A Conversation with Nancy Telos, Chaplain

Continued...

Q: So are there things families can do to help the dying person through this withdrawal, through this transition?

Nancy: Well families can first know about withdrawal, that patients need to do that and that it's not personal and not to be afraid of it. Families can also recognize that there's something called terminal agitation that often occurs in the last few weeks to last few days. It's often confused for pain. It's upsetting the families if they don't know about it ahead of time because there's tossing and turning and this is what the nurses liken to being in labor. That it's work to leave your body, it's work for most people to leave this life. But there's pretty good evidence that if someone knows how to create a kind of meditative, prayerful state in the room the agitation subsides and the person calms down. It helps if the family can just be with the person and not try to fix things. Not try to address the pain beyond what is necessary, and not try to force the person not to be restless. If they let them do that work, the patients will calm down a great deal. If the dying person doesn't want to be touched, the family can be by the bed and let them know they're there, but not necessarily be touching them. Occasionally, with serious illness the skin becomes exquisitely sensitive and touch can hurt.

But most people do their death the way they've lived. If they're essentially private, if they're introverted, if they like time by themselves, they're probably going to want to die that way. And if they're extroverted and like people around, then they're going to want their bed circled with folks, talking and just carrying on–just being there with them and with each other. With patients there's a little bit of a concern that they're able to articulate what they really want and not just what they think their family can handle, especially with younger people who are dying. They'll do what they think their family wants until their family is more ready. They'll stay alive even as long as they can.

Q: Is there a point in the process where, even people with great faith, begin to have doubts and questions?

Nancy: Yes. I think the most likely place that's going to rear it's head is a period of time after the medical community says we can't treat this anymore. It's difficult for people. We have an almost blind faith in the power of modern medicine. It is really blind, you know, because our cure rate isn't that good. And I would say that most folks, despite or maybe because of a deep belief about afterlife, will at some point hit a pocket of doubt. It's very important at that point not to just reassure or restate those beliefs-which is the tendency because people want you to feel good. But what makes people feel better is to explore that doubt. And of course, until you have gone through it, how would you know for sure? People often need to recommit to their beliefs or explore that there are other possibilities. If there's fear people need to look at the source of their fear.

Q: Let's discuss one of the families we're following in the documentary. I know you're very close to Kyle Cook. He's only seven years old. How are you working with him to help him cope with the fact that his mom is dying?

Nancy: Loving him. Listening to him. Playing with him. I have a great time with Kyle. He's wonderful. He's creative, intelligent, curious, he's direct. He's very aware, I think. He's trying to understand in his way, what his family wants from him. But I think he also in some ways feels outside of it. Perhaps not sure of what it all means or where it's all going. Not knowing why he doesn't have the same relationship or activities or time with his mom or dad that he used to have. In a way, he's trying to come to terms with his shadow or smoke. It's not tangible to him yet. And what's tangible to a seven-year-old isn't the same as what it would be to you or me. They don't think the same. Their understanding of death is not the same.

Q: How does Kyle understand death?

Nancy: At his age death is not permanent. Children go through phases in their neurological as well as psychological development. And it's not until usually about eight or nine that kids get what they call cause and effect thinking, and their sense of time gets more acute then. A week doesn't mean anything to a seven-year-old. It's either now or it isn't to some extent. That's really true with younger children around James' age. If they can't see you, if you're not in the room, then in a way you don't exist. They can't abstract. So Kyle's out of that phase, but if someone sat down and said to him, "Your mom's dying, Kyle" or "Well, now she's going to go to heaven," or "You'll be with her again" it doesn't mean a lot to them. At the most it might mean, "Well, maybe then she'll come up in the spring like flowers that bloom annually." So to him it's a struggle.

Children are fairly self-referenced usually, they're also loving, but the show is about them. And they want your attention and they want to be recognized and they want to show you what they did at school that day. And they get fearful when that gets interrupted. And they get fearful when they have one parent die because a lot of times buried in there is a fear that the other parent will die. And they know they need you. And a lot of those things can be addressed as directly as a child will allow it, they can be reassured that they're not going to be abandoned. They're not going to be alone. That they're still special. That they're still important.

So my job with Kyle right now is to find a base with his school and with his neighborhood and with his family that is continuous for him through this last stage of his mom dying, through the funeral and afterward. He needs continuity. He needs someone there for Kyle. And usually the immediate family members can't do that very well because their suffering is so intense and their grief is intense that it consumes their energy and time. I mean that's sometimes a point of guilt for immediate family about kids but it's just the reality of it too. And there's no need to feel guilty, because it takes everything you've got to be there if your wife's dying.

Q: That's got to be so hard, to watch you spouse die.

Nancy: It's hard for people. I don't know which is more painful in a way-to watch someone you love to sort of disintegrating in front of your eyes and learn how to stay with the pain and loss and what it means to your life afterwards as a dad with two small boys. Or if it's harder to be the patient and see it happening and not being able to be there for them. It's hard all around. And it's perhaps a little bit more difficult, now I'm going to say this boldly and bluntly, it is a lot more difficult for most men to settle down to that job. Over 80% of the caregivers in this country are women. Not that men can't do it. And not that there aren't some stunningly beautiful exceptions to that rule. But I don't think we've done a lot to help men even know how to be there and not just try and fix it. It seems to fall to women mostly in the end to do that care, and hopefully that will slowly change.

Q: How hard is it to be a caregiver?

Nancy: How hard is it to take care of somebody dying in your home? It's very hard especially when you get to the point where there has to be twenty-four hour care, seven days a week. It's physically demanding. It's time demanding. It's energy demanding. It's emotionally draining. And in some families there isn't enough support. Fortunately for the majority of families it's the other problem-there are so many people that they actually put signs on the door that say, "Short visits only between two and four in the afternoon," because dying people have limited energy. And as much as they like to see people and say good-bye or visit, there's a limit to what they can do. So they have to measure it out, and they often need support doing that cause it's hard to say no to people.

And it's very important I think for caregivers to feel like they did their best. That they provided all that they could provide for that person. And that helps. And hospice helps do that. It's also very important for caregivers to be affirmed. That their grief and their feelings are valid. It helps to know what to expect at different stages of grief, and to know if they're getting in trouble with grief. If they're getting stuck in depression, or if they're getting stuck in denial or anger. And to offer them ongoing support and affirmation. You know that they are, at least temporarily, cut off from that person they liked going out to dinner with, or making love with, or going to the movies with or you know. And, and that hurts. There's just no way around it.

There's a lot of research showing the kinds of physical and emotional problems people get into the first two years after a death in the family if they don't have that support. I think one of the biggest advantages of hospice is that through caregiving, people are working through their grief and they do much better afterward.

Q: Your work must be very difficult at times. You deal with so much loss. How do you do it?

Nancy: Well, I trust that they're all right. I trust that it's a transition. I've had many experiences of life after death with other people and I don't have any doubt about that, so I'm not worried about that. I have no particular point of view to sell, it's just enough for me to know that. I also can't get right with myself if I don't love them. And I feel extraordinarily privileged at the radiant beauty of most dying people, because most of them cut to the chase. They know what matters and that's what they want to focus on. And all I'm trying to do is help them do that. That's an honor to me. I wouldn't do anything else. I like the focus, what Cary Jones called getting to your bare essential self, to me what else is there? I mean, yes we have to go buy cars and get the oil changed and get to groceries all at but what for? What's the point? That's what dying people are looking at. What was the point? Did I do it well? Am I done? Is there anything undone that I need to address?

Back to Nancy's biography