Husbands and Wives Living With Multiple Sclerosis

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

Disclosures

J Neurosci Nurs. 2005;37(1):20-27. 

In This Article

Discussion

As caregivers, the study husbands and wives were concerned with limiting the negative effects of MS and preserving and improving their spouses' and their own quality of life. There were gender differences in how the study participants experienced their caregiving roles and how they expressed their feelings. The husbands mainly described their experiences objectively, but felt anger about human and environmental barriers. The wives related their experiences with much more feeling and described their pain.

The men acted as protectors of their wives' time, energy, and employment opportunities and were angry at those who did not understand the effects of MS on its sufferers. These husbands demonstrated their support by assuming more responsibility for household management, participating in giving injections, and going with their spouses to see their physicians. The women described with great feeling major lifestyle changes and role reversals. They became advocates to help their husbands maintain independence and existing roles.

The lifestyle of the caregiving spouse of a person with MS changes, often resulting in a poorer quality of life (Gregory, Disler, & Firth, 1996). Some husbands and wives described experiencing stronger marriages and relationships following the MS diagnosis and indicated that they worked to make these results happen. Although men and women process their experiences in different ways (Navaie-Waliser, Spriggs, & Feldman, 2002), participants in the current study all experienced a great deal of suffering in silence.

The people with MS were fearful that their spouse would leave them or put them in a nursing home, but they did not express this fear for a long time. The wives longed for a safe place to be heard, so they welcomed the focus group. They sought support and psychosocial help but were given medication for the depression. There is a tendency to label the suffering of patients and families as depression instead of accepting it as a legitimate and normal response to a life-changing condition (Frank, 1998). These focus group participants wanted support, not medication.

Although husbands talked objectively or with anger, wives frequently shared their pain, identifying their emotional needs in strong ways. They described the effects of their husbands' MS on them, the process of deciding whether to stay in the marriage or leave, and the other hard decisions they had to make. They talked about encouraging their husbands' independence and maintenance of his functional ability, perhaps because they feared their husbands' slip into dependence. They expressed a strong need for someone to listen without judging them, care that life is difficult, and ask how they are doing.

Gender differences were important. While other researchers have noted that many spouses fear being disloyal and therefore, are reluctant to express their concerns (Rees et al., 2001), these men and women saw themselves as experiencing new roles that demanded adjustment; both groups reported experiencing pain and frustration, but also growth. When a spouse develops a serious illness, there is a direct effect on his or her partner; each is concerned not only about his or her spouse but also about his or her own life (Kuyper & Wester, 1998). This effect was especially evident among the wives, who would have liked to relinquish the role reversal in their marriage.

All of the participants identified the desire and need for information and support, which corresponds with other findings (Gulick, 1994). It is unfortunate that this issue still has not been resolved in the healthcare setting. The participants who gleaned information from the Internet were aware that this information could be inaccurate and were distressed by this awareness. The lack of information may have been the stimulus for these couples to experiment with complementary interventions. This experimentation can have serious health consequences because the combination of some of the therapies can reduce the benefit of some prescription medications and cause unpleasant side effects (Courts et al., 2004).

MS has a psychosocial effect (Benbow & Koopman, 2003; Courts et al., 2004; Hakim et al., 2000; Mohr et al., 1999). The wives were eloquent in expressing their difficulties, describing MS as the "third person" in their marriage, as affecting the whole family, and as stimulating anger and thoughts of leaving the marriage. The wives had difficulty assuming some of the roles thrust upon them; hence, they encouraged their husbands to be independent and pushed them to be more active. Friends and family were a source of stress because they did not understand MS. Friends tend to disappear because they feel too threatened by the suffering and are unable to face the tensions and demands of the illness (Frank, 1998).

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