Ellen moved to Margaret Tietz Center for Nursing and Rehabilitation (MTC) in 2004, and I spent most nights sleeping on a chair in her room. The staff at MTC treated her well, but she really needed someone with her all of the time. Ellen's sister Joan provided overnight relief on weekends. Her brother Keith, and sister-in-law Mary were frequent visitors, and her brother Michael was there on weekends.
I discovered clinicaltrials.com but it was Mary who actually got her into a program at Sloan-Kettering and also into MTC.
My ex-wife Jayne, was dying of liver cancer during this period, and our daughter Maxine called almost every night at 9 PM, to trade news. After the call, Ellen waited for a report on Jayne's condition. I always told Ellen that Jayne was getting better, until I was strongly advised to stop it.
Jayne died August 20, 2004.
Maxine wanted to buy property in Florida, and I would tell Ellen, who was always cold, even in stifling temperatures, that we would be in Florida next winter, and she would never be cold again. I would also tell her what a wonderful time we would have in Florida, but I think she stopped believing me after awhile.
The hardest part of each day was 6:30 AM, when Ellen would wake up and want go outside. I forced myself to look cheerful, before kissing her and saying that she looked really good, and today was going to be a wonderful day. Because Ellen never really looked "good." She always looked just a little worse than the previous day.
August 2004 in "The Garden" Ellen and me
Once the "hard part" was over, I only had to lift her out of bed, into her wheelchair, roll to the bathroom, off the chair to the toilet, on the chair after the toilet, off the chair on the bed, find clean clothes, get her dressed, off the bed, on the chair, and finally out the door to the elevator then upstairs to an outdoor terrace or downstairs to "The Garden," and sometimes to a park which was a couple of blocks away, that gave both us a break from the hospice. Staff never complained about me sleeping there, and I could take Ellen anywhere, as long as I let them know where we were going and when we would return.
My last visit to MTC was from 9/22/04 to 9/27/04, my longest continuous stay there. It was tough to spend more than three nights in a row with Ellen, because you did not really get to sleep. First of all, you were sleeping in her room, in a hospital recliner, and nurses woke you several times during the night to check on her. Ellen also had be turned in bed every couple of hours and I learned how turn her in one motion, without waking her up.
Ellen died September 30, 2004.
I was really drained the last time I saw Ellen, and I told her that I wanted to visit my daughters for a few days. Laurie, her Hospice Nurse, arrived after breakfast, making it easier for me to leave, and we all went downstairs together. Laurie took me aside and said, "If you are leaving for a few days you better say "Goodbye" now because I don't think she's going to last much longer." But when I looked at Ellen, I thought she looked pretty good that day, certainly better than she had at other times. I went home, ranted and raved to my roommate for awhile, then slept about 12 hours. But I didn't feel right the following morning. Tried walking, went down Broadway from 110th street to 86th street. Stopped for breakfast, no help. My chest felt sort of tight and it worried me.
So I took the crosstown bus to NY-Presbyterian Hospital on East 68th Street.
I stayed in the ER until I was cleared to leave the following evening. I would have gone home if Joan was staying with Ellen, otherwise I might have replaced Joan, and slept in the chair. Unfortunately, when I called Ellen, there was no answer in her room, and her cell phone was turned off. However, my home was on Manhattan's Upper West Side, and MTC was in Jamaica, Queens — opposite directions. I kept trying to call Ellen for about an hour, then I finally called Mary, and learned that Ellen died. I knew that Ellen was going to die, but that didn't help me deal with her actual death. I started to cry, and then the hospital staff decided to keep me there for awhile.
Ellen was the nicest person I ever met. She didn't deserve pancreatic cancer. She didn't deserve to die at 55.
 
Mitch