Caregivers Take On New, Vital Roles

Click photo for larger image Laura Goodwin, shown withe her hisband, Bob Kohler, admits it can be difficult juggling work and family resposibilities in addition to helping Bob deal with his treatment for multiple myeloma.

The burden of multiple myeloma is a difficult one to bear. Not just for the patient, but for those who take on the stressful role of caregiver. Most caregivers do not have any previous experience. The role requires a great deal of strength, both physical
and emotional.

Laura Goodwin of Fayetteville, Ark., was forced to alter her lifestyle dramatically when her husband, Bob Kohler, was diagnosed with myeloma last August. The education director for the Walton Arts Center, an esteemed performing arts institution in Fayetteville, Goodwin learned early on about the difficulty of caring both for her husband and her son, Owen.

“Figuring out how to juggle that was the biggest challenge,” she said. “When you have a toddler in daycare, they come home with every disease known to man, and I didn’t want to expose Bob to anything when his immune system is compromised.” That meant that sometimes Goodwin had to be both mom and playmate for Owen, now 3.

“Bob doesn’t feel like playing sometimes, so (Owen and I) talk about it,” Goodwin said. “I can roughhouse, so when it’s time to roughhouse, Owen has somebody to do it with.”

In order to maintain a sense of normal family life while Kohler was undergoing treatment at the Myeloma Institute for Research and Therapy, Goodwin and her husband rented a home in Little Rock rather than staying in a hotel. That is a more comfortable setting for the times when Owen is in Little Rock with his parents. “We considered moving him (to a daycare) in Little Rock, so we could be together as a family, but I think that would be too hard. Owen stays with my parents (in Fayetteville) a lot of the time when we’re in Little Rock. We’ve got a lot of family support, so we’re really lucky that way.”

Click photo for larger image Harriet Farley (left) and Lenore Arent are social workers assigned to the Myeloma Institute.

One of the biggest challenges Goodwin has faced besides fulfilling her responsibilities to her son is dealing with her job and the long-distance travel that it often requires. Even with a laptop computer and an Internet connection, she admits that it’s not always easy to keep up with both her husband’s medical needs and the demands of her career. “It’s hard to go to the clinic all day and answer e-mails and work on the computer all night.”

The constant struggle to balance home and health issues can take its toll on the caregiver, warn Harriet Farley and Lenore Arent, social workers for the Myeloma Institute. “Very seldom do we hear care partners say, ‘What about me?’ But then something happens, like they become sick, and they have to say, ‘I have to take care of me, too.’”

To help those patients and caregivers struggling with problems related to myeloma, Farley and Arent host a weekly support group, held every Wednesday at the UAMS Family Home. “They are away from their normal support system, so they are forced to develop their own support system,” said Farley, adding that many caregivers stay in close contact with other caregivers even after they leave the Myeloma Institute. “Their friends at home don’t usually understand what they are going through, but their friends here do.”

In time, caregivers take on numerous tasks, ranging from nursing duties to maintaining extensive medical records. “They really are an extension of the medical team,” Arent said. “They’re dealing with the seriousness of the disease while trying to keep a positive outlook for their family. These people really are heroes.”

Lynn Hopkins of Danbury, N.H., was battling a serious medical condition of her own, rheumatoid arthritis, when her husband, Albert, learned two years ago that he had multiple myeloma. “Albert was very strong; he did all the cooking, shopping, cleaning. Now, it’s just the opposite, and I don’t mind,” Lynn Hopkins said. Prior to her husband’s diagnosis, “I couldn’t stand the needles or the sight of blood. I learned how to flush his lines and to give injections from the nurses; it’s something I never would have said I could do. It’s hard work, but we’ve been married 25 years, and I’d do it all over again in a heartbeat.”

Click photo for larger image Jonathon Richards was grateful to have the help of his daughters, India and Alex, in caring for his wife, Claudia Jessup (center)

Jonathan Richards’ life and location have gone in new directions since his wife, Claudia Jessup, was diagnosed with myeloma last March. Based in Santa Fe, N.M., the writer and political cartoonist has continued to work while helping to look after his wife, also a writer. “The nature of my work and the Internet have made it possible to do what I do wherever we are,” said Richards, who found that renting a home improved his outlook about his wife’s lengthy stay in Little Rock. “Having a house, with a kitchen and a yard … it just made us feel a little more like we were a part of the world and not living outside it.”

The assistance of his two daughters, India and Alex Richards, who left their homes in New York to help out during Jessup’s treatment period, made a difference, Richards said. “Taking care of a sick person is not something I was accustomed to. They took on a lot of the responsibility; that’s the benefit of raising kids who turn out well.”

Now that his wife, the author (as Meredith Rich) of “Bare Essence,” a novel that was the basis of a television mini-series and short-lived series in the early ,80s, is in full remission, Richards is able to recognize the importance of remaining upbeat. “I think the way to deal (with the disease) is to believe that it will get better again. Things have gotten better, and they’ve gotten worse. Hopefully, we’re on a stretch where they will continue to get better.”