Ed Gulley was in my head last night, I saw him briefly early in the evening, and he had my mind spinning through the dark hours, he has that effect on people.

At one point, I cursed at him, and told him to get out my sleep. He said I was just another flatlander.

Ed knew how to laugh at himself, and he knew how to laugh at me.

I was thinking heavy thoughts, asking questions to which there are no simple answers.

What do we owe the dying? What promises can we make? What promises can we keep? When should we let go? How can we let go?  Is it all right to want them to die?  How can we put their needs and rights above our needs and rights? 

I remembered that I made promises to Ed that I have not talked about or written about, promises I do not know if I can keep, promises that kept me up all night, just as Carol is every night, sitting alongside of  him, asking him what he needs.

I need to write about this, or it will eat away at me, unkept promises corrode the soul and torment the spirit.

When Ed and I had our final lunch towards the rear of the Round House Cafe – it was one of the last times he went out to eat, and the first time I realized that his spirit was being taken over by his encroaching tumors.

He’s leaving, I thought, the Ed who is my friend is going away. He always had that gleam in his eye, the devil in him. It was gone that day.

But he was not yet gone. He was clear and honest. He asked me to promise two things to him:

One, that I would do everything in my power to make sure that no efforts were made to prolong his life, either by medical or any other means. He had rejected surgery and chemotherapy.

He wasn’t going to see any more doctors, or take any more MRI’s or X-rays, do anything that would keep him alive for another minute.

He wanted to die quickly and naturally, he said. No machines, no extraordinary efforts of any kind to prolong his life.

Then, he said, he wanted  me to promise that I would do whatever I could to make certain that the people he loved – his children, grandchildren, friends – did not  see  him if he was emaciated, incoherent, skeletal or out of his mind.

He didn’t wish to be remembered in that way.

Why, I asked him, was he asking me this? I wanted to be sure.

Ed said he feared that the people who loved him the most might not accept his death, might fight to keep him alive, might not help him to die quickly when there was no longer any reason to live, no quality of life, no meaningful work or thing for him to do.

It was ironic for me to hear this.

Ed is a powerful man, he said he was always too busy to spend as much time with his family as he wished. And it seems the people around him could never get enough of him, everyone wanted more.

I laughed with him about this one time, I had this recurring feeling that the people in my family often had more than enough of me, and wanted less.

I promised that I would do everything in my power to make sure his life was not prolonged, and that he ended his life in some privacy and dignity, although I said that was really not going to be up to me.

Ed fought right up to the end to be creative and productive. That was life and death for him.

When he had the use of only one arm, when he couldn’t sit up, he sketched and drew and painted vases and jars, many of which we sold here on the blog. He told me that as long as he had something do or make, he could accept what was happening.

When he couldn’t, he wanted to go. He was, he told me, done.

I mean, you have to love a man like that.

Then, last week, he went further. He grabbed my hand, looked me in the eye and pleaded with me over and over: “Please, help me die!” We were all shocked by this, but it was never mentioned again. I did not promise to do that. I wish I could.

Although no one spoke of it, it did hang over me like a cloud. Everything was different.

Now, he is just where he did not want to be, where I promised I would try to keep him from being – incoherent, dying, emaciated and almost unrecognizable,  unable to say more than a few words at a time, most without real meaning or understanding.

And there is a stream of relatives and visitors into the farmhouse, talking to him, joking at him, urging him to be strong and brave.

Is it really for me to try to dictate how he is cared for, whether or not people should let him go? Or come to see him?

It’s not a hard question for me. The answer is no.

Yesterday, on her and Ed’s blog, Carol wrote that her daughter Maggie was struggling with some of these questions.

“There is something that is holding her back from letting him go, or at least telling him it is OK to do so,” she wrote. “I am convinced that he won’t move on until she gives her permission, so to speak. The nurse agrees with me. I know it is going to happen anyway, but a blessing goes a long way here. Of course none of us want it to happen, but we know it is gong to no matter what we want.”

I don’t know if Maggie or anyone has that power, it does seem to me the job of God, if he exists.

Carol seems puzzled at times over why Ed can’t make sense when he talks and doesn’t seem to be rational.  She is surprised when he is restless and moans for hours.

On the one hand, she knows the answer:  it’s the cancer.

On the other she doesn’t want to believe it, so she is constantly looking for signs that it is something else. She is, like her daughter, waiting for him to make sense again, to be Ed again, hoping against hope for signs and miracles. She says she doesn’t understand why he is behaving in this way, but Carol is way too smart for that.

She knows, of course.

Myths about hospice.

I suppose in a way, hospice is the elephant in the room, the quiet partner in this.

There are many myths about hospice. The biggest is that they will kill people in some way.

This is false.

Hospice nurses and doctors do not kill people, that is the very antithesis of what they are about. For one thing, that is a criminal offense in New York and every other state.

For another, that is not their purpose.

They help people accept death in comfort and peace, away from hospitals and nursing homes and machines, where no one can really control the way they die. They ease pain and support families.

The other myth is that morphine is used to kill people. It isn’t and it doesn’t. It allows people to rest without pain, and allows nature to do the rest. Morphine helps people to sleep and be as close to pain-free as possible, and slows down the movement of the organs and the heart.

Doctors can’t or won’t do any of those things, neither will hospitals or nursing homes.

Morphine is the best and sometimes only friend of the dying, it helps them die in comfort at their own pace in a place they want to be. It is a “blanket of comfort and rest,” one aide told me once.

It is not used to kill people, but to help them die in the best possible way. Every hospice nurse I ever met said people should not be afraid to use it.

Hospice does not decide when people will die or how. Their mission is comfort and support.

There are, of course, things people can do when they wish to ease the suffering of the dying.

They can stop feeding them unless they ask, they can increase the doses of some medications, including morphine, to stop sleeplessness and pain, the thrashing and crying out or moaning that is a part of brain cancer.

They can stop asking people if they want something to eat. If they say no, they are ready. There are all kinds of small and loving ways to help people die.

They can keep them quiet and promote rest. They can make sure they sleep. They can make sure everyone sleeps.

We can’t stop people from dying, but we can make it easier for them to go. And we can, of course, let go.

The hospice nurses all swear that people are most apt to let go and die when the people they love tell them it is all right to go, when they give their blessing. I can’t explain this, but i know it’s true, I have seen it again and again.

When families fight death, the dying fight it also. Nobody wants their last acts to be a disappointment to their partners and children. Nobody wants to feel like a coward in the face of death and in front of their children.

I have no idea what is keeping Ed alive and suffering in this way, I am not a doctor or nurse or caregiver. I am only there for short periods once a day, at most.

If he needs to be told to let go, I hope he is told that, and I hope he lets go. I have no doubt that what he wants is to die as soon as possible, that was what he always wanted.

When families stop fighting death, so do the dying. It sounds too simple to believe, yet it seems to be true. The hospices nurses know, they see plenty of death.

So here I am, like Carol in some smaller ways, in a place I did not expect to be, having made promises I do not know how to keep. I believe strongly, as I have written, that these are not my choices or decisions to make, and nothing that has happened has caused me to change my mind.

I sometimes want to yell at Ed and ask him what the hell he was thinking asking me to make promises like this? What magical powers did he think I possess”

So how can I keep my promises to Ed, short of storming the farmhouse and giving speeches to everybody, jumping into somebody else’s pond rather than trying quietly to be helpful? The very last thing i want to do is roil their troubled waters.

This is a sacred time for them, I am outside of this circle.

The Gulley family are good, honest, compassionate and loving people. They will get where they need to go.

So my own soul is restless with this responsibility to speak for Ed and be his advocate.

The one thing i can do is write this and get it off my chest, put it out into the ether, where it will live and die. If I can’t  keep these promises, I can acknowledge them right out into the open, where I think they should be.

I’m not sure about God, but I do worship Mother Nature, and she will know what to do and when to do it. she certainly knows when to let go.

Ed is dying, whether it is clear to everyone or not, and there is no hospital or nursing home or force on the earth that can stop it.

I will trust in that, it will keep Ed’s promises even if I can’t.