This Woman’s Work: The Rewards—and Risks—of Caregiving for Mom

April 30, 2019June 11, 2020 Caregiving

By Anni Hmelar

With Mother’s Day approaching, I cannot help but think about the woman who brought me into this world and parented me. And I cannot help but recognize how with age and illness our roles have reversed. My expanded relationship with her, as a primary caregiver, has brought me much reward and a daunting set of responsibilities I never imagined. Here’s our story.

My mother, Ann Marie, confesses to having nine true loves in her life.

There was my father, Steve Hmelar, whom she married in 1955. He passed in 2009, after 54 years of deep love, respect, and adventure. She fiercely misses him—his kindness, the conversations, the grace with which he led her on the dance floor, his sunny humor, and steadfastness.

Seven children in seven years followed their wedding day. So one love expanded to eight.

But before all of us, there was nursing.

Caring for the ill, injured, and frightened has been Mom’s life’s work. Well before she became a mother, she pursued this vocation/avocation with ardor. As a nursing student in inner-city Cleveland, she worked public health rotations and tended to Korean War vets.

As a young mother in Williamsville, New York, she was the neighborhood font of healing wisdom for scrapes, fevers, broken arms, and childhood diseases. And my siblings and I still remember the day she jumped fully clothed—new shoes and all—into a pool to save a drowning child.

She convinced a developer to donate land for a new hospital, then worked on the women’s auxiliary, fundraising for construction. That hospital still stands.

Shockingly for the mid-1960s, Mom taught “marriage preparation” (read “sex education”) to teenage girls from the Catholic parish. Her first class had six students; by end of term, thirty-nine young women gathered in my parents’ living room every Monday night for Mom’s curricula. Grateful fathers wrote letters of thanks that their daughters were prepared for life as wives and partners with a real understanding of how their bodies worked and what partnering with someone entailed.

When we moved to the Boston area, Mom did in-service shifts at a local hospital and taught a generation of nursing students in Framingham and Cambridge. After our lives moved to the West Coast, she worked in the OR, then neurosurgery. There she spent the last eight years of her professional career preparing patients and their families for life after a traumatic brain or spinal cord injury.

At her fiftieth nursing school reunion, her classmates recognized Mom as the alumna who had done the most to advance the field of nursing. She was surprised and moved by this honor.

You get the picture. My mother has brought hope, help, and healing to thousands. Literally thousands.

Role Reversal

Now, at almost 87 and following a heart attack, a few falls, and some memory issues, it’s her turn to be nursed. I have big shoes to fill. Big shoes.

For I am her primary caregiver. After seven years abroad, my husband and I moved back to the U.S. in 2017 to live with her, so she could keep living at home. According to a 2018 AARP study, home is where 75% of older adults want to live. Mom’s parents died at home. My father took his last breaths at home. For her to live—and die—anywhere else is unimaginable.

We are lucky. Most days, caregiving for Mom is a joy. Her long-term care benefit gives her in-home assistance from a certified nursing assistant. And five of my siblings live nearby; they rotate in and out on her social calendar for movies, restaurant dinners, and family events such as a grandchild’s graduation or recital. (My parents had no idea their fertility and Catholicism would create such a broad, strong support system!) My best friend, Deborah, a financial wiz, comes by once a week to help Mom with bill payment, the filing of insurance claims, or tax preparation.

Because I have the most flexibility, I take her to most of her many doctor appointments. I also coordinate health updates with my siblings. And since a few rounds of missed meds or too much medicine last fall, I am responsible for organizing her prescriptions and setting up charts for her vital signs. Negotiating with her to surrender that duty was beyond difficult. The nurse in her was frustrated and sad about losing a skill set she’d honed over decades; the woman and friend was glad that I wanted to protect her from over- or under-dosing.

There are night-time rituals, too. Usually a family meal at the dinner table, because that’s what Mom enjoys and believes unites us. I have had to learn to really cook. Some nights, we host our neighbors, for company, communion, and social stimulus. It’s fun and strengthens our cul-de-sac community. It is also exhausting.

Most weeknights there is also Jeopardy. (Mom has a charming admiration for all things Alex Trebek.) Then there’s helping her get upstairs, taking off her compression hose and shoes because her range of motion no longer allows her to do so. There are pajamas and dental hygiene. We have designed a certain choreography for this night-time preparation and activities of daily living.

The best part is tucking her into bed. I kiss her goodnight and tell her I love her. She practically purrs. Says, “I know. I love you, too.”

I have never given birth, yet I have developed what my twin sister Lisa calls “mamma ears and mamma eyes.” I can hear my mother stirring in the wee hours; I can “see” when something’s amiss. Mostly Mom’s just restless, but some nights an imminent health crisis—too much insulin, not enough insulin, severe heart pain, a fall—has signaled me to her bedside. I no longer sleep as deeply as before, just in case she needs me. I feel vigilant even as I slumber.

In my work at the Council on Aging, I have been learning about the impact caregiving has on caregivers. I am not alone in this experience of new rewards and new stresses. Even as we enjoy caring for our older loved ones, unpaid caregivers—mostly female (75% of us, according to the National Alliance for Caregiving and AARP)—suffer greater declines in physical and mental health than those who do not do this work. Mixing levels of great enjoyment with tedium and anxiety often manifests in depression, cognitive loss, substance abuse, and increased risks for the start or advancement of chronic diseases. For some, caregiving stress means we die before our older loved ones do. A 1999 JAMA study found that among caregivers for people with long-term illnesses such as Alzheimer’s, 12.5% are likely to die from caregiving-related stresses before their care recipient.

Financial Tolls

We’re also at risk of being less well off in later life due to lost income and lower retirement benefits earned. Unpaid caregivers report having to take time from work and feeling penalized for it. In fact, a 2011 MetLife study estimated that the cost of caregiving, in lost wages and Social Security benefits, averaged $324,000 for female caregivers.

There’s a lot to process in my relatively new role as a primary caregiver. I feel both love and concern. Stressful as it is, I wouldn’t change anything about this new dynamic. It’s how I honor my mom, this Mother’s Day and all the remaining days she and I have together.