The simple answer is that you are both spouse and care-giver. Unexpected illness and/or disability make many couples reexamine their relationships and how they view their respective roles. While they may have previously expected to regard each other, at least ideally, as equal partners, the practical and emotional dictates of caregiving—and the often ambiguous question of who is in control—can alter roles in the relationship between spousal partners, leading to confusion and tension.
People have very different expectations about their roles as spouse, caregiver, or care recipient based on their family history, cultural background, or personal beliefs. While there may be no way to define the ideal relationship for you and your spouse, there are recommendations we can offer to help make the relationship work more effectively.
The way to begin is to have a discussion with each other about how you currently view your roles, and particularly, the boundaries and limits of your respective positions as caregiver and care recipient. Too often, the “well” partner tries to “do it all,” repressing his or her own needs in the process, and often forgoing the hopes and plans he or she may have had for the future.
If there is a sense of entitlement on the part of the care recipient, fixed in the role of the “sick spouse,” this can contribute to feelings of resentment that build over time. Knowing what you and your spouse expect of each other, and then sensitively setting limits, can help reduce the guilt the caregiver may have over “not doing enough” as well as the guilt the care recipient may feel for being a burden and asking for too much.
For example, one spouse, John, felt very uncomfortable assisting his wife to the bathroom during her hospital stay. He felt even more embarrassed when she had “accidents” in her bed when he could not get her up in time. He told us that he felt guilty for his reactions, thinking that he should be able to help his wife in every way. He explained that he had never seen his wife doing her “private bathroom things” in the past, and subsequent discussion with his wife unearthed that she was also embarrassed by her body functions in John’s presence.
A solution was reached that the spouse would call the nursing aide or his daughter (who was more comfortable assisting in such intimate things) to assist. In the end, John and his wife felt more comfortable by setting some limits to the practical care he provided and making alternative arrangements.
There may be times when rigidity on one or both sides causes communication to become strained. You, for example, would like to turn over some of your caregiving duties to a home attendant, but your spouse refuses to let strangers come into the home.
After addressing each other’s concerns, it may be necessary to negotiate a compromise position—perhaps getting another family member or a friend to help, or hiring someone to help for a few hours each day or week. Although you want to help your partner to regain a sense of control over his or her life (which may be reduced when faced with illness), this should not come at the cost of surrendering control over your own life.
Legitimizing both partner’s needs and then trying to maintain autonomy and flexibility in per-forming your roles are key strategies for preventing the challenges of caregiving from permanently under-mining your relationship.