When Barb Otterness and Jan Rickbeil get together each week, they might fold laundry, make supper or just sit and talk.
These are little things, but very meaningful to both women. Otterness, a part-time preschool teacher, visits Rickbeil as a volunteer through Tamarisk, an Andover-based nonprofit that provides nonmedical assistance to people dealing with life-threatening illnesses.
Eight years ago, Rickbeil, 52, was diagnosed with ALS, or Lou Gehrig’s disease, a debilitating disease for which there’s no known cure. It’s getting harder and harder for her to get around, and her speech is greatly impaired.
Rickbeil’s three children, whose ages range from 17 to 22, act as personal care assistants to her while her husband works. When Otterness stops by the family’s home in Cedar, it gives everyone a much-needed break, Rickbeil said during their get-together last week, via a computer program that reads aloud her typed-up words.
Jeanne Haus, program manager for Tamarisk, said that’s what the organization is all about. Its mission is simple yet profound, she said: “We’re there to provide comfort and support to people” as they near life’s end.
If Tamarisk gets a call “from someone in that spot, we do our best to get a volunteer there right away,” Haus said.
Volunteers work in ways to meet the client’s needs. That could mean they do anything from running errands to playing games.
Usually, volunteers stick with a client until the end, which can be weeks, months or years. The service is free.
For people whose decline is slow, hospice care may not be an option. Often, they need help with everyday tasks or just someone to talk to, Haus said.
The same goes for their regular caregivers, she said. Also, in some cases, Tamarisk may work hand-in-hand with hospice care workers. Whatever the situation, “we walk that journey with them,” she said.
Right now, the organization has 40 volunteers who tend to a similar number of clients on a regular basis. One volunteer has been with the group since its start in the early 1990s.
These days, Tamarisk is getting more calls than ever. That’s why the organization is always on the lookout for more volunteers to do everything from home visits to office work, Haus said.
Volunteers go through an application process that includes background and reference checks and a 20-hour training program. They learn “what it means to serve in the midst of this, what their boundaries are and what they’re supposed to do,” Haus said.
The best medicine
Otterness says the volunteer gig feels like a natural fit. Although she’s always been a helper-sort, when she’s spending time with Rickbeil, it’s more like meeting up with an old friend — not work, she said.
They can relate as moms, cat lovers and people of faith. They also both like to “kid around,” and when they’re in the same room, laughter is usually part of the equation.
It’s nice to find common ground with someone, Otterness said. “I told Jan, ‘I wish I’d met you 20 or 30 years ago. Boy, would we have had fun.’ Jan told me, ‘At least we met now.’ ”
The women text each other throughout the week, just to say hi and check on things, she said.
The feeling is mutual: “I think I like her company most of all,” Rickbeil said of Otterness last week, with the text-to-speech program on her tablet.
The women clicked from the get-go. Sometimes, it seems as if Otterness can read Rickbeil’s mind.
“She finishes my sentences,” Rickbeil said.
“Just like your husband probably can, right?” Otterness said.
An electronic voice quipped, “But he’s usually wrong.”
Otterness admires Rickbeil, who always seems to be in high spirits, she said.
“I try. It’s better than being depressed or down,” Rickbeil said. “You almost have to, to survive this crazy disease.”
Gretchen Hanson, who lives in Ham Lake, started Tamarisk out of her then-Fridley home in 1993.
Hanson, who retired from the organization a decade ago, studied hospice care with its founders in England, before it came to the U.S. She was inspired to join the movement, but establishing a residential-type hospice facility involved a lot of red tape.
Remembering what her parents went through when her dad was dying of cancer, Hanson developed the Tamarisk concept. She began training volunteers to go to people’s homes to lend a hand with things that fall outside the scope of medicine. It’s about the “spirituality of presence. People are trained to simply be there for these people and be a companion,” Hanson said.
Having someone like that around “gives people a sense of purpose, of value.” It also provides a respite for the caregiver, she said.
The volunteers enjoy it too. Their clients “aren’t wearing masks anymore. You get to see the real them, the gifts that they have,” Hanson said.
She’s passionate about this work that she’s heard is meeting a need that often goes unaddressed, despite advances in end-of-life care. “Nobody can plan for this. None of us knows what health issues may come up in our homes and when suddenly we may be faced with this horrible thing,” she said.
Patti Bocken turned to Tamarisk for help several years ago, as her husband, Ron, battled Huntington’s disease, a genetic degenerative brain disorder.
She wanted to keep him home as long as possible, but she also needed to keep working. Also, she worried that “he was and has been fairly isolated.”
Tamarisk sends a couple of volunteers to her home every week. “My husband looks so forward to seeing them. They’re the highlights of his week,” she said.
Susan McGuire, one of those who see Ron regularly, said she gets even more out of the visits than the family. Sometimes she reads to him. Or, he might nap or watch TV. Ron, who is in a late stage of the disease, doesn’t have the same focus that he once did, so McGuire will sit next to him and read her Kindle, “just to be there with him,” she said.
For McGuire, who arrived at Tamarisk after her husband’s death a dozen years ago, the volunteer work is deeply fulfilling, especially with her own children grown. “It makes me feel worthy and alive, like I’m helping out the world,” she said.
Along the way, she’s met “such wonderful people from all walks of life.” She writes about her clients in her journal, as a way to remember them.
The experience has shown her that no matter what someone’s age or background, “We’re all facing the same things. It’s been real enlightening for me,” she said.
Anna Pratt is a Minneapolis freelance writer.