JUST BEING THERE

One of the absolute maxims of life is that all of us die. Rich, poor, famous, infamous, it is a given reality. We are born, live our lives and then we die. In our American culture, we don't do it so well, however we interpret what "well" means. We fight it and well we should. Without waxing too philosophical and say let us not fear it, maybe to say, "we are not going gently into the night." I've always liked William Cullen Bryant's take on death.

So live that when thy summons comes to join that innumerable caravan which moves to that mysterious realm where each shall take his chamber in the silent halls of death.

Go not like the quarry slave at night, scourged to his dungeon, but sustained and soothed by an unfaltering trust, approach thy grave like one who wraps the drapery of his couch about him and lies down to pleasant dreams.

My friend Mary (not her real name) has cancer. About ten years ago, the insidious disease struck her with a vengeance and the fight began. At first, I was little involved as many jumped in to help but then as often happens, the good intentions faded away. I don't want to be too hard as people are human and good or bad, us Americans live busy lives and few know how to prioritize for the best. And, let's face it, our attention span is measured in nano seconds. In fact, this was one of those "hard to get use" to scenes when I was a hospital chaplain. Our patients were, as a rule older, retired military. One program I remember all too well illustrates this: we would have a very sick patient, often at death's door, loved ones would be everywhere which was great. We even had a special room set aside for them to gather where we could meet and talk strategy, plans of action and various medical directive sorts of stuff by the docs. As time went on, they would disappear little by little and if the patient stayed with us for awhile and inched closer to death, it was not unusual for us to have to hunt for the family when the time came. This isn't to place blame or say how terrible it is. It just is.

Getting more involved with Mary in her treatment has brought an entirely different attitude about how to help the sick, especially those whose very life is fighting to live life. Mary's job is to stay alive. And, she has done it for ten years under the most trying of circumstances. Against all odds! Here's what has happened to her during that time--at the beginning, she was at stage 4, which is a death sentence in most cases. Her husband, a ne'the well' in my view couldn't step up to the plate. It wasn't that he was a bad person, simply that he couldn't handle it. And, without belaboring the point, Mary had to make a decision whether to fight him or fight for her life. She wisely chose the latter. Mary shouldered on.

How it has affected me is a strong realization that those of us who assume roles of help need to do it very intentional as the care of those like Mary have to be the primary concern. Too often, the helper becomes the attention. Those who witness the fight, are called upon to drive, to look after; fetch food, drinks, reading material, the "beck and call" of the Marys of the world. And, we need to do it with a rationale which gets "us" out of the way. No easy task. It is a philosophy of simply, being there.

Unfortunately, there is a tendency to want to cogitate our navel, to say how hard this is on us, how difficult. My experience with Mary makes me realize that this is not a "rationale" approach. The call is to Mary, not us and if we can't get out of the way, find something else to do.

Recently, I sought advice from someone who has been through the awful pain with a loved one until that moment when they departed this life for the next. Here is pretty much the dialogue. Their advice was simple but profound.

When you were going through the final days with your husband, how did you hold up?

Well, it was not a matter of me holding up. It was a matter of how to make him comfortable.

Did you know it was his last days.

Yes, I did.

How about other members of your family?

Well, we really didn't talk about it but I think they knew. We all felt a tremendous need to be around. My husband never voiced it but from the time he received the "end" diagnosis, he didn't want to be alone. I think that's natural.

What did your children do?

(Laughed) We did the best we could with the idea of making Phillip (not his real name) comfortable.

What about treatment?

We went until it became obvious that there was truly nothing else to do.

How did you determine that?

To be honest, I think that the doctor more or less determined it; most doctors have a plan. It is what they do. While we may be cowering in the corner, they have a plan of treatment. And, this is what my husband responded too. He did what his doctors told him to do.

So you were pretty impressed with your doctors?

Yes, in a sense. Phillip needed assurance that it wasn't just going to be OK. There was a fear of the future. Along with the rest of us, he would not walk alone but with his trusted physician. Not a small thing. I have mixed emotion to be honest.

In what way?

To be honest again, I would rather not share that, just a view that I'm working through. I can tell you this though: I think it was probably the pain more than anything which made Phillip and all of us feel the hopelessness. There's no giving assurance around the pain. Trust me on this. The awful pain.(shakes her head and gives a deep sigh)

I have read somewhere that the worst aspect of the dying is that patients fear the pain.

I don't know about that but sounds right--he was in such pain and it just cut us to the core. (begins to sob)

What were some of the difficult times if you don't mind talking about it?

In addition to the pain, I think it was friends who wanted to help but couldn't.

What do you mean?

People's motives are good, they want to help but often they don't and can't.

How did you deal with it?

At first I didn't but then later on, I became the gate keeper.

What brought you to that point?

To be honest with you, it was a single incident. A neighbor who was also a cousin came over and just stayed and stayed. He wanted to talk about old times and situations and it got unbearable. Finally, I intervened and said, "Phillip needs to lie down and then I'll come back in and talk." I could tell my husband was at the point of exhaustion and exasperation. In fact, I got him to the bed and he just sat on the side of it, could not even lay down. I'm sure that our neighbor thought he was doing the right thing but it was opposite of what we needed.

Any other things that stick out in your mind?


Well, there is one thing and I hesitate to talk about it but it needs to be said. Don't talk about religion. Well, maybe I should qualify that somewhat. If the patient asks about it OK but I think that religious people, especially if they are conservative have this need to talk about it. One incident we had was so bad, made my husband so uncomfortable. I don't think I should talk about it.

It might be helpful to someone.

Well, this person felt the need to really talk about my husband's relationship to God. It was so inappropriate at the time and created such tension. Conservative religious people feel like this is some kind of commandment. I guess they see it as their duty. What they don't seem to understand is that it is an opinion on their part. Think about it? How can God be so arbitrary? He heals one, he doesn't another. To me, it has always taken away some of the power of God to insist that He is so involved with us, so selective in critical situations. I just don't believe it and in a sick room, no patient wants to be forced to deal with such issues. I surely know my husband didn't. This was a good person and I know he felt bad because he had to feel the tension. I felt for him but I felt more for the uncomfortableness of my dying husband.



So, if you could give anyone any advice about what/how to do or be with their loved ones in terms of caring, what would it be?

I think just "being there" with doing what the person wants as best you can determine, whatever that is. If it is even necessary to "be there" needs to be determined. Can you sit and not talk or talk if the person wants too but leave it at that. I'm discovered that most can't . And, a last thing, the sick person definitely does not need to be worried about their responses or lack thereof.