Monthly Archives: September 2021

Who Is the Old Lady Directing This Circus?

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vintage photo

A week ago, I sat in a zoom circle organized by Jenny Antolak to reflect on a problem endemic to almost anyone over the age of 30:  We have been so busy growing up that we have often forgotten how to fall in love with our lives.  Jenny directed us to Shel Silverstein’s remarkable poem, “Growing Down”, which starts with a description of Mr. Brown, “the grumpiest man in town” who constantly hectors children to grow up, but ends up learning from them:

He got his trousers torn and stained,

He ran out barefoot in the rain,

Shouting to all the folks in town,

“It’s much more fun, this growin’ down.”

As we shared about the rules we followed in order to become successful adults, I confronted my carefully nurtured self-image as a bit of a rebel and a rule-breaker.  Sure, I made some career choices that were “risky”, leaving a plum job at Tufts University to go to a soft-money research institute, and later making a decision to detour from an obvious path to higher administrative positions in order to become a “regular” faculty member – but those were within a game where I knew all the rules and which ones I could break with no consequences.  More often I made careful and conventional choices that were “adult” and “responsible”, in marriage, in work, in friendships and other commitments.

But, while recovering from a divorce that my then-husband and I had avoided for years (those rules– “until death do us part”), I fell in love with someone who, before we were even sure that we were an item, asked me to join him in a spitting contest on the porch!  The silliness of it blew me away – as well as the utter charm of being childlike in my mid-50s.  When we married, I included in our vows his obligation to make me laugh every day.  No problem there, but on the outside, I still held on to the persona of someone who had been handed the playbook of life and had memorized it.  And I wanted to look it.  I colored my hair.  I wore eyeliner.  I bought my clothes at the American Craft Council shows, not at Macys.  And of course I had the black dress (or pants and top) to show them off.

Fast forward to retirement…when all the rules could change because we had played by the careful financial planning rules for middle-income professionals. But then there is a new script – the script for aging gracefully from the New York Times. Horrifyingly, it starts not with social skills or running barefoot in the rain, but with buying a hearing aid sooner rather than later and making sure to give up your driver’s license before, rather than after, an accident. 

Another article also triggered me, reporting that The Villages, a retirement community in Florida, has grown to more than 150,000 residents–with a 10 page list of rules governing residents.  Could Mr. Brown learn to “grow down” there, or would he be tied to an art class at 10, golf at 1, and cocktails at 5?  The behavioral rules of aging tell us where we want to live, what we should wear (read any woman’s magazine, which has hair and clothing suggestions tailored to age….), what to eat, how much to exercise, and repeatedly urge us to stay socially connected (once we get the hearing aids that allow us to…)

What happened to “When I Grow Old, I Will Wear Purple”, and Jenny Joseph’s 1992 warning that,

I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick flowers in other people’s gardens
And learn to spit.

Jenny argues for joyful silliness and breaking rules precisely because we are old enough to realize that we could always have gotten away with it – but were too cautious (or forgot).

Karen Martha laughed when I mentioned this, recalling that, when she recently complained about loud music in a coffee shop, her granddaughter (who happens to be our blog’s technical assistant) looked at her and said, “you usually don’t act like a grandma, but just now you did.”  Ooph – a 2X4 to the side of the head to remind us that it’s ok to ask for a quiet table in a restaurant when we are out with our 70+ year old friends, but not ok when we make it into a rule.

Which also reminds me that my 16-year-old granddaughter was invited to see Chicago by a friend’s grandmother.  The kids assumed that they were going to see a local production of the musical.  When they got there, it turned out to be the band  by the same name—at least some of whom are septuagenarians.  They had a blast listening to the songs that rocked our world when we were in our 20s!  Now that’s an astute grandma.

We are still part of the circus of life. So, every circus has lots of rules – they are there to govern the safety of the performers.  However, the performance needs to ensure that the audience is only aware of the magic and not what keeps the circus functioning behind the scenes.  The behind-the-scenes rules for those of us who wish to age well while “not acting like a grandma” is to pay attention only to new rules that keep us safe (if your knee suggests that a cane will keep you from falling, use it!), while ignoring the rules governing old people’s behavior that are designed to keep us invisible.  Even more, can we celebrate everyday events that suggest that we, like Mr. Brown, are growing down rather than growing up in the way that modern memes of aging expect?

I remind myself that the circus—especially Cirque du Soleil and its more modest spinoffs –  is magical because it pushes us to think about our humanity beyond our usual imagination.  For me, that will translate into more humble efforts: Getting down on the floor to play with a 4-year-old (my knees remind me that it was a lot easier with the oldest grandchild, but I can still do it).  Or remembering to have another spitting context.  Or sometimes just doing whatever equivalent of running in the rain strikes me.  I am reminded of the last lines of Brittany Spears’ song – prescient as the voice of someone who was forced to play by other people’s rules for much of her life:

Don’t stand there watching me, follow me, show me what you can do
Everybody let go, we can make a dance floor just like a circus

I guess that I am the ringmaster here….

–photo of t-shirt from The Old Ladies Rebellion

Welcome to the Club

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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!