Alert: A desperate time
I needed to find some writing I had done so I checked the cabinet in Ed’s office and found a file, 4 inches thick in which I had saved the letters, some ten pages long, that I had written to the insurance company and their doctors campaigning for them not to cut off my husband’s coverage if I refused to send him to a nursing home. I allowed myself to be distracted and I read it.

Jay was on life support at home with 24/7 nursing care. I lost that fight, but meanwhile, I began the process to get him on to Medicaid, which required that I compile a 3-year record of financial records and record every payment to anyone that was over $600. The result was a 5-inch thick pile of papers. We qualified because we didn’t own anything. No house, no car, we rented. He had no job, I had only a pension I couldn’t access yet. And one of the things I did was write to Senator Moynahan and he made it possible for us to get back on Medicaid. All he asked in return was a letter of thanks, which I was happy to send him.

Prudential, the NYT’s insurance provider had already cut services, giving me six hours of nursing care a day and for 18 hours I was on my own, doing sterile suction, feeding Jay through a tube, keeping him clean, getting him into the Hoyer lift so he could sit up. When the nurse came, I would go out to deliver the petitioning documents in person so as to speed the process, and I bought groceries and did other outside errands. At home, I would try to grab a couple of hours of sleep. I took a leave of absence from the company.

I was terrified I would get something wrong. I periodically called Bob, one of his nurses, who would advise me on the phone. One particularly bad night, Jay’s breathing was heightened, 30 or so respirations a minute. He was perspiring, he was in distress. I repeatedly placed dry towels under his armpits, and on his chest, changing them as they got wet. I put a cool compress on his forehead. This went on for hours. Toward morning his breathing became normal. My bed was next to his. I got an hour’s sleep, got up, made coffee. I had placed his hospital bed into our very large kitchen so that he would never be left alone. I looked toward the bed, he was awake and watching me. I said to him, “You’ve had a pretty rough night, but you’re looking kind of perky now.” His eyes smiled at me. And that was reward enough.
Then Medicaid came through, nurses returned, I went back to work. I will forever be grateful for the forbearance of The Times. All of this took place in 1992-3

xx, Teal