The Rev. Rebecca Love (top center), brings spiritual counsel and friendship to patients and families at Heartland Hospice in Westchester, Ill., including Jennie Welnowski (bottom center), who has been in hospice care for two years, and her husband, Ed (left). Social worker Grace Onyegbule (right) also provides care.
Hospice care can ease the stress for patient and family Tasha Serio, a registered nurse, and daughter of UCC minister the Rev. Harry Serio, pastor of St. John's UCC in Kutztown, Pa., works as a hospice nurse in the Berks Visiting Nurse Association. Last month, she spoke to a group of clergy and caregivers on hospice care because she believes that teaching others about hospice is just as important as the work she does with her clients who are terminally ill.
Serio says that one of the goals of hospice care is not to step in and provide hospital or nursing home type service in the home, but to teach the caregivers how to take care of their loved ones at home.
Once a patient has been diagnosed as having approximately six months to live, many insurance carriers will provide for the patient to begin hospice care. But Serio stresses that the diagnosis from a doctor is just a formality; more importantly, a readiness on the part of the patient and the patient's family is required. Hospice patients must no longer be interested in aggressive treatment or diagnostic studies. They must want to stay at home and be as comfortable as possible.
In the state of Pennsylvania, the registered nurse acts as case manager, managing the pain medication and acting as a liaison between patient and doctor. But the entire hospice team -- health aides, social workers, the chaplain -- aid the family for the sometimes difficult transitions ahead. And often, says Serio, the most difficult hurdles are surprising.
"One of the hardest things to get into a home is something as simple as a bedside commode, or a hospital bed," says Serio. These changes to a home environment can sometimes feel like an invasion, a sign of the patient getting weaker, says Serio. "Sometimes their emotional well-being outweighs what we think would be best for them physically," she says. "But there are times when we need to say, 'I know you don't want a bedside commode, but for your safety, for the safety of your wife who is taking care of you, this is something you have to have.' We try and do it as gently as possible."
Another barrier Serio cites is the "chicken soup mentality" of caregivers. Once a loved one loses his or her appetite, caregivers feel as though they are not doing enough. Serio says terminally ill patients lose their appetite for a reason, usually because their body can no longer process the fluids. The kidneys and stomach stop working as well, and forcing fluids on a patient could cause discomfort. Serio teaches caregivers to fi nd other ways of soothing the patient, perhaps with ice chips or cool mouth swabs. "We keep them active in the care so they can feel that they're doing something," says Serio.
Once a patient dies, the hospice nurse goes to the home to pronounce the patient deceased, and to call the doctor and the funeral home. Medical equipment is quickly removed so that the home environment is restored. Serio says follow-up bereavement visits to the family's home also are integral to the bereavement services offered by hospice. Twice a year, Serio's hospice association holds memorial services for family members who have lost a loved one.
While Serio says the hospice team of professionals and volunteers have specific expertise in helping families with a terminally-ill loved one, she says parish ministers can add an extra element of love and support to grieving families. "If the clergy understand the hospice philosophy," says Serio, "they can better support their parishioner."
UCC chaplain's care provides spiritual comfort to families
The Rev. Rebecca Love, a UCC minister from Westmont, Ill., is a chaplain for Heartland Hospice in nearby Westchester, Ill. Countless people have asked Love how she can get up and go to work each morning. "Isn't it depressing?" they ask.
The question gives Love a chance to explain how she copes with seeing the pain and sadness of families who are losing a loved one. In her fundamentalist upbringing, Love says she once viewed death as a curse. "It made me angry," Love says in her soft-spoken way. "The only good thing about death was that heaven was on the other side."
Love smiles. "I don't believe that any more. Death is a part of the way life was created to be on this earth," she says. "Death is a gift when the time is right."
Being a spiritual counselor and friend to patients and families brings her up close to the courage and faith displayed by the people she meets in her vocation. Once patients are able to let go of the chemo treatments, dialysis or other exhausting efforts to prolong life, Love says that the focus of energy shifts from "surviving" to something richer and more meaningful.
"We've had people stop feeding tubes and they've had a week or more where they're able to talk. They're more alert, their lungs clear up more," she says. "They have relative quality time with family, where they can say what they need to say and have the energy to appreciate the family being around."
Love hopes that potential clients will see hospice as a gift of life rather than a death sentence. "Life is a series of deaths, letting go, moving on," she says. "When families are able to let go and say, 'It's okay, Mom, for you to go,' they can stop that struggle. Those are the peaceful deaths. Those are the ones where you feel surrounded by love, you feel the presence of the spirit. It says we're able to surrender, to let go and to trust."
Caregivers, church, hospice equal extended family
In September, UCC member Bennie Rogers, terminally ill with cancer, lay dying in a hospital bed in Advocate Christ Hospital, a UCC Council for Health and Human Service Ministries-related facility. Under hospice care, Bennie's condition had worsened so acutely that he had been hospitalized for what his family thought would be his last hours. Then, a miracle happened.
A few floors below, Bennie's youngest daughter was giving birth to a daughter, Adrianna. Bennie's dying wish—to see his 10th grandchild before he died—was about to become a reality. After the birth, Bennie's daughter visited him, brandishing a Polaroid picture of baby Adrianna, and things began looking up. Soon after, Bennie had improved enough to be released from the hospital and sent home.
Under hospice care through Advocate Hospice in Chicago, Bennie is surrounded by his family in the comfort of his own home. And he still sees baby Adrianna often, along with his other grandchildren. "I've held [Adrianna] close to him so he can see the baby," says Mary, his wife. "It reminds him of the children we had some years ago."
"Some people are very private and don't want people in their homes, but I say why not?" says Mary, who shares the caregiving responsibilities with Bennie's sister. "If someone is sick and you can't handle it, and you need help, you open the door and let them in."
Mary says she considers the hospice nurses, chaplain, social workers and volunteers part of her extended family now. "They talk to you," says Mary, "and they listen. That's key in my book." In addition, Mary and Bennie feel loved and supported by their church family, Trinity UCC in Chicago. "I feel hugged and kissed all the time," smiles Mary. "We're embracing each other."
"I had been carrying this weight on my shoulders for a long time," Mary adds. "I was about to fall to pieces." When Mary called to inquire about hospice services, she immediately knew she had found the help she needed. "They said, 'We're not going to leave you alone,' and they haven't." They're walking me through it."
Program looks out for caregivers, too
Carol Dodds, a member of Congregational UCC in Hart, Mich., makes it her business to keep watch over her congregation and community members. As a volunteer at Oceana County Medical Care Facility who has completed the Watchman Volunteer Program, Dodds makes sure patients and family members know about support groups and adult care options.
The Watchman Program is a national training ministry that began in North Carolina. Dodds explains that being a Watchman sometimes means watching out for the caregiver as much as the patient. "Sometimes the caregivers get burned out before they can investigate where they can get help," she says. "There's a need all around for someone to be watching out," she says.
"Part of hospice's philosophy is that yes, you're dying," says Dodds, "but we don't need to die daily." She recounts a favorite story about a little girl who comes home late from school because her friend dropped her doll and it fell to pieces. "I couldn't fix her doll," the girl tells her mother, "but I did sit with her and help her cry." Dodds sees her role as a volunteer in that same way.
"It's a privilege to walk with these people as they're dying," says Dodds. "That's the closest you get to God."
Many community resources are available for UCC members who have a loved one in need of hospice care. Hospice information is available from most hospitals and physician's offices.
If your local church has a parish nurse, ask that person for assistance. "Hospice focuses on allowing a person to die as comfortably as possible, with dignity and surrounded by family and friends," says Lisa Thomas, parish nurse for the UCC staff at the Church House in Cleveland. "A parish nurse can direct church members to the local hospice resources in their communities."
"Parish nurses also can, with the patient's permission, give information about the patient that can help the hospice team provide care," Thomas adds. "Even during hospice care, the church member maintains a relationship with his or her parish nurse and church family."