Denys Cope is a registered nurse, a hospice worker, and a teacher to family members, physicians, nurses, and the public about being with the dying. She was actively involved in supporting Merrie Elliott Smith in her transition, as well as supporting the ministerial community in Santa Fe who were with Merrie 24 hours a day during her last weeks.
Denys: Well, I'll just start in with the talk that I usually give to people. I've been an R.N. (registered nurse) for over 30 years, and a Hospice nurse for about 11 years. About 2 years ago I decided that the most important part of the job that I do when I am with an individual family, is teaching them about the dying process so they can get comfortable being with their loved ones. People are often not comfortable around dying. And it can help to be familiar with the actual dying process, the physiology of it and the spiritual experiences of it, to know what is really going on. So I will describe what happens when Hospice gets called in, when people are counting their life in weeks or months rather than years.
The main thing I would like people to know is that the dying process is not something to be feared. It is a tremendously sacred experience, and there is tremendous spiritual support for the transition.
What I have learned over time is that the dying process is perfectly and naturally orchestrated, just like the pregnancy/labor/birth process. It's just exquisite how the body naturally goes into the dying process. No matter what brings you to the dying process, whether it is cancer, old age, lung disease, heart disease, whatever, the process is the same. I get the picture of a funnel: everybody gets brought to this place, and then they begin the same process; it becomes very recognizable. Many people say to me, "How do I know when my loved one is ready for hospice?" Or, "When have they begun dying?" I ask if the person has changed their relationship to food, because what I see is that the body has this natural withdrawal from that which sustained physical life. It's really switching from a physical energy source to a spiritual energy source, so usually there is loss of appetite with some degree of weight loss. That's one of the criteria when we are assessing if we can put someone on Hospice. If there is a valid weight loss and other factors, we can say okay, they have probably started the process. The other thing we do as we enter the dying process is we start to withdraw from the outer world and turn inward. There is a disconnecting from social things, from those out-in-the-world kind of things; people in the dying process don't have energy for that anymore.
The first thing to go - it goes in layers - are our social connections; we stop having energy for that. Next to go is our close circle of friends, and then pretty soon the only people we have energy for are our core people, the people for whom we don't have to put on a social face. Throughout the dying process, we are doing what conserves energy. Eating lighter food because our body can't digest the food. And energetically or physically, withdrawing from activities, doing less and less and spending more time doing what we the living think is sleeping. We say they are sleeping, and the truth is they are doing a lot of this internal work, the work of dying. Dying is a lot of work, it is hard work, and some of that is the work of introspection. I believe that not all of that is done on a conscious level. Just like our dreams are healing, I believe we go into these different states of consciousness, and we are able to do clearing or reordering, for want of a better word. This introspective work takes place on a lot of levels.
Ben: Can you say a little more about that introspective process?
Denys: From what I observe, one of the things that we do is to start taking stock of our lives, our relationships. We ask, "What has our life meant?" "Does anything feel unfinished?" We start to think about the things that we haven't done, the relationships where we may not feel complete, or wish we were in a different place. We start to do that, and from what people have told me as they get closer to actually dying, there is an experience of getting to see the "other" side.
In my experience, people go into a place of expanded awareness. They start to become aware beyond the physical level. They start to travel in their inner world, perhaps seeing where it is they are going, and going over and coming back, going over and coming back. I can't really know if that is what they are doing; that is my interpretation based on my experiences with people and what they have told me. I had a fellow once ask, "Well, what if you don't believe in that kind of stuff?"
I tell the story of this fellow who was a botanist. He was very much a scientist, and he only believed in the physical world of things that could be measured and tested and seen. We would have long philosophical discussions about that. He was seeming to take an inordinate amount of time to die. I have found that people die in their own time. At one point the nurse said to him, "Will, is there anything that you are afraid of?" We explore that when people seem to be hanging on, if there is anything they are afraid of, or any unfinished business. He said, "Oh no, I'm not afraid, I've been given the gift of seeing where I'm going, and it's warm, and it's beautiful; it's just that I don't want to leave here."
One of the things that we, as the living, do is to project upon the dying all of the things that we think that they must be thinking and feeling and experiencing. All of us surrounding Will were projecting upon him that he must not have quality of life anymore. He was relatively young, I think in his late 40's or early 50's, and had prostate cancer so he had a catheter and was bleeding a lot; his lower body was very puffy and swollen, he couldn't walk and was needing help with all the toileting, and was constipated and in pain, and you know, we thought, "This guy is suffering, why doesn't he just let go?" We could see he was getting thinner and thinner, and we thought, "What is going on?"
Well, he just loved his ex-wife, his current partner, and his daughter, and they were all there, three women and Will. And he didn't want to leave them, he didn't want to leave this life, this earth. He was still having visits from people, still very involved with his botany - he had done some founding work in that field. It was just amazing that we projected onto him a poor quality of life, and he felt that he still had enough quality of life that he wanted to stay here.
We also project onto people who lose their appetite our need for them to eat. We want them to eat because feeding our loved ones is our way of nurturing them. If they are not eating very much, that normally means they are sick. We want them to eat, and then they'll be better, and then they won't die. And the truth of the matter is, a dying person doesn't need that food, and often will tell you that they don't have much appetite most of the time. They may occasionally have a craving for some food; they will bring it up to their mouth, and know that if they eat it, they will get sick. What they may do is go ahead and eat it in order to take care of their loved ones who need them to eat. They will ultimately be nauseated and sick because the digestion is slowed down, their metabolism is slowed down, and they really don't need the food. So if we have the wisdom to let our dying loved ones set the pace, and really go through grieving of the fact that we can no longer nurture them through food, and be aware that by acknowledging the fact that it is okay for them not to eat, we are also acknowledging the fact that they are dying. Then we look at finding other ways to relate to them and nurture them; being with them, playing and listening to music together, reading with them, talking with them. One of the really wonderful things to do with a person who is dying is to help them do some of that introspective work, and some of that is a life review. Really talking about their lives and the times that meant a lot.
Ben: Would you mind drawing that out a little more? Many people may not know how to do it. Any how-to stuff you can say about that?
Denys: Sometimes you can go through photo albums, sometimes you can just ask them to tell stories about the most important times in their life, where and who have been the important people in their life. Asking questions like, "What are some of the things you are glad or feel blessed are in your life, what are some of the regrets you might have? How have you dealt with some of the disappointments in your life? Do you feel complete?"
Ben: Any ways useful for people unable to talk?
Denys: Yes, that's one of the things that's very important to know: even people who are in coma can hear and take in information. I don't believe people who are dying go into coma; they become unresponsive because they don't have the energy to respond back, but they are certainly aware and taking in. I think a way to be with people who can't respond for some reason is to ask the same questions I mentioned and then leave space for them to reflect silently. What we have found works really well with many patients is to play their favorite music and read their favorite poetry or author to them. Many people where I come from in the South get a lot of comfort out of Bible passages, or whatever may be the religious teachings that they have followed. Those are some of the ways to be with people who aren't responding, and to create environments that are comforting and healing to their inner world. The sense of hearing is the last to go and even though people cannot respond, they can hear up until the very end.
And that is another thing: really check in with people about where they are with their spiritual beliefs. They may have been raised Catholic or Christian or Jewish or whatever, and been away from their religion for years and years, yet when it comes time to die, as one woman said, "Well, I think I'm going to at least reconnect with God, because what if I'm wrong and there really is a God and I really do have to mend my ways?" I think it is important to explore this with people.
There was one fellow I took care of who was just one of the angriest people I have ever met. He was 51 years old and dying of bladder cancer, and he said, "Well what do you expect for someone who has been pissed off all of his life?" And he truly had been pissed off all of his life. He was very difficult to be around. We, including his partner, the woman he was with, tried to manage his pain. We would get one kind under control and another kind would pop up; we'd work on that one and another would pop up, and he could never be comfortable. After several weeks of this pattern, it became clear that he needed his pain, and he needed to suffer; that was part of the way he was atoning for what he had felt was pretty poor behavior with a lot of people. The last three weeks of his life were very interesting. His son, 25, and his girlfriend did not get along; they were like oil and water. He finally asked for a family conference. I mediated the meeting, and he just said to the both of them, "You know, up until now I've been sick, but something has shifted and I know I'm dying and we don't have time for this any more. We have got to learn how to get along." From that time on, the peace that came into that household was remarkable. He really stopped his suffering. And even though he had a tube in his kidneys and still needed pain pills, there was some incredible peace he had come to. Quite remarkable. In his last three weeks of life he became a soft and loving partner and father.
I find that many people, as they go through the dying process, come into it initially with a tremendous amount of fear. I met two precious women who taught me a lot about this. They came to the dying process terrified of what would happen when they died, and also terrified of what would happen when they left their families. I watched them move through the process and as they got to maybe a month before they died, they both had done this introspective work that I'm talking about, the inward work. I can't tell you what exactly they did, but they lost their fear of dying. When one of the women went into the hospital for one last time, she was told, "Your cancer is in remission, but your liver has been damaged; you are in liver failure, and there is nothing we can do for you." I thought that she'd be hysterical the next time I came to see her, because that is how she had reacted whenever she got sick before. However, she was laying in bed so peacefully, with her little trinity, the holy family in one hand, her rosary in the other hand, and the rosary playing on the tape player. She turned to me and said, "Denys: don't tell my children this, they will be so upset, but I am ready to go and be with my God."
What I've observed over and over again is that as long as we stay attached to this world, to this life, it is a struggle to die. It's just like riding a river. As long as we hold onto the banks, there is struggle. As soon as we let go and surrender to the process of dying, there is incredible peace and grace that comes in. It is quite profound. So there is the inward work, the withdrawing from food, the withdrawing from the physical world. One woman told me that, in looking back on it, she'd had cancer for a lot longer than she had known. It was springtime when I met her, and she said, "You know, now that I think about it, last winter I didn't feel like going to church as much. And for the first time in my life I didn't feel like building a fire." She just didn't have the energy to do the things in life that normally mattered to her. And it was only in hindsight that she could see that she was withdrawing from the world and spending more and more time resting and conserving energy. I think part of it is physiological; part of our body wants to live as long as it can, wants to support life as long as it can.
Another thing I see is that at the very end, when people are withdrawing from food, they withdraw to the healthy things that we should eat anyway. The first thing to go are meats and fats, that's the first thing people want out of their diet. And they keep moving towards the more easily digested food, potatoes and rice, and pretty soon they are down to pureed foods, applesauces and yogurts, and maybe ice cream, milkshakes, health drinks, and then pretty soon just juices, and then they are down to Gatorade and water, and then just sips of water. Then they stop drinking altogether. When they've done that, we know we are looking at about five days before they transition. Of course, some people keep eating until the day they die. This whole process can go very quickly or very slowly, just like labor. People usually withdraw from eating or drinking altogether. Some people lock their lips and will not allow you to put anything in their mouth.
As I've watched people withdraw from food and water, I've wondered, "What is going on here?" When we don't eat or drink, we put our body into a fasting state. And what is the purpose of fasting? Of course the first purpose most people think of is cleansing, but the other reason that people fast is when they are going for a spiritual experience. I think that the body naturally puts itself into a fasting mode, and therefore is in an altered state that makes the connection with the spiritual so much easier. What we are aware of is family members telling us time and again, "Oh, they are talking to their brother again, who has been dead thirty years; they are really confused." Again, we are projecting on them what we think is going on, that they are out of their head. We tell the family, "This is normal, he is really experiencing his brother." In Hospice we call it 'visioning.'
Usually when people experience visioning, we know they have about two weeks left. About 90 to 95 percent of the time, they see someone who has died before them. A small percent of the time, they see a living relative, but normally they see someone who has gone on before who usually show up as guides, as people who say, "It is okay, come on over." I went to visit this one woman in a nursing home; she had chosen to spend her last weeks there, and I asked her how she was doing. She said, "Oh, I'm losing my mind, I'm seeing people who aren't really there."
I said "Are they people that you do know or people that you don't know?"
And she said "Well for the most part I don't know them."
When I asked her to tell me about the people she did know, she repeated, "For the most part I don't know them," which told me that she didn't want to talk about the people she knew.
I said, "Tell me about who you are seeing," and she told me that there were these three young men, "sitting up over there", and she pointed high up on the wall in the room.
I said, "Are they a comfort or are they distressing?" And she liked them. She happened to be a woman who liked men and did not like women. I said, "You can just relax. They are really here, and they are here for you, that is part of the process."
She said "Oh thank God! I thought I was losing my mind." And then she could relax into it.
I once worked with a 14-year-old who was dying. She had gotten to the point where, the way she was breathing and the way her blood pressure was, we figured she would be gone within 24 hours. We told the family they could stop turning her (normally you need to turn people every two hours to keep them from getting bedsores). We said don't do that, she's too uncomfortable to be moved. 24 hours later she was still there; 2 days later still there. 3 days later, still there. As I talked about earlier, I don't believe people go into coma, I believe they go in and out of consciousness, and I believe that is when they are doing their inner work. When they open their eyes, you really can see it; their eyes will be half-open and totally vacant, and then they will be totally present again, and they'll look at you. At one of these points, this young girl came back and said, "Mom and Dad, I've met a man from Santa Fe, and he's dying too. He asked me to go with him, but I told him I wasn't ready yet." She lasted for 2 more days.
I hear those kinds of things over and again, regardless of people's beliefs, so I know that there are spiritual experiences that are comforting, and that there is spiritual assistance as people are preparing to do their transition. And if people know that it is okay and nothing is going wrong, but understand that everything is going right, when that happens, they can relax about it.
There was a little old lady who was close to death and the family wanted to make sure everything was okay. They called the nurse to come check her and this lady kind of gruffly said, "I'm seeing people who aren't there. What's going on?" Her Hospice nurse told her that a lot of people have that experience before they died of meeting people who have died before. She explained that those people sometimes show up for them. The nurse asked her if that was something she believed in. And in a very strong voice, she said "No! That's not something I believe in. How am I supposed to know who is alive and who is dead?" She was not at all comforted by her experience, but she was still having it. So there is definitely something that goes on, there is an expanded experience and an expanded consciousness. And we the living project what we think is going on for those who are dying, but we have no idea.
Ben: Can you speak of what you have experienced when a family, a friend, a loved one, is in their awareness and doing the things you've talked about, they've participated in the introspective process, and they are actually present, allowing that dying process to unfold naturally. What happens in the awareness of the loved ones who aren't dying?
Denys: My experience and my observation is that family members who can comfortably be with dying loved ones experience great gifts of intimacy, of being able to be with their loved ones in a way that makes things easier. They grow in their ability to give and share the honesty that people come to in their time of dying. They can be together in ways they may never have experienced before.
I think about this one friend of mine in particular, a very dear friend of mine, a nurse, and her mom was dying. Her mom actually did not want to own the fact that she was dying. Her mom would talk and say, "If I die", but she didn't want to own the fact that she was dying. So she therefore wasn't so available for me to work with directly, to be able to ask, "How are you doing with the fact that you are dying'?" But the daughter was very aware that this was what was taking place. The Mom's sister would show up for her in her dreams, a living sister who lived in another state, and from what she said, her mom would be fitful and restless and then it would be as if her sister would show up and give her instructions, and then her Mom would say, "Oh, I can do that," and would settle down and relax. Pat and her mother were able to talk about all the times they had had together and also how much they loved each other.
I remember a fellow who had some irritation in his brain that was causing him to have hallucinations that were clearly different from the spiritual experiences. It is very easy for us to see confusion vs. spiritual experiences. He had been paralyzed from the waist down for several months. He was restless and agitated and said, "Get me up. I've got to get to work." He had forgotten that he was paralyzed and couldn't move. He had told us in the course of other conversations months before he died that he actually had angels show up for him, and one of the angels' names was Speed Angel. About a month after we had heard about Speed Angel, he was restless and agitated, and his nurse said, "There is really nothing I can do for you, is Speed Angel around?"
He said, "Yes."
She said, "Okay, what I want you to do is to ask Speed Angel what you need."
He did, and after about five minutes of silence, she could see him settling down. Finally she asked, "So, what did Speed Angel say?"
He looked at her and said, "He told me that I'm just exactly where I need to be, and to just relax." He just settled right back and was fine. It was quite remarkable. As you talk to people and they are having these experiences, there are ways you can certainly support them, and utilize them. Being open to their reality allows both the living and the dying to be comforted by expanded experiences.
Ben: You said we can recognize easily the difference between hallucinations and these spiritual experiences. Can you describe how you understand that difference?
Denys: For me, when there is nonsensical talking and restlessness and you can't reach the person, then we know there is real confusion going on, like somebody is disoriented and doesn't make sense. The people who are having these visionary experiences do make sense. The woman I was talking to who saw the 3 young men could be present and her conversation was appropriate and logical; I could discuss this with her. It's like someone saying, "Oh, I've seen little green people," but they are logical in their thought process; they are just having an experience that I can't have. But their language isn't garbled, they aren't confused and restless, they are not irrational in their thought processes. They are present to who you are and often aware that what they're seeing is different from the normal experience of living.
Once someone has withdrawn from food and fluids and started to do the visioning, they are getting much closer to dying. Another thing that takes place is a change in the breathing. That is one of the ways we know someone is getting closer to dying. The person goes into an irregular breathing pattern. Family members can get really upset when they see this, because they breathe, breathe, breathe, and then there is a pause in the breathing; then they will breathe, breathe, breathe, and then there is another pause in the breathing. This pause can go anywhere from 10 seconds up to a minute and a half. It can be very disconcerting and people often think they have taken their last breath. When they start this irregular breathing pattern, the family can kind of get on the edge of their chairs, wondering, "Is this the last breath?" It is very important to let people know they are not going to stop breathing during this irregular breathing pattern. This is a phase that they are going through. It can last a couple of hours, it can last a couple of days, but they will move out of this into what we call a transition phase or terminal restlessness. They will then move into a very deep, regular breathing pattern, and it is from this very regular breathing pattern that they will eventually stop breathing.
Don't be scared by the irregular breathing pattern. Then there is what they call the transition phase. During labor, there is what they call transition, where the woman is just about to move into the active birthing process, and she evidently feels like she just can't get comfortable, she is restless and feels like she can't stand it another minute and is about to jump out of her skin, and then she moves into the birthing. What happens with dying is you have the irregular breathing, which is like labor, and then you move into terminal restlessness, where there is agitation and the patient can't get comfortable, and they are moaning and groaning. When I was in my 20's, I went through this with my Mom and didn't know anything about the dying process. It terrified me; I thought, "What is wrong with her?" You think something terrible is going on, they seem to be in such pain. Many spiritual teachings liken this terminal restlessness to the Soul's last struggle before it leaves the body.
Then people move out of that transition period and into this peaceful place marked by deep regular breathing. This is the last stage of dying and the breathing gets slower and slower, but it is very regular, very even. It gets shallower and shallower. First it's in the abdomen, then in the chest, then high up in the chest, and pretty soon it is just their mouth going open and closed, a "fish out of water" kind of breathing. Then when they actually stop breathing, you can hardly tell it has happened because it is so peaceful and easy. Hollywood shows this gasping for air, and that is not what happens at all. There is something called the death rattle, but it is not that horrible gasping for air, and it's not at the very end. It is caused by the secretions gathering in the back of our throat because we get too weak to clear our throat. We breathe through the secretions, and the living people think people are choking and want to suction it out and get rid of it. We tell them, look at your loved one, observe the fact that they are breathing quite comfortably, they are not struggling for air or thrashing in the bed air hungry; they're comfortable. The discomfort is in you, because you know if you had that much secretion in your throat, you would be uncomfortable. They are fine. Once again we are projecting upon them our discomfort.
Which reminds me of something that is very important for loved ones to know. So often when the dying stop eating and drinking, we think we need to give them IV's, thinking they are dying of thirst. It's important to know that they are doing a natural process and the fasting actually creates comfort for them, almost a sedative effect. If you give people IV's, it brings them right back into their body, into any discomfort they may be in, and the body cannot use the fluid. It has stopped eating and drinking for a reason. The body has its own wisdom and when we override that with our human "wisdom," we only do that because we want our loved one to be comfortable. We do that from a loving place, but the reality is the body can't use IV fluids when it is dying. The body ends up swelling up, getting edematous, and eventually the lungs fill with fluid and the patient is in great distress as a result of something we were giving to create comfort.
Speaking about creating comfort, it is worth talking about morphine. Morphine is an invaluable medication and it's rarely used soon enough. There are different kinds of pain and one of the things that Hospice is gifted at is being experts in pain and symptom control. Very often by the time we get a patient, they have been on the wrong pain medications and their pain is out of control. One of the first things we do is pain control, get them into control. A lot of times, if it is very late in their dying process, and getting them into pain control will allow them to let go and die. When people stop eating and drinking, there are a lot of ways to give medicines without giving IV's or shots.
Ben: It seems to me that a lot of people die in hospitals because family members are frightened. For many people, it's not even the thought that they are going to die here, there can be some acceptance of death, but they feel so incompetent to be around that pain level, and feel so helpless. I think a lot of people make the decision to die in a hospital out of reaction to those fears.
Denys: I think that's true, and I think that's why it's important to get the Hospice team in there, because the nurses and doctors are so expert at figuring out how to treat the pain, figuring out what kind of pain it is, and then figuring out the appropriate medications. Then the nurses closely monitors the patient two-to-three times a week. They are very closely monitoring the pain medication. If a family member has a concern between nursing visits, the nurse is on call 24 hours a day. So the family always has access to a clinician to help them with any problem that might come up.
Another thing that's important is that some people don't want to get onto Hospice because they think "it's a death sentence." What I tell people when I go in to sign them on to Hospice is that our expertise is working with people who are dying, but our bigger expertise is working with people who have life threatening illnesses. Whether you die or not, there are certain issues that are coming up because of this disease process you are in, and we're here to help you with those things. If it turns out that you have a miracle, great! We'll graduate you from Hospice, and off you go. A man who was one of my first patients here in Santa Fe has been off Hospice for nine years now. I saw him at the farmer's market last spring, and he said, "It's so good to see you. I told you I'd make it." And he did.
Through the power of prayer, and chemotherapy, and whatever, he survived. There are other people who do all those things and it is their time to die. We have to learn not to see death as failure. To me, death is not a failure. Death, when it comes, it comes, and we all have our time, and yes, I'd fight it, just like anybody else right now, and then once I'd fought a good fight, then it's time at some point to realize that your time has come. That's a difficult choice. Who was that fellow who wrote that wonderful book, it was so profound for me....yes, Ken Wilber. He wrote this fabulous book, Grace and Grit. He captured it so beautifully, that you can do all the spiritual work and all the physical work and everything, and if it's your time, then that is so. In that book, his wife fought as hard as she could and then she came to a place and said, "I'm done fighting, it's my time," and by dying when and as she did, she left a gift that helped the world become a better place. I've certainly learned a lot from her death and what he wrote about it.
Ben: Me too. Now you are coming back to a topic that you spoke about at the beginning, the similarities between birthing and dying. You are saying that there comes a time when it's time for dying, and it is so common in our culture to think of death as failure. How do we need to understand death as an antidote to that sort of negative education that we have all had; how else can we be with it as part of a natural process?
Denys: I have this wonderful video that I wish that everybody in the world could watch. Elliot Rosen - a social worker who worked in Hospice - made this phenomenal video, Conscious Dying; Preparing Now for a Healing Passage. He interviewed Elizabeth Kubler Ross, Ram Das, Stephen Levine, and people who were dying, people who had had near death experiences and out of body experiences; it is just a phenomenal video. I use it in my workshops all the time. He has a bit of text in there, attributed to the aboriginal people according to the woman who wrote the book Mutant Message Down Under. In that culture, when a person is born, the tribe surrounds them and celebrates and says, "Welcome to the world, we are here to support you on your journey." And then the person comes, and they do their life journey. And at some point they realize that it's their time to leave, and they make that known. There is again a celebration, and the people say "Welcome to wherever you're going, we are here to support you on your journey." And they do their celebration, and then they leave that person alone, and that person sits down and eventually just transitions out of the body. Now that's the ultimate. We've heard about indigenous people, where the old people would go out into the wilds when they knew it was their time to go. They would leave the tribe and go out into the woods and whatever. Perhaps us modern folks would tend to imagine that they went out there and got eaten by animals or suffered in cold or whatever, and I'm beginning to think, as I learn about these other cultures, that they knew a way to bring their death about naturally, and that they just knew it was time, and that's where they went, and that's what they did.
My sense is that if we are connected to Spirit, and we can do that meditative process when we're strongly connected, we have that ability. And there is the other part of it, like the little old lady I told about who asked, "How can I tell the difference between the living and the dead?" She had actually chosen to leave here, and she just stopped eating and drinking. You know, we don't need to do Kevorkian and take all these drugs and do all this stuff. All you need to do is stop eating and drinking, and you will eventually die.
It can take a long time, but usually not. I worked with one woman who finally said to me, "How can I die?"
I said, "It's important that you stop taking in anything whatsoever," because she was still sipping on Gatorade. So she had her daughters at that moment take everything away from her bedside. We kept swabbing her mouth with water for comfort, and turning her, tending to her. Because of her illness, she had tremendous amounts of fluid in her body and she still took three weeks to die.
The greatest mystery to me, I have to tell you, in all the times that I've observed death and dying, is that we pretty much choose the time of our death. How it is that some people can get out of their body like that, at the snap of their fingers, and some people do not seem able, like this woman. Even though she seemed to have all her ducks in a row - she had everything taken care of and her daughters at her bedside, she seemed to have cleared all her unfinished business, and to have done her spiritual work - she could not get out of her body. I don't know what that's about. I've seen people linger or take longer to die than we, the living who are watching them, would expect. This one woman took an amazing amount of time. She finally died on August 4th, and it was afterwards when her friend was going through her papers, it was discovered that her husband had died on August 4th fifteen years earlier. People will hold on until a certain date has passed, a birthday, a graduation, some date special to them.
The most common time of death is between 4 and 6 a.m., just as it is the most common time for birth. And it is also - if you look at some of the spiritual teachings - the time when people get up to do their spiritual meditations. It's the time that the veil between this world and the next is the thinnest. So it makes total sense that that's when people leave and when they come.
Dying is not going off into a void, and it is not something to be feared. I think part of our biggest fear is that there is tremendous suffering. I know at some point we get lifted out of our bodies and we don't actually suffer what happens to our bodies physically. I think the movie 'Ghost' demonstrates it well; that guy gets stabbed and then he is lifted out of his body. There are books that have been written by people who leave their bodies, and there is a wonderful article by Joy Allen, which appeared in a Spiritual Emergence Newsletter, (I don't recall which issue) called No Edges To My Loving Now. It is the story of a woman. She and her husband were both in an auto accident, and they both died. They both went up to the light, and she was told she had to come back. And he stayed. And they did that together. She came back and woke up in the ICU; she knew he was dead. The family was afraid to tell her, and when they did, she already knew about it. She really was in a blissful state for a while, from the out of body experience, and thought everything was okay. What's hard is when we come back into our physical bodies. Then we're faced with the suffering. She talked about it - the three months into hard physical rehab, and how she went into a very deep depression in the third month because she missed her partner. She had the knowledge of where he was, but her human experience was that she had a broken heart and was grieving for her partner. So all of that is present. It's knowing that death is okay and a transition. For us, the survivors, there are our attachments that create our suffering, and our needs on the physical plane.
We only get caught in duality in this physical world. There was a 42-year-old man. Sean, who had a very rare disease, and all the arteries in his body were inflamed. The circulation to all his organs got impaired and he eventually died from it. For a long time he was fighting it, and was seeking all kinds of treatment, which of course you would do at that age. He had been married to this friend of mine for about three years; they had a three-year-old son and they were just this incredible couple. He was so active, one of these people who really embraced life. The first day I went to enter him into Hospice, she said to him, "You need to not get up into the wheelchair to the bathroom anymore, we've really got to face the facts. This process is coming to an end and we're not going to beat this." Together they came to that place. By the time I got there, he couldn't move his body. The circulation to his muscles had been impaired. His wife would hold the glass to his mouth, he could suck on a straw, but the rest of his body just wasn't working. She and her son were living upstairs and he was downstairs. She came to this place of saying, "Enough running up and down stairs, its time for this family to come together." She put his bed into the living room and had the son's bed set up right next to theirs and that became their living space. His son could get up on that bed and play, and he could say to his dad, "Daddy I'm really going to miss you," and they could talk about the fact that he was dying. The dad could say, "I'm really going to miss you, too." It was an extraordinary thing that they created when they came together. They told the story in the services afterward of how friends were gathered there one night, and in the room the presence of love and the sacred was absolutely palpable. Sean looked up and said, "You know, there really are only two emotions in the world. One is love and one is fear." And he said "I've spent most of my life, including up until recently, in fear. I know now what it is like to live in only love, and it's really the only place to be."
That was his experience, after he surrendered to the process. He really wanted to stick around for his son and wife, and he finally had to surrender to that process. The amount of love and grace that came in, the peace that came in for his Soul was very beautiful. He died in an environment where he was loved and supported; that's how he went out.
Ben: It's all the same question in different words. You mentioned Wilber's book; there was an article in that book, written by his wife, that inspired the question our magazine has been asking, "What kind of help really helps?" For the people who are not dying right now, what help really helps me to be in the presence of that which is dying?
Denys: To really let them take the lead. Some people are going to want to be active and conscious in their dying process, others are not. Like the woman whose mother didn't want to talk about the fact that she was dying, and her daughter knew that if she talked about it, she would probably go into a depression. So it is about allowing someone to be where they are. Also to know there is nothing to fear. Allow yourself to be present with what is rather than caught up in your fears of what might be.
The same thing happened with my father; he was a doctor, he was dying. It was clear to me he was dying. I sat every night in the hospital with him probably for about a week before he died. At one point I said, "Daddy, do you have the sense that you are dying?"
He just looked at me and got furious. He tended to anger easily, and he said, "No, I'm not dying - well, of course everybody is dying, but I'm not dying anytime soon." And I thought, okay, clearly we are not going down that road.
I asked, "What about your funeral, what do you want to happen when you do die?" And that he could talk about for hours. That's one of the things we can do with people, to say what kind of things would you like, how do you want to be remembered? A lot of times they'll want to plan it. That's what my dad did, he talked about his funeral in detail, he picked the place, the music, the readings, etc. So it is allowing a person to take the lead. You can ask a bit, but allowing them their space, showing where they want to go. For loved ones left behind, it is important to get support for your grief, away from the person who is dying, letting the grief out, letting it happen. Lots of times we get so busy taking care of the sick one that we forget that we have grief issues, and we're going through our process. We need to be aware of our response to what's happening and our needs, and that we need support. That includes eating right, taking care of ourselves, doing our spiritual practice, and being with loved ones who can support us. So as we are giving support to someone who is dying, it helps to have someone giving support to us for our living.
Ben: You have been describing disease differently from the modern medical paradigm which makes disease "the enemy to be fought." I'm hearing you say that, as the dying process gets engaged, it stops being useful to make an enemy of a virus or tumor. You are saying that that whole reality falls away.
Denys: I think Steven Levine said it beautifully, again in this video I mentioned. So often people get caught, especially with new age thought, thinking that we are responsible for our illnesses. People then go on a guilt trip. The minute you start being responsible for your illness, you have made an enemy of your illness, and you send fear to that illness, because it is something you feel you've done wrong or feel guilty about. He said we are not responsible for our illness, we're responsible to our illness, and therefore, if it shows up, what is it we need to do for ourselves in response to it. That way you can move in concert with this illness and look at the lessons that are there, look at the experiences that are there.
"Responsible for" means that somebody feels that they caused their cancer. Especially in the earlier days of the new age, where the message was if you just do your spiritual work and your emotional clearing, and if you do it right, then you won't have this illness. The reality is, all six and a half billion of us on this earth right now are going to die in the next 110 years or so. Death is going to be part of our experience. So how do we respond to that? The "responsible for" is the part that says, "Oh my god, I caused my cancer because I ate the wrong thing, or I'm angry at this person, or I haven't been spiritual enough," or the patient who said, "I've been pissed off all my life, no wonder I have bladder cancer." He felt like he was being punished and had created this whole thing. Now certainly illnesses are metaphors, but he was feeling "responsible for." This is the way that I see the difference: "responsible to" means, okay I've got this illness, now what can I do to maximize or gain the most from whatever it is this illness has to teach me? Is this the time for me to really say, "Thank you, god?" I recall a woman who had a cancer; it was time for her to reprioritize and reorder her life, which she did, and her cancer went into remission. Later her cancer came back a couple of times, and she is saying, "You know, it's been a real friend to me, because it keeps coming back and reminding me, which way are you walking?" So it has become her barometer. Eventually it will probably become her teacher about how to leave this world. So "responsible for" can lead you to needing to feel guilty and as though you must get rid of things, and "responsible to" is looking at how you can work with whatever has come into your life.
Ben: If you had one gift to give those working with the dying, what would it be?
Denys: To know death is not a failure and dying is not something to be feared. My dear friend's mother was dying in a nursing home. Her grown children were with her. I was staying in touch by phone--doing Hospice long distance. I called one day and one of her daughters answered and described her mothers' breathing; I knew approximately where she was in her process. So I described the stages she would be going through in her remaining hours. Later her daughters sent me a card that meant so much and said it all. She said she was just getting ready to leave her mother's bedside because of her fear of what was coming next. Because I called and she knew what to expect, she was able to go back to her mother's bedside and witness her dying in grace and peacefulness, with courage and beauty. She went on to say that because she went back to that room, and saw what she did, her view of dying had forever been changed. That is my hope for everyone.