Those caring for a seriously ill, frail, or disabled person often think they should be able to provide all the care that is required on their own, without asking for help. But nothing could be further from the truth.
Part of the reluctance to ask for help is rooted in an assumption that friends, neighbours, co-workers, and acquaintances won’t want to get involved, or they don’t have anything to offer. In fact, many family caregivers, who pluck up the courage to reach out to the social network of the person they’re looking after, find a diverse group of people ready to lend a hand. They’re just waiting to be asked. These groups are sometimes described as circles of support.
One challenge is knowing precisely what to ask potential helpers and how to ask it. Share The Care™ is one approach to forming a circle of support. It provides practical step-by-step advice on how to get a group started and keep it going.
The following article on Share The Care was originally posted by Laura Downs on Caregiver Exchange December 17, 2013.
How to organize a Share The Care™ group
Sheila Warnock and Cappy Caposella went from being total strangers to co-caregivers for their mutual friend with cancer for three and a half years. And the gift they gave to their friend grew into a valuable resource for everyone in the form of "Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill" — a book they wrote about their caregiving experience.
In 2009, Share The Care™ was brought to Southwestern Ontario from the United States in a campaign funded by the South West Local Health Integration Network (LHIN) and led by Eugene Dufour, a clinically-trained therapist with more than 25 years' experience as a bereavement specialist and compassion fatigue educator.
“I think the practical nature of the program made it exciting and it shows how you can organize everything throughout the caregiving process,” says Dufour. “It allows families to rally together and include other people in the process.”
The model guides those who want to help through the process of forming a caregiver “family,” holding meetings to organize tasks and coping with caring for someone who is ill. Included in the resources are checklists, guides and forms to help organize the caregiving group. It aims to help prevent caregiver burnout, empowers the lives of those involved and turns offers of “what can I do to help?” into positive actions.
“It gives steps on how to ask people for help. It has all the forms, how to set up a schedule— the kind of things people want to do but sometimes they don’t know how to offer or how to start,” says Dufour. “So maybe they provide a meal once a month or do laundry every other day. You can be involved as little or as much as you want.”
He says he often hears about people’s remarkable and unique experiences with the program. For example, a woman in British Columbia wanted to assist her ill sister who lived on the other side of the country. She found that she was able to help by scheduling her sister's appointments online. In another case, the owners and employees at a car dealership, and the dealership’s clients, rallied together to care for one of their mechanics during his cancer treatments.
There are now five Share The Care™ stations in the South West that provide groups with resources and hold information sessions to tell people about the program. Dufour is currently the Coordinator for the Huron-Perth station and works for a family health team in the area. His work bringing the campaign to Ontario inspired him to co-author a book on hospice palliative care called “Embracing the End of Life.” He says many of the Share the Care™ principles of building relationships, sharing responsibilities and letting people know how they can help can apply to end-of-life care too.
The seven principles of Share The Care™:
- Sharing responsibility is the key to not burning out
- It won't work unless everyone gains something personally
- Know your limits and stick to them
- There's no one right way to do it
- Anyone who wants to help should be encouraged
- Trust the group; support each other
- Keep your own life in good working order
The Share The Care book is available as a paperback or e-book.
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