Being Mortal

Nursing homes still exist because people haven’t found anything better—living with family still remains the primary other option. But greater longevity has coincided with more women joining the workforce alongside men, which creates problems for children (particularly daughters) of the elderly who try to juggle jobs and take care of parents. In one such case, Lou Sanders is 88 years old when he and his daughter Shelley face a difficult decision about his care.

Up until this point, Lou has managed well. He retired at 67, while his wife, Ruth, developed health issues. Three years after Lou retired, Ruth had a stroke that she never fully recovered from, and later she developed cancer and died in October 1994, when Lou was 76. For the next decade, Lou led a happy, satisfying life alone. He made friends with many people, including a young Iranian man named Bob who worked at a video store in town that Lou often visited.

Then, in 2003, at 85, Lou had a heart attack, but after a few weeks at a cardiac rehabilitation center, he recovered fully. Three years later, Lou had his first fall, and a neurologist diagnosed him with Parkinson’s disease. He began having trouble with his memory. After another bad fall, he became frightened that he might die alone. While he refused to look at retirement homes, Shelley knew that she couldn’t let him live on his own. Shelley and her husband Tom decide that Lou should move in with her.

Shelley and Tom have two teenage children and no obvious extra space, so they convert their living room into a bedroom for Lou. But Lou doesn’t like not being the master of his house, and in their suburban home, he has nowhere to walk to and no company for most of the day. Gradually, though, he adapts. He becomes devoted to Tom and Shelley’s dog and becomes friends with the mailman. Shelley also hires a young man named Dave to spend time with Lou, and they hit it off and play cribbage together.

While Lou adjusts, Shelley finds the situation steadily more difficult. She is juggling working, taking care of her kids, looking after the home, and now taking care of her father. Lou’s falls continue, and doctors aren’t able to figure out how to fix his balance issues. Shelley arranges for an aide to come during the daytime and help Lou wash and perform other tasks, but Lou doesn’t want to wash in the daytime, so Shelley has to do it.

The burdens pile up: Lou doesn’t like the food Shelley makes, so he doesn’t eat and she has to start making separate meals. He blasts the television so he can hear it. Shelley becomes a round-the-clock concierge, chauffeur, medication troubleshooter, cook, maid, attendant, and income earner. To take any trips, she has to hire someone to stay with Lou. He also starts to have falls. She wants to be a good daughter, but she is getting overwhelmed. Reluctantly, Shelley and Lou start to look for a place despite his protests.

Shelley and Lou look for an assisted living facility, which many believe is an intermediate stop between independent living and life in a nursing home. But Keren Brown Wilson, one of the originators of the concept, wanted to create a place that was an alternative to a nursing home. She wanted to create a place where people like Lou could live with freedom and autonomy despite their physical limitations. 

Wilson’s father died when she was in grade school, and her mother, Jessie, suffered a stroke at 55 years old, leaving her permanently paralyzed on one side of her body. At the time, Wilson was a college student with no income, and there was nowhere for Jessie but a nursing home. But Jessie hated it. As a result, Wilson became interested in policy for the aged, getting a PhD in gerontology at Portland State University. She wanted to do something that would help people like her mother so that Jessie could have assistance, but also have privacy and autonomy.

Wilson began to formulate a new kind of home for the elderly. She laid out plans with an architect and found a private investor. She cleared every safety and health obstacle, and in 1983, her facility, Park Place, opened in Portland. Her 112 units filled up almost immediately. None of the residents were treated as patients. They had private apartments with a front door that locked, they could have pets and choose their furniture, and they had control over temperature settings, food, and who came into their apartment. But they also had help with the basics: there was a nurse on-site and tenants had a button for urgent assistance.

The health care providers understood that they were entering someone’s home, which changed the dynamics between them and the residents. The residents controlled the schedule and the rules. They could eat pizza and M&Ms and stay up all night if they wanted to. And if their mind faded to the point where they could no longer make rational decisions, their family could help negotiate risks that were acceptable.

Many people attacked the concept immediately, questioning how people with physical and mental problems could lock doors, use knives, and care for pets. The state monitored the facility closely and published a study of the residents’ health, cognitive capabilities, physical function, and life satisfaction. It found that residents’ health was maintained and their satisfaction increased. Their physical and cognitive function actually improved. And the cost for those on government support was 20 percent lower than in a nursing home. The program was successful.

At the center of Wilson’s work is a central question: what makes life worth living when we are old and frail? Psychologist Abraham Maslow’s famous hierarchy of needs shows that people’s basic needs include food, water, and safety. Only after attaining these things can they attain the next level of needs, which includes love and belonging. Above that is the desire for growth: personal goals, knowledge and skills. At the top is self-actualization—self-fulfillment through pursuit of moral ideals and creativity.

Reality is more complex: people will give up some degree of safety for the sake of something beyond themselves, such as family, country, or justice. And motivations in life change over time. Young people seek a life of growth and self-fulfillment, but in the latter half of adulthood, people prefer spending more time with family and established friends than new people. They focus on being rather than doing and on the present rather than the future.

Stanford psychologist Laura Carstensen studies why this change occurs. In one influential study, she and her team tracked the emotional experiences of 200 people over decades. Every five years, the subjects were given a beeper for a week and asked to report their emotions 35 times over the course of the week. While Maslow’s hierarchy suggests that old people would be generally unhappier, as they are unable to achieve greater sources of fulfillment, Carstensen’s research found the exact opposite. The elderly found living more emotionally satisfying and stable.

Carstensen suggests that her findings are due to a difference in perspective: people’s sense of how finite their time is in the world. Carstensen drew on her own experience for this idea. In 1974, she was 21, with an infant at home and a marriage in divorce proceedings, when she was in a car accident that nearly killed her. She had a serious head injury, internal bleeding, and multiple shattered bones. Prior to this accident, she often thought about what she wanted to do in her life. Now, she reevaluated what mattered to her: other people. And these new thoughts echoed the four other patients in her ward, all of whom were elderly women recovering from hip injuries.

Bored in the hospital, Carstensen started taking an introduction to psychology class with the help of her father, who audiotaped lectures at a local college. Fifteen years later, when she became a scholar, she formulated a hypothesis: how we spend our time depends on how much time we think we have. As young people, we broaden horizons and delay gratification—willing to invest years for a bright future. As horizons contract, the focus shifts to the things and people closest in the present moment.

In another study, Carstensen interviewed a group of adult men, ages 23 to 66. Some of the men were healthy, but some were terminally ill with HIV/AIDS. In general, the younger the subjects, the less they valued time with the people they were emotionally close to, and the more they valued time with people who were sources of new information or friendship. Among the ill, the differences disappeared—the preferences of a young person with AIDS were the same as those of an elderly person.

Carstensen tried to find holes in her theory, but she confirmed them even across cultures. When people believe life is fragile, their goals and motives shift completely. Tolstoy grasps this in Ivan Ilyich, as the dying man loses his ambition and vanity and simply wants comfort and companionship, particularly from his servant Gerasim, who understands him more than anyone in his family. Gerasim recognizes that Ilyich is dying and helps him have companionship, everyday comforts, and to achieve his modest goals. This is what Keren Brown Wilson also wanted to help people do in her assisted living facility.

Around 1990, due to Wilson’s success, assisted living facilities became the fastest-growing form of senior housing in the country. By 2000, Wilson expanded her company from fewer than 100 employees to more than 3,000 in 184 residences in 18 states. But a distressing thing happened along the way: assisted living became so popular that developers used the title for almost anything. Wilson worried about the way the idea was evolving, as assisted living often became a stepping stone on the way to a nursing home, rather than an alternative. Concern about safety and lawsuits limited what people could have in their apartments, and many places defined stringent conditions that would trigger “discharge” to a nursing facility.

Shelley finds an affordable assisted living facility for Lou just before his 92nd birthday. He is depressed to go, but he knows that his falls have made staying at home untenable. Lou is lost, as he doesn’t know many people. There are very few men in the facility, and the activities often cater to women. He doesn’t have his family, friends, or his dog, and the staff doesn’t seem to care about Lou as a person.

Because Lou is miserable, he and Shelley work out a compromise, where she will bring him home every Sunday through Tuesday so he can maintain some of the life he enjoyed. Gawande asks Wilson why assisted living often falls short. Wilson says that it’s often easier and less aggravating for staff to do things themselves—like dress a person—than to give a person agency and let them do what they can. The tasks come to matter more than the people.

In addition, there aren’t very good metrics for a facility’s success other than health and safety—none deal with resident satisfaction. And assisted living is often geared towards the children’s wants, not the parents. Places tout their computer labs, their exercise centers, their trips to concerts and museums—but this fits what the children want for their parents, not what parents actually want. Wilson explains that “we want autonomy for ourselves and safety for those we love,” and that many things children subject their parents to, they would never want for themselves.

Lou lives in the assisted living home for a year, but one day at a cribbage night after drinking, he passes out and hits his head. Afterwards, he starts to pass out more frequently, and things get to a point where he can’t manage walking, even though he refuses a walker. He doesn’t eat properly, his memory worsens, and he often stays alone in his room. Shelley feels that Lou is getting too frail not to have 24-hour care. And so, even though she knows he wouldn’t want this, she feels that she has to put him in a nursing home. When Gawande presses Shelley on why she does this, she doesn’t know how to answer, saying that she worries he’s not safe, even if he may become more unhappy.