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!

Losing Thor and Finding Belonging

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The adventure began when I realized at dinner that I’d not seen Thor all day. It was 7pm. I knew he’d come home when he got hungry. After dinner I went outside to water the flowers, expecting him to rub against my leg, as he does when I show up in the garden, his secret domain. No Thor. I checked the closets—he’s notorious for walking out from some place we don’t know exists in our house. Again, not a sign of him.

When I acquired Thor from the Humane Society as a kitten, I’d promised myself that I’d take exceptional care of him. He was the first cat I’d chosen myself, not given to me by someone needing to get rid of a cat. Because of that promise, I had to find Thor before bed. I started walking the neighborhood calling him. My neighbor to the south offered to help, but I worried that he wouldn’t come to her. He was by nature skittish of other humans. 

By bedtime, no Thor. I reluctantly searched the thicket of trees behind our yard, “Thorrrrrr. . . Thorrrrr.” But no Thor embraced my legs, only mosquitos and unidentified bugs.

I was worried. I made one more perusal of the neighborhood, calling softly, so as not to awaken anyone. I went to bed, hoping that he’d be at the door by 1am, and I’d let him in, give him a treat and sleep well. 1am, 2am, 3am—no Thor and no sleep. I was up by six, roaming the neighborhood, calling his name. I knew it was bad. He ALWAYS comes when called, and he doesn’t stay out all night, a patterned behavior I’d reinforced.

Thus began my search. A part of me believed searching was futile. Our neighborhood is defined by a lake. I walked around that lake that first morning at 6am. And I continued to search nearby blocks all day.

I read websites about how to find a missing cat, listed him on the missing pets website, and created a poster, as the sites advised. I printed over 100 posters, bought a stapler at Ace Hardware, and plastered the neighborhood with them.

Then it started, my neighbors, most of whom I don’t know except by sight, sent texts telling me they were sorry and would keep an eye out. A young man who heard me call Thor, said he’d alert his grandparents, retired neighbors whom I’d never met. The next night I met them, and they told me they’d scoured the shoreline for Thor.

The third evening, a woman phoned and said she saw a grey cat at a neighbor’s house. She offered to wait until I could get there. I jumped in the car and raced to the location, a block from Minnehaha Creek Parkway and five blocks from my house. Could he have gone so far, lost, and heading in the wrong direction? 

When I met the woman and her husband, they walked the neighborhood with me, calling Thor’s name. This part of the Diamond Lake neighborhood is filled with traditional, pricey homes with landscaped gardens. I traipsed the alleys, and I saw people enjoying the summer evening with friends. A few acknowledged me and said they’d keep an eye out. No Thor, however.

I was now too tired not to sleep, and I was also racking up mega points on my Fitbit, walking the neighborhoods. South of our house is 60th St., the demarcation between Richfield, a first ring suburb, and Minneapolis. The street also marks a change in the neighborhood, with the Richfield neighborhood peopled with Hispanics and tiny starter houses. I got the same helpful reception in that neighborhood, “Oh, your cat is lost? I’ll keep an eye out. Put some food out and something he likes to cuddle.”

Sunday morning: Day four. Thor was probably gone for good, since I knew he’d come when I called if he heard me. I’d allowed him to be outside, and he had always stayed close to the house, but something had probably scared him, and he’d gotten confused. I sadly took responsibility.

I decided to do laundry, knowing there was nothing else to do. By the laundry room, I heard meowing, and thought it was our other cat, Stella, who’d been following me everywhere since Thor had gone missing. This meow sounded different, soft, more like Thor’s. I walked into my husband’s office, pried open a sticky pocket door to a closet we never use, and guess who ran out? Thor! I screamed, breathless with happiness. I couldn’t believe it. I’d checked that closet the day he went missing, and I’d been downstairs many times. Why hadn’t he made a peep, or come out the first time I checked? Thor went right upstairs to his bowl and commenced eating. Only a cat can be locked in a closet four days and not come out a hopeless neurotic. 

The ending is happy. A few days later as I walked around the neighborhood taking down posters, a little boy I’ve never met asked me, “Has Thor come home yet?”  I told him yes, and I walked on realizing what a remarkable experience of belonging to a neighborhood I’d had. Other neighbors sent texts asking if Thor was back yet. People cared. People offered to help. People walked with me when I was searching. People commiserated when they saw me calling “Thorrrrr.”

Karen has written eloquently about belonging, but losing Thor made me find belonging. I normally feel like an outsider—it’s my personality; I’m more of an observer than a participant. But in this neighborhood, for four days, I was an insider. I felt connected to others by the common experience of loving and losing a pet.

I learned that belonging is two sided and requires effort to engage as much as having others invite you in. I’d been on a quest. I‘d walked the modest neighborhood south of me and the pricey neighborhood to the north, and in both places, people cared. It wasn’t about our differences but about our attachments to what we love. I reached out, engaged and people engaged back. Losing Thor, however briefly, taught me that if I reach out, there’s a world out there that will respond, and I can belong. 

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No Need for These Anymore

How Did I Ever Get Here?

Photo of our national secular church….and public square — by Jacob Creswick

I was recently asked to talk about my experience with church and the public square, and I immediately said yes – I am always up for talking.  But then I panicked and could not imagine what I would say.  After several days of muddled thinking, I realized that I need to start with where I have been before I can talk about where I am.  For me, that is increasingly a response to questions about what I think, and I wonder if that is part of getting older….

As a child and young adult, I was unchurched.  My parents, who were both raised as Lutherans – one grandfather was a Lutheran minister – had me baptized. Their story goes “we walked out of church, looked at each other, and said ‘why did we ever do that’”.  I have no memory of attending a church with them, either as a child or an adult.  In other words, church was not an embedded experience, apart from episodically attending a Methodist Sunday school with my elementary school friend, Mary Lou. I had nothing to rebel against.

Photo by Duanu00e9 Viljoen on Pexels.com

I was also anxious because I have always considered myself a lackluster participant in the public square.I went to a small liberal arts college in the 1960s, and activism was part of the social and educational experience. About 10% of my peers were arrested in a civil rights demonstration when I was a freshman – I was not among them because I had stayed back to study. After graduation, I was humbled by the ways in which so many of my classmates figured out how to continue that activism to visible acclaim. Among my peers were a well-known environmentalist, a defendant in the anti-draft “Dr. Spock Trial”, and the founder of a non-profit litigating cases in support of women’s rights. Still others obtained top positions in national journalism.

By those criteria, a decision to become a sociologist who focused on education for the less advantaged seemed small potatoes in terms of being active in the public square.

Back to church….

When my children were young, I attended a Unitarian church in Lexington, MA, which was acceptable to my un-synagogued but Jewish husband.  It was less a spiritual than a socio-historical experience because I loved just being in a 200-year-old building whose first minister was Ralph Waldo Emerson.  And I liked the people. I began seeking a different relationship with church only as I entered recovery from alcoholism, where I encountered my spiritual self with a group who shared their experience, strength and hope on a weekly basis. 

I was impressed with an old-timer’s anecdote: When he whined ”I don’t know what my Higher Power wants me to do”’, he got a simple answer: “All your Higher Power wants from you is to not drink and be a decent person”.  Recovery gave me a space to seriously consider Teilhard Du Chardin’s statement that we are all spiritual being who are having – or suffering – a human experience.  I also met Dan, raised casual Congregational, who was with me on my path.  So, in my late 50s I started attending a liberal church. There are many ways in which in which the “spiritual but not religious” seek self-understanding and value-based action in a world that often seems meaningless.  For me, all my disparate efforts to enact those – yoga, meditation, volunteering, recovery meetings – gave me a taste for something that church has fulfilled. 

For me, church is the one institution that consistently brings together three important threads of my human experience: developing an inner spiritual life that helps me to challenge instinctively self-centered reactions, creating a supportive and caring community of thoughtful seekers, and carrying the wisdom of spirit and my values into the world in order to make a difference.  The latter is important to me because it means thinking about the public square based on collective reflection rather than individual preference – in other words, taking others into account.  The balance between these three elements of my church experience has varied over time, and I know that the weight different people bring to those basic human human challenges varies a great deal.  But, for me, a church must be all three to feel that I really belong – I could get reflection and community in my 12 step groups and finding places that need extra hands to help solve the world’s problems is easy, but nowhere else do I find a dynamic connection among them.

But what about the public square – making a difference in the world, aka purpose?   I have learned as a member of the churches that I have belonged to that (a) it is ok not to be an elected official, the founder of an organization, or a trailblazer in visible social equity initiatives; (b) I am obligated to look behind the invisible curtain that hides the possibility of something new, and (c) showing up where I am needed is often enough.      

I can admire the Jimmy Carters of this world without feeling inadequate, but I do have a responsibility to use my time and talents as an advocate and support to those who are more visibly out there.  In other words, now that I am almost retired, I can show up when showing up is important.  Dan found a quote by Wendell Berry that summarizes how I think about what I need to do to bring my values into the public square:

We have lived our lives by the assumption that what was good for us would be good for the world.  We have been wrong.  We must change our lives so that it will be possible to live by the contrary assumption:  that what is good for the world will be good for us.  And that requires that we make the effort to know the world and learn what is good for it.

― Wendell Berry, The Art of the Commonplace

And I am also reminded that what I think of myself is not always what others see in me.  A decade ago, I was at a retirement event for a seasoned administrative assistant.  We were joking about what we wanted on our tombstones (good retirement party conversation…) and I claimed, “Tart of Tongue and Heart of Gold”.  The retiree looked at me and said, “Oh no – it should be ‘She Supported Women’”.  All I did was show up and advocate when I was needed. But  I also reflect on Richard Rohr’s observation that we show up when we are called to do so – and that is nothing to boast about, but simply listening for the voice that calls. 

Belonging….Young and Old

My friend Kathryn recently asked me to write a forward to her newest book on the importance of place and belonging in schools.  Using vignettes culled from decades of trying to understand the experience of children who don’t feel as if they belong in school, she stitches together a story about what adults can do to change that.  As I thought about children and belonging in school, I could not help but connect their experiences—good and bad—with my own.

–image courtesy of K.A. Riley

Kathryn does not define belonging, but her descriptions suggest that young people have a fundamental need to feel that they are in a psychologically safe space.  The drawing above, one of the most evocative in book, makes clear the devastating effects that feeling excluded have on identity.  Joe Murphy has said for years that the first goal of any school must be to weave an invisible cord between a caring adult and each student, so that if the child begins to be pulled away, the adult will know and figure out how to draw them back in.  In other words, personal connectedness is key to safety and belonging.

Woven throughout Kathryn’s book is an imperative:  Educators must be attentive to the experiences that each young person brings with them because children, like adults, need to be known and understood to feel that they belong.  A child who recently immigrated from a war-torn country may gratefully acknowledge that physical safety is fundamental to his feeling of belonging in school, while another whose family experiences routinized racism will need a different form of care to feel safe.

But there is another message, also reflected in Tupac Shakur’s evocative poem, A Rose that Grew from Concrete:  The communities in which young people live deserve the same compassion and understanding.  And belonging can be inseparable from physical place – a sense of being rooted that goes beyond positive relationships and comfort inside a particular school building.  Shakur’s poem is a metaphor for finding resilience in community, and for more attention to all places as a source of individual identity that support social and emotional development.

While contemplating the stories of young people that Kathryn collected, I could not help but think about how belonging also colors my life – and how questions about “where I belong” have come up in so many post-COVID conversations with others.  Dan looked up the other day and said, out of the blue, “we skated through COVID” – no one that we know even got very ill.  But we were in Boulder for a warmer winter close to family when the world shut down and we stayed.  We felt safer and more connected because we were in a “pod” with a daughter, son-in-law, and grandchild, which meant that we were not alone.  We had zoom connections with groups that we were already part of, so we felt engaged – even surrounded — by others.  Of course, we missed hugs, but we were ok and as safe as anyone could be during a global pandemic.

By the time that the 2020 election heated up, however, we had to acknowledge that the passage of time meant that we had effectively moved from Minneapolis, without really planning to do so.  We registered to vote in Colorado.

I keep thinking about  my reaction to Brian Friel’s Home Place, which I saw 14 years ago at the Guthrie Theater.  While the play is ostensibly about racism and class as English rule begins to erode in Ireland in the late 19th century, the dominant narrative is not what stuck.  Instead – then and now — It was that the English owner of The Lodge at Ballyweg kept referring to his real home as a place in Suffolk– where he had not lived for decades.  In other words, where you live is not always where you feel that you belong

And although Dan and I are reasonably content, we were uprooted from Minneapolis but are not rooted where we are.  This feels like a big deal because we are getting older, and like the plants in our garden, we need water, sun, and time to thrive in a place – and we know that this is probably our final chance to find a home. 

The last time I made a major move, from Boston to Minneapolis, I was just over 40.  I had always belonged to groups that were tied to place and space – in Boston, I floated between different jobs but I “belonged” with a close-knit “moms of young children club” and a sister close-by in a house that I loved.  I felt understood and rooted.  When I first landed at the University of Minnesota, I immediately decided that my itchy desires to try new things could be easily satisfied there – in other words, I found a professional home place.  But I changed houses, churches, book groups, and preferred grocery stores on a regular basis.  Now I have not been in Minneapolis for 18 months, during the trauma of COVID and the murder of George Floyd — and am retiring.  I don’t feel that I belong in a city where I lived for over 30 years – I miss the close friends whose lives have enriched mine over the years, but it feels as if the city and I have both changed.  Although Colorado is where I live, it is still not a home place. Everything from the gorgeous scenery to the strange weather feels slightly foreign.  The awe when I look at the Flat Irons each morning (finally, the view that I always wanted) is real, but it still doesn’t fully engage my heart. And, having lived a very circumscribed life during the COVID shutdown, I still have to use Waze to get anywhere but Target.

I am vaguely envious of friends who do have a home place and a sense of roots that connect people and a place to which they always return:  the couple who has Thanksgiving (and an extended vacation) with friends in the town where they lived after they first married; the middle-aged children who go “home” to their parents and old friends on a regular basis; others who spent a substantial sum renovating a house that they cannot imagine leaving because most of those they love the most live in the neighborhood.   The exquisite feeling of knowing that you belong someplace can be visceral…when it connects all the elements that I saw in Kathryn’s description of young people and belonging.

My friends who have a home place take it for granted and cannot imagine what life would be like without that touchstone.  I take for granted the fact that at various times in my life, I have experienced the psychologically safe space and personal connectedness elements of belonging that the children talk about even though I may not have them both today.   This leads me to wonder whether there is a rooted element to belonging for some people, but for others belonging is more fluid and situational.  In my case, generational wandering and relocation has been the dominant narrative of the Seashore clan ever since my father’s family left their tiny, rocky “home place” in Småland as immigrants to the U.S. in the 1860s.  Yet others from my great grandmother’s side, who came from Sweden at the same time, cannot imagine living anywhere but southern Minnesota and attending 4 generational family reunions each year. Are  some people simply more likely to need belonging and place, while others are sustained with the availability of safe spaces and satisfying relationships?

Belonging

(Benbecula)

Martins own this ragged edge

stitching sky peat water cloud

where land weds salt.

Cobalt ripples draw

The sun joyful

Through a mackerel sky.

I scan the gloss of deep

feel the sea   cradle this isle

these crofts   this past

— Fiona Scott