At first, they just needed help around their homes. Carson arranged for aides from a local agency to help with laundry, shopping, cleaning, and the like. Then some residents became weak, and she brought in physical therapists who gave them canes and walkers and taught them strengthening exercises. Some tenants required catheters, care for skin wounds, and other medical treatment. So she organized visiting nurses. When the home care agencies started telling her that she needed to move her residents into nursing homes, she remained defiant. She launched her own agency and hired people to do the job the way it should be done, giving people help with everything from meals to medical appointments.
Then one resident was diagnosed with Alzheimer’s disease. “I took care of him for a couple years,” Carson said, “but as he progressed, we weren’t ready for that.” He needed around-the-clock checks and assistance with toileting. She began to think she’d reached the limits of what she could provide and would have to put him in a nursing home. But his sons were involved with a charity, the Cure Alzheimer’s Fund, which raised the money to hire Sanborn Place’s first overnight staff member.
A decade or so later, just thirteen of her seventy-some residents were still independent. Twenty-five required assistance with meals, shopping, and so on. Thirty-five more required help with personal care, sometimes twenty-four hours a day. But Sanborn Place avoided becoming a certified nursing home or even an assisted living facility. Officially, it’s still just a low-income apartment complex—though one with a manager who is determined to enable people to live in their own homes, in their own way, right to the end, no matter what happens.
I met a resident, Ruth Barrett, who gave me a sense of just how disabled a person could be while managing to still live in her own place. She was eighty-five and had been there eleven years, Carson said. She required oxygen, because of congestive heart failure and chronic lung disease, and she hadn’t walked in four years, because of complications from arthritis and her brittle diabetes.
“I walk,” Barrett objected from her motorized wheelchair.
Carson chuckled. “You don’t walk, Ruthie.”
“I don’t walk a lot,” Barrett replied.
Some people shrink to twigs as they age. Others become trunks. Barrett was a trunk. Carson explained that she needed twenty-four-hour assistance available and a hydraulic lift to safely move her from her wheelchair to the bed or toilet. Her memory had also faded.
“My memory is very good,” Barrett insisted, leaning into me. Unfairly, I asked her how old she was. “Fifty-five,” she said, which was off by only three decades. She remembered the past (at least the distant past) reasonably well, though. She never finished high school. She married, had a child, and divorced. She waitressed at a local diner for years to make ends meet. She eventually had three husbands in all. She mentioned one of them, and I asked her to tell me about him.
“He never killed himself working,” she said.
Her desires were modest. She found comfort in her routine—a leisurely breakfast, music on the radio, a chat with friends in the lobby or her daughter on the phone, an afternoon snooze. Three or four nights a week, people gathered to watch movies on DVD in the library, and she almost always joined in. She loved going on the Friday lunch outings, even if the staff had to put her in a triple layer of Depends and clean her up when she returned. She always ordered a margarita—rocks, no salt—despite its being technically forbidden for a diabetic.
“They live like they would live in their neighborhood,” Carson said of her tenants. “They still get to make poor choices for themselves if they choose.”
Achieving this required more toughness than I’d realized. Carson often found herself battling the medical system. A single emergency room visit could unravel all the work she and her team had done. It was bad enough that, in the hospital, her tenants could be subject to basic medication errors, left lying on gurneys for hours (which caused their skin to break down and form open bedsores from the pressure of the thin mattresses), and assigned doctors who never called Sanborn Place for information or planning. The residents were often also shipped off to rehabilitation centers where they and their families would be told that they could never go back to apartment living again. Carson gradually worked out relationships with individual ambulance services and hospitals, which understood that Sanborn Place expected to be consulted about care for its residents and could always take them back home safely.
Even the primary care doctors the residents saw needed education. Carson recounted a conversation she’d had that day with the physician of a ninety-three-year-old woman with Alzheimer’s disease.
“She’s not safe,” the doctor told her. “She needs to be in a nursing home.”
“Why?” Carson replied. “We have bed pads. We have alarms. We have GPS tracking.” The woman was well cared for. She had friends and familiar surroundings. Carson wanted him just to order some physical therapy.
“She doesn’t need that. She’s not going to remember how to do that,” he said.
“Yes she is!” she insisted.
“She needs to be in the nursing home.”