When spouses become caregivers: counseling implications for younger couples

Journal of Rehabilitation, April-June, 2004 by Phyllis A. Gordon, Kristin M. Perrone

With increased technology and advances in medical treatment, more people will be living longer with chronic health conditions requiring that more care be provided in the home. Chronic illness frequently creates profound difficulties for both the diagnosed individual and other family members, resulting in increased worry, anxiety, and stress. Illnesses that typically produce debilitating effects in a younger population (e.g., multiple sclerosis, cardiovascular disorders, systemic lupus erythematosus) can lead to additional pressures if the illness worsens and family members assume caregiving responsibilities. Although a number of studies have examined caregiving related to assisting older individuals (Faison, Faria, & Frank, 1999; Guberman & Maheu, 1999; Lieberman & Fisher, 1995; Weinart & Long, 1993), relatively few have focused on younger families, particularly younger spouses who may also be balancing other life responsibilities (Aronson, 1997; Kurz & Cavanaugh, 2001; Lewis, Woods, Hough, & Bensley, 1989). Both the person with the chronic illness and spouse may need to re-adjust established roles within the family structure in addition to facing the substantial task of adapting to serious illness.

There has been much research on marriage and much research on disability, but little research that has combined these two issues (Parker, 1993). This is a crucial consideration as younger couples struggle with adaptation to chronic health conditions and the impact on their relationship. Schumacher (1995) noted that, when a spouse assumes a caregiving role, there are many changes in the patterns of relating, and often each spouse must acquire new skills and insights. The impact of the illness or disability on the relationship between spouses and marital quality may be significant. Illness demands may expend family resources and affect the well spouse's perception of the marriage (Lewis, Woods, Hough, & Bensley, 1989). Both the well and the ill spouse may feel isolated while facing immense concerns. Consequently, these tensions may exacerbate the stress of the illness. As Speziale (1997) described, even minor adjustments to chronic illness, in areas such as sexual intimacy or cognitive and emotional responses, may diminish closeness and cause strain in the relationship.

When examining marital quality in caregiver marriage, one must also consider factors that contribute to marital quality in general. Universal factors that enhance marital quality include love, romance, physical intimacy and communication (Carlson & Sperry, 1999; Sternberg & Barnes, 1988). Coping resources and adequate social support can also enhance marital quality (Lewis & Spanier, 1979; McCubbin & Patterson, 1983). As Kurz and Cavanaugh (2001) noted, a significant underlying component of marital relationships are that "they are voluntary and sexual and can be dissolved" (p. 182). This type of relationship obviously differs from those where a child is providing care for an ill parent (AARP, 2000). Beliefs about caregiving responsibilities may change when one considers the impact on a marriage as opposed to more socially binding roles of parent-child.

Scope of the Problem

Research has shown that individuals who provided care to a spouse with a disability were six times more likely than noncaregivers to experience depression or anxiety (Cannuscio, Jones, Kawachi, Colditz, Berkman, & Rimm, 2002). Caring for a spouse was associated with significantly greater symptoms than caring for a parent with a disability. Further, a study on caregiving from the recipient's perspective revealed that spouses with disabilities had negative reactions such as depression and low self-esteem related to having their spouse care for them (Newsom & Schutz, 1998). Krausz (1988) asserted that the disability of a spouse presents a serious threat to marital quality in caregiver marriages. In a qualitative study, researchers interviewed wives caring for husbands with disabilities (Wilson, 1990) and identified the following three major concerns: (1) the need for constant medical attention, (2) the effect of the spouses' illness on their social relationships with others, and (3) financial concerns.

Purpose of this Study

The purpose of this article is to examine the role of caregiving as it relates to younger spouses who have partners with chronic illness. Caregiver marriage is defined as a legally married couple, where one spouse has a chronic illness or disability. This article will discuss issues related to caregiver marital quality, balancing multiple roles, and ways in which roles may differ for male and female caregivers. Implications for counselors will be explored and strategies provided that may help caregivers effectively manage their roles, sustain marital relationships, and maintain positive family functioning despite the illness problem confronting the family.

Caregiver Burden and Role Strain

According to Faison, Faria, and Frank (1999, p. 243), caregiver burden is defined as the effect of stressors on family members who provide care for a physically or mentally ill person. Although prior research has focused largely on the problems associated with caregiving, more recent research has also begun to identify positive aspects to the experience (Berg-Weger, Rubio, & Tebb, 2001; Veltman & Cameron, 2002). Individuals frequently feel a sense of pride and competence in being able to assist their ill partner. Conversely, Rohrbaugh and associates (2002) note that for spouses assuming the caregiving responsibilities, distress over multiple roles may be inherent. Carter and Carter (1994) further suggest that a spouse's illness may have a negative impact on the marriage and may significantly damage marital interactions.