Husbands and wives living with multiple sclerosis

By McNeal, Linda J.
Publication: Journal of Neuroscience Nursing
Date: Feb 2005
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.

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 serf-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).

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.

Husbands expressed the need for friends and family to know more about MS, too. One husband said "The biggest thing ... or problem is the public view of MS ... for my family, her family, and friends to know exactly what this is." Another husband stated, "The greatest problem that she's had ... is outsiders understanding this, and even her own parents don't really comprehend how difficult it is for her." They experience resentment from friends. According to one focus group participant, a friend said "'We're always coming to your house. You don't ever come to ours'."

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