Note: I believe Ed Gulley is actively dying, and so I no longer think it appropriate to take photos of him.

I saw Carol Gulley’s blog post around 11 a.m. this morning,  it was powerful and honest and important. It went straight to my heart.

I called her right away, and I said “Carol, that was a beautiful and amazing  post this morning, and I wanted to tell you how important it was for me to read, how brave and authentic it is.”

“Maria and I would like to come over and talk to you about it, if that’s all right,” I said. ” I think I can help you.”

She said sure, Carol is always startled by compliments and has little or no regard for her great strength and  worth. Ed woke up in the middle of the night, she wrote, and begged her to tell him why he stays in bed all the time, and why he just can’t get up and do all of his chores, and all of the other things he needed to do.

Carol never asks for help, but I know a call for help when I read one.

Carol never once imagined in all of her life that she would be in the position she was in now. I have never interfered with any of the decisions she or her family has made, but there were times that I just felt i had to offer to help.

This was one of them.

“Again,” she wrote in her post, “I told him he needs to build up his strength and he said I am lying to him…why won’t I tell him the truth?”

Carol has at times been deeply wounded by Ed’s lashing out at her, telling her she wasn’t telling him the truth, a common symptom of late stage brain cancer.

Ed kept asking her “what is wrong with me?,”  she wrote “I try to say things that he can understand but does he really not remember he has brain cancer? I couldn’t bring myself to say the words.”

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If you ask Carol, she will always say she is fine.

She wasn’t saying that today, and she wasn’t fine. When Maria and I arrived we all sat down at the kitchen table for a talk, an important one for all of us, a hard one for all of us, but especially for Carol. She looked crushed, grief-stricken.

He is slipping away, she told us,  And she is giving him morphine every day.

This is tearing her to pieces, even as she knows it is what she wants to do and ought to do. What Carol is doing is one of the hardest things any human being ever has to do, and that is to help someone she loves – in this case a partner of 47 years – die.

She can hardly bear the thought of living without him. She feels enormous guilt.

These are the dark days for Carol, and there is no sugar-coating it or softening it. It will get much worse before it gets better. But, I think she can see a bit through the fog and knows it will be one day be better.

“I hate myself for feeling this way but I look forward to an end for his suffering,” wrote Carol,  “and I am reaching for the right words to tell him so. I feel that telling him it is okay to go is not enough…”

I felt it was very important to speak with Carol and I was grateful that Maria came. I thought I might be able to help her with the words she is seeking.

Carol is very easy around Maria, easier sometimes than she is around me. Maria’s presence would make what I had to say easier. And Maria has her own  wisdom to share. She just radiates warmth and empathy.

I told Carol that I felt it was important for her to find the words to tell Ed the truth when he asks.

I said I was not trying to tell her what to do, just offering help in how to do what she said and wrote that she wants to do. Words are my  business, my life. I know Carol is struggling for the right words at such a time.

It will not be long now.

I told her that my first great lesson in hospice was to never lie to anyone who was near death, to never suggest things would be better, tell them the were fine, to never offer false hope or suggest good news was just on the horizon.

Sitting with Ed these past weeks every afternoon, I see again that many people have no idea what to say to death, or to people who are dying. I never did either, until I was taught. We all hide from death, and when it comes, we are struck dumb.

A few days ago, one of Ed’s oldest friends came in and roared, “Hey Ed, you look great today, so much better than last week! Congratulations!”

My jaw dropped a bit and Ed stared at him in bewilderment. It was well-meaning of course, but there is little anyone could say to Ed that would make things worse, since he knows better than anyone that this is not true.

I believe people at the edge of life need truth offered thoughtfully, not unreality.

Later, a neighbor down the road came into Ed’s room and leaned over to tell him he would be up on his tractor and mowing hay in a couple of days. Don’t worry about it, she said, the doctors don’t know everything.  She told a joke to cheer him up. It didn’t.

I kept my mouth shut, it wasn’t my business, and she meant nothing but good, but I wished she would go away.

Ed has a right to hear the truth, it is his body, his life, his pain. It makes me uncomfortable to patronize the dying.

He is on morphine and five other kinds of medication and sometimes the drugs and the cancer speaks instead of him. But he knows who he is and where he is almost all of the time.

When he asks me the questions he asks Carol, I say “Ed, I am so sorry, but you have brain cancer and that is why you can’t do the things you want to do, why you can’t sit up or walk or milk the cows. I wish I could make it go away, but I can’t, and it is out of our hands. Nature is taking its course now.”

When I say this to  him, he says, “oh, yes,” or just stares, and since last Saturday, he then falls back to sleep. In fact, he rarely awakens now.

I told Carol that I see how much she loves him and how hard this is for her, but I hope she can see that he is lonely now, alone with his death, and what he wants to hear, I believe, is that the ones he loves will stand with him in truth at this moment and share this final experience as best and honestly as they can with him.

I don’t believe he wants to hide.

He wants to reach out for reassurance and he is frightened, and he needs to know there will soon be relief, this will end. His questions are rhetorical, he is trying to understand what is happening to him. His only solace can come from knowing.

This is all up to  you Carol, I said, I believe this will help you greatly, and through you, him. The hospice staffers will help you.

Whatever  you do is fine.  This is time of truth and dignity. But it is up to you, not to me. You are here with it all night. He is the person you love the most.

I hope you are proud of yourself for how you are dealing with this.  We all are.

“I know this is right,” she said, “it’s what I want to say, and should say, but I just can’t speak the words.”

I said it was her decision when to speak and how to speak, Ed is moving beyond our reach. You need to take care of  yourself now, and all you can do is be there and let him know you are with him at this time.

I tried to remind Carol that no one could possibly to more for any human being than she is doing now for Ed and will be doing for him in the coming terrible days. Guilt is such a poison. Only the righteous ever feel it.

You can say the words out loud, you can say the truth to him if he asks for it: he is dying, and you know he is dying, and there will be no more walks through the barn or sculptures in his workshop or rides to Montana.

Carol And Ed believe in God and I told her to let God do his work, and she will do hers. I said this will be a great gift to Ed, and to her, as awful as it is and as painful as it is. I believe this is what Ed has asked me to do.

Then Carol began to cry and I suggested we close our eyes and pray together so that she might have a  respite and think about our talk and gather herself. And she did, she is so strong and loving.

Then I left her to talk with Maria, who is gentle and warm like Carol, more so than me, and I went to sit with Ed.

It was ironic, because the minute I said down with Ed, he grabbed my hand and asked me “why is this happening to me?”‘ in this raspy and almost unrecognizable voice. “When can I die?,” he asked me.

And I said I didn’t know, but I believe he would die when he was ready to die, it seemed to me it was up to his God and his body now, I was much too small to know.

And then he closed his eyes and I sat with him for a long time while Maria and Carol talked in the kitchen, I could hear Carol’s voice brighten, they talk so easily to one another.

I went into the kitchen to talk more with Maria and Carol, Carol was so much better, she seemed herself. We heard Ed calling out to her and she went into his room and I heard them talking and she came back in the kitchen to bring him some pudding.

“He asked me again what he can do to make himself better?” she said.

And she poured water into Ed’s glass and turned to me and said “I told him its the brain cancer thing, and there is nothing we can do about it.” Her eyes were full of tears and she said, “and he said, oh yes,” and he fell back asleep.

Maria and I left soon after that – Carol was  giving Ed some pudding – she asked us if either of us could sit with Ed Tuesday afternoon while she went to the Schaghitcoke County Fair to see her granddaughter show one of the Bejosh Farm cows.

She might get a ribbon.

We said we would be happy to, we could come together or take turns.