Minister hopes to grant wife’s dying wish
Sunday, August 15, 2004
By SHERRI CONER
Daily Journal staff writer
Content © 2004 The Daily Journal, Johnson County, Indiana
August 16, 2004

Four months ago, Carolyn Sue Ellis juggled a busy schedule: mom, grandma, preacher’s wife, teacher, volunteer.

Today, Carolyn, 57, is unable to move. Her hands are curling into frail fists. Most of her words can no longer be understood. She is dying.

“She’s not in pain,” says Ron Ellis, Carolyn’s husband of 34 years. “But it’s like being a prisoner in your own body. And you can’t get out. It’s a terrible thing when your body is wasting and your mind is clear.”

In April, while Carolyn was teaching a nursing class at University of Indianapolis where she served as assistant professor of nursing, her speech was suddenly slurred.

“Her colleagues thought she might have had a stroke,” Ellis says.

As tests were conducted, neurologists wondered if Carolyn might be suffering from amyotrophic lateral sclerosis, commonly referred to as Lou Gehrig’s disease.

There is no specific way to test for ALS, a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord, Ellis says.

So another battery of tests was ordered in an effort to rule out other diseases.

“It’s odd when you find yourself praying that you’ll have MS (multiple sclerosis),” Ellis says. “That’s a terrible disease, too. But you live longer.”

As a neurologist broke the news that she had ALS, “tears were coming down Carolyn’s face,” Ellis says.

Unlike her husband, pastor for 10 years at Amity Baptist Church in Franklin, Carolyn’s profession made her familiar with the disease. At the moment the doctor uttered the diagnosis, Carolyn knew she was terminally ill.

If disease symptoms first appear in the limbs, progression is not as aggressive. But in 25 percent of ALS cases, symptoms first appear in a person’s speech. And the muscles of the throat are affected, restricting the person’s ability to swallow.

Dazed, Ellis took his wife home.

As the weeks progressed, ALS immediately began to rob Carolyn of her life. She could no longer teach. After volunteering her time for seven years at St. Thomas Clinic in Whiteland and as the parish nurse at Amity Baptist Church, Carolyn had to stop.

Within two days, seven members of the church built a wheelchair ramp at the front of the Ellis home. Another church member planted sunflowers in the backyard garden, since Carolyn could not plant them herself.

Feeding Carolyn turned into a two-hour challenge every meal. She struggled to swallow.

Three weeks ago, Ellis tried to lift Carolyn from their bed so she could use the bathroom.

“We fell,” Ellis says. “And both of us injured ourselves. I tried to catch her and couldn’t do it.”

Ellis realized he was quickly losing the ability to care for his wife on his own.

Carolyn was admitted for surgery at IU Medical Center. Doctors found it necessary to insert a feeding tube to prevent her from possibly choking or being malnourished.

“Little did I know when I left the hospital that day that Carolyn wouldn’t be coming back home,” Ellis says.

Carolyn is now in a Columbus hospice.

“It grieves me that my wife is in a hospice,” Ellis says. “But she’s getting good care. She’s in a safe place.”

Every morning, Ellis walks across the lawn to work at the church. Members of the congregation leave meals for him each day.

“That’s been an incredible blessing,” he says. “I didn’t work in the kitchen. The kitchen wasn’t my place.”

After completing his responsibilities at the church, Ellis drives south to sit beside his wife’s bed.

“We’ve talked very honestly about her death,” he says.

Carolyn wants to be buried in her family’s cemetery in Ash Flat, Ark.

“It helps me to know we’ve made decisions that Carolyn has had input on,” Ellis says.

Sometimes they watch TV. They reminisce together. They laugh often. He reads her greeting cards and e-mails. He reads the Bible aloud, and holds her hand to pray.

“Sometimes we just cry,” Ellis says. “Cry together. The situation is so overwhelming. And you can’t help but cry.”

Their only child, Brian Ellis, 31, of North Carolina recently visited with his wife and their 15-month-old baby, Mattie Kate.

“Carolyn really loves our granddaughter,” Ellis says. “She grieves that she won’t see our granddaughter grow up.”

Their visit was bittersweet, Ellis says.

“Carolyn just perceived that was the last time she would see them,” Ellis says. “It’s been very painful. We all feel so helpless.”

When an organization for terminally ill adults offered to grant a wish to Carolyn, her giving heart shined through, Ellis says.

“She said, ‘My last wish would be that you get medical equipment and medications for diabetic patients at the clinic,’” Ellis says.

He feels the strain of responsibility, Ellis says.

“All of my prayers have been for Carolyn. But also, I pray for the congregation,” he says. “I feel a need to take care of both my wife and my congregation.”

His congregation, friends and family have rallied to care for him and Carolyn, too, Ellis says. They visit Carolyn frequently. They help Ellis in many ways at home.

“We’re used to doing things for other people,” Ellis says. “Our church has demonstrated incredible Christian love to both of us.”

Ellis says he is truly leaning on his faith and learning to live one day at a time.

“This is the hardest thing I’ve ever had to face,” he says. “But God gives us the strength for the day.”