11 August

The Ties That Bind: Pride And Sorrow At The Gulleys…Oh…

by Jon Katz
The Ties That Bind: Carol And Chad

The hospice worker was done cleaning and talking to Ed, she was packing up her things.  I was there sitting with Ed so that Carol could go and get her hair cut.

Over the past few weeks, the hospice worker and I had gotten to know each other well, I was often there in the afternoons, and she was easy to talk to.

As a hospice volunteer, we both could talk easily about hospice work and what was happening with Ed, and I was struck by her gentle and loving ways. She really knew what she was doing. She really loved what she was doing.

She seemed to dwell over Ed for a long time when she was done.

Ed was so comfortable around her, there are few people on the earth he would allow to bath him and change his diapers. Everyone in the family loved her as well.

As she was leaving, I said I hoped to see her on Monday, but she said, “I’m not sure I will see you on Monday,” so she wanted to say goodbye then.

I was surprised, and I asked her if she was taking another job or moving away. She paused and looked at me, and said nothing. Then I realized what she was saying.

“Oh,” I said. “I get it.”

She was saying she wasn’t sure she would be needed again by Monday. Hospice people know how to say goodbye.

Ed had slipped into a near coma, his face had become a kind of death mask, almost skeletal, he could no longer speak or respond or swallow pills.

All of his medications had to be administered orally and every two hours. It was hard to see him.

And all of his medications had been increased to make him comfortable and stop his thrashing and ease his pain and help him to sleep. It would not be long now.

I have enjoyed getting to know and talk to Ed’s family, something I rarely had the chance to do before.

I know they were all puzzled by the friendship that had emerged between Maria and me and Ed and Carol, I could see they didn’t quite know what to make of it. I doubt they knew people like us.

When we saw them, they were polite, but seemed uncomfortable, they didn’t know what to say to us, and we didn’t know what to say to them.

Most of their talk was farm talk, the intense and endless gibberish that centers on cows and feed and tractors and misadventures and accidents and  crops and weather and milk prices. I had little to say about those things or contribute.

I have known all of my life that I make most people uncomfortable, and have learned to accept that as my own mark of individuality and identity. It is just the way it is, it is neither good nor bad.

Yesterday Carol came back from the hairdresser to say the appointment had to be canceled due to a family emergency.

I asked her if she wanted to sit at the kitchen and table – she is always the most comfortable there – and talk. If I didn’t ask her, she would just go and stand by Ed’s beside and wait for him to need something.

I have learned that you never know what people are thinking if you don’t ask them. Very few people ever ask me what i am thinking, and I am a reporter at heart, I always want to know what people are thinking.

At the table she opened up and came as close to relaxing as she can come these days.

We started talking about family. She always asks about my granddaughter, is amazed that we don’t lie close to one another.

I asked if she had any siblings, I had not seen a single member of her family come to the farmhouse since Ed was diagnosed with brain cancer.

I wondered at this. If ever a family member might want to show up to offer support, it would be now.

She shocked me by telling me she had a brother and two sisters. I had never seen them or heard about any of them.

She told me one of her sisters had lived with her and Ed for seven years when she went to a local school. I asked her if her sisters and brother knew what was happening, and she said she had e-mailed them right away.

I asked if she wanted them to visit, and she said yes of course, and her sadness seemed to deepen, so I dropped it. She had enough sadness.

Carol has always felt sorry for me and for Maria, because we are not close to our families, and because I only occasionally see Robin, my granddaughter. Carol thinks this is very sad. I always tell her it’s not really sad, Emma and I love one another, we just lead different lives in different places.

I said I was stunned to hear about her absent siblings, I was learning that at the core, she and I were much more alike than it might seem.

Carol is definitely the proverbial onion, layer after layer keeps peeling off and revealing a strong and complex self. Ed was different (yes, I am speaking of him in the past tense now, he is gone in my mind), everything was on the surface, nothing was held back.

There were no layers to peel off, Ed was always Ed.

But Carol is only sometimes Carol.

It was hard for me to fathom, someone as attached to family, to children and grandchildren as much as she is, yet her own family, like mine, seemed utterly disconnected from her.

Carol sees her grandchildren almost every day, and talks about them constantly, she is so proud of them. She suffers from depression, it sometimes makes her quiet and reflective.

Yet there was this other side, never mentioned, even as often as we speak. I could see what a hole this had made in her heart.  I know what a hole that is.

When the hospice nurse came to check on Ed’s medications, Carol’s son Chad came in, Chad has what the farmers call the “milking addiction,” he is addicted to farm life, like Ed. He is always grimy and exhausted, he works almost round the clock.

He and his wife Kate are working hard to keep Bejosh Farm running, that is their calling, like all farming, an obsession. Before Ed’s sickness, I had almost never spoken to him. He is different from Ed, he doesn’t say that much, but he says what he needs to say.

Chad went into see Ed and he asked the hospice nurse if Ed knew he was there.

Of course, she said, Ed knows you are there, he just can’t speak to you.

I am in awe of hospice nurses, but that doesn’t seem to be true to me, not yesterday.

I don’t think Ed has known I am there for a day or so now. He is so close to the end, his brain and organs are shutting down, he can’t even swallow a pill. I might see my hospice friend on Monday or Tuesday, but I doubt it.

Chad came over to me – we had barely ever spoken before, but I have come to love and respect Chad and his wife Kate, they have been so honest and warm and they work so brutally hard. And they are authentic, in their words and feelings.

When Chad asked if Ed knew him, Carol came over to give Chad a hug and it was a powerful thing to see, I took a photo of it. Carol is somewhat like me, she isn’t comfortable showing emotion, she was showing it then. She was telling him it was okay to let go of Ed, to give him permission to go.

“You know what?,” Chad said to me.”I want him to go, I know he wouldn’t to be like this.” This is hard thing for any child to say, but it was so true and open. That’s when Carol hugged him.

“I’m so proud of this family,” he said.

I said he should be proud. The family has been a rock for Ed, from beginning to end.

Ed is getting to die just the way he wanted to die, at home, surrounded by people he loves and who love  him. He did not die in some hospital or nursing home bed, pushing a buzzer all day hoping someone would come to him, subject to needless and hopeless procedure after procedure, recovering from one pointless surgery after another,  kept alive beyond all reason or comfort or peace.

He was the truth right away and accepted it. It took others awhile to get to the same place, but they did.

When someone needed to wipe his bottom or hold him on the commode, there was always someone to do it, right away.

Carol and her children could not stop his cancer or make him well, but they gave him the greatest gift any child could give a parent or spouse. They gave him the most loving and peaceful death it is possible to have.

And I was so happy to see that Carol, denied the love and support of her family – I know what that feels like –  found it when she needed it the most.

And I guess the same might be true for me.

__

And today, Carol, brave and strong now, wrote this on her blog. There is so much to learn in darkness, so many ways to grow, and wow, has she grown. It is time, she told Ed, to let go.

But honestly, enough is enough…as much as this is tearing all of us up…it is time to go. You will forever be in our hearts and lives; you can see all who have left before…that includes your beloved cows and dogs, just to name a few.

Go, enjoy and save a spot for the rest of us…we promise to do you proud. No worries for that.

Go rest high on that mountain…please. I love you to bits…we know how strong you are both inside and out…that is why it is so darned hard to watch this all happening to you knowing it is not going to improve.

Calling it quits is not a weakness. It will be the final act of strength you can show us all and for that we will be eternally grateful…We all love you dear Farmer.”

1 Comments

  1. I would hope, when this ordeal is over, there would be some way to share your words and Carol’s words in support of Right to Die legislation in every state in the union. This has been such a meaningful journey … it needs to be shared.

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