This is the second 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 basics of starting a circle 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).
A key to a successful Share the Care group is matching the right person with the right job. The easiest way to do that is to simply let people do what they like.
During the initial organizing meeting for a Share the Care group, volunteers learn about the family’s specific needs. They then indicate on a form which tasks they like, love or hate, and the time commitment they feel comfortable making. Jobs are assigned and schedules drawn up based on this information.
"It’s so important that the leader of this meeting dispel the belief that any one person would have to do anything they didn’t want to do, nor would they ever be the only person doing something for their sick friend," emphasizes Suzie Cowan, who organized a caregiving circle for her friend with ALS, David Jayne of Rex, Ga.
"If you give people a task they’re suited for and are comfortable doing, they lose their fear of getting involved," she adds. "Give them a group to work within, a structure to fit into. Give them an opening to say yes or no — and oftentimes they come back with an even better suggestion of a way they can help."
Velda Fox, 46, of Nashville, Tenn., agrees completely. Fox has an unofficial circle of volunteers who came together after she learned she had ALS in September 2002. She finds that people "just fall into what they are good with. [You have to] notice what people are naturally drawn to. When people are asked to help with something they enjoy, it lessens the burden for both parties."
Odd jobs and massages
||The late Mark Reiman, shown with his wife Julie and son Josh, said his family greatly
benefited from an active Share the Care group, both through practical daily help and "powerful life
lessons about giving and receiving love."
What kind of help can a group of untrained relatives, friends and neighbors provide? In Mark Reiman’s case — and for many others with ALS — Share the Care circles provided practical and emotional support for the entire family.
Because his wife, Julie, worked part time, Reiman needed volunteers who could spend chunks of time at his home in Everett, Wash. Two years ago, close family friends organized a Share the Care group that kept his needs covered and allowed Julie to keep working. (Reiman, who lived 12 years with ALS, passed away April 29. He was 49.)
On Monday mornings, a retired nurse who used to sing in his church choir came by to do range-of-motion exercises and visit. On Monday afternoons Reiman’s brother-in-law, Rey Guajardo, helped with bathing, dressing and tube feeding, then would watch movies with Reiman or hang out while he worked on the computer. Guajardo left at 5 p.m. and two volunteers alternated covering the two hours before Julie got home.
Julie usually was home on Tuesdays. On Wednesdays, Guajardo came back in the morning, then another choir member came in the evening. She would feed Reiman, take him for a massage or rub his feet.
Thursdays were "David Days," when a retired family friend, David Haynes, spent two to four hours with Reiman. While at the house, Haynes sometimes did odd jobs and gardening, or took Reiman out to the store or a movie.
On Fridays, Reiman’s brother, David Reiman, spent the entire day, telecommuting to his job via computer from the Reimans’ home.
In addition to these steady helpers, "free floaters" came by on weekends to take Reiman to the movies or church. "From a caregiver point of view, I loved it when he got to get out and I got to be alone in the house," Julie says. Special needs — such as hanging the outdoor Christmas lights — also were handled by free floaters.
"They’ve made it possible for me, my wife and children to live richer, fuller lives," said Reiman in an interview shortly before his death. "I’m pretty sure if the group members were asked, they would say their lives have been enriched too."
About 30 volunteer caregivers provide regular help for David Jayne, who uses a ventilator and has a paid live-in caregiver. Cowan, who has coordinated the circle long-distance from her home in Memphis for the past three years, makes 30 to 40 phone calls to fill in each three-month schedule.
Quarterly schedules give people more choices of times to help. "This way most people just help once a quarter," she says. "Typically someone will clean his house four times a year, or cut the grass once or twice during the growing season."
People usually aren’t locked into a set date, but have a range of time in which to do a job. "We just ask that they call and say when they’re coming over."
Weekly grocery shopping is split up each month among five women. Scheduled volunteers bring by occasional meals, especially when Jayne’s children are visiting. Free floaters put together birthday celebrations for his children or decorate his house for Christmas. One woman shampoos his carpets each spring.
About 60 volunteers sold cookie dough and solicited funds for an Eyegaze computer system. And several volunteers have helped Jayne go to Washington, D.C., where he’s lobbied Congress to make changes in Medicare home health care rules.
Most of all, volunteers give Jayne something to do. "They always make time after doing the job to have a conversation with him, which is what ‘changes his scenery’ most of the time," Cowan says. "It’s not just come in, do the job and leave."