Create a balanced relationship even with MS in the mix.
by Kelly Pate Dwyer
Robert Berry always had a project going on around the house, whether it was splitting firewood, building cabinets or working on his Jeep, until his multiple sclerosis limited his physical abilities. Though the 68-year-old from Cliffdell, Washington, now uses a wheelchair, he still rolls up his sleeves every chance he gets—to set and clear the dinner table, put away folded laundry and drive the car. “I can still use a screwdriver. I can change the batteries in the clock,” Berry says. “That sort of thing is satisfying.” These tasks may not be as complicated as the ones he once did, but they all lighten the load for his wife and primary caregiver, Patti.
“In the mornings, I get to relax for a bit and he gets us our tea,” says Patti, noting that she readies it to brew the night before. Patti adds that he not only helps around the house but comforts her when she’s down and helps keep her grounded.
The Berrys, who have two sons and three grandchildren, maintain a strong relationship in spite of the increasing challenges Robert’s MS brings, in large part because they embody the concept of “carepartners.”
The carepartner dance
“With carepartners, there is a true partnership, in which the person with MS gives back to the person caring for him or her,” explains Nancy Law, executive vice president of Programs & Services for the National MS Society. “In a balanced partnership, each partner gives and receives, and both feel like they make valuable contributions to the relationship—even if they do it in different ways than before MS came along,” she adds.
Couples can create that balanced give-and-take, and relieve stress on the primary caregiver, in a variety of ways, including sharing household chores, Law says. “And there are simple ways of giving back to one another, such as saying ‘thank you’ and being a great listener.”
There are also practical tips for becoming carepartners (see sidebar at right), but the first step for any couple living with MS is to address the ways that the disease has changed their relationship. That starts with communicating openly about feelings—such as fear, anger, guilt, frustration, sadness and resentment—along with learning to accept the disease and nurturing intimacy, all of which feed into one another.
Ditch the blame game
Just as MS is different for every individual, so is caregiving. One person takes to that role naturally, while the next resents it. One person living with MS is fiercely independent, while another wants or needs more help. Or one caregiver may work full time because her partner’s relatively mild symptoms allow it, while another caregiver may have taken early retirement to help his partner because of the severity of his disease. Common to many couples however, is a reluctance to open up about their feelings, says social worker Mary Rzeszut, MSW, LCSW, who counsels people with MS and their families at Winthrop University Hospital in Mineola, New York.
“Day-to-day life with an illness is so overwhelming, many people don’t stop to think about how to communicate,” she says. What’s more, they feel vulnerable opening up. “If someone is frightened about his or her partner having MS, the tendency may be to hold back feelings so the person with the disease won’t think, ‘My partner’s not strong enough to handle it’ or ‘My partner can’t be supportive enough,’ ” because the person with MS already has so much on his or her plate.
However, displaying vulnerability builds trust and fosters open communication, says Rzeszut, who uses a “mirroring” technique to help couples get started. For instance, a woman tells her husband with MS that she feels overwhelmed with work, kids and bills and that he doesn’t acknowledge her stress. Her husband listens without interruption, then echoes what she said, which may be, “I hear you saying that you feel overwhelmed and that I often don’t see how stressed you are.”
Then it’s his turn to share. Through this process, the two validate each other’s feelings without judgment or blame and work together to figure out possible solutions.
“Sometimes the day-to-day gets to you,” Patti Berry says. “You have to recognize it and admit it out loud to each other, so you can get rid of it.” She admits communication isn’t a perfect process. “If I get frustrated and mad—and I do—I’ll rant and rave and cry,” she says with a laugh. “I know that when it’s done I have to apologize.”