LESSONS
FOR THE LIVING
AN
INTERVIEW WITH DENYS COPE, RN, BSN
Based on her book "Dying:
A Natural Process" ©2000
Click
Here for More Book Information
Denys:
Well, I'll just start in with the talk that I usually give to people. I've been
a Registered Nurse for over 35 years, and a Hospice nurse for about 16 years.
Several 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 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 many 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.
©2000
Denys Cope - All Rights Reserved
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