Honoring the difficult

The first time I met Grace she was sitting in the music room, her eyes closed, her lips quivering to the lyrics of “Be Thou My Vision.” It was late afternoon, the time the nursing assistants felt it would be best for me to see Grace, before her behavior changed and she refused any company. Grace had fired her doctor, whom she’d known for more than 25 years but no longer recognized. She also fired the next doctor, with whom her daughter had worked for 15 years and Grace had sat next to at her daughter’s wedding. And she had fired the nurse practitioner who specialized in geriatric care and with whom she seemed to have made a connection, convinced that her husband Roger and the rest of the family were plotting to get rid of her and leave her to die in the assisted living facility against her will.

A fall for Grace

On the surface, Grace’s story was not unlike so many I’d heard before. A retired accountant with the federal government, she had been living at home with her husband, a university professor, before an unexpected ice storm caused her to slip, fall, and break her hip. Her daughter Marianne, an administrator at the university hospital, knew exactly whom to call upon for her surgery. Everything went well, and Grace’s wound healed quickly. Anxious to get back to her gardening and volunteer work at her parish, Grace agreed to a short stay in rehab and was usually up and ready to walk before the physical therapists even arrived at her room.

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But it was one morning that Grace was not up and ready that the nursing assistants found unusual. She was disoriented, disheveled, argumentative, and nearly combative. Grace had a urinary tract infection that, as it often does with older adults, affected her ability to think clearly. A round of antibiotics was all it would take, so the doctors promised. She’d be back to herself in no time, and soon she’d be able to go home.

What no one knew—other than Roger and Marianne—is that Grace would not go home. Not even a week before her fall, Roger and Marianne had spoken about Grace’s unusual behavior. She had accused Roger of taking her checkbook from her purse when, in fact, she’d left it on the dining table the night before. She had written a check for $5,000 to the lawn service and then fired them, accusing the owner of trying to steal from her account.

Roger had not told his daughter that it wasn’t really the ice that had caused her mother to fall. She had also fallen in the middle of the night, right outside her bathroom. As a matter of fact, Grace had fallen three other times, each time trying to get to the bathroom, only to forget how she had gotten there. Even at the rehab, although the nurses had laughed it off and chalked it up to her wry sense of humor, Grace had said Roger was not really her husband but a federal agent who needed to be IDd before coming on the unit.

Making a connection

Now, my job was to connect to Grace and convince her to take her medications, particularly one she had taken for many years for anxiety and mild depression. It had taken weeks and several rounds of antibiotics to clear up Grace’s infection but her memory seemed worse, and it was clear from a series of neurological and psychological tests that it was exactly as Roger and Marianne suspected. Grace had dementia.

I started things off as I always do.

“Hello, Grace. My name is Angel,” I said, extending my hand. “May I sit and talk to you for a moment?”

Grace’s soft hands curled into tightly clenched fists, her shoulders hunched forward, her lips pressed into a tight, thin line.

“What do you want? Who are you, anyway?”

“My name is Angel. I’m wondering if I can talk to you for a few minutes?”

Grace sealed her eyes shut, clenched her fists tighter, and pressed her shoulders in toward her chest. I told Grace why I was there, choosing first to let her know I was a nurse practitioner and that I was there to check on how she was feeling—her appetite, her sleep, her mood.

“How do you think I feel?” Grace spat. She leaned forward, the skin on her knuckles turning pale white. “How would you feel if you were me?”

“I’m not sure how I would feel, Grace. But what I want to know, really, is how you feel.”

Give or take a few details, much of what Grace shared with me that day was true: No one had ever really told her she wasn’t going home from the rehab. Roger and Marianne had taken the facility tour by themselves and decided that, since it was on the side of the Beltway nearest to Marianne’s office and not too far from Roger’s, it would be convenient for both of them.

Silent treatment

The view at night from Grace’s room was picturesque. The small but beautiful assisted living facility was costing Roger a pretty penny, but, after 35 years of marriage, he knew the sacrifice he was making for his wife was worth it. It was also true that Roger had spoken to Miriam—Grace’s best friend—because he had been so distraught about what to do. But what wasn’t true, and what Grace was convinced of, was that Roger had “dumped” her there and was having an illicit affair with Miriam; that Roger was taking her retirement money and spending it on fancy overseas vacations for himself and Miriam; and that the medications I was there to convince her to take were coming out of her life savings, all for the sake of getting her out of the way of Roger and Marianne. Grace had all but stopped speaking to Roger. When he came, she just sat quietly in the day room, ignoring his every word.

In geriatric practice, we often quip about always having at least two patients: the person we are there to care for and the relative or family unit to which they belong. Our work is part detective, deciphering what is fact and what is perception, and part historian, wading through family histories that are often messy, convoluted, and very complicated. We are the insider and the outsider all at once, paying close attention to little nuances that don’t often make clear which side of the fence we should be on for any given day. We are also the bearer of news that, many times, isn’t good. People get older. Body parts stop functioning. Diseases set in and get worse over time. Cures don’t always happen. Hope falls short, and expectations crash to the ground. Anger is quick and acceptance slow, especially in cases of dementia.

What most people don’t know—and what many providers have difficulty explaining—is that dementia changes the brain in ways clinicians can rarely predict. It changes the ability to complete not only the ordinary functions of bathing and toileting and walking, it can also create drastic changes in mood, behavior, and personality. In addition to struggling with the mechanical tasks of caring, caregivers grieve the loss of the person and personality they used to know. For some, like Roger, the changes become unbearable over time.

The plan

Getting Grace to take her medications had less to do with talking to Grace than it did with talking to Roger. Because her behavior was so emotionally taxing, Roger had given up on coming to see her. My work was not only to manage Grace’s medications but to help Roger understand the full scope of her illness and how his presence alone might help. He understood parts of the science; where he needed help was in understanding his emotions.

"Holding space" for caregivers is as important as the work we do for our patients; in fact, it is central. In holding space, we strengthen caregiver coping skills by helping them process feelings of anger, frustration, and fear. We help normalize emotions, clarify perceptions, and set realistic expectations for what we know is likely to come. Most of all, we help caregivers learn how to honor the difficult.

My conversations with Roger led to creation of a new visiting schedule at an earlier time in the day when Grace was far more rested and less likely to be tired, irritable, and suspicious. His visits would be brief and focused.

Under the new arrangement, Roger became increasingly helpful to the nurses during the morning medication time. Roger and Grace shared meals together and morning coffee, activities that hadn’t been erased from Grace’s memory. Grace loved art, so we devised a calendar art project that involved cutting, pasting, and coloring, which gave her a goal and kept her busy in the same way her work as an accountant had.

Her condition did deteriorate over time, but, by then, she, Roger, and Marianne had accepted hospice and palliative care, and Grace was able to live her final few days back at home. There were days she still refused her medication, something we all learned to accept. And that, I’ve found, is the essence of geriatric practice: providing care through acceptance; making peace with even the smallest and slowest of progress even as the end of life looms near. It’s learning to honor the difficult.

For Reflections on Nursing Leadership (RNL), published by the Honor Society of Nursing, Sigma Theta Tau International. Comments are moderated. Those that promote products or services will not be posted.

Now is the time!

“You cannot solve problems with the same level of thinking that created them.” — Albert Einstein

It’s April, and I can only imagine the collective sigh of relief heard around the country. Those of us in the Northeast region of the United States—the New England and Middle Atlantic states—can finally be assured that our snowplow and shovel days are over. Clinic closures and school cancellations are unlikely and, thank goodness, the darkest days are behind us. Summer vacations for those of us who reside in the Northern Hemisphere are being planned, and, though we’re a little more than three months deep into the New Year, it actually feels like a new beginning.

April, for me, marks the beginning of planting season. As a gardener, I’m poring through seed catalogs and testing the quality of my soil to determine if it needs a few cups of nitrogen here or there to even out the acid-alkaline imbalance. I’m checking Farmer’s Almanac predictions to get a sense of just how hot and dry the growing season will be. I’m thinking about what I want to eat this summer and whether or not I want to stay on the tried and true path, growing what is familiar to me, or be a bit more bold and ambitious with heirloom seeds and varieties yet untried.

I’m checking my compost—a pile of rich, dark soil filled with worms and their egested casts, perfect for growing. And most importantly, I’m thinking about ways to improve irrigation. With an early start and late finish most days of the week, and hot temperatures sure to come, I can hardly imagine having enough time to make sure each crop row gets thoroughly watered to ensure that all of my hard work pays off with delicious meals composed of my own plantings.

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Interestingly, April also marks the convergence of two observances critical to our nation’s health: National Minority Health Month and National Public Health Week (6-10 April). Both are times of sowing new ideas for harvests of better health.

National Minority Health Month

Spearheaded by the U.S. Department of Health and Human Services’ (HHS) Office of Minority Health, the theme of this year’s National Minority Health Month—“30 Years of Advancing Health Equity”— commemorates HHS efforts, mobilized by findings of the Report of the Secretary’s Task Force on Black and Minority Health, commonly referred to as the Heckler Report, to eliminate health disparities among racial and ethnic minorities. Despite significant advances in medical science and disease-awareness campaigns, health disparities continue across racial, ethnic, gender, and socioeconomic lines.

Incidence rates of noncommunicable diseases such as diabetes, hypertension, and kidney failure remain disproportionately higher in African-American and Latino populations, and the United States continues to have an infant mortality rate that is higher than 25 of its wealthy counterparts. According to an alarming report in the Washington Post, in which data from the Centers for Disease Control (CDC) is analyzed, “A baby born in the U.S. is nearly three times as likely to die during her first year of life as one born in Finland or Japan. That same American baby is about twice as likely to die in her first year as a Spanish or Korean one.”

National Public Health Week

While we observe National Minority Health Month, the American Public Health Association (APHA) is marking—this week—National Public Health Week with five days’ worth of shifting themes that also emphasize the importance of addressing health disparities.

Monday kicked off the week with “Raising the Grade,” which, in an attempt to understand the overall state of America’s public health, examined public health data. Tuesday’s focus on the social determinants of health, particularly “zip code” health inequities, opened doors for very necessary conversations about ways in which health care access and services differ from neighborhood to neighborhood, city to city, thus further marginalizing the already marginalized. Wednesday and Thursday offer opportunities to discuss means for building a stronger public-health infrastructure through engaged leadership, interdisciplinary collaboration, and partnerships. And Friday will mark the 20th year of APHA’s National Public Health Week with a celebratory remembrance of major achievements in public health.

Nurses on front lines
No matter the setting in which we find ourselves, nurses are, more often than not, on the front lines of the very health delivery systems that are central to these week- and month-long observances. Nurses are the first and last points of contact for direct and indirect care. We are responsible for educating the largest segment of the health care workforce in the United States. For these reasons—and more—it is our responsibility to not only tune into these observances but to establish a direct relationship between public health and clinical practice.

By now, most of us have read the headlines about police shootings, tensions between local police and civilians, and spousal abuse at the hands of prized athletes. Tragedies all, it is time to speak publicly about the psychological toll that violence—particularly structural violence—has on individuals and whole communities. It is time to speak publicly about powerlessness and disengagement as a result of rape, abuse, repeated exposure to violence, and lack of protection and justice for victims of violent crime.

Those of us in clinical practice who know firsthand the financial struggles our patients have paying for medicine, healthy food, and the most basic necessities must give voice to the harsh realities of poverty and the social determinants of health. No more can we remain silent about the existence of food deserts—entire communities bereft of access to quality food markets but with easy access to the cheapest and most nutrient-poor foods one can imagine. No more can we ignore the roles of poor literacy and numeracy, placing blame for nonadherence on our patients without examining our responsibilities as providers to properly identify these deficiencies and to treat them as we would any other obvious health condition.

Now is the time

Knowing that these issues exist—and will continue to exist long past the five days in which we observe National Public Health Week and the 30 days in which we observe National Minority Health Month—underscores the importance of planting ourselves now in the events and discussions that are forthcoming. Now is the time for checking the soil and telling the truth about root causes of health disparities and inequities. Now is the time for collaboration, planting seeds of ideas that are bold and creative and getting out of silos that use outdated methods and theories that won’t solve new and more complex problems.

In the words of Einstein: “You cannot solve problems with the same level of thinking that created them.” Now is the time for improving irrigation, for ceaselessly watering, through advocacy and lobbying for improved and long-overdue health policies, seeds that will germinate into healthy “plants.” There is no better moment than the present to say what needs to be said and to do what needs to be done. Now's the time and the season, because, in the words of a treasured public-health colleague, at the end of the day all policy is health policy and all health is public health.

In late 2014, Angel Shannon was elected to serve on the Maryland Community Research Advisory Board (MD-CRAB) at the University of Maryland Center for Health Equity. “The overarching goal of MD-CRAB is to make a meaningful contribution toward the elimination of racial and ethnic health disparities by building trust between minority communities and health science researchers.” To learn more.

For Reflections on Nursing Leadership (RNL), published by the Honor Society of Nursing, Sigma Theta Tau International. Comments are moderated. Those that promote products or services will not be posted.