The Hospice Bereavement Coordinator

Hospice services don’t end with the passing of a patient. During times of loss, families and loved ones left behind are particularly vulnerable to a host of emotions and confusing feelings.

 

If the family is having difficulty adjusting to loss, if they are experiencing disrupting behavior or just need someone to talk to, hospice is there to help them cope for up to 13 months after the patient has passed away. “Sometimes the family seems to be doing very well, but when the death actually occurs, they have a hard time,” says Terrilynn Deavor, bereavement coordinator for AseraCare in Altoona, Pa. Because everyone experiences grief differently, the hospice staff conducts a bereavement risk assessment of the family after a patient has passed away. “We look at the family’s relationship with their loved one, whether young children are involved, if they are able to care for themselves financially. It’s all about meeting their needs.”

The bereavement coordinator maintains contact with the family through individual counseling, sending cards and letters, or recommending books that might help them. Each family is served according to its unique set of circumstances and needs. Hospice can also connect families to community support groups or grief psychologists.

Some people simply need to talk. Terrilynn tells of a woman who lost her son. “She couldn’t get out of her house, her husband wasn’t supportive. She was very depressed and cried all the time” recalls Terrilynn. “We met every Friday at her house for over 13 months. As our Fridays progressed, she came out of her depression. She calls me her angel and says she has come to the point that she can finally accept it. It really makes my job worthwhile. We still send cards to each other.”

During another one of her visits to a family who had recently lost their son to lymphoma, Terrilynn delivered a special gift. Nolan was only 22 when he passed away, but his family remembers him as a gentle spirit who always cared more about others than himself. “He was one of our youngest patients,” recalls Terrilynn. “He always had a positive outlook. He would be an inspiration to anyone.” One of the AseraCare volunteers used her sewing skills to create a beautiful keepsake bear for Nolan’s family. The stuffed bear was handcrafted from two of Nolan’s favorite pieces of clothing.

Terrilynn tells of delivering the bear to Nolan’s mother and sister shortly after his birthday. “Words cannot express her reaction to the bear,” she says. “She was so appreciative and could not believe that we had made it for her from her son’s clothing.” Nolan loved wearing his yellow t-shirt and wrist band. His mother recalls that he even told her to “live strong” after he is gone. “We talked for nearly two hours, and she told me all about her son’s life,” says Terrilynn. Nolan loved sports and the outdoors. He was going to college for Forestry.

“His mother explained how much he loved college,” says Terrilynn. “He was looking forward to the unit on bears.” Nolan had a fascination with bears but missed the unit by one week because he could no longer attend classes. The bear is extra special to Nolan’s mother for that reason. Nolan’s family also constructed a special memorial in their yard. The memorial consists of a serene waterfall and pond, surrounded by flowers and grass. This beautiful area brings his mother peace and a way to feel connected with her son.

Special programs help families to honor their loved ones. An example is a candle-lighting ceremony in which family members each light a candle representing something remembered about their loved one. Another is the Wings for Love program, which purchases butterflies to release in a memorial service with the family present. At most nursing homes, hospice offers a monthly or quarterly memorial service for nursing home staff and families.

Grief workshops during the holidays give survivors coping tools and show them how to remember their loved ones and include them in their holidays. Families are urged not to feel pressured by holiday invitations — that it’s all right to accept only the ones they feel comfortable with. The bereavement coordinator might suggest setting a place at the holiday table for the missing loved one or making a memory wreath to hang up.

Although friends are important at this time, it’s helpful to have trained professionals who understand the grieving process and who can listen without judgment. “Often friends tell them everything is going to be okay,” says Terrilynn. “That’s not enough. I educate them on the stages of grief, and listen and let them know it’s normal to have good days and bad days.”

“Grief is something people shove under the rug because our society isn’t very accepting of grieving people. We help people move through the stages of grief, and we can see them improving. It’s okay to grieve,” Terrilynn adds.

Making a Wish Come

True One of the pleasures for hospice staff is to bring smiles to their patients’ faces, whether that means fulfilling a wish for a longed-for treat or making it possible for a last turn around the dance floor. “Hospice is very individualized. We look at every situation and try to find how we can make this the best for each family and person,” says Peggy Durkin. “We can’t change the course of what’s happening, but we can make patients comfortable and give quality to their final days. Our biggest role is finding what we can do for the individual that makes them feel loved and special.”