Learning on the Job: The Family Caregiver Reality

My grandfather came from the generation of men who appeared at the breakfast table freshly shaven and smelling of Old Spice, silvering hair Brylcreemed. I remember him chuckling over the funny papers and drinking a modest cup of percolator coffee in the sunny breakfast nook before setting off, monogrammed briefcase in hand, for the office. My grandmother, still in a soft robe and with her bouffant in bobby pins, eased into the day with the rest of the carafe.

Their home, a sprawling and much-remodeled 1950s ranch house in the flat, largely charmless Central Valley city of Stockton, Calif., was a refuge to me: hushed, with deep-pile cream carpets and cupboards full of fine china and family secrets. My grandfather was a grain trader who had built a business at Stockton’s inland port on the delta leading to the San Francisco Bay. My grandmother curated their social life and home, the latter filled with gold and ecru art and objects collected on their travels.

My grandparents seemed as inseparable from their surroundings as a snail from its shell—so much so that, as the oldest grandchild, I nicknamed them Grandma and Grandpa Stockton, identifying them by place, not name. To me their home was who they were, their natural habitat, and when my grandmother died in 2000 suddenly of a stroke, it was as hard to envision the house without its grande dame as it was to imagine its patriarch ever leaving.

A few years later, however, my once vigorous grandfather was struggling. He had suffered polio in the 1950s as an adult, and the resultant paralysis of his abdominal muscles left him with lifelong back problems, amplified in his later years by Parkinson’s disease into significant mobility challenges. The single-story house had only two stair steps, but they led from the master bedroom into the main living area.

By 2005, it was painful to watch my grandpa’s halting steps, his increasing tremor and his growing anxiety. My mother—his only surviving child—and I both lived an hour away in Sacramento. I visited when I could with my infant daughter, his first great-grandchild, but we couldn’t do much at a distance. My mom did convince him to hire a caregiver, whom I’ll call Paul, to check on him daily and help with dinner, household tasks and the nighttime routine.

That fragile balance lasted nearly two years, until the day Paul called my mom: My grandfather, who had been watching TV in his recliner when Paul left the previous evening, had been unable to stand up. Without a phone nearby, he had spent the night and most of the day trapped in the chair, and he was distressed and confused.

He also was finally ready to consider moving. Not only was he unsafe at home, but his wider community had dwindled. Friends had passed away, and he could no longer drive to the country club for dominoes and a Manhattan with pals, much less play golf.

No Time To Plan

In a rush to find him assisted living, neither he nor we had time to contemplate and mourn these losses. Both my mom and I were new to elder care, panicked and unsure where to look for guidance. My mom found a highly rated facility near her suburban home. I offered to help figure out the logistics of getting Grandpa there.

Badly weakened after his night in the chair, my grandfather was using a wheelchair, so whatever we arranged had to accommodate that need. I knew Paul had a van; why not, I suggested, ask if we could hire him for the move? Neither my mom nor I was familiar with non-emergency medical transport, and in our haste to get things set up we didn’t ask enough questions.

The day of the move turned into a debacle. Paul’s van didn’t have adequate air conditioning in the back, and on a blazing triple-digit summer day he unfortunately got lost on the baffling Sacramento freeways.

They were delayed for hours, and upon arrival my grandfather was so dehydrated and debilitated that when he got to the facility, someone there sent him to the ER—and chided my mom and me for our irresponsible transport arrangement.

To this day, my stomach clenches and my heart rate spikes when I think of that long, hot afternoon of confusing calls between my mom, Paul, me and the facility.

‘I’m acutely aware of how much I don’t know and how many questions I need to ask.’

I have no defense for our terrible, basic, entry-level caregiving mistake besides naiveté. My mom and I lacked the experience to know that systems existed to transport a medically fragile person, and nobody thought to tell us, so we grabbed at the first solution we saw.

Looking back, I also question whether assisted living was the best fit for my grandfather’s medical issues, even as I recall how difficult it was for my worried, rushed mom to navigate the unfamiliar language around different options and levels of care. I wish it were easier for families to find clear information and unbiased help with such fraught transitions.  

Hard-earned Experience Helps Planning

Since then, I’ve gained much more experience as a family caregiver for my husband through a long ordeal with cancer and a debilitating stem cell transplant. Facing such a situation today, I’d know to push harder in asking the facility’s staff for referrals, resources and solutions that might work for my grandfather’s needs. If there’s one thing I’ve found as a caregiver, it’s that one has to ask tough questions and learn on the job—often, as in my grandfather’s case, to the detriment of our fragile loved ones.

Though my grandfather improved after the ordeal of that day, he never quite regained his previous vigor. That event locked him in the two-steps-back-one-step-forward cycle of decline that so often, and so sadly, characterizes degenerative disease, and he died in 2007, at age 86.

I’ve thought often about that mistake in recent years. When facing a new wrinkle in my husband’s treatment, or a situation I don’t understand, I’m acutely aware of how much I don’t know and how many questions I need to ask. Caregivers need more guidance, but our health institutions are overstretched—particularly under the conditions of the pandemic—and there’s often little funding for care navigators, social workers and others who might shepherd caregivers and patients through opaque bureaucracies.

Some relief for family caregivers may be on the horizon. The Biden administration has proposed an integrated approach to the caregiving crisis, including job creation and protection for care workers, tax credits for family caregivers and an end to long waiting lists for home- and community-based services—all reforms that would clearly benefit families caring for needy elders. Such measures as financial relief and respite care can help give family caregivers the breathing room they need to avoid burnout, access additional resources and provide better care.

Back when my grandfather still presided over the breakfast table with his hearty voice and crisp white shirt, he used to call me the apple of his eye. I would have done anything, spent any amount of money, to spare him suffering at the end of his life. But I didn’t know how. And still, whenever I see a non-emergency medical transport vehicle, I feel a tiny pang of regret.

Kate Washington is an essayist and writer in Northern California whose first book, Already Toast: Caregiving and Burnout in America was published on March 16, 2021. The story of Washington’s struggle to care for her seriously ill husband, Already Toast offers a revealing look at the role unpaid family caregivers play in a society that fails to provide them with structural support. 

Photo (top) shows Kate Washington with her grandfather outside her grandparents' Stockton home. Courtesy of Kate Washington.