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. Carolyn was able to have 16 hours of nursing care each day through a state waiver program, but Billy 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.”
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. Because they’ve been crowded into a corner for so long, these other relationships, other identities, may not get enough attention to stay strong. And when our loved one is gone, we are left for a time on a threshold between these roles, not fitting into old patterns and not ready for new activities. In this phase of bereavement called “reorganization” – where we also experience numbness, searching and despair – it is important to recognize how much of our lifestyle and patterns have already changed, and what direction we want to go now.
Caregiving is a transformational process, and its aftermath demands that we take care of ourselves and be patient until we become fully alive again. But there are steps we can take, and signposts to help us along the way.
Losing Ourselves
Caregiving involves so many losses along the way, yet none is as shocking as the actual death of a parent, a spouse, a child, a dear friend or relative. We have invested well in these relationships, 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, calls the idea 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 prior to the death is unrealistic and potentially damaging. Recovery is all too often seen erroneously as an absolute, a perfect state of reestablishment.”
He prefers the term “reconciliation” to define what occurs as the caregiver integrates the new reality of 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. What has been understood as the “head” level is now understood as the “heart” level.” Then, he says, commitments to the future can be made.
"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 shifted our way of being in the world, and of seeing ourselves. We are more vulnerable but also more courageous and competent than we ever knew, which means that our relationships will change. Family dynamics and friendships will probably undergo some reorganization. We do this alone or we do this by sharing, but it is critical to our healing that we do it somehow, so that our new life can take a shape that is worthy of the life passage we have just gone through.
The feeling of having nothing of you left after being a caregiver is an important signpost to recovering a whole life. Says grief counselor Alexandra Kennedy, caregiving is a time “full of intense emotion because you’re dealing with dying and archetypal 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 in spite of the fact that it’s taken every ounce of energy, afterward, everything is gone.”
Loss of relationship is at the center of the grief experience, especially the loss of identity of being a daughter, son, spouse, or parent.
“The big question is, how do you allow grief to happen so that you can have healing at the same time? You have let go of work and put relationship 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 is over, other relationships demand to be released from the corner and given 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, how we now see ourselves in the world. And that takes time and energy.
Coping strategies include activities as necessary as taking care of the household, legal and financial matters, to shopping for new clothes or having a bath by candlelight. Grief counselor Martha Felber suggests little steps: walking to regain stamina, checking for good posture, making a list of short- and long-term goals. It is easy to feel overwhelmed by all that needs to be done; caregivers find themselves unable to focus. Yet this is all part of grief. Eventually there will come a time when certain business is completed, and the caregiver can consider closure: honoring the life shared, so that the new one can begin.
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, of 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
Because there are so many unfamiliar emotions that come up through caregiving – especially because of changed priorities – caregivers go through many changes, even if they don’t recognize it at the time. They feel a little out of time and place: It is hard to fill up a life again with people who have not been through what we’ve been through, who have not faced the hard issues of illness and death. Urged on by a need to live more simply or authentically, former caregivers might end marriages, quit jobs or get involved with causes to help relief suffering. Many volunteer for community and religious programs, such as giving respite to other caregivers or visiting nursing home residents, becoming mentors and companions. They make lists of things they’ve always wanted to do and then start doing them.
The Gift of Life
Alexandra Kennedy suggests that taking time daily to allow “the sense that your hands are empty and there’s nothing more to do” is the most important first step in filling out a life after caregiving. Sanctuary, as she calls the quiet time alone to be with grief, gives time to explore inevitable changes in values, questioning what matters, and working out any unfinished business we may have had 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 really do emerge back into life with some sort of idea or creativity that is seeking to be expressed. 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