“Who Am I Now That I Am Not A Caregiver?”

Empty Road Symbolizing Life After Caregiving

For all of his eight years, Carolyn cared for her son Billy, a hydrocephalic child who was ventilator-dependent and had a seizure disorder. He also had a stomach tube, thyroid problems, and brittle bones. Developmentally, he remained at two or three years old.

The state waiver program provided Carolyn with 16 hours of nursing care daily, but Billy always required constant supervision and could never be left alone.

Caregiving was intense; he was critical most of his life.

After Billy died, Carolyn discovered she had lost herself, because for so long her sole responsibility had been her son. Her identity was caught up in mothering and caregiving. Afterward, she wasn’t sure who she was, although she knew she was not the same person. “As a caregiver, you feel like you’re not yourself. I was always, ‘Billy’s mom’. I was rarely ever Carolyn. It was tough to find Carolyn again.”

Navigating Identity: Reflections on Caregiving and Loss

Caregiving means not only taking up new duties; it also means a new identity. Especially in rare disease caregiving, this role often takes precedence over other relationships – employer, wife, friend, artist, son, and daughter. Other relationships and identities often take a backseat during caregiving, weakening over time. After our loved one passes, we find ourselves in a transitional phase.

This phase, known as “reorganization,” involves numbness, searching, and despair. It’s crucial to acknowledge the changes in lifestyle and determine future directions during this period. Caregiving transforms us, and afterward, we must prioritize self-care and patience to regain vitality. But there are steps we can take, and signposts to help us along the way.

Losing Ourselves

Caregiving involves numerous losses, but none are as devastating as the actual death of a parent, spouse, child, friend, or relative. We have invested well in these relationships, and built so much of our lives around them, that when they are no longer an active part of our lives, we are left with a gaping hole. It is in that space we grieve, for we have lost a cherished part of ourselves. But it is also in that space that we sow the seeds of our new lives.

Alan D. Wolfelt, director of the Center for Loss and Life Transition in Fort Collins, CO, refutes the idea. He calls the notion of “getting over grief” a myth.“Everyone is changed by the grief experience,” he says. “For the mourner to assume that life will be exactly as it was before the death is unrealistic and potentially damaging.

All too often, people erroneously see recovery as an absolute, a perfect state of reestablishment. He prefers the term “reconciliation” to describe the process of integrating a new reality. This reality involves moving forward without the physical presence of the loved one.“As the experience of reconciliation unfolds, the mourner recognizes that life will be different. Beyond an intellectual working through is an emotional working through. He now understands what was once understood as the “head” level as the “heart” level. Then, he says, he can make commitments to the future.

“The Fruitful Emptiness”

One of the most important steps in processing our grief is to examine the barriers to recovery. Guilt, anger, and regret are three of the biggest. Before new life can be enjoyed, these emotions must be given their due. We cannot always expect others to understand what our loss means. Caring for a frail loved one through unspeakable sorrow has profoundly changed our perspective. It has altered how we interact with the world and our understanding of ourselves.

We discover newfound vulnerability, courage, and competence through caregiving, reshaping our relationships. Family dynamics and friendships may undergo reorganization as a result. Healing involves processing alone or sharing with others to shape a new, meaningful life after caregiving.

Finding Identity After Caregiving: Navigating Loss and Recovery

The sense of emptiness after caregiving signals the path to reclaiming a complete life. According to grief counselor Alexandra Kennedy, caregiving involves intense emotions related to dying and profound life events. Then after the death, there is a letdown. You have this incredible sense of having been part of something so big and something so precious that even though it’s taken every ounce of energy, afterward, everything is gone.”

The core of grief revolves around losing relationships and identities as a daughter, son, spouse, or parent. The key challenge is allowing grief while also fostering healing simultaneously. You have let go of work and put relationships on hold during caregiving, and suddenly you have to go back to ordinary life. There is a real sense of letdown, of ‘Who am I now?’ when before I was part of this very important thing that was happening,” Kennedy says.

Coping Strategies

When caregiving ends, other relationships demand release from the corner and require attention. Spouses and children, employers and friends all expect us to return to “normal.” But life is not the same; it can never be. We need to consider what roles we want to assume or regain, and how we now see ourselves in the world. And that takes time and energy.

Coping strategies range from practical tasks like managing household and legal matters to self-care rituals. Grief counselor Martha Felber advises small steps such as walking, improving posture, and setting goals.  Caregivers often find themselves unable to focus, feeling overwhelmed by the multitude of tasks that need to be done. Yet this is all part of grief. Eventually, caregivers reach a point where necessary tasks are finished. They can then contemplate closure by honoring the shared life and embracing new beginnings.

Self-care is critical to managing grief. When we have no one else to care for but ourselves, it can be difficult to re-establish routines. Yet the discipline of physical exercise, good nutrition, and diet, can begin to take up those spaces that caregiving used to fill, and lay the foundation for what is to come. Caring for oneself with time and patience also helps relieve depression and anxiety, and helps move the caregiver beyond loss. Some people begin writing in journals to sort through their emotions, to clarify their problems and goals. This can help you cling less to memory and illusion, and begin the process of healing.

Moving On

Caregivers experience a range of unfamiliar emotions due to changed priorities during caregiving. These emotional shifts lead to personal transformations, sometimes unnoticed at the moment. They may feel disconnected from others who haven’t shared similar experiences of illness and death.

Former caregivers, driven by a desire for simplicity or authenticity, may make significant life changes. Some choose to end marriages, leave jobs, or engage in humanitarian causes. Many volunteer in community and religious programs, offering respite and companionship to caregivers and nursing home residents. They make lists of things they’ve always wanted to do and then start doing them.

The Gift of Life

Alexandra Kennedy advises daily quiet time to confront feelings of emptiness after caregiving ends. This sanctuary allows reflection on changing values and resolving unfinished matters with the deceased.

“Grief is a transformational process that makes possible huge shifts in who you are. You emerge so much bigger than who you thought you were, but you won’t get there if you don’t go through the feeling that you’ve lost yourself. It is a very delicate time; the identity builds again very, very slowly on all the emotions that are surfacing through grief.”

“It’s okay to feel empty and alone and to not know who you are and where you’re going. A lot of people don’t realize the opportunity – all of this feeling is overwhelming. But you begin to build the seeds of a new life from all this emptiness. You truly emerge back into life with a desire to express some form of idea or creativity. It’s a place that is so much fuller because it embraces so much more of life. It’s almost as if our loved ones, in their deaths, give us the gift of life – again. And it’s our choice if we take it, the second time.”

This series of bereavement articles is in memory of Steven Mintz.