Eileen had a stroke....

After a couple of years of doing better... and VERY much enjoying being able to go to St John's for Mass a couple of times each month... Eileen had a severe stroke.

Paul and I were her healthcare proxies. We spent time with her at Beth Israel - she was unable to speak, unable to move very much, and unable to eat. The doctors wanted to put in a feeding tube. Paul and I argued that Eileen did NOT want that level of "extraordinary measures" - that feisty, independent old lady would hate the idea of continuing to exist in such a diminished state. The doctors really dug in their heels, saying that despite this catastropic stroke, the feeding tube would enable Eileent to enjoy many more months, possibly years, of excellent quality of life, When it became clear that we would end up in court if we continued to push back, we allowed them to insert the feeding tube.

Eileen was moved to a nursing home in nearby Brighton. After a couple of weeks, when it was 100 percent clear that Eileen would never be able to live at home again, Paul and I went to her little apartment and cleared it out, freeing that space for another disabled person. Not the first time I cleared out a living space... nor the last... but it's always an emotional and difficult task.

One day when I arrived at the nursing home, I could hear Eileen yelling all the way down the hall. She never regained much meaningful speech, but those yells were pretty eloquently conveying that she was VERY unhappy... and that was just not like our Eileen! So I looked into it a bit... turns out that the nursing assistants were unaware of, or not paying sufficient attention to, Eileen's hypersensitivity to touch, caused by her spinal stenosis. When she was at home, she dressed in as little as possible - usually just a very loose housedress - because she could not tolerate even the feeling of cloth on her skin. When the aides changed Eileen, they were handling her exactly as they would handle anyone else -- not roughly, but in a brisk "get on with the task" fashion -- and this was causing excruciating pain for her. When we engaged with the nursing supervisors and talked to the aides, we learned that they really had no idea - they thought she was just a cranky complainer. (NOT!)

Our concerns were effectively conveyed to the aides, and I did not hear Eileen yelling again. During that terribly difficult period, it did occur to us to wish that the doctors from BI could visit Eileen and bear witness to her "excellent quality of life."

One of the hardest things for me during this period -- Eileen seemed to lose most interest in her faith. Eileen was the most faithful of Episcopalians, and had just about worn out her old prayer book. But after the stroke, when we would bring her communion, she would allow the prayers, but not seem particularly engaged by them.

I could apply many labels to those months in the nursing home, but "enjoying excellent quality of life" would not be one of them.