Am I a spouse, or am I a caregiver?

53. Am I a spouse, or am I a caregiver?

The simple answer is that you are both spouse and caregiver.
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 performing
your roles are key strategies for preventing
the challenges of caregiving from permanently undermining
your relationship.