It's OK to Let Go - A hospice experience
Most of you know that I'm a nurse and I've been working with a hospice program in Rhode Island. The story I want to tell you is about this patient I've been taking care of since July. She has cancer of the liver and intestines. We have been doing guided meditations together for several months and have gotten very close. I care a lot about her. Her husband is very nice and they have three daughters with little children - it's a lovely Italian family, very close. Through the months I've gotten to know all of them, even the grandchildren.
In the past few weeks my patient has gotten sicker. Her pain has increased, so we've been trying to get the pain under control. She's needed more and more care in the past few weeks and I've spent a lot more time with her. A few days ago she went to bed and didn't get out of it again. When I went to see her Friday, she was almost in a coma and in a lot of pain. We changed her medication again and she got more and more confused.
This was the one thing she had been afraid of: losing control and not being able to understand what was going on. I understand that fear. I think that's why all of us are in this room right now: not being able to understand what's going on, not being able to control in a clear way what we need to do with our lives. I don't mean control in the sense of being rigid, but being able to control our destiny, our needs, our ability to be with our families, with our lives.
She used to say to me, "What is it going to be like when I get so sick that I won't be able to express what I need? I'm going to be so dependent. My family might not be able to take care of me." I told her that I thought it was going to be okay, that I thought she was just going to be lying in bed and she would slowly lose consciousness. I told her that after all these months her family would be ready and able to take care of her, and that I would come and help as much as I could.
That's pretty much the way it happened. She got weaker and weaker. As she needed more equipment, I would bring it to the house: johnnies (nightgowns) that are easy to put on, and pads for her bed in case she was incontinent, and a commode if she couldn't walk to the bathroom anymore. It's a step by step process when people die. Gradually you can't do these things for yourself, so the hospice is prepared for that. You bring these things to the house and sometimes it seems premature to be bringing them and there would be a little resistance. But I knew that the time was going to come soon.
She would say, "Do you think we're really going to need this?" And I would say, "Maybe we won't need it, but why don't you have it on hand anyway?" It's the same with our practice. Sometimes we don't want to think that we need something or that we're going to have to do something. Sometimes we need to listen to people with experience, like hospice nurses. Many families don't want to look at death. Many families don't even sign up for the hospice because in a way it looks like a death certificate. Hospice care is intended to be care for the terminally ill, but we always tell people that they can still get better even though they have hospice care. We would be happy if they got better, but in case they don't, we're really adept at being able to take care of people in their homes when they're terminal.
When we sit and practice, sometimes someone who is older and has practiced longer will say something to us. Instead of rejecting it outright, it helps to say to yourself, "I'll put that in a corner in case I need it." This Italian family would do that with the things I brought. They would hide them, put them over in a corner and cover them up. Slowly these things would come out of the corner as they were needed. It's important to just listen, keep an open mind, and to know when you need something and have to take it. It's important for our whole life to do that, whether we're practicing Zen or practicing dying or whatever.
When I went over on Friday, she was in a lot of pain. I gave her some other medication that helped more. Then I sat on her bed with her. (That was another thing she wanted to control. She didn't want a hospital bed. She wanted to stay in her own bed. It turned out to be a nice thing, as it was a queen size bed, big enough so that at times her husband and her three daughters and I could all sit there together with her at the same time. It's not possible to do that with a hospital bed.) Her husband was sitting on the other side of her and we were both holding her hands. The pain started to go away and things settled down. I said to them, "Why don't we just try to pray for a little while?"
They know I'm a Buddhist, but it doesn't really matter. They had a strong Catholic background, but we knew each other so well by now that we all knew what we meant when we talked about prayer. For about twenty minutes we didn't say anything. We were just quiet and closed our eyes, and it was wonderful. It was wonderful for me to sit silently for twenty minutes with these two people. It's not like having robes and meditation cushions and all the paraphernalia, but it was just sitting on her bed. There was an agreement between us that helped us to just sit and be quiet. After twenty minutes I looked up at her face and she looked at mine, and she gave me the most beautiful smile I've ever received.
She had been very confused and in and out of consciousness, but she gave me this beautiful smile. It was such an incredible gift after months and months of trying to get calm together and accept the time when she was going to be this sick. There was no thinking, just this wonderful moment. I thought, "Oh, this is how it's going to be. This morphine is going to help her and she's just going to slowly fade out and it's going to be okay." That was the thought that came after her smile, so much like the Buddha when he held up the flower to Mahakashyapa. I was thinking, "I give this to you, this comfortable home death, me the wonderful hospice nurse." I had the idea that her dying was going to be just right.
Then Saturday morning I went to see how she was doing. She was okay but she didn't look very comfortable. We had a retreat going on here and I told her family that I was going home for a while and to call me if they needed anything. I called several times during the day to see how she was. Then at five o'clock they called me to say she was groaning and clammy and they wanted me to come.
When I went there, her abdomen had gotten swollen. I think she was bleeding internally and there was a lot of pressure. With every exhalation she would just grunt, about twenty times a minute. She had a terrible grimace on her face. I thought, "Oh, it's not supposed to be like this! Not this wonderful lady!" The family were all looking at me and wanting me to fix it so that she was not in any pain. So I called the doctor and got permission to give her twice as much pain medication.
An hour and a half later she was still making the same noise, so I called the doctor again to see if we could get an even stronger medication. It wasn't terrible, but she seemed to be so uncomfortable. And yet in many ways we felt strongly we were doing everything we could for her. Her family were holding her hands and telling her how much they loved her. It wasn't being obviously received, because she was in a coma. Once in a while she was a little bit awake, but basically she couldn't say "Thank you for saying you love me." She just kept grunting and moaning every time she exhaled.
I finally called a nurse that I work with and asked her to bring over more morphine, because I was afraid we were going to run out. She came over, a more experienced nurse than I. I asked her, "What is this exhalation, this grunting? Is it pain, or what?" She said many people do that when they are dying and it's not seen so much as pain but as a reflex, because it can be hard to die. This grunting really disturbs people when dying people do it. Researchers who have studied it basically feel that it's not pain, it's just hard effort.
We all felt better after that. We sat there holding her, five of us, each holding one of her hands or feet. We often talk about the direction of our lives, and it can be a high-faluting idea, but basically what it boils down to is, "What am I doing just now?" I was just sitting there. I wasn't one of the daughters or the husband, but I had a role. I felt that I was trying to perceive. I emptied out and just perceived, and it came to me all of a sudden what was happening, all these long hours since five o'clock in the afternoon and now it was ten o'clock and she was still grunting.
I said to them, "I think it's time for us to tell her that it's okay to let go." Nobody had told her that. We had all kept telling her we loved her, but nobody had said, "It's okay to go away now."
Her husband is a great guy, a genuine Rhode Island Italian about sixty-two years old. He was earthy, and kind of hid his feelings a lot, but he was very warm. He looked at me and said, "What do you mean by let go?"
I said, "Die." He didn't want me to say it. "It's time to tell her it's okay to die."
He said, "I can't do that!"
I said, "Well, maybe she thinks it's not okay because everyone is holding onto her so tight."
One of her daughters is a nurse and she said, "I was just thinking that myself." So she leaned close to her mother's face and said, "Mom, it's okay with me if you go right now. I think it would be really good if you started to try to let go right now."
The husband was on the other side, and every time his daughter said, "It's okay to let go," he would cover his wife's face so she couldn't hear what her daughter was saying. He didn't even know he was doing it. He wasn't angry with his daughter. It was just as if he had this question: is it okay to let go? He wasn't sure it was okay, so he was protecting his wife from hearing it.
I didn't try to control that. I didn't say, "Wait a minute, do you see what you're doing?" I just let it happen. Finally another daughter said, "Mom, it's okay to go to sleep now." She was modifying it.
I said, "Is going to sleep and letting go the same thing?" And she said, "Well, not quite. Just out of pain and asleep." At that the husband said to his wife, "Yeah, I think it's okay for you to die now." Then he started to say Hail Marys over and over again in a beautiful way, about fifteen of them.
He was telling her to let go, but he was thinking that there was something unfinished between them. Then I really admired him, because in front of this audience, his three daughters and me, he said to his wife, "I want to tell you something. I want you to forgive me for anything I've done in our marriage which has hurt you." It was so beautiful. He said, "I know that I've hurt you many times and I am really sorry and I want you to forgive me."
Up till then she hadn't moved at all, but just then she moved her head towards him. He told her again that he loved her. It felt complete. All the daughters said that they wanted her to let go and that they loved her very much but they wanted her out of pain. For about ten more minutes we sat there quietly and watched her grunt.
I really wanted her to stop, to relax. I was trying to keep an empty mind and just perceive what was going on. I said, "I think she's trying to think that it's okay to let go. I think she knows that you think it's okay to go and now she's trying to do that." We all sat there patiently, not rushing her, not forcing her. Two of the daughters left the room and I moved closer to her and held her. She started to relax. We thought, "That's wonderful."
Then something happened which I didn't expect. Again, it's like our practice not to make some thought about the future but just to take things as they come in the moment. At that moment some really dark blood started coming out of her mouth. Nobody expected it. Of course I had to act as if this happened all the time and not look worried about it. I got a pad and a basin and said, "We have to let this come out. She needs to have this come out. Maybe when she lets this come out, she's going to let go." Actually, she was letting go. I told her it was okay to try to let it all come out.
The blood kept flowing slowly. The daughter, who was only about twenty-eight years old, was incredible and got some tissue and kept cleaning her face. It was so quiet in the room. The beautiful thing about it was that even though it was such an ugly thing in a way, there was complete attention by the three of us. Her husband even kissed her on the mouth - totally unconditional love.
I called the other two girls in. She was just resting; her respirations were very slow. I said, "Now she's going to let go." She stopped breathing. All of a sudden her husband took the basin and got up and started to take it to the bathroom. We knew each other really well. I said to him, "Wait a minute, we're not finished. This isn't finished. I'll take this out and you go back to her." I could tell that he was scared all of a sudden. She wasn't going to take another breath, but this was the finish of it, so I told him, "Go back and look at her - watch her stillness." Then I left the room and stayed out for a few minutes.
They all started to cry. It was beautiful just to let them get it out. The father had never in his whole life cried before his daughters, and he was crying. Then all these other people who had been outside in another room all night came in and began to cry and say Hail Marys.
My karma is that I'm very composed and tight, even though I'm always telling people to let it out, to relax. In essence I wasn't in this family, so I kind of stood back and watched it all and watched myself too. I come from a middle-class Protestant background and I was telling myself, "Look, there's nothing wrong with being Italian and screaming and yelling and saying Hail Marys." Then I got into it: I almost cried, but I held it back. I was so relieved that she was out of pain. Then after about ten minutes this wonderful thing happened. The father and his three daughters went into another room and closed the door, just the four of them. I could hear them laughing. They were so high, it was like a five-hour retreat of being at her bedside and they all had gotten so close in that five hours.
There were certain family dynamics between the daughters. They would talk to me and complain a little about each other. Basically they got along but there were frictions, and now all the friction was gone because they had done this bedside retreat together. They were talking and laughing and telling each other how much they loved each other and how much they had helped each other. l wondered what the rest of the family was thinking, because their mother and wife had died just ten minutes ago and here they were laughing their heads off. It was a great thing. I wanted to tell you about it because it was so wonderful for me.
It's wonderful when you can take your work and take what we do here and bring them together. You don't have to use the word Buddhism or Zen. I've started using the word "pray" because that's what most people feel comfortable with. It isn't threatening to them. I say, "Let's be quiet and listen to what God has to teach us." I never used to use the word "God," but I do now because people like it. I say, "There's this whole universe and whatever makes this universe work is God. So let's be quiet and just listen." That's a sneaky way to get people to do what I like to do.
This woman was the first hospice patient that was all my responsibility, and she was the first person since I've been a nurse that prayed with me. I never had the nerve to ask before. I asked her early in our relationship if she would like to try some guided meditation, since it might help her relax and relieve the pain. She said she wanted to. We ended up doing guided meditations that were in a book on grief meditation. She got in touch with a lot of her grief and was able to let it go. I taught her about breathing and how that could help her feel stronger, and she would use that to handle her painful memories. She meant a lot to me. It was wonderful to see how her family pulled together, even though it was not an "ideal" death in a sense, with her constant pain and so forth. One of the things we teach here is how to let our minds go anywhere without hindrance, no matter what the outside circumstances.