Post-Caregiving Syndrome: What Happens When Caregiving Ends?

^{Photo by Ron Lach}

Most discussions concerning caregiving focus on the before and the during—how they can provide efficient service and what to do to avoid burnout. Unfortunately, not much attention is paid to what happens after, even when it’s just as important, especially if this includes the patient passing away.

Post-caregiving syndrome is the aftermath caregivers experience after spending years assisting someone. For onlookers, life after caregiving may seem like a relief, a momentary period where rest is finally an option and caregivers can prioritize themselves. However, caregivers may find this period equally as overwhelming as when they started.

It’s off-putting wishing a patient a “good day” for the last time or clearing up one’s schedule after their last day. Others may even say it’s emptying.

Seeing post-caregiving syndrome as an actual and debilitating condition is crucial in order to give caregivers the care and support they will need.

Understanding Post Caregiving Syndrome

In the multiple interviews author Eleanor Gaccetta has done, she has always stressed the importance of understanding the complexity of caregiving. This includes not only its intricacies and significance but also the ups and downs caregivers experience.

Caregiving is life-changing, not only for its recipient but also for the giver.

Caregivers step into a role that directs them to a more purposeful life. They begin living not only for themselves but also to support and assist the patient, changing their routines to cater to the aging or ailing. It’s fulfilling and meaningful, and these make it life-changing.

Caregiving isn’t only a profession. It’s an identity one takes on. It’s not hard to imagine how confusing, chaotic, and ultimately emptying it can be when it ends.

Common Feelings After Caregiving Ends

While caregiving duties can be challenging, transitioning out of them can also be a challenge. Caregiving is all-consuming. It doesn’t only affect caregivers’ routines but also their perceptions of themselves. This is why returning to their “old lives” can be tough for them once their services are no longer needed.

Depression after caregiving ends is a pretty common occurrence as caregivers undergo an emotional rollercoaster throughout this transition. Reintegrating back into their “old self” comes with some harsh realities that life passed by them. Nothing is the same as they remembered.

Loss of Purpose

Post-caregiving syndrome comes with a loss of purpose. For caregivers who have spent most of their time caring for someone, transitioning out of it can be equivalent to identity loss. Suddenly taking away their primary responsibilities or established routines can be crippling to overcome.

This begs the question: When caregivers’ identities are heavily tied to caregiving, what comes next? And, ultimately, how do they move forward?

Guilt and Regret

Hindsight bias is among caregivers’ biggest enemies. The moment they leave the position, thoughts of what they could’ve done better or if their assistance was enough would immediately come into the picture. Mistakes and perceived insufficiency would be spotlighted as caregivers become stuck thinking about things they could’ve done differently.

This is why post-caregiving syndrome takes the form of emotional distress, which includes anxious thoughts centered on guilt and regret.

Relief and Shame

After allotting most of their time caring for someone, the end of caregiving can be relieving to some. However, they may struggle with shame upon feeling this. Caregivers struggle with exhaustion due to responsibilities, but a break may feel selfish to ask. This conflict contributes to how confounding post-caregiving syndrome can be, and it’s important to help caregivers come to terms with this contradictory experience.

Remind them that the relief they’re feeling isn’t well-intended.

It’s crucial to note that while life after caregiving may ease caregivers from their responsibilities, it can still feel burdensome due to these experiences of shame and relief.

Adjusting to Life After Caregiving

While post-caregiving syndrome is normal, this doesn’t mean it should be normalized. Finding purpose after caregiving may seem like a waste to some. Given their grief, some may even feel discouraged to open themselves to another patient. But it’s vital to remind caregivers how they can still contribute more to the world and that grief is normal and will pass over time.

After their services are no longer needed, caregivers still have their whole lives ahead of them. It’s critical that they learn to open themselves up to the world once more. This can be a daunting experience filled with the realization that much of life in the open world must be re-learned.

Rediscovering One’s Identity

To most caregivers, life after caregiving would signify a rediscovery of their identity. Whether they’re only momentarily pausing the role or permanently stopping, it will be a challenge for them to establish a sense of self afterward. It’s important for them to introspect and truly look into who they are and can be beyond caregiving. Caregivers should give themselves time to reconnect with themselves after spending their days prioritizing someone else.

Filling in an Empty Schedule

Caregivers mold their routines to their patients’ needs. Hence, when they’re no longer needed, a sudden void will immediately appear in their lives. This sounds like the best news for others, but for caregivers, it can only be emptying and draining. The best way to counter post-caregiving syndrome is always to find other meaningful activities they genuinely love doing. When they have the opportunity to establish new routines, it will become easy for caregivers to redirect themselves to their identity. but this will take time and patience to find the new opportunity.

Moving forward after caregiving ends primarily revolves around caregivers re-establishing their purpose and sense of self. It entails embracing every emotion they would feel and decreasing instances of shame and regret for the things they no longer control.

Eleanor Gaccetta’s experience is a great resource for empowering caregivers to find their purpose once more. Her story is filled with the gentle graces of caregivers and their toughness to overcome the different obstacles that come with the role. Grab a copy of her book One Caregiver’s Journey here or at www.onecaregiversjourney.com!