Hospice: The Lesson - Chapter 5: The Difficult Patient
By Joan Morris
TIMES STAFF WRITER
Published Thursday, May 24, 2001, in the Contra Costa Times Newspapers.
Orginal Link Addresses:
http://www.contracostatimes.com/health/hospice/
http://www.contracostatimes.com/health/hospice/stories/dayfive_20010524.htm

SFBAPPA.ORG Award of Excellence:
Bob Larson, Contra Costa Newspapers, "The Lesson" - Corresponding Photos.

the lesson

CHAPTER V: The Difficult Patient

Toughest part of battling cancer is losing control
Diane Sheffield fights to hold on to remnants of her former life

By Joan Morris
TIMES STAFF WRITER

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It’s not the pain or loss of energy or even the realization that death comes closer each day that’s the hardest for Diane Sheffield.

It’s the loss of control: control of her body, of her thoughts, of her life.

The decline that began in November 2000 deepens after the new year. Diane can no longer walk without help and without a great deal of effort. At times, she barely has the energy to hold her head up. The pain, which she has always feared would consume her final days, has been breaking through the veneer of drugs, leaving her unable to think straight.

Her memory grows fuzzy, and when she sleeps, she sometimes sees things that trouble her. Strange men on flying carpets whisper to her, urging her to fly away with them to the land of the dead beneath the pyramids of Egypt.

Diane is not afraid of what lies beyond the moment of death. She has prepared herself for that and believes she will see the face of God. It is the process that frightens her. She had watched her mother, who suffered from emphysema, battle for each breath, and Diane does not want to die that way.

She also worries about losing her mind. Diane’s father, Jack Danilovich, the beloved former coach at Antioch High, had suffered from Alzheimer’s, caught in a slow spiral into nothingness. At the end, he’d been unable to recognize anyone, and somewhere along the way, Diane had stopped called him “Daddy” and began to call him “Jack.”

The few times anyone has seen Diane cry during her illness is when she realizes she has not been thinking clearly. “I used to have such a brilliant mind,” Diane says sadly. “I really miss it.”

Diane struggles to hold on to the remnants of her former life. At times, she is too weak to leave her bed, but she refuses to lie around in her nightgown. She insists on bathing and dressing every morning, and she props herself up on her bed, on top of the covers.

In December, when she has the strength, she writes cards to friends. When she doesn’t, she dictates them. She has never missed a year sending out Christmas cards, and she will not miss this year.

The hospice team works to permit Diane as much control as they can. Hospice arranges to have a home health aide come five times a week. Olivia Templeton, an experienced aide, comes every weekday morning to bathe and dress Diane.

Sue Stewart, Diane’s hospice nurse, is worried about Diane falling, and for weeks, she has talked to Diane and Bob about bringing in a hospital bed. The cancer has weakened Diane’s bones, and a fall could put her in the hospital. But Diane refuses. She wants to stay in her own bed with its flowery spread and piles of pillows.

Bob is dismayed by the number of visitors who crowd into Diane’s room. As long as she has company, Diane put up a gallant front, trying to pretend she is fine. Bob is fiercely private and is embarrassed when his emotions betray him.

It’s easier when it’s just him and Diane, but he expresses his unhappiness not in words, but with a brusque air that often sends visitors scurrying.

Diane seems not to notice. She goes on chatting until exhaustion overtakes her. She even convinces one friend to take her Christmas shopping, rolling her through the aisles in a wheelchair.

Sue finally lays down the law.

You’re dying, Sue says. It’s time to stop pushing yourself.

Bob never has understood why Diane drives herself so unsparingly, and Diane can’t explain it. It is just how she is. Part of it, most of it, is that Diane needs to prove to herself that she is in control.

Privately, Diane admits Sue’s admonishment is something of a relief. It gives her permission to stop trying so hard.

“I’m not less patient in waiting to die, but I am tired of trying to figure out ways to live with this,” Diane said. “Every day brings something else, something I have to deal with, that I have to adjust to. I’m getting tired of it.”

Friday Chapter VI: Last days.

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