I wrote this morning about a wrenching poem Carol Gulley wrote on her blog this morning about her struggles to balance her new role of caregiving with love and being a lover and spouse. She seemed angry at Ed and hurt over what it was he expected of her, how much he did or didn’t listen to her, and just what it was he needed and wanted her to be.

It seemed a call for help to me, and it was.

I had a sense of how hard these past few  weeks have been for Carol, whose life was also upended and who was desperately trying to adjust to her deepening role as a caregiver to Ed, who she calls “My Farmer.” Caregiving, or caretaking as some call it, is increasingly common in America, as health care fails more and more people. And it is painful and difficult for the caregivers, who surrender much of their freedom and  identity and peace of mind, often for years.

I messaged the Gulleys in the morning and asked them if they wanted me to come over and talk.

There was no response, much as I expected. Dairy farmers don’t care for emotional face-to-face sit downs outside or inside of the family. When they don’t want to hear from me, they just ignore my messages. When they do that, I know I have to come and talk, and they are always willing to talk to me.

So I packed up the colored pencils that came for Ed and just drove over to their farm.

Much of my life, I have been telling people things they don’t want to hear. I am quite  used to it.

“I knew you would show up,” Ed said, “because nobody wanted to talk to you.” You got it, I said. We get each other.

Carol was in the kitchen, Ed was sitting on the sofa in the new addition he just finished and where he feels the most comfortable. The dogs and cats join him there, he draws and sketches there, and forays out into the living room where the computer is to read the many messages he gets a day.

“How’s the happy farm family?,” I asked, as I came through the door with my colored pencils in hand. I asked Ed outright about the poem, and it turns out he did want to talk about it and did need to talk about it, he and Carol had been talking about it all day.

Ed has a lot of self-awareness when he needs to have some. He told me he was well aware of Carol’s feelings and didn’t blame her for them, he said he knew he could be difficult and very independent minded, a difficult thing sometimes for people who are wanting to take care of him.

He said he understood the people around him loved him and wanted to care for  him, but he felt he was struggling to make his own decisions as he comes to grips with his brain cancer. And he didn’t like being monitored and fussed over every second. Several times a day, he said, he grabs  his  cane and  heads out to the barn when nobody is looking to say hello to the cows still out in the barn.

I had the sense he has fallen more than once – his left leg is not responding to the brain.

Ed said that in recent days he felt he was constantly under intense scrutiny from people who were watching his every move, worried about every step as he made his way to the bathroom, holding their breath every time he stumbled.

I told him I remembered from my open heart surgery the great humiliation of nurses helping me go to the bathroom and wiping my rear end. I would not permit Maria to do that when I got home, I always made it to the bathroom myself, even when I was warned not to and when it was difficult. I understood the great loss of dignity that can come from chronic and serious illness, and his illness is a lot worse than mine.

I think he knows it will only get worse.

I remember needing to make my own decisions, to dress myself, to get up and  walk around.

It is awful for an independent person to suddenly be dependent, to be watched every moment,  observed constantly, to be continuously worried about,  to feel like you are losing control of all of the  decisions in your life. He felt some of the decisions being made for him were wrong, and he said so. That caused some of the argument.

It can be suffocating to be worried about. We had a long talk about that and Ed’s struggle for dignity and the right to stumble and fall, if need be. I said it seemed like he needs some space sometimes, and he said yes, that was right. He said he also needs Carol to be near him as often as she can.

Ed and Carol had a long talk before I got there, and seemed to be in sync again, to understand one another, to continue to work this dreadful new reality out. Give yourselves a break, I told them, life as you knew it was washed away by a great  Tsunami just a few weeks ago, and you are still stunned and numb from it. And confused.

It is perfectly appropriate, even necessary, for emotions to rise and feelings stretched, this was new for both of them and they had a lot of things to work out. And they are working them out.

I  said I had a concern I wanted to raise, and they both said they would listen.

I said I was  concerned about Carol driving Ed around the country alone, as happened on their trip to South Dakota. I looked him in the eye and asked point blank if he understood how tired Carol was after the South Dakota trip and did he also understand the awful burden it would be for Carol if something happened to him on the road.

He thought about that but said he needed to go, it was critical for  him.

I said if they needed to go, and it seems he does need to go to Maine soon, I wanted to strongly urge that someone else join them, perhaps one of their  strapping and helpful grandsons or granddaughters, most of whom rode tractors all over and built ramps and  rails and moved furniture around.

I said – oddly, since I had no right to say it – that I would insist that someone go to help Carol drive and assist Ed. If Carol got sick or hurt they would really be in a pickle, that level of exhaustion I saw last week would be unhealthy and dangerous.  She does have heart disease, I reminded  him.

This was important, I said. I gave the same speech to Carol Monday, and she listened, and Carol never  acknowledges needing help or asks for it.

To my surprise, there was no argument, no fight. They both agreed right away. Ed said he supported the idea and he was sure one of his grandsons or granddaughters would love to come.

So it was good that I came, and I feel our friendship is strong and easy. I feel I can help sometimes when it is necessary. I feel we talk openly and honestly, and without fear or hesitation.  I felt I could support Ed and understand the very natural feelings of humiliation and loss of control that come from the kind of  disease he has.

It is  especially stressful to be sick in America, as there is no net under anyone but the rich, and epidemic feelings of helplessness.

I felt I supported Carol when  she needed support, as did so many of you. And I am glad she isn’t driving to Maine alone and taking care of Ed by herself. Carol also said she wanted to draw  with colored chalk and I volunteered to get some. She refused, but I am learning how to deal with Carol. I said I was going to buy some  colored chalk for her tomorrow and she could accept it or not.

She shrugged and agreed. Ed is getting into his drawing, I’m excited to see where he goes with it. I am learning to understand the role of a friend at a time like this. It is familiar to me. I do the best I can for as long as I can.