Lou Fay is exactly seven years, seven months, and seven days older than Anna, his wife of 33 years. When the two were growing up in the Bronx, the number of his house was 1244; hers was 4241the same digits in a different order.
"He takes numbers as sort of like omens," says Anna, a stylish woman who sits across from her husband on the patio of their current home (number 494) in Yonkers. "They validate or confirm things."
For Lou, the numbers ultimately added up to the fact that he and Anna were meant to be together. For her part, Anna needed no further evidence after meeting Lou at a wedding in 1960. "He had a very gentle quality about him," she remembers, "and he was so smart. Every new word he learned he wrote on a list and I thought that was so great." Lou also impressed her with his knowledge of jazz (though later confessed to milking a little knowledge of Dave Brubeck for perhaps more than it was worth).
Anna and Lou didn't go right off into the sunset, however. Although he appeared healthy when they met, Lou had recently been diagnosed with multiple sclerosis, a disease that can progressively destroy the nervous system. As a result, he was unsure of his future and wary of romance. The two saw each other as platonic friends for three charged years before Lou mustered the courage to really date. "He didn't know how much he wanted to get somebody else involved," says Anna. But having used a wheelchair herself ever since having polio as a child, she didn't see disability as an obstacle. "It wasn't the end of the world," she says, shrugging. "My attitudeand Lou's eventuallywas you take your chances no matter what."
Anna and Lou have been happy. In their earlier years together, Lou practiced podiatry and Anna workedas she still doesas a health care administrator at Mt. Sinai. The couple bought a wheelchair-accessible house in Westchester and acquired three cats along the way. Eventually Lou became a househusband, placing the calls to the plumber and drawing up the shopping lists after he slowly lost his ability to walk. (This processfrom needing to hold on to walls to getting around on crutches to using a wheelchairtook about five years.)
Then, six years ago, when Lou was 61, his health hit another turning point. He had respiratory failure, which made him dependent on a ventilator. He needed someone to suction secretions from his trachea, feed him, and even help position his body during the night. That translated into round-the-clock nursing.
During his first four years on the ventilator, Lou's nursing was paid for by the succession of insurance plans the Fays were enrolled in through Anna's job at Mt. Sinai. But, two years ago, shortly after Mt. Sinai switched to Oxford Health Plans, Oxford called to say the Fays' plan didn't cover at-home care and that Lou's nursing benefits would be terminated within 10 days. Anna knew Oxford would pay for Lou's care in a nursing home. But neither Lou nor Anna would consider that for a second. "It was never a question that he would not be at home," says Anna.
Anna tried to negotiate with Oxford and her employer on her own and then hired a lawyer, who brokered an agreement between the couple, Mt. Sinai, and Oxford that extended Lou's nursing care through the end of last August. But since then, the Fays have had to cover Lou's nursing costs through Medicaid, whichbecause his veteran benefits make his income too high for the programends up costing them roughly $6000 per month. Anna refinanced the house and liquidated the couple's other assets, which will cover the huge monthly Medicaid bills through the next six months, according to her calculations.
"Beyond that, I'm not sure what I'll do," says Anna. "I know that whatever I do, he's going to be in this house. I just honestly don't know what that means." There are some predictable hurdles ahead. Last year after hearing the Fays' case against Oxford in court, a judge dismissed the suit, advising the couple to try to resolve their differences with the company directly, while leaving open the possibility of reopening the case. So now the Fays' lawyer, Mark Scherzer, is gathering evidence to prove to Oxford that Lou actually needs his nursing care. If an internal appeal doesn't work, the Fays are likely headed back to court.
When contacted about the Fays, an Oxford spokesperson said that "Mr. Fay's benefit package does not include 24-hour at-home nursing care" and that whatever care the company had already covered was a "temporary exception." The spokesperson also said that the company offered social workers to help find "community services" that would be covered, but that "Mr. Fay has refused those arrangements."
Ironically, the cost of Lou's contested care is likely to be less if he stays at home than it would be in a nursing home. According to Scherzer, "he would still need this level of care, plus you would be paying for the skilled nursing facility at their usual daily rate." So why would Oxford want to pay for nursing-home care? "I think that once they got to a skilled nursing facility, they would argue that private duty nursing is still not necessary," says Scherzer.
Though she is willing to go to great lengths to resolve their problems (including sharing her story with newspaper reporters), Anna Fay is dismayed by the nitty-gritty dollars-and-cents discussions about her husband. "I don't like to get into whether it's cheaper or not cheaper," she says, staring out into the backyard. "My feeling is that we put money where our priorities are. I know all the arguments about how there is a limit to the amount of money we can spend on health care, but I also know there are many, many ways that we can reduce the costs of health care without compromising people's lives. Not that anyone cares, but Lou does have a life. He's not a thing. He's a person."
Lou can't articulate his feelings about the situation as well. His disease has progressed to the point where he must intensely focus his strength and concentration just to make a labored sound. Sometimes, in fact, only Anna can make out his slurred speech. But when he is asked how he feels about his situation, his response is clear even to the unfamiliar ear: "Stay here," he says, looking over at Anna. "By all means."
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