Sheila Warnock, founder of ShareTheCaregiving, speaks about the need for a group
By Deb Sperling
Sheila Warnock and co-author Cappy Capossela first published Share the Care in 1995 after a group of 12 friends, including the authors, took care of a working divorced mother who was diagnosed with cancer while also raising two teenagers. “We took care of her for three-and-a-half years and figured out a way to do it so that no one had to carry the entire load,” Warnock explains. They later taught other groups how to do what they did. “We really understood the importance of what we had done, because we felt major transformation in the person, a sense of, ‘We can do this.’”
Later, Capossela herself was diagnosed with a terminal brain tumor, as was her father. Warnock organized a Share the Care group to help her, and she and 33 friends took care of her for the next 10 months until she passed away. “It was a pretty trying experience because she, during this course of 10 months, lost her ability to speak, to write, to talk or even move without help,” Warnock says. “That is what prompted me to create our nonprofit organization ShareTheCaregiving. I built the website, and updated the book—the second edition was published in 2004.” An e-book version of Share the Care will be released Dec. 21.
Since the time Warnock created the ShareTheCaregiving organization, she also developed a full-day training workshop for health professionals and clergy, which is accredited by the New York State Nurses Association. “The reason for wanting them to know and understand Share the Care was to reach the most caregivers, because caregivers are so busy, so overwhelmed, so exhausted, they don’t even think about looking for help.”
Q: Are there any particular problems with sharing caregiver responsibilities in New York City?
Sheila Warnock: It’s tough in New York because New York is like 100 cities or towns. But the whole idea, the whole model, was born here in New York City, so it came out of total necessity.
I have done a number of trainings in the city, but it takes time to get it really launched here. It’s a grassroots kind of thing, and once people have been in a Share the Care group, once people have been touched by this and participate in a group, they go on and help other people who need help. They’ll recommend Share the Care; they’ll send the book to somebody. It’s been a lot of word of mouth. Still, the professionals and clergy are important because they see people and families struggling to hold it together just about every day. So it’s about introducing it to them. It takes a bit for the family and the care recipient to accept help. That’s the biggest stumbling block: to realize that the quality of life can be so much better if they are not doing every single errand, job, meal themselves.
So the idea of a Share The Care group is people who know you, helping you, because they know and care about you, so they’re gonna go really far to do everything they can. The other idea is that your group of friends will take care of the whole family.
New York is a challenge, because there’s so much here. But New Yorkers have great hearts, so this is where it was born, and I’m sure it’s gonna stay.
What sort of groups have been formed for what sort of issues?
Share the Care has been used for every known illness, disability, terminal, temporary situations—even for multiple births. We had people in Texas taking care of quadruplets. It could also be used to help older people who are in pretty good shape to stay in their homes, if they had some assistance. Because the population is rapidly growing, the amount of value that caregivers provide… they are holding a long-term care system in place because they’re doing all this work for free.
What is the additional value of Share the Care given the situation in our country with health care and insurance issues?
It empowers the caregivers to take charge. If you wait around for somebody else to figure out how to take care of your loved one, forget about it. There are so many wonderful programs that are being cut because of lack of funding or cutbacks in staff. There aren’t enough professionals to do everything.
Because we’re all separated by technology—we’re separated because of fractures in the family, people are divorced; they move away; they retire; they move to another place—we really have to get back to helping each other, as a way of life.
On the website, sharethecare.org, there is a form where people can submit stories about their group. What has been the response to that?
I used to get a lot of feedback on that, but I don’t so much these days right now. The way I learn now about some groups is when they download our forms, and they register. So I know what kind of illness they’re dealing with and what state or country they’re located in and the size of groups can vary—eight people to over 100.
Older adults don’t want to have tons of people, they only want certain people around them, but there are still ways for those inner circle people to be supported by outer circle people. It works for just about everything: It’s a skeleton and you build it to work for your situation, and there’s lots of ideas or suggestions that came from groups around the country.
We’re also building a way for groups to work online. That’s in the works, and should be up next year. It’s going to be a way for groups to communicate, schedule and use our forms and systems online. There are already tools on the web that people can use to do schedules, but we operate a little differently. That’s why it’s important for us to have our own management tool. Those other systems don’t offer any guidance for how to get started, how to stay motivated or what to do when problems arise. Share the Care offers a full lifecycle for the group. It’s really written to the group because people are also going through their own emotions, and looking at their own lives when they’re taking care of someone as a friend.
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