Nancy's Story, Harry and Lila

I had the pleasure of spending three days with a man and his wife. We’ll call the man Harry and his wife Lila. The days were spent mainly feeding Harry, who was my patient. He ate constantly. His oatmeal had to be just right: perfectly smooth and piping hot. As I was making it he was instructing me in the “correct” way. This process lasted for thirty minutes before I got it “right.” During that thirty minutes Lila was yelling at him about being bossy with me. I reassured her it was O.K.

By the second day, he was noticeably weaker. He ate sitting in his wheelchair with his eyes closed through out all the meals. It bothered his wife that he would not open his eyes. I explained to her he was just too weak to open them.

During that day, he had his routine: Eat, go to the bathroom, and then go to bed. At one point his respirations became labored and his skin color more ashen than usual. He also complained of a cramping abdominal pain. After putting him on oxygen he pinked up and all of a sudden wanted to get out of bed. He surprised himself how quickly he was able to transfer to a standing position with his walker.

The rest of the day was pretty uneventful; no agitation, no pain. Unfortunately, after I left another nurse and Harry’s wife said he went "Berserk." He actually locked the nurse out of their apartment!

When I arrived the next morning, the nurse was outside of the apartment with a really scared look on her face. She was new to hospice and didn't know what to do. We both went inside. I looked in the bedroom. Harry was lying completely sideways in the bed. His oxygen was lying on the bed also. Lila, who was in the room with him, used a hand gesture with her thumb pointing down. I put a smile on my face with MY thumb pointing up. I went up to him and gently touched his shoulder. He looked up at me and said, "Oh, you are back." Then started to sing in his best opera voice "Dalila." His wife just threw her arms up in her very dramatic way and we both started laughing.

That day was a little different. Harry started to get anxious after breakfast. I gave him an Ativan. It calmed him down. The day unfolded with his wife talking incessantly and Harry sitting in his wheelchair with his head down and eyes closed. For some reason he did not request to go to bed as he usually did.

Toward the end of the day I said to him in my no nonsense kind of way, “You are afraid you will die if you go to bed, right?” He lifted his head and said, "Yes, I am." I knelt down to be at eye level (I learned that from you Barbara) and said to him, “Harry, you are not going to die today. As long as you are talking to me, today is not the day." He looked at me with a surprised look on his face and said, "Really?" I said, "Yes, Harry, today is not the day. I know you are not ready to call it quits just yet. But what I can tell you is when it is time, you WILL be ready."

When I was leaving, and the night nurse was there, I told him she would be replacing me tonight. I told him that it was O.K. to have someone there with him at night and that it really was a big help to his wife. He said that it was O.K. He promised me that he would not throw her out and that he would keep his oxygen on. He then asked for yet another desert. The next day I read in the nurses notes that he had a very good night and slept the entire night using his oxygen.

Even though spending three days in a row with a patient can be really stressful and confining, I hope I get to be with them again. But if I don't, I know that I will never forget Harry and Lila, the 36 hours of wonderful stories, Harry’s opera singing and learning how to make the perfect oatmeal.

There really was a lot more to this story but I guess there were two main points. First, his wife said food was an important part of Harry’s life. He believed good food was important. He still refused to eat eggs because of cholesterol. And second, like so many other people, he was afraid to die. I hoped I relieved some of his anxiety.

We really do meet amazing people don't we? She showed me pictures of her when she was young. She was absolutely gorgeous, a Rita Hayworth type, and he looked exactly like John Wayne when he was young.

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