Confessions of a Reluctant Caregiver

BY GRETCHEN STAEBLER

I was 50 when I accompanied my younger sister’s trek across the country to move into our childhood home in Southwest Washington with our aging, widowed mother. My sister was leaving a big job and planned to turn our father’s spacious workshop into an art studio and see if she could make a living being a creative. Our independent and feisty mother didn’t need much help then—or thought she didn’t. Still, I knew living with her would be challenging, and when I flew home to North Carolina, I thanked the universe I wasn’t the one moving into my old bedroom in the basement. I could never do that.

Flash forward 10 years. It’s the day after my 60th birthday as I load my diabetic cat into my aging Honda CRV to drive across country. Yes, I’m moving to the bedroom where I had studied the periodic table and diagrammed sentences in high school. My mother, at 96, increasingly needs more help (though still in denial), and I am ready to return to the Pacific Northwest. Five years earlier my sister had moved from our mother’s house to the back of the functional-art boutique she opened in town.

A Reluctant Caregiver

I offer to live for one year with my mother. I can do anything for one year. And I will be back in the mountains and fir trees and the rain of my true home. The plan is that my sister and I will get our mother moved to some kind of assisted living and clean out the house my parents have stashed stuff in for more than 50 years. I will find a job, a home of my own, and resume my life. It will be a middle-aged gap year.

But we didn’t formalize a plan. My mother didn’t move. I didn’t get on with my life. And her care became my life as I tried to hold on to my sanity. Over the next four and a half years, my mother and I would fall back into the pattern of relationship we had when I was a teenager—each of us determined to win the war of independence. Me losing every battle. She hung on to life, and I increasingly felt I was losing a grip on mine.

As she became more cognitively and physically impaired, including near blindness, I became more isolated and more unemployable—or feared that I would. I insisted she have part-time paid companions so I could spend time with grandchildren and do some hiking and camping, which was the reason I wanted to come home. She kept firing them—declaring that she didn’t need them—while I vetted the next candidate.

I cajoled her primary care physician into referring her to hospice care. Though being nearly a century old is not considered a terminal diagnosis, my 80-pound mother got in on weight loss and congestive heart failure. The weekly visit by a nurse and the twice-weekly bath aide improved both our lives. Over the next years, she was discharged and readmitted several times, as she thrived under good care by someone with letters after their name. “It’s the best insurance around,” the nurse told me, “but Medicare doesn’t understand that.”

A Fall

Two months after the 100th birthday party bash my sisters and I threw for her, she fell in the hallway and broke her wrist and shoulder on her dominant arm. She could no longer push the walker she had recently started using, toilet herself, get up and down from a chair or bed, or, for a while, feed herself. Caregiving was 24-7, except for a few hours a week when a caregiver came to the house.

During my years with her, I was steadfast in my resolve to take care of myself—weekly coffeeshop dates with a friend, yoga, hiking, and time with my grandsons a couple of hours away. Over my mother’s objections (“she’s too busy”), I insisted my older sister come for week-long visits every several months from her home across the country so I could visit my older grandsons in North Carolina, go to writing retreats, and commune with nature from my tent. Self-care was my superpower.

After my mother’s fall, though, and three years longer than I had meant to stay, I was done. With some family pushback and several false starts, we moved my mother to assisted living—the best we could find on short notice—where she lived under the constant oversight of my sister and me for the last 18 months of her long life.

The Reality

The National Alliance for Caregiving and AARP estimate that nearly 42 million Americans provide unpaid care to an adult over the age of 50—most of them family—for an average of more than four years. Seventy-five percent are women. As of 2021, the estimated value of care provided by family caregivers: $600 billion. And they lose an estimated $522 billion in income a year because they are caregiving. Forty-four percent of them felt they had no choice. What these numbers don’t show is how many of these caregivers are burned out, in ill health themselves (often due to the stress of caring for another), or suffering from depression.

Here’s the kicker: The number increased by 9.5 million between 2015 and 2020, the increase led by those caring for a parent. Almost 10,000 boomers—those born between 1946 and 1964—turn 65 every day. By 2030, all boomers still living will be 65 or older. As the caregivers become the care recipients, we are living longer, but not necessarily healthier. The big question: Who will care for us?

The National Council on Aging reports that 80 percent of older Americans can’t afford long-term care and even those with less modest assets won’t be able to afford more than two years in a nursing home or four in assisted living. Yet one in seven will need care for five years or more. Since Medicare does not cover long-term care costs, older adults and their families must shoulder the expense or spend down their assets into poverty to qualify for social safety net programs such as Medicaid.

The U.S. is one of just three developed countries without a national family leave program (Caring Across Generations). Only 11 states and the District of Columbia have a state policy (AARP). The National Library of Medicine cites a study that concludes social and public policy changes must be met soon to meet the long-term care needs of Boomers. “Meeting the financial and social service burdens of growing numbers of elders will not be a daunting task if necessary changes are made now rather than when Baby Boomers actually need long-term care.”

I unexpectedly spent four years neither on a retirement plan nor paying into social security and then was beyond an age to find meaningful employment. Other children care for a parent (or two) much longer than I did, go longer without a paycheck, and have fewer options than my family did.

My mother was lucky. She had family willing to accompany her on her long walk “home,” assets to pay for care, and she was relatively healthy. But the family had never talked about her future after her husband of 51 years died 23 years before she did. What did we think was going to happen? We don’t talk about our own aging because it’s terrifying. Our children, if we have them, will be left to figure it out.

Gretchen Staebler is the author of the award-winning memoir, Mother Lode: Confessions of a Reluctant Caregiver, a candid story of the six years she spent walking her mother home. She is a grandmother, a caregiver ally, and is working on a second memoir. She lives with her cat in her childhood home in Centralia, Wash.

This story was made possible by funding support from AARP Washington and BECU. For more information, tips and resources for family caregivers in Washington state, go to: www.aarp.org/caregiverswa

Important! Your Vote Needed to Keep Long-term Care Benefit in Washington State

An initiative that threatens to eliminate the WA Cares program appears to be headed to the November ballot. Initiative 2124 would allow people to opt out of the public long-term care insurance program and would destabilize the funding it needs to succeed.

Seventy percent of adults 65 and older will require some assistance to live independently as they age. Still, most of our growing older population lacks the financial resources to pay for the care they need. While private long-term care insurance is an option, rising premiums make it too expensive for most, and many applicants are denied due to pre-existing conditions.

The WA Cares Fund provides flexible and meaningful benefits, allowing families to choose the care setting and services that best meet their needs, including help with personal care, medical assistance, home modifications, and more. The benefit can also pay family caregivers to help offset lost income while they are providing care.

If I-2124 passes, Washingtonians will lose access to this affordable guaranteed benefit to help pay for the long-term care services and support they need.