This is the final 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 first two articles looked at the basics of starting a circle and some of the jobs performed by volunteers. 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 can go through a kind of "fireworks effect" — they flare brightly for a while, then slowly fade. For a circle to burn steadily over the long haul, it has to be flexible and responsive to the family’s changing needs.
Patsy Séguin-Tremblay’s sons Alexandre (left) and Patrick receive special attention from her "circle of angels."
When her circle was first organized, Patricia (Patsy) Séguin-Tremblay, 40, of Ontario, Canada, was still able — with help — to use the bathroom by herself. But as her abilities waned she required full assistance with her personal care.
"When Patsy started to have difficulty being understood, some volunteers got nervous and were ill at ease, so we lost some people," says Jacinthe Laforge, the Ontario social worker who organized the circle for Séguin-Tremblay in 1999. "And Patsy didn’t want just anyone to perform very personal tasks. As Patsy’s needs have increased, it’s become more difficult to fill in the gaps with volunteers."
Instead, close family members and Canadian social service workers now provide Séguin-Tremblay’s personal care, and her "circle of angels" cares for her family. Volunteers plan regular activities for her two children, like the "Pizza Aunt" who supervises homemade pizza making.
"This gives my husband/primary caregiver a break and I have the reassurance that my children are having most of their needs met that we can’t at times," she says.
The Laurettes, a care circle for Laurie Russell, 57, of Glyndon, Md., also has changed as her ALS has progressed over the past three years.
"We provide social support rather than caregiving, which she gets from paid caregivers," said Pam Corckran of Baltimore, one of the group’s organizers. Although some volunteers still bring meals and perform small chores, most are scheduled to "keep her connected to the world" by taking her out, bringing flowers, or sending cards and jokes.
"You have to be flexible and understand that this is a person whose needs do change, and who has good and bad days," Corckran says. "Don’t be hurt if they say they don’t want to be with you. It’s not you, they’re just tired."
Communication is key
Most established groups consist of an inner core of "regulars" and an outer ring of "free floaters" who fill in as needed. As circles revolve into new orbits, people on the outskirts can sometimes fall off.
Suzie Cowan of Memphis, Tenn., has kept a highly organized group of caregiving volunteers operating smoothly almost 400 miles away in Rex, Ga., for her friend David Jayne, who has lived with ALS for 15 years. About every two weeks, Cowan sends an e-mail update to 80 people, of whom about 30 are active volunteers. The messages recognize those who have recently shopped, cleaned, mowed, driven, cooked or visited, and provide tidbits about Jayne’s health and activities.
The updates are critical, Cowan says. "They keep people reminded about David, and show he is still a vital person who has a lot to do and is living life."
Julie Reiman, whose husband Mark lived with ALS for 12 years, is flanked by her good friends and Share the Care organizers Aileen Spradlin (left) and Cindy Wilson.
Besides communicating with volunteers, care circle organizers need to keep in regular contact (at least once a week) with the family being served, advises Cindy Wilson of Everett, Wash. Two years ago, Wilson and Aileen Spradlin organized a Share the Care circle for their friend Mark Reiman, who died in April after living with ALS for 12 years.
"Julie (Reiman) and I were in touch daily so it made it easy to find out their needs," Wilson said. "There were times during Mark’s illness that they needed our Share the Care group to pull back and give them a breather. They needed to have family time without a caregiver dropping in. So I would just call the person scheduled to help and let them know of the change."
Thank you goes a long way
Share the Care volunteers get a lot out of providing meaningful help. But an expression of gratitude is always appreciated, says Tamara Moore, 36, of Paradise, Calif.
Moore has a metabolic muscle disorder, carnitine palmityl transferase deficiency type 2, that causes near-constant pain and weakness, with occasional "muscular crises" when she can’t be moved. A single mother of two school-aged children, Moore had to quickly put together her own care team of government help and private volunteers after her divorce.
She’s found that gratitude — through words, gestures, cards and notes — is essential not only for keeping people connected to her care circle, but also to her self-worth.
"It’s important for my dignity that I give back, even if only an encouraging smile or kind words or positiveness," she says. "I respect and fully appreciate everybody and everything who is there for me, even after years of time gone by. This is what helps keep the support circle fully alive."
Cindy Wilson knows exactly what Moore is talking about.
"I have a picture in my mind that sums up the whole experience. Mark was sitting in his wheelchair during the last weeks of his life, when he was unable to use his arms and hands and his words were very limited. After feeding him [via feeding tube], I looked up and saw these two bright eyes looking at me, filled with such appreciation, and he said, in his quiet voice, ‘Thank you, Cin.’
"I hold that in my heart forever."