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

Abstract and Introduction

Abstract:          Multiple sclerosis (MS) frequently is diagnosed in young adults. Coping with symptoms of MS is challenging not only for the person with the disease, but also for his or her spouse. The well spouse often assumes the caregiving role. The purpose of this qualitative research was to investigate the experiences of persons whose spouses have MS. Twelve people participated in a 2-hour focus group: 8 men and 4 women. The husbands were, on average, 50 years old, and the wives averaged 55 years old. The length of time since diagnosis ranged from 2 to 11 years for the husbands and from 3 to 13 years for the wives. The focus group discussions were audiotaped and transcribed verbatim. Participants talked freely. Four major themes emerged: caregiver roles, need for information, relationship changes, and barriers. Men attempted to protect their wives' energy, intervening for them. Wives encouraged independence in their husbands. Spouses need information about MS, complementary interventions, and support. They want increased public awareness of invisible symptoms and awareness in the workplace of continuing capabilities of persons with MS. Role reversals were challenging for the women who felt that "MS is the third person in a marriage." Spouses need help to maintain appropriate boundaries. Limitations of the study include the small, economically homogeneous sample and the single encounter with the subjects. A longitudinal intervention study is needed.        

People expect to become caregivers for babies, children, and elderly parents. They do not, however, expect to become caregivers for a chronically ill spouse at a time when they are focusing on developing a career, providing for their family, and caring for their children. Thus, spousal caregivers of people with multiple sclerosis (MS) face unique challenges and demands. With its physical, social, and psychosocial effects, this disease permeates all aspects of family life (Artinian, 2001; Holland, 2003; Weihs, Fisher, & Baird, 2002).

MS is unpredictable and symptoms vary, even among those with the same type of MS. The psychological and emotional aspects of MS and the uncertainty regarding symptoms and prognosis are challenging to patients and family members (Coleman, Rath, & Carey, 2001). MS demands flexibility. During periods of exacerbation, the family must quickly mobilize resources and move into crisis mode (Patterson & Garwick, 1994). Invisible symptoms of MS (e.g., visual and sensory losses, fatigue) can confuse family caregivers. For example, debilitating fatigue, which is characterized by a lack of energy that is worse in the afternoon and evening, can occur suddenly (Kaplan, 1999) and may be hard for a spouse to understand and appreciate.

MS does not alter normal family developmental stages but rather adds new demands and challenges. For example, child care does not stop when one parent has an exacerbation; thus, the well parent often adds child care responsibilities to his or her other chores. Caregiving partners experience fear of an uncertain future, social disruption, financial difficulties, and isolation (Rees, O'Boyle, & MacDonagh, 2001).

Spouses are expected to provide support while needing support. They, too, experience numerous losses: role and relationship changes, and possible career and financial changes if their wives or husbands had been employed. These stressors can lead to ineffective self-care for the wife or husband; the reciprocal effects of illness can create enduring strain for partners (Kuyper & Wester, 1998; Pakenham, 2001). Indeed, the effects of MS ripple through the family, with each person's reaction affecting other family members.

Patients frequently have fluctuating symptoms. Spouses attempt to make sense of the nebulous symptoms while trying to be supportive and continuing their normal routines. The time from first awareness of symptoms to diagnosis can be long, frustrating, and confusing. The waiting and wondering, with unrewarding and untherapeutic encounters with healthcare professionals, can lead to feelings of powerlessness and loss of a sense of control for people with MS and their spouses (Courts, Buchanan, & Werstlein, 2004).

This research investigated the lived experience of spouses of people with MS. This investigation was a first step toward developing more effective interventions for these caregivers.

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