Typical chores for most of us are things like mowing the lawn, shopping for food, cleaning the dishes, taking out the trash.
But for Eric Werts, chores are also things like scratching an itch on his leg. Rubbing a tired eye. Moving from bed to chair. Lifting a hand that’s holding a fork.
Werts, 68, has amyotrophic lateral sclerosis — what’s commonly known as Lou Gehrig’s disease, or ALS. It’s an unforgiving illness, robbing the sufferer of muscle control as it progresses. The typical patient dies in three to five years, though some have been known to live longer.
Werts gingerly describes his situation as a “horror,” but he also says he’s grateful and comforted — blessed, in fact — by the overlapping communities of care that are helping him cope with his decline by sharing the burden of his increasing needs.
It’s called a Share the Care group, and it’s based on a book Werts read when he and his wife, Ruth, were living in Portland, Maine, and struggling to accept his shocking new diagnosis. Share the Care is a model that’s catching on with the families and friends of people suffering life-threatening or fatal diseases like cancer or ALS.
The ALS Association’s Oregon and Southwest Washington chapter helped the Wertses pull their group together based on the circle of friends they developed when new to their North Salmon Creek neighborhood. That network began with folks who attend St. Luke’s Episcopal Church in west Vancouver, where Eric is a priest — but other friends and neighbors have also been involved.
“A community of care became necessary,” said Robin Lewis, Werts’ daughter. “How many families go through something similar but never reach out and ask for help? It can be very isolating. But there are people who want to do this. Never once have we asked for help and not gotten it.”
Having that help lets family members like Robin and Ruth head out for dinner or a movie or a social visit — to retain some semblance of a normal life in the midst of ongoing crisis.
Through an ALS support group, Eric said, he’s familiar with two situations definitely headed for caregiver burnout: one where a wife is insisting on shouldering the entire burden by herself, and another where the ALS victim is insisting his wife be his sole caregiver.
“He didn’t want anybody else touching him,” Eric said. “But it’s all too much for one person.”
Mundane and powerful
Ruth Werts kicked things off by recruiting four couples who agreed to a regular rotation of coordinate care and chores for one weekend per month. Following that pregame huddle was a big organizational meeting open to anyone who might be interested in checking it out. The Werts’ home — chosen for its wide-open spaces connected by big openings, not hallways, that would be easy for Eric to maneuver a power chair through — was packed with more than 50 interested people. They were welcome to take on exactly as much as they wished — a lot or a little.
From that pool of goodwill, the four coordinating couples — plus Ruth, Robin and Robin’s husband Mike — have managed to keep volunteers coming and going from the house on a regular basis. The volunteers take care of everything from shopping and cooking to bathing and helping Eric with some personal functions — or just keeping him company, even narrating a good book.
Den Mark Wichar, a member of St. Luke’s Church, has been reading aloud to Eric from the volume “Care of the Soul” by Thomas Moore, a bestselling inspirational writer, as well as helping with more physical tasks.
“It’s been a powerful experience,” Wichar said. “It’s an enormous challenge, physically and in other ways too. But when you’re touched by someone this special, you don’t forget and you don’t turn your back.”
“I feel blessed that we’ve been able to offer the little support we have,” said Lee Weaver. Lee and his wife, Daphne, are back-fence neighbors who pitch in with mundane tasks like shopping, cooking and mowing the lawn. He said he wishes the family would ask for more, because his tendency is to want to respect their privacy, not barge in offering help.
But Eric said knowing that kind of eager help and caring are right outside his door is a great comfort.
“At the most basic level, it’s been a great relief knowing there’s that help,” Eric said, “but much more importantly, it makes me feel grateful and loved. It is wonderful to be part of a community that really gives. It gives me a profoundly positive outlook on the goodness of people. Especially the dear people like these, gathered around me.”
That said, he added his “pitch” about ALS: It’s a relatively rare disease, he said, so it doesn’t get the attention — and research dollars — of something like cancer. There are something like 30,000 people living with ALS in the United States at any given time.
“And yet the ALS patient is in great need of support and equipment,” he said. The local ALS Association chapter is instrumental in serving families like the Wertses any way it can, from helping coordinate the Share the Care group to lending equipment like motorized scooters.
You can learn more about the ALS Association by visiting http://www.alsa.org or calling 503-238-5559 or 800-681-9851.
And you can learn more about Share the Care at http://sharethecare.org. Excerpts from a Share the Care book on that site provide a good basic guide for someone looking to set up a group, from the people to consider inviting to the fears and reluctance — loss of privacy, loss of control — the patient may experience in adapting to the situation.
In Eric’s case, that doesn’t sound like it’s been a problem.
“I learned early on that modesty is a luxury I can’t afford,” he said. “I also learned that spilling on the patient is fair game.”
That comment brought howls of laughter from Lee Weaver, who recalled his struggles with Eric’s socks.
“You may not believe this, but we actually have a lot of fun,” he said. “There’s a lot of humor involved in learning how to do something like pull on another man’s socks.”
