The burdens were large and small. He didn’t like the food she made for the rest of her family. He never complained. He just wouldn’t eat. So she had to start making separate meals for him. He was hard of hearing and would blast the television in his room at brain-broiling volume. They’d shut his door, but he didn’t like that—the dog couldn’t get in and out. Shelley was ready to throttle him. Eventually, she found wireless earbuds called “TV ears.” Lou hated them, but she made him use them. “They were a lifesaver,” Shelley said. I wasn’t sure if she meant that it was her life that they saved or his.
Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial. Lou was on numerous medications, which had to be tracked and sorted and refilled. He had a small platoon of specialists he had to visit—at times, nearly weekly—and they were forever scheduling laboratory tests, imaging studies, and visits to other specialists. He had an electronic alert system for falls, which had to be tested monthly. And there was almost no help for Shelley. The burdens for today’s caregiver have actually increased from what they would have been a century ago. Shelley had become a round-the-clock concierge/chauffeur/schedule manager/medication-and-technology troubleshooter, in addition to cook/maid/attendant, not to mention income earner. Last-minute cancellations by health aides and changes in medical appointments played havoc with her performance at work, and everything played havoc with her emotions at home. Just to take an overnight trip with her family, she had to hire someone to stay with Lou, and even then a crisis would scuttle the plans. One time, she went on a Caribbean vacation with her husband and kids but had to return after just three days. Lou needed her.
She felt her sanity slipping. She wanted to be a good daughter. She wanted her father to be safe, and she wanted him to be happy. But she wanted a manageable life, too. One night she asked her husband, should we find a place for him? She felt ashamed just voicing the thought. It’d break her promise to her father.
Tom wasn’t much help. “You’ll manage,” he told her. “How much more time is there?”
Lots, it would turn out. “I was being insensitive to her,” Tom told me, looking back three years later. Shelley was reaching the breaking point.
She had a cousin who ran an elder care organization. He recommended a nurse to come out to assess Lou and talk to him, so that Shelley didn’t have to be the bad guy. The nurse told Lou that given his increased needs, he needed more help than he could get at home. He shouldn’t be so alone through the day, she said.
He looked at Shelley imploringly, and she knew what he was thinking. Couldn’t she just stop working and be there for him? The question felt like a dagger in her chest. Shelley teared up and told him that she couldn’t provide the care he needed—not emotionally and not financially. Reluctantly, he agreed to let her take him to look for a place. It seemed as if, once aging led to debility, it was impossible for anyone to be happy.
*
THE PLACE THEY decided to visit wasn’t a nursing home but an assisted living facility. Today, assisted living is regarded as something of an intermediate station between independent living and life in a nursing home. But when Keren Brown Wilson, one of the originators of the concept, built her first assisted living home for the aged in Oregon in the 1980s, she was trying to create a place that would eliminate the need for nursing homes altogether. She’d wanted to build an alternative, not a halfway station. Wilson believed she could create a place where people like Lou Sanders could live with freedom and autonomy no matter how physically limited they became. She thought that just because you are old and frail, you shouldn’t have to submit to life in an asylum. In her head she had a vision of how to make a better life achievable. And that vision had been formed by the same experiences—of reluctant dependency and agonized responsibility—that Lou and Shelley were grappling with.
The bookish daughter of a West Virginia coal miner and a washerwoman, neither of whom were schooled past eighth grade, Wilson was an unlikely radical. When she was in grade school, her father died. Then, when she was nineteen years old, her mother, Jessie, suffered a devastating stroke. Jessie was just fifty-five years old. The stroke left her permanently paralyzed down one side of her body. She could no longer walk or stand. She couldn’t lift her arm. Her face sagged. Her speech slurred. Although her intelligence and perception were unaffected, she couldn’t bathe herself, cook a meal, manage the toilet, or do her own laundry—let alone any kind of paid work. She needed help. But Wilson was just a college student. She had no income, a tiny apartment she shared with a roommate, and no way to take care of her mother. She had siblings but they were little better equipped. There was nowhere for Jessie but a nursing home. Wilson arranged for one near where she was in college. It seemed a safe and friendly place. But Jessie never stopped asking her daughter to “Take me home.”