Hospices could "sharethecare" in outreach programs

Idea is to build caregiver networks

One description of the national sharethecaregiving program is that it is like returning to the beginning of the 20th century, when people formed connections and helped one another, particularly when sick.

"It helps people get back to the connection with each other that we're missing so often," says Sheila Warnock, founder and president of Sharethecaregiving Inc. of New York, NY. Warnock also is a co-author of the book, Share The Care.

Sharethecaregiving is a non-profit organization that since its founding in 1995 has provided individuals, communities, and organizations with a pragmatic model of group caregiving for people at the end of life.

For example, the model explains how to answer people's questions when they ask, "How can I help?" And it offers suggestions for holding meetings that turn individuals into a caregiver team

Warnock has seen hospice programs at work, and she was involved in an informal network of caregivers when a good friend was dying of cancer. It was after her experience as a caregiver that she envisioned an organization in which caregiving assistance could be shared by a group of people.

"Sharethecare can certainly be used by hospice, and hospice has volunteers to supplement the help for people who don't have any caregivers," Warnock says.

Warnock's friend Susan was diagnosed with glandular cancer in the 1980s. Her friends decided to help her as she underwent treatment and, eventually, began to deteriorate physically.

While her group of 10 caregivers met most of her needs early on, she finally reached the point of being unable to leave her bed, and so the group hired a nurse's aide and finally had her enrolled in hospice care, Warnock recalls.

"The hospice staff were absolutely sensational," Warnock says. "They gave us a great sense of relief knowing that our friend was properly cared for, especially when dealing with her medicine."

Susan had been on very strong medication for pain that went straight to her bones, Warnock says.

"It was so difficult, we ended up having her move to the hospice," Warnock says.

The caregivers had formed such a bond that as Susan neared death, Warnock, and another caregiver friend named Kathy, inadvertently brought Susan the same gift: a piece of beach glass that symbolized their friendships and good times spent at a summer beach home.

Warnock has spoken at hospice conferences about the non-profit organization, and she discovered some common obstacles.

"I discovered we both have similar problems," Warnock says. "That is that nobody wants to talk about what hospice is, and nobody wants to talk about being a caregiver until they need it."

This is why caregivers often work in isolation, she notes.

"When I took care of my mother, I did it alone and didn't ask for help," she says. "I was a classic burned-out caregiver, and people who are burned out don't realize how stressed out and isolated they are, and so they don't know how to ask for help."

What they really need is a friend or family member to say, "Hey, you need some help," Warnock says.

Hospices are starting to use sharethecare to assist caregivers in building networks and support systems, she notes.

"Even if someone has a short time to live, it can make a huge difference to have a group because the group's show of love and support is so outstanding and beautiful," Warnock says. "It can also help to bring a better quality of life to the patient."

Kathy, who had been a caregiver for Susan along with Warnock, also had died while being supported by a network of caregivers.

"I remember when my co-author Kathy — a few weeks before she passed away — wanted to go back to Fire Island where she had a house," Warnock recalls. "There are no cars on Fire Island, so you have to walk, bike ride, or boardwalk, and it took seven of us to get Kathy in a wheelchair with all of her equipment out there, but we did it."

That experience was extremely important to her because Fire Island was her favorite place in the world, and she couldn't have had that last wish fulfilled without the help of a caregiving group, Warnock adds.

Warnock wrote the book on sharing care and founded the organization to help others do what she and her team had done for Susan.

"We're a grassroots movement," Warnock says. "I've been doing this training to introduce sharethecare to health care professionals, social workers, nurses, clergy, and anyone who is helping people who are ill."

Ideally, hospices could introduce the concept to patients and tell them about having a group provide caregiving, Warnock suggests.

"Maybe some people in the hospice who deal with family issues could identify two people to start the group and help them brainstorm and do the steps needed to get started, "Warnock says. "Hospice staff also could work with them as time goes on, and they'll be able to see if there are any issues coming up for family and friends as the person is getting close to death."

For hospice patients who do not have family and friends to provide caregiving help, then perhaps hospice volunteers could do so, Warnock says.

"I encourage that the volunteers bond in a group," Warnock says. "That's the reason why sharethecare works over the years."

Ideally, a hospice would help a family develop a mix of their own caregivers and volunteers, she notes.

"It's best to have people who know the person because they can make a difference, but certainly volunteers are wonderful," Warnock says.

The whole idea is that sharethecaregiving is a flexible model that provides caregivers with strategies for meeting together and collaborating on the patient's care, she says.

"Caregivers meet and work together," Warnock says. "You can't throw out the meeting part because it won't sustain if you do."

The idea is that they will meet, share accomplishments, and develop bonds that are independent of the dying person, she says.

Warnock says that sharing caregiving responsibilities taught her that you have to take care of yourself as a caregiver and you have to step back to allow others to help.

Caregivers receive as much as they give through the experience, she says.

"I learned I have so much strength that [before] I didn't know about," Warnock says. "I'm able to handle emergency situations now, and I had never done this before."

Some caregivers find that this is the way they can use the nurturing that they might have used with children, but haven't used because they never had children, Warnock adds.

"Everybody in the caregiving group learned something," she says.

The caregiving group for Susan involved 12 women, including good friends, co-workers, cousins, and others, Warnock recalls.

"People have a lot of support they sometimes don't think about," she says.

For example, among the people who have benefited from the sharethecaregiving model was a teacher whose students became caregivers. Another person was in a jazzercise class in which fellow jazzercise students got together to share caregiving, Warnock says.

"It helps if people broaden the possibilities of who they want to ask for help because sometimes people you think you could ask will have an issue of their own and can't be in the group right now, while someone else you hardly know will step up to the plate," Warnock says.

While caregiving is not a burden, it is a commitment of a certain amount of time every week, Warnock adds.

One of the biggest benefits is the friendship that develops between caregivers: "The caregivers were all smart, talented people, and we were all thrown together to help her, so we went from acquaintances to people whose opinions I have great regard for," Warnock says.

Need More Information?

  • Sheila Warnock, Founder, President, sharethecaregiving, Inc., 551 Fifth Ave., 28th floor, New York, NY 10176. Telephone: (646) 467-8097. Email: sw@sharethecare.org. Web site: www.sharethecare.org.