psychologists in Southampton, England began studying it in 1999, they found it to be just the opposite, a rewarding positive experience. They also found that it’s universal and not just an adult pastime, occurring even in children as young as seven. Both the features of nostalgia, pleasant reminiscing, and also its focus, holidays, weddings, songs, and places, are found worldwide, with most people reporting that they experience it at least once a week and almost half saying they feel it as much as three to four times a week. I guess I’m not alone.

Research has challenged the belief that nostalgia is unhealthy, finding, among other things, that feeling nostalgic helps with loneliness, boredom, and anxiety, makes people more generous to strangers, and makes couples closer and happier when they share nostalgic memories.

That said, I’m convinced that nostalgia can be a little addictive as we grow older and have memories upon memories, all the while—at least in my case—slacking off on creating new memories. Research seems to confirm this, finding that nostalgia is high in young adults, goes down in middle age, and gets high again during old age.  The reason is that nostalgia helps deal with transition. So maybe that’s why I find myself waxing nostalgic whenever I am reminded of schools; I’m in transition from a life in education.

Cover to the first edition of "You Can't Go Home Again" by Thomas Wolfe

Thomas Wolfe wrote a book called You Can’t Go Home Again, meaning that If you try to return to a place you remember from the past, it won’t be the same as you remember it. I test that claim every time I walk into Lake Harriet Upper School to tutor (I couldn’t get back in schools fast enough when I retired so I signed up as a volunteer tutor) or when I stop by Burton Hall on the U of MN campus or revisit the classrooms of my undergraduate days. On the surface, these buildings and their classrooms remain the same, and almost like an addiction, trigger some sort of feel-good chemicals in my brain. 

Recently, however, my addiction to schools was tested. I was finishing up with my tutoring group, when the principal, whom I could see through the open door standing in front of a class, walked out and asked me if I wanted to take the class for the rest of the day, the sub had not shown up. (I need to explain that this principal happens to be my son, who thinks his mom might be more at his bidding than other tutors in the building). How tempted I was to say “yes!” To get back into the fray, get those kids, who were taking advantage of having no teacher, back to work. But then something clicked in me.  I didn’t want to go into that classroom. From a lifetime of teaching, I remembered clearly what I’d be taking on, and I realized that my freedom to do what I want is awfully sweet. Mother or not, I told the principal, “No thanks.” I didn’t want to go home again.

Freedom. It is a sweet thing. Loads of time all to myself, no obligations. And my new-found freedom in retirement clearly moderates my desire to actually work again full time in schools. But the memories are also associated with the sense of being involved in something bigger than myself, something with the potential to make the world a better place. And . . . taking classes, traveling, having lunch with old friends, getting lots of exercise, and volunteering—even tutoring—don’t quite satisfy the need to have my life count, even now, in retirement.

So where am I then? I can’t go home again and I don’t want to, but my new “place,” retirement, leaves me searching. As I noted before, I am in transition, and my happy memories about schools, while addictive, will not suffice for a meaningful retirement. So I go forward, I can’t really replace my bond to education, but nevertheless I’m ready to commit to something equally meaningful, something that in what I hope is a distant future will live up to all the virtues of nostalgia. 

As usual, I was thinking about the moments of the past,
letting my memory rush over them like water
rushing over the stones on the bottom of a stream.
I was even thinking a little about the future, that place
where people are doing a dance we cannot imagine,
a dance whose name we can only guess.

From Billy Collins "Nostalgia" in Questions About Angels 1991

Sticking with What Works or Starting Anew?

Catching a Big Fish at Post Lake, Wisconsin, about 1955 (looked big to me)

I remember as a child waking up in the morning to a day fresh and new, filled with possibility. Something exciting was waiting to be discovered, maybe just around the corner. All I had to do was get dressed, scarf down a bowl of cereal, and walk outside. Sometimes I rode my bike around the neighborhood, looking for something interesting. Other times I’d try to find a friend to join me. I’d walk to my friend Carole’s house, and from the street, I’d call “Oh, Carole.” If she could play, she came outside and off we’d go inventing on the way. If not, her mother opened the door and said, “Carole can’t play right now.” In that case, I’d wander to the park or go home and read a book of my choosing. I was between five and ten when I experienced my life this way, the unadorned curiosity of a young girl.

          Idealized, of course, but I remember that time seemed to stretch on forever (especially when I was bored at the end of summer).  Bored or not, I didn’t look outside myself for something to do, rather, I acted from within, indulging my moods and curiosity. My notion of work was uncomplicated, something imposed by adults, “Practice your clarinet, finish your homework, do your chores.” It was before I learned that work was ubiquitous to living, any and all work, jobs, housework, yard work, volunteer work, and meaningful work, however it is defined. I had not yet assimilated the byproducts of work, productivity, success, and accomplishment, as guideposts for adult life.

          I remember telling my son, out of college and frustrated because he couldn’t find a job, “don’t worry about it. You won’t escape working. You will spend basically your whole life working.” At the time, I believed that the necessity of work had absolute power over my life, what I called the “tyranny of work,” because I saw work, too often, as something that needed to get done. I’d lost the inner direction that had, as a child, given so much impetus to my daily living. I didn’t see my work in context, as a necessary part of life but also, if completed purposefully, as an expression of my authentic self. I had not yet come face-to-face with the question of what life would be like without work—retirement, if you please.

And Then It Came. . .  Retirement

          On December 11, 2015, I retired at age 73. I woke up that first Monday, after the retirement toasts at the bar on the previous Friday, feeling that overnight the ground had become unsteady. I was prepared to shower, get dressed for work, fight the traffic, and get a good parking space, but there was nowhere to go. I knew I could sleep in, hang out in blue jeans. . . but then what? Unlike my fellow blogger, Karen Rose, I had not taken a phased retirement. I simply decided that it was time to step aside for someone younger with fresh enthusiasm. I worked on soft money, and I was tired of chasing it. As for getting “busy with something that looks a lot like work,” (Falling from Grace, posted 7/8/2019) I thought it would be easy. Finally, I would have the time to sit at my desk doing the creative writing I’d longed to do but had put off throughout my life.

My Facebook posting with the caption:  This is where it ends. . .

Writing, however, didn’t happen. Ideas suddenly went dormant. Rather, I spent three months having panic attacks until I read a book about how to overcome them. But overcoming them wasn’t the same as addressing the root cause. That little girl who once welcomed a day of possibilities had lost the ability to not only see those possibilities but also to act on them. I was caught in the conundrum of living from within or living from the cultural and societal norms that describe work—I’d fallen from grace and had no idea how to catch myself. . . .

Part 2: One Big Step for Karen-Kind                                           

I shared my angst about adapting to retirement with friends—and I mean “adapt.” I saw it more as forced obsolescence. Friends said to find a new routine.  Do the things you’ve been putting off—like cleaning closets. Find a new direction. I bought into it and muddled my way into a sort of routine, cleaned my desk in lieu of the closets, and started searching for that new direction. I grew a ponytail—I’d never had long hair. It was something I could accomplish.

          I started tutoring fourth graders in math at my local school—I wanted to be productive, feel useful, and there’s nothing as regenerating as being around ten-year-olds. I taught a couple of classes as an adjunct professor, and I joined a research project in my field as a consultant. Writing ideas resurfaced, and I found myself at my desk again. Whew, finally those panic attacks waned. I was in safe territory—work ( I cut off the ponytail).

          Then, as life will do when you’re ready for it, I was thrown a curve, albeit a pleasant one. My husband and I and Karen R. and Dan went on vacation to the Cowboy Poetry Gathering in Alpine, Texas http://texascowboypoetry.com/. For two days we were immersed in a culture different than upper midwestern city life. A culture of cowboys, in boots, bolo ties, Ariat shirts freshly pressed, creased jeans, and wide belts with polished silver buckles, standing for over an hour reciting new and classic poems. These poems were about life on the range, around the campfire, under the stars, and the meaning of life when everything slows down and you feel the immensity of our world beneath that naked night sky. Corny poems, sometimes, but poignant, nevertheless, and framed by the big questions we all grapple with—is there someone who watches over us? What is the meaning of our time on earth? Do our lives matter? Turned out, there was more to cowboy poetry than campfires.

          Thinking about the poetry gathering on the plane home and later as I went about my routine of teaching and tutoring, a glimmer of something started to break through. Experiencing the cowboy culture reminded me that there are multiple ways to live and know the world. I was living retirement like my former work life, with never-ending assignments where productivity ruled. I was judging my life through the lens of work, and that’s why I had found retirement wanting, a time for panic, and a need to find something, anything, new to do and quickly.

          I’d crossed that demarcation between work and retirement, and I’d found it painful, so I kept trying to go back to what I knew and had valued for some fifty years—working, doing something meaningful in the eyes of the world. Yet available to me was the life of that young girl who awoke every day to possibilities, unless, of course, I chose to clutter it up with the detritus of those fifty years of working. I realized that I didn’t need to “find a new direction.” I was free to have no direction. To wake up and follow my curiosity. To read a book of my choosing.  To call a friend and hang out at a museum. Even to go to Wales and live (something I’ve dreamed of doing). To sit on the deck and stare at the stars, unless of course, the mosquitos got me first. The point was, I didn’t need to have an agenda, unless that agenda was relearning how to be this person who allows the day to unfold as it wants to. Retirement wasn’t so much the end of work as it was a challenge to “start anew,” to just be and to awaken with curiosity about what the day will bring, and to rediscover the joy of that young girl, which, hopefully, is still in me.

From Anthem

So mornings now I’ll go out riding
Through pastures of my solemn plain,
And leather creaking in the quieting
Will sound with trot and trot again.
I’ll live in time with horse hoof falling;
I’ll listen well and hear the calling
The earth, my mother, bids to me,
Though I will still ride wild and free.
And I ride out on the morning
Before the bird, before the dawn,
I’ll be this poem, I’ll be this song.
My heart will beat the world a warning—
Those horsemen will ride all with me,
And we’ll be good, and we’ll be free.

Buck Ramsey