Carol Gulley is a good friend, and in addition, a student in my writing class. She is a very special person.
I have a lot of admiration and love for her, she has been a devoted and loving farmer's wife – her term – for most of her life. She is almost incapable of asking for help, works day and night, and mostly sees her life as being about supporting Ed and her family, to which she is intensely devoted.
She has worked shoulder-to-shoulder with Ed, driving tractors, shoveling manure, helping to birth calves, milk cows, out in the cold, the heat, with flies, getting bumped, stomped on, exhausted by the grind of dairy-farming. She also raised and fed a family, cleans, shops and cooks. She is not, by her own definition, especially domestic.
She always refers to Ed as "My Farmer," but never refers to herself as a farmer, only as the wife of "My Farmer." That is her generations' way of looking at it. Carol had open heart surgery, four years ago, about the same time as I did, we became friends in cardiac rehab.
Her life was upended recently when Ed was diagnosed with terminal brain cancer, the doctors found 10 different tumors in his brain. She is trying to understand the new reality of her life. It is very difficult.
Almost nothing about Carol's world is the same as it was a few weeks ago. She has, as is typical of her, devoted herself to her new role as a caretaker, monitoring Ed, worrying about him, picking up his medication, soothing and comforting him, arranging for visitors and doctor's appointmnents.
Carol is now a caretaker. A few weeks ago she was caring for newborn calves, feeding chicken and milking. Now her full-time job is Ed, his wants and needs and emotional challenges. She loved working on the farm. Her work life is gone now.
In America, caretaking is a loaded term with enormous meaning. Lots of people want to make America Great Again, but I wish they would make America nice again. Our barbaric health care system almost never provides for the proper care of the aged, the handicapped, the chronically ill, or people with brain tumors.
In our country, we are lucky if we can afford critical surgery, the rest often falls to someone in the family – most often a daughter, but sometimes a son or other relative, a caretaker. One who enters the grueling and emotionally chaotic world of the caretaker, a thankless, exhausting and extraordinarily difficult job.
Caretakers don't get benefit dinners, or gofundme sites or lots of visitors and flowers and good wishes, they rarely get much attention, praise, sympathy or encouragement.
They hover in the background, handling the dirty details of chronic health care that nobody else wants to do or talk about. They till in so many holes in our medieval health care system. They are the ones who do the laundry, clean up after accidents, handle awkward medical equipment, change sheets, wipe bottoms, help people dress, monitor pills, cook and clean. They are almost always exhausted and stressed.
I remember thinking when I had my Open Heart Surgery – Maria briefly became a caretaker – that a caretaker is not a wife nor a lover, but something else. You don't want to make love to a caretaker, or hold hands with one in the movies, or sit outside and look up at the stars. She never pretended it was, for which I love her.
Maria disliked being a caretaker and I disliked her being a caretaker. She is my lover and friend, that is quite different. She went back to work as soon as she could, and we were both relieved. It was not her work.
When people are thrown into the demanding and often frightening responsibility of the caretaker, their lives are turned around, they often don't know what they are or who they are, and what is expected of them.
And so much is expected of them. There is rarely anyone around much of the time who can help them. They are there day and night. In a rational or humane world, the chronically ill could have professionals taking care of them. We do not live in a rational world.
Caretaking is a profession, or should be, it requires a very special set of skills that few untrained people have. It changes the lives of the people who do it, often in ways that are unexpected.
The Gulleys have blogs, just like Maria and I do, they have more than 100,000 regular visitors to the Bejosh Farm Journal. Sometimes, I see that Ed and Carol send messages to one another, or to members of their family, and to other people through their blog.
This is a good medium for dairy farmers, who dread emotional encounters of any kind that are face-to-face.
This morning, I saw just such a message from Carol, she wrote a poem called "My Farmer And Me…I don't want to…" and I recognized it right away as the wounded cry of the caretaker, plunged into this demanding and uncertain role, and not sure who she was anymore, or who she is expected to be.
Ed is the one with cancer, but Carol is in great crisis too, her life is also on the line. They are in this together, bound to one another.
Ed is a wonderful man, but not a simple or easy man, I can say that to his face and he will nod in agreement.
He has a healthy ego. He can be loving and generous, but also self-centered and demanding.
When he wants to do something, he does it, and the people around him snap to. He doesn't always stop to think about the consequences or casualties. I am deeply concerned, for example, about the consequences of further car tips on Carol – they are planning a trip to Maine soon – Carol was beyond exhaustion after the last trip to the Dakotas.
I'm not always sure he takes that into account. It is easy to forget that Carol also lost her life a few weeks ago, and was thrown into the whirlwind, something none of us are every really prepared for until it is thrust upon us.
Carol was angry in her poem, and hurt. The two of them are clearly trying to work out this care taking role.
"Is there a designated length of time before I have to go from the loving and caring wife..to the caregiver? Is there really a difference?," she asks in the poem.
It was an eloquent poem, Carol is a fine and natural writer. But also a painful one. I wouldn't normally write about so personal a thing, but Carol put it out there, and it deserves to be heard and considered.
"Open your eyes…I am here," she wrote in her poem. "Like it or not. I will try my hardest to remain a wife and give the loving care required. But..if I have to give up one to become the other, I don't want to and I won't."
It was familiar to me, I heard it so often in my hospice work. It was the cry of the caretaker looking to find her place.
I called Carol and left a text message asking if I could come over and talk to them about caretaking. Carol didn't respond, as I suspected she wouldn't. Dairy farmers are not prone to having conversations like that. When she doesn't want to do something, she just ignores the message.
So does Ed.
But I wanted to write about it in sympathy for her.
I also wanted to suggest that perhaps some of the many caretakers I know are out there reading my blog might reach out to her and lend an ear or a sympathetic message to her, I think she could use a hand, Carol is in a very rough spot. How could she know what to do?
She listens in her own way. Her e-mail is email@example.com.
Ed has brain cancer, and that is an awful thing most of us can relate to. Carol is also in great pain and confusion, and that is harder to see. Empathy, the highest calling of humanity, is nothing if not standing in the shoes of others.