19 June 2018

Carol Gulley’s Poem: The Cry Of The Caretaker


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 bejoshfarm@gmail.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.

Posted in General

Robin On The Beach

Robin On The Beach

Everyone in my family – except me – has always loved the beach. Emma's mother loves it, Emma loves it, and now Robin loves it. I do like the beach for a half hour or so, but then I get restless or hot or sand gets in my shoes. I like walking on the beach in the morning, and in the evening, and I admire the beauty of the beach.

But I think I'm just too restless to sit there for hours, my butt gets store. I am happy to see how much Robin has taken to it, she will have the same wonderful times with her mother that Emma had with hers. That is a valuable thing in life.

Of course, I am not as cute as Robin.

Emma is urging me to do Facetime with Robin, she says Robin wants to talk to me. I said let's do it when I'm out with the donkeys, Emma says it's me  Robin wants to see, not the donkeys. Okay, I get it. I don't like Facetime anymore than I like sitting on a hot beach all day, but Emma is sending me a signal, and i am hearing it.

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18 June 2018

Portrait, Ed Gulley: My Favorite Cranky Old Windbag

My Favorite Cranky Old Windbag

Ed Gulley is not someone to lie around and mope, brain cancer or not.

I pride myself on getting Ed to laugh, especially when I'm doing a portrait. It isn't  hard. Today it was when I called him a Grumpy Old Windbag, it just cracked him up, mostly because he knows it's the truth. Ed has not list a flick of his great laugh and smile, he can light up a room whenever he wants.

Ed doesn't do sad or  self-pity, so most of my portraits show him smiling or watching closely. When I need to, I always know how to get  him to laugh. Ed laughs as hard on himself as he does on anything else. Ed will comfortably talk about his cancer, but we don't dwell on it.

He no longer believes he is going to die soon and and is busy setting about living, transferring his farm to his children, talking farm talk all day to anyone or anything who will listen to his ranting about milk prices, tractors, feed and  farming. He is comfortable with his desk and sofa, curling up with his big Australian Shepherds and cats when he wants to take a nap.

His dogs form a circle around him and watch him all day, they do not ever seem to want to go out these days, many of us know this story. Ed has given me several research projects to check out for him. One was the side effects of steroids, which he is now taking.

Ed is a very unusual man, a kind of ebullient schizophrenic, he is one part dairy farmer and one part creative. That is not a common thing. He loves to tell farming and old family stories. He is good at it.

The other was yesterday when he asked me if it was possible to smell cancer, he thought he could smell it when he got excited. I did some homework, and the answer, I told him, is yes, he can smell cancer. His dogs can certainly smell cancer, they have a sense of smell that is 10,000 to 100,000 times stronger than humans, it seems clear the dogs sense what is happening to Ed and stay with him day and night.

I've also researched how  he might best be able to stay at home during his illness and what bed and other equipment he might need and told him about hospice and what it does. He and Carol take all of this in, they are thinking about things and talking about things and will make their own decisions.

I hope to take regular portraits of Ed for as long as he will permit it. I want to chronicle his face no matter what happens.

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Art Class With Ed Gulley

The First Sketch

Last week, we brought Ed Gulley an easel, canvas boards, colored pencils and brushes, and some paint. Today he called Maria and asked if she could come over and critique his first sketch and tell him if he was doing it right. It was of Ethel the hen.  She thought it was quite right, she especially liked the subtle lines mixing with the heavier ones.

She thought it a great start. Ed is really into the sketching and painting, and he is a creative soul at heart. The artist in him has wanted to come out for a long time, it came out two years ago with his sculptures and farm art, it is emerging again with painting and sketching.

When Ed sets his mind to something, things happen.

Art Class With Ed Gulley

It was fun watching the two of them work together, Maria has an easy and open way with teaching, she is affirming without being sappy and encouraging while always being honest. Ed trusts her completely and listens carefully to her responses.

Ed is mentally sharp and strong, he is working to deal with some loss of control of his left side, his hand, arm and leg. He needs to use a walker to get around, but he is pleased to be able to get to the bathroom himself, he says it is a matter of dignity.

I'm getting Ed some thicker color pencils and perhaps an easel he can use in his lap.

I'm going to baby sit with Ed a couple of times this week and next, he is not comfortable now going out to lunch any longer, he's not sure his left arm and leg won't betray him. He is cheerful and non-complaining, lecturing everyone on cancer, and how it ought to be treated.

I said I couldn't believe him, he's had cancer for two-week and is lecturing about how to treat it. That is Ed.

Our friendship has grown close and easy again, we are natural with one another, and sometimes we both cry about not having met earlier in our lives. Men don't make friends easily, it is precious at any age. I'm excited about his art, and so is he. I'll try to check in every day to see how he is doing?

I'm getting used to being a best friend to a person with untreatable brain cancer, and he understands that we need to talk about it once in a while, for my sake and his.

He's planning more trips with Carol, I hope he can make it. They are awfully tough on her. Ed and Carol have gotten serious about evaluating the farmhouse to prepare for whatever comes next.

A medical team will come bye shortly to check out the farmhouse. I think the sketching and painting will be great for Ed, it will keep his mind focused and give him an outlet for is creative spark, which burns brightly. He says the first message about his cancer that he has learned is that he's not going to drop dead in a few days.

I told him I expect he will be story-telling and lecturing people for quite a while.

If you want to follow Ed's journey, check out the family blog, the Bejosh Farm Journal. He wrote a lovely poem yesterday, his best yet, I think.







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Maria Meets Gator

Maria Meets Gator

We were visiting Ed Gulley this afternoon, his grandson came in with a kitten named Gator, his mother had been killed by a car, and Jaiboy adopted him. Maria just about melted.

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