Helen Payne
The Story of Helen Payne (Part One)
Tuesday, November 4th All Things Considered

Host Linda Wertheimer begins a two-part documentary of the final months in the life of Helen Payne. Mrs. Payne was diagnosed in January of 1997 with Leukemia. With that news, Helenís life and the life of her children began to change. We follow the family, through their process of coming to terms with the terminal diagnosis, and their plans to care for her. We learn about Mrs. Payneís personal history - including the role her religious beliefs play in her view of death.

You can read the transcript:

LINDA WERTHEIMER, HOST: This is ALL THINGS CONSIDERED. I'm Linda Wertheimer.

ROBERT SIEGEL, HOST: And I'm Robert Siegel.

This week on the program, we're talking about death and dying and grieving. These topics are often talked about in the abstract, but living through the experience of someone's dying can be quite different. So today, to continue our series, "The End of Life: Exploring Death in America," we begin the story of one death -- in one family.

SOUND OF A CROWD IN CHURCH

CLERGYMAN: The Lord giveth. The Lord hath taken away. Blessed be the name of the Lord God. Lord let me know mine end and the number of my days, that I may be satisfied how long I have to live.

Linda Wertheimer

WERTHEIMER: Helen Payne was 81 years old when she died at home early on a Monday morning at the end of August. She left behind six daughters and a daughter-in-law, two sons and a son-in-law, 28 grandchildren and 47 great-grandchildren. More than 150 people were there to say good-bye to Helen Payne on a sunny Saturday morning at Second Shiloh Primitive Baptist Church, a tiny country church in Virginia.

CLERGYMAN: The third day in the morning, when the clock begin to strike on the -- the person who -- we go (unintelligible) -- stand on the edge as we turn and hide.

LINDA WERTHEIMER: Her church and her family were the most important parts of Helen Payne's life. When she was diagnosed with acute leukemia, she relied on both her faith and her family to find ways to face her remaining months of life and her death.

We asked Helen Payne to allow us to be there, too, and she agreed with the hope that it might help other people. This is very much a story of a family struggling with a terrible reality that their other was dying. But of course, it's also Helen Payne's story.

HELEN PAYNE, MOTHER, GRANDMOTHER, GREAT-GRANDMOTHER: I started with nosebleeds, and they was comin' so regular, but still I could get around. Then, my nose just kept bleeding and bleeding. So the last time, I had to call the girls and let them know what was going on. Then they rush me into the hospital.

LINDA WERTHEIMER: So you went to the hospital.

HELEN PAYNE: And they just rip my clothes right off -- cut 'em off. They block my nose with ice, and they got it checked, so then, that's when I found out what was wrong.

LINDA WERTHEIMER: Who told you?

HELEN PAYNE: The doctor.

LINDA WERTHEIMER: What did he tell you?

HELEN PAYNE: I want to say -- I don't know. He just said that I had this -- what's the name of the thing, Glenda? I don't know the name of it.

GLENDA CRABBE, DAUGHTER OF HELEN PAYNE: Leukemia.

HELEN PAYNE: Leukemia. And then he went on and explained how it worked. Whatever. I don't know -- I don't know how he -- but whatever. I accepted it. I told him -- I said, I accept everything that he told me, whatever it was, I said, I'll just have to live with it.

LINDA WERTHEIMER: When you say you accept it...

HELEN PAYNE: Yeah.

LINDA WERTHEIMER: ... what do you mean? What is it that you accept?

HELEN PAYNE: I don't know. He was just explaining different things that would happen. You know, I just say, well, I'll just have to accept it.

LINDA WERTHEIMER: When we first spoke to her last spring, Helen Payne thought this illness might be her last. She neither feared nor welcomed death, but as a practical matter, she was 81; she knew she was losing her strength; and she felt she might not recover it.

She accepted that possibility far more easily than her family did. Her daughters and her grown grandchildren wanted answers -- wanted to know what could be done. Glenda Crabbe is not the oldest daughter, but she is a kind of natural leader in the family, and she anticipated the doctor's diagnosis.

GLENDA CRABBE: Well, I already knew, and what I did is when we were like in the emergency room, and the words that they were saying, I would remember 'em and I'd write 'em down. And I have a medical book at home. So each night when I'd go home, I'd look up the words.

So I pretty much had an idea that it was a form of leukemia, but now, you have about five or six different types. And the more they worked on Mom, the more hers seemed to go into the acute. And as time goes by, see, I'm saying to myself: now, this is not the one we want. We're not even going to deal with this one.

And once I got that "acute" put aside, I'm just dealing with these leukemias right here 'cause we can, you know, we can fix it and work with it and all this kind of stuff. But in my mind, I knew because of certain things that was going on, it -- all the symptoms were in the "acute."

And I'd been talking to Dr. Felice off and on. And finally, he called me and he said that I could get the family in, and he was going to tell mom and tell everybody what she had. And so, he said that she had the acute leukemia, which made me angry because he had gone against what I didn't want her to have.

LINDA WERTHEIMER: He told you the results you didn't want to hear.

GLENDA CRABBE: Right. Right. 'Cause I'd picked out the one...

LINDA WERTHEIMER: Mm-hmm.

GLENDA CRABBE: ... that I wanted him to tell me she had. I was really mad at that man...

LAUGHTER

... I'm getting upset thinking about it.

LINDA WERTHEIMER: Leukemia is a malignant disorder of the blood. The blood-producing bone marrow stops making a sufficient number of normal blood cells . White blood cells can no longer fight infection. Red blood cells cannot adequately supply the body with oxygen, and the blood's platelets lose the capacity to form clots. Helen Payne's diagnosis of acute leukemia meant she had a rapidly-progressing form of the disease.

Together, Helen Payne's children learned that her instinctive understanding that acute leukemia would kill her was correct. Helen Payne was also clear on what she wanted done. Her second husband, William Payne, died four years ago in the hospital. She didn't want that. She wanted no aggressive treatment. She said she wanted to be comfortable -- not to be a burden -- but if possible, she wanted to stay at home with her daughters until the end. The specialist who treated her, oncologist Dr. Anthony Felice, reached the same conclusions by a different route.

DR. ANTHONY FELICE, ONCOLOGIST TO HELEN PAYNE: It's always easy, actually, if you think about it, to recommend therapy, 'cause then people always think about, well, at least we're doing something. You know, it's sometime the most difficult think to do is to say you think it's in someone's best interest not to do anything; that this is actually -- will give them "a better quality of life" than actually proceeding with some kind of treatment.

So I -- our expectations were that she would not live for a long period of time.

LINDA WERTHEIMER: Her family always did what Helen wanted. A powerful, matriarchal figure at the center of her large family, she never needed to insist. Everyone expected that Glenda would take the lead in carrying out Helen's wishes and would be the primary person caring for her mother. The youngest daughter, Dee Dee, had stayed in Texas when her father was sick. This time, she left her job in Houston and moved back to Virginia to help.

DEE DEE PAYNE, DAUGHTER OF HELEN PAYNE: Glenda is -- is the mother, if anything should happen to Mother -- even, you know, while Mother's going through this, Glenda is backup. She's always been.

And I guess seeing that Mom was down, there was a comfort knowing Glenda was there. But if Glenda got pressured, and everybody was leaning on Glenda because they didn't want to put any pressure on Mother, it was like -- well, I need to get Glenda up because we need Glenda. So I had to build Glenda up because everybody else is going to, even I, call on Glenda.

So she's got to stay strong, and whatever it takes for me to do that, I'll do that.

LINDA WERTHEIMER: Helen Payne was treated with antibiotics, occasional transfusions to increase the supply of red blood cells, and pain medication.

DIXIE ORRISON, NURSE, HOSPICE OF NORTHERN VIRGINIA: Your blood counts are wonderful.

HELEN PAYNE: Oh, great.

DIXIE ORRISON: They really looked good this time.

HELEN PAYNE: Oh, great.

DIXIE ORRISON: Yes. That's why you're feeling so good.

HELEN PAYNE: Yeah, it is.

LINDA WERTHEIMER: Her care was supervised by a visiting nurse, Dixie Orrison, from Hospice of Northern Virginia. And that made it possible for Helen's transfusions and intravenous drug therapy to take place at her small apartment, in a building for retired people.

SOUND OF NURSE TAKING BLOOD PRESSURE

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Dateline: Linda Wertheimer, Washington, DC; Robert Siegel, Washington, DC

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