Hospice volunteers help families cope with loss

Marcy Oleksiuk (center) with Les Kincade and his wife, Judy, at their home. Oleksiuk is a hospice volunteer assigned to the family.
Marcy Oleksiuk (center) with Les Kincade and his wife, Judy, at their home. Oleksiuk is a hospice volunteer assigned to the family. (ED HILLE / Staff Photographer)
Posted: November 23, 2012

Marcy Oleksiuk visits Judy Kincade once a week for a heartbreaking reason, but you'd never know it from the mood in the room.

The Kincade household is relentlessly cheerful as children and grandchildren constantly come and go.

Once a week, Oleksiuk is among them. She chats with Kincade, gives her an autographed picture of a favorite star, and recently exchanged Hurricane Sandy survival stories. But most of all, Oleksiuk listens to country music or watches T.J. Hooker reruns with Kincade's husband, Les.

He is the heartbreaking reason. Les Kincade is gravely ill after a series of strokes and other ailments including Parkinson's disease.

Oleksiuk is the hospice volunteer assigned to a family whose sparkling mood seems, in part, a tender effort to keep a loved one in high spirits.

"When I go to see Les, I talk to him. He [can't] talk to me," said Oleksiuk, 58, of Willow Grove. His wife says he blinks once for no and twice for yes. When I'm there, he blinks and blinks and blinks."

For hospice volunteers, their mission has nothing to do with the medical and practical components of caring for someone who is terminally ill. There are doctors, social workers, nurses, and home health aides for that.

Volunteers fill in the blanks.

They sit by bedsides, listen to family stories, read to patients, or just sit with them when family members need to run an errand or just take a break.

"It's about maintaining hope," said Jean Francis, a former volunteer who is volunteer coordinator for Holy Redeemer Hospice, based in Northeast Philadelphia. "It's always present. It just changes. It might not be hope for a cure but hope for a pain-free day."

Federal law requires that all hospices receiving Medicare reimbursement use volunteers for a portion of patient care.

In 2011, there were 450,000 volunteers providing hospice care in the United States, according to the National Hospice and Palliative Care Organization.

Francis calls them "chameleons" that turn into whatever a family needs within limits - companionship, emotional support, respite.

They are often retired medical professionals looking to keep a connection to a former career. They may be the loved one of someone who died in hospice care and view volunteering as a form of giving back.

Volunteer Dennis O'Neill's mother was in hospice care during the latter stages of her bladder cancer.

"I was just very impressed with the work that was done," said O'Neill, of Bensalem, who recently retired after 38 years of working in the freezers of a seafood company. "When [the work] stops, you need something to do in life, and I can't think of anything better."

Volunteers are trained to offer support and compassion but also to set boundaries.

"People always ask, How is it that you don't become depressed?" O'Neill said. "You just can't let yourself. You have to remember you're there for a reason."

It isn't always easy.

Volunteer Kathy Stover of Northeast Philadelphia sat with an elderly woman who had dementia and was unable to talk or hold conversation but could still sing. The two sang "Heart of My Heart" together, and then the woman's husband, her primary caregiver, joined in. Stover stopped and watched as the couple sang to each other.

"It was very difficult for me to hold it together," said Stover, 71, a retired legal secretary from Northeast Philadelphia. "When I got in my car, I cried."

But volunteers say it's not always about the sadness.

Oleksiuk, 58, says she has learned how families show grace even in the most dire situations.

Oleksiuk began volunteering after raising six children and cutting back on her work as a nurse.

"I always wished that I could just sit and listen to a patient without the time constraints and having to do that professional task," Oleksiuk said.

When Oleksiuk walked into the Kincade house in Warminster earlier this month, Les Kincade was in his wheelchair. A country-music show was playing on a television opposite the hospital bed that takes up most of the small living room.

Les Kincade, 78, was a truck driver for the state Department of Transportation before he retired in 1996. Judy Kincade, 71, is the primary caregiver but has help from the couple's six children. The family team includes Oleksiuk, who helps provide the good cheer when she bends down and greets Les Kincade with a "How handsome you look today."

With Marcy, Judy Kincade says, "I know he's in good hands."

Contact Kristin E. Holmes

at 610-313-8211 or kholmes@phillynews.com.

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