Lessons in Elder Care

From my family's crash course in elder care, I’ve learned that every day is an improvisation and every plan needs its own plan B. I’ve also learned that I can be a feisty advocate, and an ineffective one too.

After my 96-year-old Nana sustained a treacherous fall, my mother and I visited her in a Florida hospital, where she stared at the ceiling and remarked on the spectacular mosaics above her.

“This is such a gorgeous room,” she said. “I don't think I’ve ever been here before.”

My mother and I rolled with it, listening to Nana and asking her questions about this new and beautiful place. The luscious images she described were a welcome distraction from the ugly hospital room itself, and from the cuts and bruises that covered Nana's face and body. We thought maybe this was it—that she was dying—and we wanted to accompany her until we had to let her go.

It turned out that Nana was embarking on a major journey, just not her final one. When she was discharged from the hospital, we packed up her lovely Florida apartment and moved her to an assisted-living facility near my home in Pennsylvania.

My mother and I had anticipated this move for years. We had visited the facility many times, along with my cousin, who is a researcher like me and a savvy consumer. We grilled the staff about their services, the environment, and the nature, costs, and limits of care my grandmother would receive there. We were assured by the credible marketing director on multiple occasions that this would be the last move Nana would ever have to make.

Sure that we were making a necessary and reasonably sound decision, we planned for Nana's trip north. My mother and I struggled to imagine how we would help my frail grandmother cover the distance between Florida and Pennsylvania. By car? By plane? Accompanied by my mother or a nurse? We needed advice from an expert.

I called the executive director at Nana's new assisted-living facility and sought his counsel about the safest way to help my fragile grandmother travel.

“I have no idea. You're really on your own there,” he replied.

“Well, then,” I forged ahead, “do you have a geriatric social worker you could refer me to, someone who might have been through a situation like this before?”

“Oh. Let me think about that and get back to you,” he said.

He found a seasoned elder care manager who researched medically supported flights with out-of-reach price tags: $17 000 for an air ambulance; $6000 for nurse accompaniment on a commercial flight. She counseled me on Nana's likely health trajectory, based on her years of experience.

“You do understand that she's not going to get any better,” she said. “She's only going to get weaker and weaker.”

Demoralized but not deterred, my mother and I made a plan. Mom accompanied Nana on the flight from Florida, with drivers helping them at the airports on both ends. Through a combination of medication, dehydration, and Depends, they avoided the airplane restroom, which had been a central source of preflight angst for all of us.

While my mom and Nana traveled, my cousin, friends, and I hurriedly set up Nana's new apartment, arranging her cherished belongings in the most familiar way possible. As the last pictures were hung, my mom and Nana arrived from the airport, with Mom looking relieved but exhausted and Nana looking classy and composed in a turquoise twin set, a silk scarf, and her signature gold bracelet and earrings.

Nana sat down next to me and leaned her head on my shoulder. She was mostly quiet but then admitted, “I feel so overwhelmed.”

The sentiment was shared all the way around. We felt guilty about upending Nana's life and anxious about her ability to adapt. It didn't help that the facility was unprepared for Nana's arrival, with no clear plan for her daily care, no bedroom door, and—most importantly—no grab bars in her bathroom. We bought portable commodes with handles and strategically rearranged the furniture to avert falls.

We quickly learned that the facility was so understaffed that Nana would be neglected on the standard care plan. We saw residents stranded in wheelchairs in random spots in the hallway, hoping for a generous guest or a more able-bodied resident to guide them to dinner. We then accompanied Nana to dinner ourselves and saw residents waiting unattended and unfed for long stretches, until they were addressed rudely by the harried wait staff. My cousin camped out at the facility, closely watching the staff and Nana. Within 48 hours, we put out calls in search of a private aide and found a devoted woman who became Nana's round-the-clock companion. With that added support, Nana's care costs doubled. We began to hope for a favorable mix of longevity, quality of life, and fiscal survival.

That was 14 months ago. The social worker's prognostications proved wrong: Nana did get better in many ways. She walked to the park in good weather; she rode a stationary bike on winter days, at the behest of her caring but strict aide.

But the social worker's prognostications also proved right. Nana's cognitive function continued to decline, and she fell many times, despite the uninterrupted care of her aide. Sometimes she got hurt and sometimes she didn’t, but the assisted-living facility always called 911. On one emergency department visit, it was reassuring to see that Nana's spirit was intact as she flirted with my handsome physician-friend. I told him he probably added another day to her life.

My little boys also livened her days, as they unfolded the card table and reminded her of the rules to the game War. They cheerfully watched Lawrence Welk reruns and hummed along to the tunes of South Pacific. All of us welcomed Friday night pizza parties and Sunday afternoon Chinese takeout. I relished having Nana nearby, so that I could sit across from her on her worn velvet chair, reliving the long-ago memories that she could sometimes access. I appreciated how my boys, my husband, and our babysitters welcomed her into our busy lives.

Despite these genuine pleasures, and even with the many supports we were fortunate to secure, I couldn't protect Nana from her frailty, her anxiety, her confusion, and her falls. Once, she misjudged the location of her chair and landed softly on her bottom, tripping the facility's 911 response protocol. All tests proved normal in the ED—no broken bones, no arrhythmias, no pain. She did take home a mean Clostridiumdifficile infection that left her quarantined in her apartment for two weeks.

During that isolating period, she was virtually ignored by the facility's staff. I delivered food to Nana and called my mother to rethink our elder care plans. I told her how much I increasingly regretted moving Nana to this place that had promised (and charged!) so much, but delivered so little in the way of care. The apartment was pleasant; the overextended staff was often brusque or even hostile; the dining room hygiene was ghastly; fundamentally, the assistance they provided in a normal day was almost nonexistent.

We had little recourse. There are no federal standards defining what assisted living actually is, much less the quality of care such facilities should provide. I could have alerted a state ombudsperson but hesitated to speak up for Nana, since I felt that any complaint of mine could provoke mistreatment of her. And although she had once been a tough businesswoman, she was now largely unable to recognize, much less deflect or report, abuse by the facility's staff. She was vulnerable in this home I had found for her.

In retrospect, I fell too easily for the facility's sales pitch, which aligned so nicely with my fantasy that all of our elder care problems would be solved. I noted the “Best First Impressions” award in the facility's lobby but discounted unflattering second impressions that came in the days before Nana's move. One was a health department report I stumbled upon in an Internet search, a portent of unsanitary meals to come. Another was an off-the-cuff apartment tour my mom and I requested, to consider a less expensive unit. The marketing director obliged and must have regretted it. Unlike the pristine units we had seen before signing the contract, this unit reeked of cat excrement, had papers and trash and clothing stacked throughout, and was home to a disoriented, disheveled man who clearly needed more help than he was getting.

I looked at the marketing director in alarm, but all I could muster was, “Housekeeping comes once a week?”

The marketing director hustled us out, to the confusion of the resident, and mumbled something about how the family should take care of that. That was really all I needed to know. It was up to the family to take care of that helpless man's many needs.

The lesson didn't sink in. Having seen other beautiful apartments and well-groomed residents, I interpreted the two disturbing data points as anomalies. The papers had been signed, the flights planned, and the movers scheduled, so we forged ahead.

Once Nana moved in, we didn't want to move her again, but ultimately our concern for her well-being overwhelmed our resistance to change. We decided that the best option was for Nana to live with the help of private aides near my mother in New York. With this move, Nana would return to the place where she was born, raised a family, and buried her first love.

Thankful for the decision latitude we do have, and knowing that other families are far more constrained, we also know this is just another imperfect plan, albeit a new one.

On moving day, we sat together for one last meal in the facility's dining room. The marble floors still sparkled and the fountain outside was still stunning. Nana picked over her lumpy, cold food and tears rolled down her cheeks. We all cried with her, knowing how hard it is to do something new, and feeling responsible for launching Nana into yet another major life change.

Nana snapped us all out of our sadness, just as she always has.

“At least I’ll be closer to the cemetery,” she laughed, as we all cracked up with her. At 96, she's getting good at being old. I still have so much to learn from her.