This is the first installment in a three-part series on Share the Care — organized, long-term, in-home volunteer caregiving support for people with diseases like ALS. The other two articles look at the jobs that can be done by volunteers and keeping a circle going . The concept comes from Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill by Cappy Capossela and Sheila Warnock (Fireside, 1995).
Share the Care circles are groups of volunteers who provide organized, long-term, in-home caregiving support to people affected by chronic illnesses.
These circles aren’t just for those with large groups of friends or church affiliations. Anyone with a need and the ability to ask for help can form a caregiving circle. One of the hardest parts of doing so is simply getting over the resistance and getting started.
Why organize a formal circle?
Many people with ALS are used to being the givers, not the receivers of help. They and their immediate caregivers often try to do it all, calling on a spouse or the same one or two helpers when necessary (often with increasing feelings of guilt) and gratefully accepting any unsolicited help, whether or not it meets their immediate needs.
This type of informal arrangement can work fine in the beginning, but as ALS progresses and needs become greater, a more organized approach is required to prevent burnout. Ideally, you should start organizing your circle before the need becomes acute, in order to ensure that help is firmly in place when you need it.
There are benefits to all parties in creating a formal caregiving circle:
For primary caregivers: An organized circle provides a reliable schedule tailored to the family’s needs. Caregivers actually end up asking for help less often. Because of the way jobs are assigned, primary caregivers don’t have to worry that volunteers are doing something they don’t want to do. Best of all, organized circles allow caregivers more quality time with their loved ones and more time to attend to their own needs.
For volunteers: Anyone who has ever experienced the high of making a difference in someone’s life knows exactly what volunteers get from Share the Care. Organized circles also allow volunteers to schedule help at their convenience, pick jobs they like to do, and have the support of a volunteer team, so everyone knows he or she isn’t alone.
For people with ALS: An organized circle ensures a regular stream of visitors, combating the isolation that may come with ALS. Patients often are relieved that their primary caregivers are getting a break.
And letting people help is a unique service people with ALS can provide. Anne Swisher, MDA health care services coordinator in Houston, asks, "If they don’t take their turn on the receiving end, what will all the givers do?"
Suzie Cowan of Memphis, who organized a Share the Care circle three years ago for David Jayne of Rex, Ga., agrees. "Please ask for help, because it makes everyone’s life better!"
Whom to ask?
A caregiving circle starts by asking for help from just one or two people. These people in turn make calls and organize volunteers.
Suzie Cowan lives in a different state from her longtime friend David Jayne, who has ALS and relies on a ventilator, power wheelchair and computer speech program. Cowan organized a Share the Care caregiving circle for Jayne three years ago when he and his wife divorced. The circle "allows me to live my life as fully as possible," Jayne says.
"The circle should not be put together by the [primary] caregiver," Cowan emphasizes. "The caregiver already has his or her hands full. Plus, it’s hard for volunteers to turn down immediate family, but with an outsider they can be brutally honest."
Consider asking good friends or neighbors with a talent for organizing, extended family members, a social worker or counselor, or someone from a religious or service organization. (It helps if you belong to the organization, but that isn’t always necessary.)
Check with your local MDA office to see if the staff knows of any volunteers who may be interested. Some towns also have volunteer centers.
Next, organizers should sit down with the caregiver and the person with ALS and brainstorm whom to invite to join the circle. Possibilities include people from work, school, community or hobby activities, and church; neighbors, former co-workers, etc. Go through address books, old yearbooks and the holiday card list. Make a personal appeal to a group.
Don’t rule anyone out. Even people who don’t live nearby may be able to help, for example, by calling an insurance company, coordinating a schedule or simply becoming an e-mail buddy.
The first meeting
Once names of those willing to help have been identified, organizers should call each one personally and explain the situation. These calls should emphasize that no one will have to do it all, and that volunteers can contribute as much or as little as they want. Invite interested people to an organizational meeting.
Share the Care offers sample formats and forms for these organizational meeting. Key elements include: knowing in advance the family’s specific needs; providing participants with information about ALS and its effects; and gathering information about the kinds of jobs participants are willing to do and their availability to do them.
The resulting circle doesn’t need to be large — about a dozen will do. If not enough people join, start with what you have and hold a second meeting later. Circles often grow over time.
"Don’t be afraid to ask people," advises Mark Reiman, an ALS patient from Seattle whose caregiving circle was organized two years ago. "There will probably be a few who will not want to or be able to, but most will be enthusiastic.