Teaming Up to Share Caregiving

by ALSN Staff on Sun, 2000-10-01 17:00

St. Louis family finds small miracles' in network of caregivers

When news of Jeff Hilliard's ALS diagnosis spread throughout his St. Louis community, friends responded with an outpouring of home-cooked meals, sympathy and offers of "what can we do to help?"

Hilliard, 39, and his wife, Diana Wagner-Hilliard, knew they would need help as they coped with Jeff's rapidly progressing ALS symptoms. The pair, both attorneys, was already kept hopping with demanding careers and three children: Danielle, 7, Abigail, 5, and Andrew, 6 months.

Jeff Hilliard with Abigail, Diana, Andrew and Danielle

Hilliard began experiencing ALS symptoms in June 1999, and the disease was diagnosed in May.

Wagner-Hilliard ultimately decided she needed to harness all the offers to help, and create some kind of system to organize the meals and donations that kept coming in.

Meanwhile, five women at the Hilliard's Queen of All Saints Parish formed a prayer group to ask for divine help in meeting the Hilliards' needs. But the women in the Catholic church wanted and offered to do more.

Wagner-Hilliard turned to the prayer group for help in organizing the deluge of kindness, and together the women created what's now known as JAG, or Jeff's Angel Group.

JAG consists of dozens of volunteers who take care of the mundane yet essential day-to-day tasks at the Hilliard home. The Hilliards also use MDA services and receive care at the MDA/ALS Center at Washington University in St. Louis.

JAG "captains" oversee dozens of volunteers in specific areas: grocery shopping, laundry, transportation, information gathering, lawn care, bill paying, house cleaning, baby-sitting and more. Fellow attorneys help fight insurance battles and work on other financial matters. There's even a group that's planning to build a room in the Hilliards' basement for out-of-town guests to stay in when they visit Jeff.

As his condition has progressed, the overall effort has become an amazing show of generosity and caring. Friends and even people who'd never met the Hilliards now assist the family.

When someone offers to help, Wagner-Hilliard or a captain graciously accepts, but also asks the person to fill out a form about specific forms of help.

"There were a lot of people coming up to her [Diana] saying can I help, can I help?" said Peggy Hart, a member of the prayer group and laundry captain. "Rather than just say sure, we could say, `Well, here are the areas we need help in. Which one sounds like your bag?'"

A well-oiled machine

The system is designed to keep volunteers giving and doing no more than they're able, and doesn't heap too much on one person.

By having a concrete, scheduled duty or chore to help the Hilliards, friends who felt powerless are given an easy way to help.

"A lot of times people are willing to help, but they just need an idea, such as `Can you do two loads of laundry on Monday?'" Hart said.

Those involved with JAG say it has brought out the best in many people, and the effort has even garnered some local media attention. "The donations that have come in, including supplies, plumbing man hours [for the basement project] are just remarkable," Hart said.

JAG leaders looked to reference books such as Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill by Cappy Caposella and Sheila Warnock.

Along with forms and charts to help volunteers organize such an effort, it has ideas, tips and strategies for group caregiving.

Hart said one key to JAG's success is a master list maintained by one volunteer who's the communication captain. The list details everybody who has helped or wants to volunteer, and what they would like to help with, Hart said.

"It's on the computer spreadsheet and it has what times are best for them, too," Hart said. Wagner-Hilliard knows if she needs something, she can just call a captain and it gets done. Captains meet weekly and frequently consult with Wagner-Hilliard to assess the family's changing needs.

Along the way, acquaintances have become close friends and other relationships have strengthened. The family has discovered invaluable "hidden talents" in friends, Wagner-Hilliard said.

For instance, friends with nursing backgrounds have been able to research equipment, and help give the Hilliards an idea of what Jeff's future medical and equipment needs could be. Currently, Hilliard uses a manual wheelchair for mobility. His speech is also affected by the disease.

Keeping a 'postive house'

Most of all, JAG has given the family quality time to be together, and a new source of energy as "fresh faces" appear to help each day.

"Jeff has frustrating days, Jeff has very sad days, but all in all his spirits are up. It's a very positive house, and that's what all these people help us do," Wagner-Hilliard said.

Wagner-Hilliard's advice to other families faced with ALS is simple: Accept help, and don't be afraid to delegate duties.

"Let people help you. They want to, they need to, and you need them to," Wagner-Hilliard said. "You're doing as much good for them as they're doing for you. You've got to let these people help because it's the only thing we can control."

Hart agreed, saying it's hard to compare anything to the satisfaction of helping someone in need, and it's a great feeling to know you've alleviated a burden, even if it's as simple as a trip to the grocery store.

"From our church standpoint, it's an opportunity to live out what we're talking and preaching about," she said.

Wagner-Hilliard can take comfort in knowing that the women in the original prayer group — and surely many others they've come to know — are still praying for her husband and family.

"They're praying for that big ol' miracle, and I have to keep reminding them that small miracles have happened by all these people coming out."

Sharing the Care: How to Organize a Group to Care for Someone Who is Seriously Ill by Cappy Capossela and Sheila Warnock, 1995. Fireside, Simon and Schuster. $13.

The Resourceful Caregiver by the National Family Caregivers Association staff. A yellow pages of resources and information for caregivers. To order, call (800) 667-2968. $16.95.

Internet sites:

National Caregivers Library

National Family Caregivers Association

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