Hospice Workers Comfort Families in Time of Need

Burt Johan dozes briefly, then opens his eyes and exchanges smiles and bits of talk with the family and friends gathered at his bedside. Soon he drifts off again, but only for a moment.

Although it hasn’t been one of his good days, he is fighting sleep because he loves having visitors and doesn’t want to miss anything.

Burt, whose bed fills up the dining room of his La Habra home, quietly shares his frustration when Lorraine Hubbell takes the seat nearest him.

“I sleep day and night lately,” he says.

“It’s probably the medication. They want to keep you comfortable,” she reassures him.

Once a large, robust man, Burt was enjoying an active retirement until he started suffering back pain and breathing difficulties last December. In March, he was told he had lung cancer, which had spread to his spine.

After he spent 10 days undergoing tests and radiation therapy at St. Jude Hospital and Rehabilitation Center in Fullerton, his family arranged for his care to be continued at home through St. Jude’s Hospice Program.

The hospice services provided by nurses, home health aides, social workers and bereavement counselors as well as volunteers like Lorraine Hubbell are available only to terminally ill patients who are expected to live no more than a year.

Burt, a 73-year-old native of Holland who often entertained members of the Dutch Club in Anaheim with his piano playing, has lost 70 pounds and is hardly able to move without help. But even on a day when his family is more worried about him than usual, he greets visitors with a broad smile, a sparkle in his eyes and a remarkably strong handshake.

He even manages to lighten the atmosphere with a touch of humor, telling someone wanting to schedule a return visit, “I’m here all the time.”

Hubbell is touched by Burt’s ability to charm and elicit laughter from those who are there to cheer him up, and her eyes are filled with tears when she leaves his bedside.

As a member of the hospice team whose role is to bring comfort to Johan and his family, she’s been trained to maintain emotional distance while offering compassion and support. But the Johans have made her feel so at home and she’s grown so close to them that she knows she’ll still be included in their inner circle when it’s time to grieve.

Jerry Davis, volunteer coordinator of the St. Jude Hospice Program, says it’s not unusual for volunteers to form such a close bond with the families they befriend.

One volunteer was the first to be called by a distraught woman whose husband had died in the middle of the night. The volunteer went to the home immediately and stayed long enough to help make arrangements for the funeral, which he attended. A year later, he’s still in touch with the widow.

Another volunteer played a special role in the family of a terminally ill woman in her 80s who was raising her two grandchildren alone. The volunteer became a surrogate mother to the children, whom she helped prepare for their grandmother’s death. She made sure the teen-ager didn’t miss out on such milestones as a high school prom and a 16th birthday celebration, and the two remained friends after the grandmother died.

Volunteers are cautioned against getting too close to patients and families, however.

Although about 10 of the 65 hospice volunteers have been with the program as long as five years, some have had to take a break or quit because their own grief over the loss of a patient was so intense, Davis says.

But most are able to get close enough to share the burden of someone else’s grief while maintaining enough distance to keep their own feelings in check. They know it will soon be time to move on to the next case, and there will be others in pain needing someone to lean on for a while.

“We teach them to build a thin wall to protect themselves,” Davis explains. “They need to be there for the family, not in it with them.”

The volunteers, who devote three to 10 hours a week to each case, do chores and run errands to ease the burden on families. But they are also there for anyone who needs to talk, and they often become confidantes of patients, spouses or children trying to come to terms with death.

“Family members may not be able to talk to each other at a time like this because they don’t want to hurt each other,” Davis says. “The volunteer is someone they can turn to who can be nonjudgmental and offer unconditional love.”

Volunteers who are trained to listen and respond with empathy--and never to take sides--are especially welcome when friends of a family facing terminal illness withdraw, something that happens often “because they don’t know what to say,” Davis notes.

The volunteers are taught to follow their instincts when talking to terminally ill patients or family members--and not to be afraid to ask questions.

“If they don’t want to talk, they’ll say so,” Davis tells volunteers.

During 18 hours of training over a six-week period, volunteers also learn about family dynamics, the progression of a terminal illness, how to make a patient more comfortable without getting involved in medical care and how to help the family through the bereavement process. They are even encouraged to confront death by visiting a funeral home.

Davis says many volunteers admit they are afraid of death themselves. Working with families facing terminally illness may help them come to terms with that fear, but, she cautions, “If it strikes home, they’re going to fall apart just like everybody else.”

She says adults of all ages join the hospice team despite their fear of death because they have a “strong gut feeling that they want to help. It’s scary with the first patient, but once they establish a relationship, they get a lot out of it.”

Lorraine Hubbell, a retired La Habra resident, says she had reservations because “I didn’t know whether I could handle the painful part--watching someone die.”

But she wanted to help ease the burden on families because she had seen the stress her mother went through during her father’s long battle against cancer.

“She became a stooped woman, like the world was on her shoulders,” Hubbell says, “and she remained that way even after he died.”

In spite of her own “childlike fear of death,” Hubbell felt deep down that she had the compassion it would take to comfort others. But at first, she had to learn to accept the fact that not everyone was willing to accept what she had to give.

Hubbell--a gentle, soft-spoken woman--watched soap operas with one elderly woman who was dying of breast cancer. When they talked, there were no profound exchanges about life and death; the woman told Hubbell how she was feeling physically but didn’t share her emotions.

Another patient with whom she spent many hours let Hubbell know she wasn’t needed anymore after a grown daughter came home to help.

“She didn’t want anyone who wasn’t close to her to see her die. That was hard for me. I felt a little rejection. I had to realize that what was important was the family’s needs--not mine,” Hubbell says.

“So much depends on whether the family and the patient will let you in. If they’re closed, they won’t open up all of a sudden and accept a stranger in their home.”

In the home of Burt Johan, however, she never felt like a stranger.

She says Burt has talked to her about the stress he fears his illness has placed on his wife, Roel, and about his difficulty accepting what is happening to him after having been healthy all his life. And she feels she is developing what could be a lasting friendship with 66-year-old Roel.

“Lorraine has helped me tremendously,” says Roel, who has asked Hubbell to do errands she finds especially difficult because of a back injury that requires her to use a cane.

Roel, who tends to be stoic, says the talks she has had with Hubbell have helped her let go and cry.

“Lorraine has shown genuine interest--she feels with us,” Roel adds. “And she is never pushy.”

The Johans’ daughter-in-law, Kara, says she has found herself confiding in Hubbell, too. “She asks the kinds of questions that allow you to face what’s on your mind when you might not be able to say it to someone else. I’ve unburdened myself without even knowing it.”

One recent evening, Hubbell phoned her just as she was picking up the telephone to call the volunteer. “We had both been aware that it had been a rough day for Burt, and we wanted to talk to each other. We were on the same wavelength,” says Kara, who lives in Orange.

She says her family is trying to focus on life--to help Burt experience as many positive moments as he can--rather than dwelling on the process of dying. Hubbell’s presence, which Kara says never seems intrusive, is helping them make death “the last thing that happens” to Burt.

Hubbell used to fear that she would come home depressed if she allowed herself to get close to a family. But that hasn’t happened because, she says, dealing with death as a hospice worker has made all the riches in her own life more vivid.

“It’s really made me appreciate life and use every moment. I’m truly grateful for each day I have.”