by Kira Findling | Temporal Reflections | Fall 2018
There’s a disconnect with elder care in the United States. People are living longer, but nursing facilities aren’t catching up with the need for comfortable and engaging long-term care. My grandpa, Martin, moved into a rehab facility last summer following a series of intense surgeries and near-death experiences. Martin, who I call Papa, loves to nap. In my childhood, whenever I visited his house, I’d find him snoring on the couch, my grandma hitting his arm to wake him up. He seemed peaceful, drifting off in the middle of a conversation or television episode. At the rehab center, however, he struggled to sleep through the night, plagued by anxiety and loneliness. Along with the rest of my family, I tried to visit as often as I could, but found myself trapped in limbo, unsure what to do to help him in the face of a system beyond my control. Like Papa, many elderly people spend their days stuck in routines they didn’t choose, waiting for something to change, regardless of the good intentions of their family members. Among those who are receiving care in facilities, almost half struggle with depression, according to a study from the Centers for Disease Control and Prevention. But some relatives of the elderly believe that nursing home care offers the best option, while others are determined to take care of people in their own homes. Home care typically involves the work of live-in caretakers, who relieve families of nursing duties and allow for a good night’s sleep. Yet while Medicaid can help pay for this service, the application process can be onerous and inaccessible, requiring many documents and extensive financial information. Limited by government policies and financial concerns, people around the country are forced to make decisions about elder care with very little room to consider individuals’ happiness and specific needs.
In the facility, Papa often gave up and retreated into himself. Sometimes we entered his room to find him in another world, eyes unfocused and voice quiet. When my grandma brought him his favorite ice cream, he shrugged. On those days, his passion and excitement seemed to have evaporated. While some of that came from his poor health, I’m sure that much of it was due to his environment. His rehab center was state-of-the-art, with rigorous physical therapy and a rotating entertainment schedule, but the basic setup of nursing home care promoted boredom and isolation. He didn’t talk much to the other residents, instead relying on my family to visit constantly, to the point that my grandma decided to hire a caretaker after many sleepless nights. Time after time, he’d yell, “Get me out of here,” and we’d sit uncomfortably, unable to give him what he wanted. The reason why the current system of elder care isn’t working for my grandpa and many others? It’s premised on routine and repetition.
A doctor from New York wants to change that. Dr. Bill Thomas has spent his life working to tear down the nursing home system as we know it. In the early 1990s, he spent hours observing patients in nursing homes—patients who, like Papa, sat alone and waiting for hours, only to be wheeled somewhere else to do it all over again. Dr. Thomas began to think of nursing homes like spaceships, devoid of any sense of life or nature. Interviewed on the podcast Reply All, he said, “If our lives lack enough spontaneity, it loses its tang. It loses that sweet edge that comes from talking about that thing that happened, that nobody thought was going to happen. And nursing homes, actually the best of them, are extremely good at wiping out spontaneity—crushing it.” Dr. Thomas’s first big idea was the Eden Alternative. He introduced animals to the nursing home: four dogs, eight cats, and four hundred birds. Within minutes, the old folks began to giggle and chatter. One elderly man who had been unable to speak for months verbally requested a bird. He transformed from someone locked inside himself to someone speaking animatedly with a parakeet. The death rate of the nursing home plummeted and its patients were using significantly less medication. The success of the Eden Alternative came down to its chaotic nature. The elders were now living like they did for much of their lives: with little knowledge of what exactly would happen next. But though Dr. Thomas traveled around the country promoting the Eden Alternative, the initiative’s effectiveness waned when animals were introduced in an orderly manner, and nursing homes once again lost any sense of unpredictability.
The Eden Alternative holds incredible possibility for improving the lives of elderly people like my grandpa. It made care facilities into dynamic spaces with surprises and reasons to get up in the morning. Why bother spending energy when you know you’re living in a fixed, unmalleable environment? The Eden Alternative’s conclusion is that people need unexpected things to happen in life, or they will give up and retreat inside themselves. No one wants to stare at the wall all day. People want to connect, to be together, to talk and debate, to laugh. Dr. Thomas believes that elders deserve more autonomy, and that we have the opportunity as a society to build an entirely new system of elder care.
Last summer, I was always only a thought away from crying, wishing I could leave my desk and drive to the rehab facility. Papa was always confused, spinning from recklessly hopeful to dismayed. He asked my grandma why he was eating lunch at midnight, when really it was noon. One day he got so frustrated that he told us that he could imagine why someone would want to commit suicide after being stuck in a bed with no one to talk to. His caretaker was there for hours during the day, but at night Papa was alone. He woke intermittently to watch infomercials on the TV mounted to the wall, the speaker soft next to his ear so it wouldn’t wake his roommate.
Some believe that no one needs to live in nursing homes because they could get that care at home for the same price or cheaper. On Reply All’s episode on elder care, Tammy Marshall, Chief Experience Officer of the New Jewish Home in New York, said, “There isn’t anybody here that needed to be here. I could literally close this. […] All that we’re doing here can be done in your home.” Nursing homes are extremely expensive in comparison to the cost of hiring home care workers, who work long hours for low wages. Yet families often find themselves in a position where nursing homes seem to be the only option due to specific needs and the amount of energy that caretaking requires. In my papa’s case, he had to be in a rehab facility to access physical therapy. But even with “good” care—his daily physical therapy and opportunities for group activities—Papa felt aimless and missed us when we couldn’t be there. My grandma brought him home as soon as possible to end his feeling of isolation and the exhaustion of driving back and forth to the facility. A physical therapist came to the house a few times, but his treatment wasn’t as intense as it had been. The nursing home offered services that the house couldn’t, because of spatial limitations and availability of therapists. The situation left my family in a difficult position, having to choose between my grandpa’s happiness or physical health. Though Marshall is correct in saying that the services offered in a nursing facility can be replicated at home, doing so isn’t easy. It requires resources and emotional energy that many simply don’t have.
Caring for an elderly family member is a deeply intimate experience. Relationships change as power dynamics are flipped and decades-old dynamics disappear. Though caretaking can be a burden, it is a burden that many take on without thinking, out of love. My grandma’s life now revolves around taking care of Papa, but she can’t imagine it any other way. Like most people, she views her commitment to my grandpa as a promise to care for him towards the end of his life. She’ll be by his side. But this vow becomes an undue burden when she finds herself with very few options for elder care and when, despite her best efforts, Papa feels lonely and understimulated.
When I think about Papa’s experience in the rehab facility last summer and his continued support from live-in caretakers, I like to imagine a new world. I think of a system where Papa could decide what would make him feel healthy and supported. His dementia would prevent him from dealing with practical concerns, and we’d still have to remind him that he couldn’t drive or go to the bathroom alone, but he could tell us what he wanted and we would do our best to make that happen. So much of elder care is trying to figure out what’s best for your relative. Each day last summer, my grandma tried to make Papa happy while keeping him safe. But sometimes in the chaos of stress and decision-making, his emotional needs got lost. Papa was most at peace when we followed his lead and played along with the world he was living in, when we went along with his confused trains of thought rather than trying to correct them. For a moment, we would be on the same page, together in his world of endless daylight and imaginary orchestras and protein drinks for dinner, and he would smile.
When I imagine a better system of elder care, it’s based around community support and accessibility. Family members have a variety of affordable and supportive options for their relatives who need assistance. No one has to shoulder the responsibility of caretaking alone. I feel hopeful that, to some degree, that better system already exists. Over the summer, my extended family took turns visiting Papa and helping my grandma with logistics. These days, we all do what we can to make sure she is supported. Everyone—especially those who live close by—pitches in with food, advice, time, and words of support. But in my imagined system, it goes further. Caretaking is accessible and possible for all people, and valued as a job in and of itself. No one has to make decisions that leave their family members lonely and scared. There’s an institutional safety net for people who fall through the cracks. In my imagined system, Papa never stops caring. He’s present, with his family, and everyone gets a good night’s sleep.
One afternoon in July, after hours at the rehab facility, my family went back to my grandma’s house to go swimming. The evening flew by—pizza dinner, a call from Papa’s caretaker that she was leaving for the night. As I headed home, I realized that I had left my sunglasses at the facility. At 10:00 PM, I walked into the rehab center, greeted by the familiar sounds of wheelchairs in the halls and nurses’ shoes squeaking on the floors. Before I entered Papa’s room, I saw that he was pushing the call button again and again. The nurse bustled in and asked what he needed. Papa said, “How are you?” She smiled and adjusted his pillows. He had woken up and didn’t want to be alone. Their conversation was short; as they spoke, I snuck into the room, got my sunglasses, and left. I told myself that it would confuse him to see me there only for a moment, but really I wasn’t sure if I could handle the interaction. I knew it would wreck me to see him so helpless and alone at night. But as I left, I ran into a nurse I recognized. She smiled. “Saying goodnight to your grandpa?” When I shook my head, she gave me a long, appraising look. I poked my head into Papa’s room. He said a soft hello, sweet and tired. I told him that it was late—he had no idea what time of day it was—and that I had to go home, but that I’d be back soon. He nodded, and I kissed his forehead. Papa waved me goodbye all the way out the door. I walked out of the facility slowly, smiling at people in the rooms who were still awake. It still makes me cry to think of leaving him in that bed. That’s the reason I care so much about nursing homes and loneliness. I saw him ringing that call button again and again, and all I wanted to do was talk to him until he fell asleep, and sit by his bed until he woke up and we did it all over again.