[Note from Frolic: We’re so excited to have author Susan Wiggs guest posting on the site today. She has some great insight to share. Take it away, Susan!]
“Draw a clock face for me,” the doctor instructs my mother. “Set the hands to indicate 10:50am.”
My mother, left-handed like me, struggles to put pen to paper. She manages a lopsided loop but gets the numbers all wrong. While she stares blankly at the page, a single tear slips down her cheek, tracing the shape of a pain she cannot articulate. I sit on my hands to keep from reaching over and helping her.
I look at this woman who used to dominate every hand of bridge, who had been a civil rights organizer, who could play piano by ear, recite “Charge of the Light Brigade” from memory, who used to wear middy blouses and Old Maine Trotters, who had driven the family from Brussels to Barcelona in a manual Opal Kadet, who finished the New York Times crossword puzzle every weekday morning, who had been a classroom teacher with perfect Palmer-method penmanship…and for an achingly long moment, I don’t recognize her.
She’s hesitant now, her confidence gone. She moves through the world as though it’s a minefield, clinging to the handles of her walker the way she used to steer a loaded shopping cart through Wegman’s, provisioning for the family she’d served all her life. This woman, who loved fashion and dressed like Jackie Kennedy, ninety years old now, wears house dresses and scuffs, occasionally on the wrong feet.
She tells me lengthy, detailed stories about my father walking through the house, searching for his suitcase, bringing her a stack of unpaid bills, or inviting a house full of work colleagues over for cocktails.
I’ve learned to stop reminding her that Dad passed away four years ago. At first, I used to patiently tell her he left us when the complications of Parkinson’s were too devastating to sustain life. It seems cruel to take her through the final years of his life, and our overwhelming grief, again and again. Her reality has changed, and if she sees her husband of sixty-three years, she sees him.
Some days, when she seems more focused and connected, I ask her how she’s feeling. Is she confused? Scared? Entertained? Happy? Her replies seem to shift like the weather, but every once in a while, she seems to understand that she’s caught in the teeth of one of life’s greatest challenges–dementia.
A whole day slips by as I watch her struggle with daily activities. There are parallels to looking after a young child. A little one needs help with dressing and feeding, bathing and toileting. So does an elderly person. Only now, the milestones are reversed. As parents of young children, we treasure their first steps, their first tooth, their first words. As working daughters looking after our elders, we sometimes wonder in fear if this conversation will be our last. If this will be the last time she recognizes my face or says my name.
According to the World Health Organization, there are at least 5 million people currently living with age-related dementia in the United States. As the population ages, these numbers are expected to rise. Statistically, one out of every six women and one out of every ten men over the age of 55 will develop dementia. The disease is progressive, irreversible, and like life itself, ultimately fatal. It affects not only the individual, but her entire family. Everyone who loves her will be touched by it.
Currently in the US, there are 44 million unpaid caregivers in the U.S. The women caring for their aging parents or grandparents belong to a group I call “working daughters”–women facing challenges we’ve only begun to address.
We’ve had decades of conversations about being a working mother. I was one of them. You probably were, too, and perhaps still are. Maybe you were raised by a working mother. We didn’t have it easy. We probably never will. Yet these days, there are abundant resources and a pervasive societal awareness of gender gaps, mommy wars, daycare dilemmas, family leave, pregnancy discrimination, and workplace debates. It’s a well-understood issue.
But what about the working daughters? These are the women-in-between, looking after their aging parents while trying to manage their own lives, raise their own children, pursue their own careers. Where does today’s working woman find the extra 15-30 hours per week it takes to meet her elders’ needs?
Working daughters do the rich, vital, soulful, and unpaid work of angels. As a society, we’ve barely scratched the surface of the matters these family caregivers are facing: loss of wages, reduced or completely eliminated retirement and health benefits, not to mention the enormous emotional toll caregiving takes on the spirit.
Becoming a mother of a child is sweetly anticipated, yearned for, dreamed about, celebrated. Becoming a daughter of aging parents is a different journey altogether. You don’t get to go on play dates with other young moms. You need a mind-boggling skill set in areas far from your expertise–medical knowledge, social work, finance. You learn the importance of dignity and comfort. You try to discover the life-giving grace of bringing dignity and comfort to a loved one.
The rewards are sparse, and the cost is enormous. A recent study estimates that in order to meet the needs of a loved one, a family caregiver loses more than $300,000 in earnings. [https://www.caregiving.org/] There are no tangible workplace benefits for caregivers. Women who have to interrupt their career when they’re in their 40s or 50s are likely to have trouble re-entering the workforce later. And given the (happy, thank you) reality that today’s women have a nice long life expectancy, the sacrifices we make today will affect our ability to provide for ourselves in 20, 30, or 40 years.
Money alone doesn’t solve the problem. Although my parents worked hard to provide for themselves in old age, their needs are far more complicated than financial. Paid helpers have their place, but even if you can afford them, there’s a kind of care only a family member can provide.
There are parallels to childcare, but the same solutions don’t apply. Parents are given leave for the birth or adoption of a child. Yet when a worker has to take off time to look after a sick parent, employers and society at large are less forgiving.
And trust me, people in this population do get sick.
I’m one of the millions of daughters who wakes up to this reality every day.
Whether I’m prepared or not, I have slipped into the role of working daughter. In the middle of my life—and currently in the middle of a global pandemic–I’m caring for a beloved elder in the family. Challenges like this rarely happen in a vacuum, and they never come at a convenient moment. I have a busy writing career, a family of my own to run, a granddaughter…a life. This happens to many women in my generation. You finally get to this place in your life where the kids are raised, the finances are stable, and you’re going to travel and be a couple, free of the school calendar and work schedule. You don’t plan to be called on by the needs of an elderly loved one. Now you can’t leave this person who needs you, not just sometimes, but all the time.
If you’ve ever had someone in your world who needs a caregiver, then you know these people are unsung heroes. Chances are, they don’t feel like heroes at all. They bumble through a maze of uncertainty, juggling care protocols, med management, visits to doctors and professionals, their full-time job, and a schedule that no longer feels like their own.
In my father’s final years of life, Parkinson’s disease overtook him. At the same time, my mother was dealing with health issues, including dementia on its devastating, unforgiving, inevitable progression. Measures can be taken to stave off the symptoms, but attempting to stem its progress is like trying to hold back the tide. Watching a loved one surrender her independence, seeing her personality change, realizing she’s losing the abilities that once defined her and were a source of personal pride–all the while knowing there is no cure–is a special kind of hell. And it takes a special kind of grace to walk along with someone during this phase of life.
While living these days, I’ve become deeply familiar with the realities of being a caregiver, and it’s given me a profound appreciation of the endless, arduous and often thankless work they do. This is the story of all working daughters bearing the sweetest of burdens, and finding redemption in unexpected moments.
The reality of my mom’s illness has caused me to draw on my deepest reserves, and most of the time, I manage to find glimmers of grace in everyday dilemmas. Dementia is a wavy road, unpredictable and mercurial. One moment, my mom is nattering away about the news of the day; the next she’s in Australia having beer cheese and pretzels with my long-gone dad. In an instant, raucous humor can become a flash of anger. An episode of incontinence can derail an entire afternoon outing.
I’ve come to know the searing pain of watching my mother’s personality change, her memory distort, her frustration harden into combativeness. She can’t identify a picture of a rhinoceros, yet she can recall what she was wearing the day her parents gave her a puppy eighty years ago. She’s unable to draw a clock face, but she can bring her lost mother back to life with a single story.
The very nature of caring for an elder is an intimate, sometimes funny, sometimes heartbreaking experience, weighted by a lifetime of emotion. The parent who used to be my soft place to fall is no longer that refuge.
Like my mother once did, I do the work before me with total commitment. I strive to extend to her the joy, grace, and humor she once offered me. It’s not a stretch, because as her memories shimmer and fade, mine come into sharp focus. I remind myself that she was responsible for the protecting, nurturing, guiding, and loving her children who were once as needy and dependent as she is now.
She was the one who wiped my tears, my nose, my dirty face. She was the one who took me to the doctor, the dentist, the orthodontist. Who cut my bangs and braided my hair. Who called a taxi to drive us to the ER after an epic fall, because she wanted to hold me in the car. Who soothed me through sports failures and boyfriend breakups, dog tragedies and career setbacks. Without a single hesitation, my parents gave me cello lessons, ski trips, field hockey dues, college tuition, even a down payment on my first house.
I remind my mom of the time she loaded me into the car and drove three hours to see Donny Osmond perform, sitting through the entire ordeal without a word of judgment. Now she tells me she’s always wanted to see a Cirque de Soleil performance.
I find a road show in the area. It involves pricey tickets, a trip including a ferry crossing, and the sort of tactical planning that goes into a military campaign–factoring in wheelchair loading and unloading, bathroom breaks, dinner, medications, accessible seating. I do this without hesitation because–Donny Osmond, cello lessons, all the times she made something happen for me because it was something I wanted, and all the long, rambling conversations we had about anything and everything.
I miss that mom.
But that’s my reality, not hers.
This is a moment in time for the entire world—the Covid-19 pandemic. For my mom, it means her world has shrunk even smaller. At age 89, with every possible risk factor for the virus (compromised lungs, heart patient, etc.), she is now isolated from the few social pleasures she used to enjoy. Gone are the visits to her favorite pizza parlor, her beloved hair and nail salon, her cherished monthly facial, her gatherings at church where she still remembers the words to her favorite hymns. Zoom yoga class is no substitute for the group at the senior center. Most heartbreaking of all, her other children, grandchildren, and great grandchildren, are barred from visiting her. Waving through the window is a poor substitute for a warm hug.
What I’ve learned through this process is to place myself in the moment, right here, right now, with my mom. Instead of being frustrated on her behalf as I watch her struggle with the simplest of everyday tasks, I connect with her reality. Sometimes just enjoying a cup of coffee while gazing at the flower garden we planted outside her window is enough.
Focusing on the here and now makes me more compassionate and more aware. I force myself to slow down, to wake up fearless, to look for the joy in everyday moments. I try not to mourn what used to be.
There will be time enough for mourning. The care I give her won’t last for the rest of my life–but it will for hers.
About the Author:
Susan Wiggs’s novels have appeared in the #1 spot on the New York Times Bestseller List, and have captured readers’ hearts around the globe with translations into more than 20 languages and 30 countries. Her recent novel, The Apple Orchard, is currently being made into a film, and The Lakeshore Chronicles has been optioned for adaptation into a series.
The Lost and Found Bookshop by Susan Wiggs, out now!
There is a book for everything . . .
Somewhere in the vast Library of the Universe, as Natalie thought of it, there was a book that embodied exactly the things she was worrying about.
In the wake of a shocking tragedy, Natalie Harper inherits her mother’s charming but financially strapped bookshop in San Francisco. She also becomes caretaker for her ailing grandfather Andrew, her only living relative—not counting her scoundrel father.
But the gruff, deeply kind Andrew has begun displaying signs of decline. Natalie thinks it’s best to move him to an assisted living facility to ensure the care he needs. To pay for it, she plans to close the bookstore and sell the derelict but valuable building on historic Perdita Street, which is in need of constant fixing. There’s only one problem–Grandpa Andrew owns the building and refuses to sell. Natalie adores her grandfather; she’ll do whatever it takes to make his final years happy. Besides, she loves the store and its books provide welcome solace for her overwhelming grief.
After she moves into the small studio apartment above the shop, Natalie carries out her grandfather’s request and hires contractor Peach Gallagher to do the necessary and ongoing repairs. His young daughter, Dorothy, also becomes a regular at the store, and she and Natalie begin reading together while Peach works.
To Natalie’s surprise, her sorrow begins to dissipate as her life becomes an unexpected journey of new connections, discoveries and revelations, from unearthing artifacts hidden in the bookshop’s walls, to discovering the truth about her family, her future, and her own heart.