Husbands and Wives Living With Multiple Sclerosis

Nancy Fleming Courts; Amanda N. Newton; Linda J. McNeal


J Neurosci Nurs. 2005;37(1):20-27. 

In This Article

Caregiver Roles

Both groups discussed assuming the caregiver role, which was focused on supporting their spouse, limiting the negative consequences of MS, and preserving their quality of life by promoting spousal independence and sense of self-worth. Both groups believed that the caregiver role was congruent for women and not for men. One man stated, "Men as caregivers . . . we are really not used to that." The wives agreed, saying, "Women are usually the nurturers, the carers... I don't know what my husband would have done. . . he probably would have left me . . . 'cause he wouldn't know how to cope with it."

There were gender differences. The roles of the men were predominately that of "protector" and those of women were "advocate." The men's protector roles included attempting to protect wives' energy by confronting church and family members, halting or changing activities perceived to overburden or fatigue their wives, and advocating for activities and employment that would ensure their wives' feelings of self-worth.

The men discussed in detail their instrumental support of their wives. They swapped information on the best ways to give injections without bruising, types of syringes used, and the use of ice to ease the administration of the injection. They were involved in taking over household chores, accompanying their wives to physicians' appointments, and providing physical care for their wives, when possible.

Men saw themselves as protectors of their wives' environment and activities. They paid special attention to ensuring their wives' sense of self-worth and protecting them from excessive energy expenditure. Men, as protectors, took an active role in controlling the environment. One said:&ltbr>

I have to go and put the law down at our church, because they ask her to do things because they know she was always available when they had some job nobody else would touch ... She had too much on her!

One focus group participant said he protected his wife's energy by intervening with their active 5-year-old son: "I have to sit down with him and work with him and tell him 'Mommy's not feeling good' and whatever."

Another husband was sensitive to the timing of exacerbations. He noted that his wife had three exacerbations at Christmas, explaining them by saying Christmas was "a big deal" with lots of family and stress. He said he told his wife, "let's don't do this quite so strong. . . start buying the presents in September and let family know that this is causing stress."

Other examples of how the men protected their wives were revealed in statements such as, "She keeps going until she is about to drop, and I keep pulling her back saying, 'slow down.'" And, "I have a way of saying you need to go to bed, and it's kind of like a little kid . . . go to bed now!" Another, "She still wanted to play golf, and I said, 'You'll be laid up for 3 or 4 days. Don't do that.'" One man confronted his wife's employer, insisting his wife was able to continue working and demanding fair treatment in the workplace. The husband's attitude was, "Who cares who we piss off? We need to let them know that my wife is still an able and working person first." The husbands looked for other ways to increase their wives' sense of self-worth, such as encouraging them to participate in volunteer activities.

Two men mentioned that their wives thought they might leave the marriage. One explained that his wife thought, "So he's going to leave me," but she did not talk about this for a year. Another husband commented, "It was in everything that she read; the spouse left within the first 2 years." After the fear had been voiced, the husbands were able to reassure their wives. The men discussed their issues and support in a cognitive and concrete manner. "Learning acceptance is bad. It's hard," but after a period of time, it was accomplished.

Wives intervened in very different, but equally strong, ways. Wives described their caregiving roles as advocates, with a focus on keeping their husbands involved, functioning, and independent by not doing things for them that they could do themselves and encouraging them to participate in more activities. One wife commented, "Sometimes [I'm] pushing him to do things that he wouldn't ordinarily do." She insisted, "I told him he was going on the trip with us, and that was the way it was going to be."

The wives described interventions they used to keep their husbands independent. One wife said "I got him this black lab [I] think has been really good for him. He can get out [with the dog]... [It's] really important for him to be able to be independent." They did not routinely go with their spouses for medical appointments because their husbands could do that alone.

Wives became advocates for health care. During the diagnosis period and several drug trials, one woman said, "MS was never brought up until, actually, I finally put my foot down . . . [and asked] can we please have an MRI?"

The wives also were advocates for mental health treatment and quality-of-life concerns. One wife, seeking help for her husband's depression after the MS diagnosis, described their experience with a counselor as follows:

[W]hat we got wasn't primarily about MS or dealing with disease-induced depression, which is different from clinical depression, which is different from grief depression. We got a talk and an offer of more pills . . . so I think . . . what he would like the best for both of us, is just some genuine support. . . because taking the pills. . . isn't the only answer.

Another wife, who had previous experience with psychotherapy, sought help for herself to deal with her husband's MS. Her actions motivated her husband to join a support group, which he found helpful; he eventually sought counseling for himself.

Even though men were protective of their wives' energy and women pushed their husbands to stay independent, both groups acknowledged being overprotective at times. One man said, "Sometimes I am too doting, you know, or too aware of [her] barriers." A wife explained, "I get overprotective; my problem [is] being overprotective. [I'm] trying to help him out in ways that he really doesn't want." Another said, "[I] found myself being hypervigilant . . . with his situation."


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