Tuesday, November 13, 2007

Fix me

I heard her complaints from the other side of the curtain in our shared hospital room: “I wish someone could pick me up and put me into a spot where I’m comfortable.” Her rants went on and on. “I won’t eat until my stomach clears out. I feel so impacted. I’m in pain.”

At times she sounded condescending. “You don’t understand,” she’d say to her nurses and aides as she refused medications, foods, drink, and treatments they offered that might ease her condition. Other times she was simply angry, augmenting her stubborn refusals by chastising everyone who tried for failing to help her. Too weak and sore to move herself into a comfortable position, she begged over and over, “Please help me sit up, just once more.” But then she’d scream, “You’re hurting me. You’re not doing it right.”

There’s not much in this world worse than constipation; unless it’s someone else’s constipation. There in the next bed, separated from me by a thin curtain, she bargained continually, whining, complaining, promising to be good if someone would only help her. “I can’t,” she whined over and over, and almost at the same time, “Help me.” Is she really saying, “Do it for me”?

“I can’t; I can’t. You try to feed me and I can’t eat. I Don’t. Want. Anything.”

Her private nurse attendant tells her she has to eat if she wants to eliminate. And she needs to eliminate if she wants to go home.

“I don’t want to go home,” she yells. “I want someone to hold my hand,” I hear her say under her breath. “Why won’t they just leave me alone?! Can someone please tell me why they won’t leave me alone?”

I’d been listening to this all day and watching the nurses scurry reluctantly in and out in response to her buzzer-ringing and hollering. They’d do their job perfunctorily and leave as soon as possible; which only made her more angry and ornery and abusive. I could no longer remain silent. I untwisted my IV line, pulled the pole along behind me and stepped behind the curtain.

“I’ll tell you why they won’t leave you alone. You’re in a hospital. It’s their job to try to get you better. And if they can’t make you better, they try to make you more comfortable. But you have been very resistant to their help, which only makes them want to get away from you. If you’re going to get more comfortable, you have to participate to make it happen.”

This is the first time I’d gotten a look at this woman all day. She is gaunt, emaciated, worn out, used up. Her belly is hugely distended. She embodies my memories of cancer from childhood, when “cancer” was one disease and it invariably ended in death. Initially her eyes were downcast and lifeless, with a heavy touch of guilt. She knows she's made my hospital stay less than pleasant; she's made frequent remarks how embarrassed she is about what the person in the next bed must think of her. Now I'm standing in front of her and maybe I'm going to dish her anger back at her.

“Your best bet is to go along with the program here, then get yourself home where you’ll be in a better position to be left alone. Have you looked into hospice?”

“No,” she said, “what’s that?”

I told her the little I know, which is that a person can have care in-home or in-facility, care aimed at making patients comfortable at end-of-life. She could probably get more information from the nurses.

She opened her eyes and looked at me directly. I’d dared to talk about her death.

“This is not fair,” she opened up. “Look at me. My stomach hurts. I can’t sit up. I can’t lie down. I can’t eat. I can’t get comfortable. I’m scared.”

“I understand ‘scared’,” I commiserated, “I have cancer too. But you’re going to have to stop saying ‘can’t’. No one wants to do anything for you if you don’t make an effort to find things that work. You have to let them know what you want and you have to let them try to provide it.”

“You’re right, it’s not fair,” I continued, “But it’s what is. There are a lot of things that aren’t fair.” And I related the story of the man who was struck by a car and killed in my hometown while walking on the sidewalk this past summer.

“I’m not afraid of death,” she said. “What scares me is what I leave behind. It’s having people see me this way, my daughters, their babies. I don’t want them to see me and remember me this way. It’s humiliating.”

“I understand. But you have to remember that what’s particularly unfair about death is that it robs the people left behind of someone they love. If you refuse to see them now, you’re taking away an opportunity for them to see you and love you and connect with you while you’re still alive. It’s awful to lose your mother. Let them have you while you’re still here… for them.”

I hadn’t wanted to touch this woman. Her appearance was scary, her demeanor hostile, hurtful, demanding, unforgiving. But she was looking at me directly through most of this interchange. I’d connected with her and I could see she appreciated it. She motioned for me to sit on her bed and reached out for my hand. We sat there, holding hands and understanding what it means to be in the cancer club.


Steve Bodnar said...

Ceil, I continue to read, to learn about you and to be amazed by you. Life isn't fair, and it is my good fortune, my unfair fortune, to have met you.

Ceil said...

Thank you Steve! That's a wonderful comment. The support I get from you and my international team is super. It emboldens me. It gets me through....

Ted Roche said...

You are awesome. What a brave, bold, honest thing you did. Bravo.

Ceil said...

You know Ted, sometimes I feel pulled along by a force that comes from who-knows-where. I certainly don't consider it bravery. But I have found that people usually respond to directness, even when it's something they don't want to hear.

The fact is, in this case, this woman has lived an indulged life. She's bossy and used to getting her way. The stress of her disease and the imminent death she doesn't want to face seem to be making her crazy.

I was able to step in for a brief moment and maybe show her that there are other ways to come to grips with what's going on. But then, I don't have to go home with her. I'm not the caregiver who ends up the target of her unrelenting abuse.

She yelled at her private nurse through most of the night. But when I left the hospital this morning I said goodbye to her and wished her luck. She did the same, and there was no rancor for the fact that I was going on to get better while she was probably not.

It's a very sad and complex situation.

Cathy Pountney said...

Ceil, this really post really shows your character. Life is full of adversities. We can either let them take us down .. or we can turn them into life lessons that make us stronger. You analyze the situation and figure out how to make the best of it. You go girl!!

Ceil said...

Wow, thanks Cathy!

I've been blessed (sometimes I think cursed!) with a strong intuitive sense of how things fit together. It works with human situations just as readily as it does with computers and software... although people are a lot less consistent, and often less willing to own up to what's going on, which makes them harder to pin down.

Computers are a relief to work with. They don't try to mislead you. :)

Anonymous said...

What a great post! Have you considered being a patient advocate in your next life? ;-) Even though this isn't exactly what you think of an advocate doing, I think the results you achieved are the same as what an advocate tries to achieve.

--Barbara Peisch

Neil Edwards said...

Amazing, Ceil. I've known you since you were born and I continually learn new fascinating things about you. Reaching out to your restive fellow patient took a lot of guts. And more than a lot of empathy.

Love you.

Ceil said...

Hey Neil! Thanks for the kind words. This post seems to have struck a nerve with a lot of people, just as my encounter with my roommate had a strong impact on me.

I really don't consider myself particularly brave. On the other hand, I try to be aware of when I'm afraid, and not let fear shut me down. Nobody wins in that case.

Ceil said...

Interesting suggestion Barbara. But I don't think it's in the cards. What I'd like for my "next life" (after software, right?) is to write. :)

Anonymous said...

Wow,Ceil, you missed your "calling",should have been a social worker.......hospitals need more people like you! I, like Neil, would never have suspected it; you are to be commended! I like to think you "may have made a difference" in this woman's life for the better, that is!

Love ya, Dianne :)

Ceil said...

Hi Dianne. I don't know about social worker. I'd probably end up wanting to strangle this woman, just like everyone else she torments. :)

I'm sure I made an impression on her, but as for making a difference... behavior has really deep roots. It takes an awful lot to get someone to suspend their fears long enough to make lasting change.