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Life After Caregiving – Keystone Elder Law – Mechanicsburg, PA


For those who are caregivers, life when caregiving responsibilities are reduced or end may be difficult to imagine.   Caregiving responsibilities may be reduced or changed when the recipient of care moves from home to a care facility such as a personal care home or nursing home.  Caregiving responsibilities often end due to the death of the care recipient.  Either way, caregivers may experience a myriad of emotions.  The variety, depth and breadth of these emotions will depend on such factors as the caregiver’s personality, the relationship between the caregiver and care recipient, and the extent of caregiving responsibilities. 

A variety of reasons exist as to why caregivers may have difficulty acknowledging/processing their emotions until after caregiving has ended.  The tasks associated with caregiving may be so time- consuming or socially isolating that little opportunity exists to reflect on oneself and seek the support of others.   In addition, caregiving may be physically and emotionally draining, leaving only enough energy for activities deemed necessary.  Sensitivity to the feelings of the care recipient, and the notion that one should appear strong for the rest of the world, may also result in a caregiver repressing feelings that may be interpreted by others as negative.  The end of caregiving may result in a flood which one former caregiver described as a “fire hydrant of emotions”.

Initially, former caregivers may feel a sense of relief that the responsibilities have ended and now there is time for them.   A caregiver named Katy wrote in a blog “I am only now remembering that I, too, exist as a separate entity” .   This sense of relief may lead one to believe he/she is being selfish, resulting in feelings of guilt.  Caregivers may also question themselves about whether or not they tried hard enough or if they could have done more.  When these feelings arise, remember that it is not logical for one to expect to be able to control everything.  Nor should caregivers attempt to compare their “performance” to others.  We all have differing strengths, weaknesses, and life situations, so these comparisons wouldn’t be equitable.  Feelings of grief will be present if caregiving has ended due to the death of the care recipient.  Anger may also surface if caregiving responsibilities were viewed as unfair or if one dwells on personal experiences/opportunities that may have been missed due to caregiving.  For those who have engaged in caregiving for long periods of time, the end of caregiving may bring feelings of vulnerability.  A gentleman named Richard who had cared for his mother wrote:  “At first I felt like someone had opened the zoo door and I’d forgotten how to leave my cage.  I missed the structure. . .”  Caregivers cannot pick up their lives where they left off when they started providing care.  The world around them has changed, and in all likelihood, they themselves also have changed.  Time is needed to process these changes, learn new roles and responsibilities, and evaluate/adjust life goals.  Many caregivers believe themselves to be stronger after the experience of caregiving.  “You learn whatever you thought your physical and emotional limitations were, you stretch beyond them to do what needs to be done” (Darren Walsh, 2013).

While some people may choose to deal with the emotions discussed above, others may not. After viewing a movie at a support group meeting, a blogger by the name of Roaring Mouse (www.Aftergiving.com) quoted the movie character’s distinction between the two approaches as follows:

“Moving On: Means to simply acknowledge that something occured. . . but rather than addressing it from all sides, you skip over it and simply consider the item closed.

Moving Forward: Means to accept the event; walk through and address all of its points and, as you move through those different stages (like on a walking escalator), you eventually move forward into the next item that comes up.”

The life of a caregiver after caregiving ends will be influenced by which of these paths the individual chooses to follow.  Physical factors, such as the former caregiver’s age and state of health, also will play a role, as will social connections and spiritual beliefs.   Obviously, life after caregiving for an older spouse/sibling will look very different from the life of an adult child.  Regardless of who the caregiver is and the details of a caregiving situation, complex issues can be present, not only during the caregiving phase, but afterward as well.

Karen Kaslow, RN