COLUMBIA — Debra Oliver, 52, an MU School of Medicine professor and former hospice worker, has spent decades working with patients who have terminal illnesses and conducting research on the people who take care of them.
Oliver's relationship to her subject of study became far more intimate in September 2011 when her husband, David Oliver, 70, was diagnosed with stage four nasopharyngeal carcinoma. Suddenly, she became part of her research — first person.
David is a retired professor of gerontology and deputy director emeritus of Interdisciplinary Center on Aging at MU. After his diagnosis was confirmed, he took an unusual step and posted a series of videos online documenting his experience and reflecting on the experience of living with cancer. The videos spread quickly and inspired thousands of viewers, not only in Missouri, but across the globe.
Life has changed forever for the happily married couple. They found themselves on a parallel journey, experiencing cancer from starkly different perspectives. Debra has learned what can only be gained from personal experience. For his part, David has been overwhelmed by the experience of being cared for by the woman he loves who seeks no other reward than helping him get through one of life's challenges.
“It’s something that you come to appreciate so much," he said. "You believe in people, you believe in humanity, you believe in love."
Pain and tears
Although Debra says her "whole career has been talking about death and dying," that knowledge and skill set didn't give her immunity from pain or fully prepare her for what lay down the road.
"It's a whole different thing when it's this person you love," she said in an interview recently in her office at the Medical Sciences Building at MU.
Before her husband got sick, she couldn't understand why people wouldn't go to the Cancer Caregiver Support Group held at Ellis Fischel Cancer Center the fourth Tuesday every month.
And then she became a caregiver and found herself hesitating, at first, to go as well. Trained to be a social worker, Debra is a sympathetic listener — it's natural for her to feel others' pain.
Yet a person has only so much space for pain. She was experiencing so much of the same kind of anguish, she couldn't bear others' too, she said.
Then there was the physical part. Besides the stress and sorrow, her body began to act up. She suffered severe insomnia. In the quiet of the night, she would wake up and think about some future day when David might not be with her. She would start crying and think, "What am I gonna do? Can I do it? Can I cope with this? How will I get out of bed? Who will make me laugh? Who will think with me? Who will dance with me?"
Thinking her husband was sound asleep, she'd give in to the sorrow and feeling of hopelessness. She thought he would never know or find out how much despair she was feeling.
But David wasn't asleep. He lay silent and motionless, letting her have her cry.
So she was shocked when she heard him say during a lecture to medical students how heartbreaking it was to hear his wife crying in the middle of the night.
She still cries, but now she goes to the bathroom and closes the door.
"The shower is a good place, too," she said.
Who's caring for caregivers
According to a research paper from the National Alliance for Caregiving, an estimated 65.7 million people in the U.S. served as unpaid caregivers in 2009.
Of the 289 participants in Debra 's ongoing research, 30 percent are severely anxious, and six of them considered suicide within the past six months.
In David 's opinion, the caregiver suffers the most.
When all the attention is on the dying person, caregivers remain silent despite all the work and effort they did. They listen carefully to everything the doctor says; pay close attention to medication; transport the patient; and attend to the patient's needs. Some caregivers end up quitting their jobs, which means a loss of income and new stresses. And in the end, their "reward" is being left alone when their loved ones pass away, David noted.
He cared for his mother in 1989 when she had cancer, until she died in his arms four months later. He has a vivid memory of helping his mother go to the bathroom on a trip from one hospital in Springfield to another one in St. Joseph. That help involved using a bedpan in a car at a rest stop — not the easiest of tricks.
"The learning from that is you do what you have to do," David said. "The caregiver has to be creative, and brave, and strong, and ready for anything that might come their way."
Another challenge is for caregivers to stay healthy so they can provide the best possible care and support to the person who's ill.
"The patient will only be as successful — especially when they are really ill — as the caregiver is," Debra said. But with all the attention going to the patients, caregivers can feel pretty helpless.
As a a result of her experience, Debra now sees her job as designing ways that people can help. Her current research focuses on using video conferencing technology to allow caregivers to participate in conferences about their loved ones' hospice care.
Ups and downs
Debra cried all the way through the first YouTube video David made to break the bad news to his colleagues. What viewers see is his smile and brave attitude, even clouded by the darkness brought by cancer.
His intention was to put acquaintances at ease with his troubling news. So the couple was caught by surprise when the video reached a much broader audience and galvanized a wave of support across the country. Hundreds of greeting cards poured into the mailbox at their home in southwest Columbia. Professors from other universities sought his permission to use the video for classes. Newspapers, magazines and TV stations came one after one to do stories. The couple even flew to New York in February to appear on a national morning news show. It was an exciting time.
But after the highs comes the lows. Two days later, David was back to chemotherapy for the next four weeks.
"The reality hits you very quickly," Debra said.
Work used to be Debra's escape, a place she could hide from outside pressures — but not any more. In the first couple months, she could barely stand to go to work, let alone read research papers about what she's personally experiencing.
Her office, a sunny place decorated with various Missouri Tiger toys, frames and paintings featuring tigers, is bursting with books and research papers focusing on how to alleviate the pain of the dying and those who care for them. It constantly reminds her of the reality she lives in.
It was also a strange experience for Debra to listen to the same persuasive speech she used to give as a professional about why it was so important to go to the caregivers' support group. Now, that speech was coming from others, such as her former student Denise Swenson.
Swenson, who has master's and doctoral degrees in social work and works with patients and caregivers at Missouri Cancer Associates, asked Debra to trust her and to go when she first refused. Finally, she followed Swenson's advice. It was the right thing to do. Among others who understood how she felt, she learned that she's not alone.
Swenson sees Debra as a true pioneer in end-of-life research, a person with a true researcher’s mind.
She's benefiting from her knowledge about the end of life and the role of the caregiver because she knows what good end-of-life care can look like, how valuable hospice can be and how important it is for caregivers to take good care of themselves, Swenson said.
But there's a flip side that can be terrifying, when the death of a loved one lies just ahead.
“On the personal side, I think sometimes you can know too much,” Swenson said.
Plan and control
One of the biggest challenges Debra, as a caregiver, faced was learning how to identify her needs and have the courage to seek help. She didn't feel right asking others to take David to the hospital or take him home after chemotherapy treatments. She deemed it her responsibility and didn't want to burden others. The conflict between his needs and her work became overwhelming.
Known to be chronic planner, Debra likes to take control. But her husband became her priority, and that sense of control vanished.
Debra is now working on a four-year project and will present at a conference in New Orleans next March. But she's known from the start she might have to back out at the last minute.
"Literally overnight, I can be taken out and have to take care of him. It's no different for any caregiver," she said. "You go on, you try to do your work, but knowing that maybe tomorrow you are not gonna be able to come in. As a professional, that's really hard."
Her coping strategy is when "life stops, refocus, take care of the emergency and come back."
Referring to it as a ticking bomb, she said: "At some point, you know it's gonna go off, you are acutely aware that it's ticking, and yet you have to be glad that it's not going off right now," she said. "Be very grateful for the time you have and enjoy it to the most. And we work really hard to do that."
Interestingly, the most productive period of her entire career has coincided with her husband's illness: She has published more than 10 research papers in 14 months.
Hope and the future
Debra's experience with hospice taught her that death can be a beautiful and moving experience. So her biggest fear is actually not the end but the suffering.
When Debra went back to one of her earliest papers, "Redefining hope for the terminally ill" (2002), she was somewhat comforted to learn that the rules still apply.
"One of the most important things that can be given in the face of death is hope," she wrote. "The challenge for those working with the dying is to help them discover meaning in the light of their dying."
Debra now tries to break down big plans into short-term practical goals to concentrate on the present, such as to hope that the tumor will become smaller, that symptoms will be controlled or that the next PET scan will be clear. Maybe it's just to have a good holiday.
She sees herself as a realist and struggles to always think positively, but she's learning to do so. Now she tries to start the day by thinking about something for which she's grateful.
This week, that something is David's latest PET scan result on Dec. 5, which showed that the cancer cells remain smaller than one centimeter. That means the cancer hasn't grown back yet, and David has six more months until the next PET scan.
In one of David's 15 videos named "Following chemo: Time takes on new meaning," David sat in a wheelchair and was showered in beautiful sunshine. He had an autographed basketball from the Missouri basketball team players and the coach in his hand, a souvenir that means the world to a stalwart Tigers fan.
In the video, he says, whenever he hears someone say, "Gee, I can't wait until summer," he replies that he can wait. He doesn't want life to fly by.
Three months ago, David's biggest wish was to die well. Now he hopes to live well.
Debra and David are looking forward to the holiday. First, they're going to take their three daughters to Las Vegas for five days. Then they'll be home for Christmas Day. After that, they're off on a seven-day cruise to the Caribbean with David's three sons and their families.
Their oldest daughter, Jessica Tappana, is pregnant and due in June. Debra hopes David will be there with her to welcome the newborn into the family.
Supervising editor is Katherine Reed.