Living with chronic illness: social support and the well spouse perspective

Progressive neurologic disease has a significant impact on family members, particularly those living with and caring for a homebound adult. Focus groups were conducted with women who were the primary caregiver for their disabled husband. The women described themselves as being restricted to the home by caregiving requirements. Multiple sclerosis was a critical personal hardship for them, involving persistent struggle that often resulted in anger and frustration. Because of the social isolation created by their caregiving responsibilities, these women depended on their disabled husband for support. Yet, never having time away from the husband strained the marital relationship and threatened the supportive nature of the relationship. The women in this study found it necessary to have personal time and space away from their husband. They created space for themselves by setting apart a place in the home that was theirs or by declaring time out for themselves. These strategies helped them avoid or reduce negative outcomes of the social support received from their husband.