Bereavement

“Who am I now that I am not a caregiver and mother?”

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 had 16 hours of nursing care each day through a state waiver program, but Billy could never be left alone. Caregiving was intense. He was in critical condition most of his life.

After Billy died, Carolyn discovered she had lost herself. For so long her sole responsibility had been her son, and her identity was based on mothering and caregiving. Afterward, she wasn’t sure who she was, but 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.”

Losing Ourselves

Caregiving can be all consuming. We built so much of our lives around taking care of our loved one that when he or she is no longer an active part of our lives, we are left with a gaping hole. The feeling of having nothing of you left after being a caregiver is common. 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.”

During your loved one’s passing, you may have let go of work and put relationship on hold. “Now 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.

Everything is Different Now

Caregiving is not just new or additional duties. It can mean a new identity or a different sense of purpose. Your caregiving role often took precedence over other relationships—to your spouse, employer, friends, parents, children or work. When our loved one is gone, we are left for a time between roles. The old patterns and priorities no longer apply but we’re not yet ready for new activities. Bereavement professionals call this phase of grief “reorganization.” It can mean feelings of numbness, searching and despair.

Getting Back to “Real” Life

When caregiving is over, other relationships that have been on hold may clamor for attention. Spouses, children, employers and friends may expect us to hurry up and get back “normal.” It is easy to feel overwhelmed by the backlog of things that needs to be done. Grieving caregivers can find themselves unable to focus. But life is not the same. We deserve and opportunity to what roles we want to reassume, and how we want to remake our identity and life.

Changed Priorities

Caregiving changes people. It’s hard to fill up a life again with people who have not been through what you’ve been through, who have not faced the hard issues of illness and death. Some caregivers find that after their loved one passes, they want to live more simply or authentically. Former caregivers might end marriages, quit jobs or get involved with causes aimed at relieving suffering. Many former caregivers volunteer for community programs, including providing respite care for other caregivers, visiting nursing home residents, or becoming mentors and companions.

“I Don’t Remember How to Take Care of Myself”

Self-care is critical to moving through grief. But when we have only ourselves to care for, it can be difficult to routines. For example, many people find it difficult to adjust to cooking for 1 after losing a spouse.

Grief counselor Martha Felber suggests little steps. Take short walks to regain stamina. Make a list of short- and long-term goals. Plan meals around your favorite foods. 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.

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 this quiet time—gives us time to explore the inevitable changes in our values and priorities. It’s an opportunity to contemplate any unfinished business we may have had with the person who died.

“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 these feelings are overwhelming, but you begin to cultivate the seeds of a new life from all emptiness. You really do emerge back into life with some sort of new creativity that needs 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.”

Reconciliation

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.”

On the other hand: “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.”

Wolfelt 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 at the ‘head’ level is now understood at the ‘heart’ level.” Then, he says, commitments to the future can be made.

“Why isn’t it easier? I’ve been grieving for years!”

How do we know if our period of mourning is going on for too long?

"Too long" depends on the person, who one’s lost, as well as the duration and intensity of caregiving, say professionals. "The path of grief is not a period of time, but a process. People grieve through different stages. It becomes a problem when there is NO process, when people go over and over the same things, when there’s no change in what’s experienced or expressed over a long period of time. Dysfunction is when there's no movement, and the person is stuck."

Losing a loved one is one of the most distressing and, sadly, common experiences people face. People experiencing normal bereavement have a period of sorrow, numbness, and even guilt and anger. Typically, these feelings ease. The bereaved person gradually accepts the loss and moves forward. For some people though, feelings of loss are debilitating and don't improve even with time. This is known as “complicated grief.” It’s well known to therapists who specialize in bereavement.

Clinical psychologist Dr. Therese Rando has found that in complicated grief the bereaved never gets past the stage of acute grief. The mourning persists and doesn't draw to a natural conclusion. "The processes of revision and readjustment never occur," she says. "For these people, it's always as if they just lost their loved.”

“Complicated grief” can be characterized by:

• Intense feelings of confusion
• Unrelenting loneliness
• Panic attacks
• The inability to feel anything at all
• Embarrassment or discomfort in expressing grief
• Guilt that can't be shaken or that grows into self-hate or self-destructiveness
• Unrelenting anger or hostility
• Increased use of drugs or alcohol
• Inability to carry out daily tasks or take on responsibilities several months after the loss
• Suicidal thoughts or feelings of worthlessness

It Is Complicated

Sandy was only 40 when she lost her young child, Mike, to leukemia. After four years, she still could not find any meaning in life. Her husband wanted another child, but she was unwilling. Eventually, they drifted apart and divorced. Even today she is back to working part time, but is unable to enjoy her colleagues or their children because she’s always in pain. She feels like a failure as a mother and a wife. She cannot let go, and cannot stop feeling sorry.

"Sometimes people can't let go of grief because they equate it with letting go of that relationship," says Leiser. "The emotions can become incredibly confused: 'If I stop grieving I don't care about them or it means they're really gone. If I'm crying every day, I'm still connected to them.' "

Long term mourning can also be caused by unresolved feelings—anything from guilt over something that happened years earlier, a feeling that as a caregiver one didn't do enough, or feelings of anger. "Anger is a common part of grief that people have a hard time acknowledging," says Leiser. "There is a social stigma around being angry or speaking ill of the dead. So often, people become very angry—or even carry it from childhood—and never work it through with the person. Yet those feelings remain, even after the person is gone though we think we should only think nice things about this deceased person."

The Road from Loss to Acceptance

There can be pitfalls on the road from denial to acceptance. Complicated grief occurs when there is a failure or distortion in one or more of the processes of mourning. The bereaved person may struggle in the areas of:

• Recognizing the loss
• Giving it some form of expression
• Identifying and mourning secondary losses like companionship, connections to a social group, or a sense of how the world is supposed to be
• Remembering the deceased and the relationship realistically
• Relinquishing one’s old way of life and adapting to the new situation
• Developing a new relationship with the deceased

What’s Causes Complicated Grief

"Certain situations, like multiple loss or severe trauma, may predispose people to complicated grief," says Roz Leiser, a registered nurse. The burdens of long-term caregiving can also complicate mourning. For some the grief started when their loved one because ill or debilitated.

Dependency on the deceased can also complicate the mourning. Some mourners prefer to stay in this place rather than make changes and go on without the their loved one. Says Rando: "We see this as coming from an attachment disorder—the bereaved doesn't think they can go on in the absence of the individual, so they just hang on to the old world even though things have changed."

Caregiving and Extended Grief

Post-traumatic stress can be a factor in lengthy mourning. Witnessing an extended dying process can be distressing and make us less resilient during the grief process.

Carol husband, Don, was confined to an ICU unit for nearly two years with liver disease before he passed away just shy of their 24th anniversary. She had tried to be in control and to remain strong during the period of intense caregiving, but it took its toll. Ten years later Carol says that long-term caregiving changed her. "My grief comes in waves. The waves are further apart, but I never know when they will hit. If I hear a song and it brings back a memory, I can always switch a radio station. But thoughts can be hard to control. We are conditioned to return to business as usual, to 'get over it' and 'get on with life.' But sometimes that doesn't happen easily; sometimes the feeling of deep loss can go on for years."

Life Does Go On

Rando says that many people believe that mourning continues forever; it is the acute grief that eventually ends. "A person may be long past acute grief yet still be in mourning," she says. “Even long after a death, a wide variety of circumstances can produce brief periods of grief for the loss of the loved one. Accommodating the loss leaves a psychic scar similar to a scar that remains after a physical injury. This scar does not necessarily interfere with the mourner's overall functioning, but on certain days and under particular conditions it may ache or throb and require some attention. Healthy accommodation does not mean that the bereaved no longer mourns. It means only that the person has learned to live with the loss in ways that do not interfere with his or her healthy functioning in the new life without the loved one.”

Christine Longaker, author of Facing Death and Finding Hope and a lecturer on spiritual care of the dying, writes that even two years after her husband's death, the cycles of intense pain and sadness were excruciating. Although she wanted to ignore each intrusion of fresh pain and hopelessness—even contemplating suicide—she finally addressed her feelings of grasping, of longings for what could never be.

Wanting her life back, Longaker decided to practice a new way of thinking about her greatest loss. "I am letting you go and wishing you well," she began gingerly. "I am going to survive and be strong. I am going to make a new life for myself." And after a few months, she discovered that her process of mourning felt complete.

"Part of the task of mourning is to let go of our former relationship and then consciously decide to create a new life, with meaning and purpose," she writes. "This decision helps us summon the courage to finish our grief. Failing this, mourners can end up living halfheartedly in a shadow world. Grievers needs to find their own personal answer to the question: For what purpose will I continue to live?"

Things That May Help

Here are some suggestions for getting through the grieving process:

• Mobilize your social support system as soon as possible. Reach out to friends, family and your community.
• Talk through feelings rather than dwelling on them.
• Try to see a new perspective.
• Identify potential coping difficulties early in the grief process.
• Seek professional help if you feel stuck.
• Use rituals. Whether formal or informal, public or private, rituals can give expression to powerful emotions.
• Explore cultural and religious traditions around grief and spiritual transitions. These can guide your actions during confusing and chaotic times.
• Acknowledge your grief for smaller losses—not just death.

Barbara's Story

Barbara exhibited the classic signs of an inability to finish grief after her husband of 50 years, Marvin, died after a ten-year battle with emphysema, diabetes, and congestive heart failure. The primary caregiver for most of those years, Barbara retired early from her career as a paralegal to care for Marvin full time. Though they had sufficient money to finance more in-home help, and even a nursing facility when he became totally dependent, still she felt it was her duty as a wife and a woman to tend to all of his needs. For the first year after Marvin died, Barbara rarely left the house. Ashamed of her intense emotions and unable to cope with widowhood, she spent most of that time in bed.

"I never understood what was normal in the grief process," Barbara says now, five years later. "I was constantly judging the process or suppressing it, so that I would feel in control. I felt that to be strong, I couldn't express my sorrow. No words could describe the total disruption in my life that the caregiving caused; but even more was the high level of grief that permeated every day."

Caught in limbo between past and future, Barbara felt nothing but emptiness in the present. She could not accept Marvin's death, and therefore couldn't begin the mourning process. Because she was the first among her circle of friends to lose a spouse, no one understood what she was going through. In her isolation she felt abnormal, which further suppressed her ability to express her grief. She wallowed in unresolved feelings of guilt, such as worrying that she hadn't gotten him to the doctor early enough, or often enough; she compiled a laundry list of hurts and grievances that she dwelled on alone. Unable to move forward, she remained stuck in fear that her grief would never end, and that she hadn't enough courage or smarts to live without Marvin. Afraid that opening to the pain would cause an explosion of unbearable emotion, she chose instead to face the other direction until one day she awoke realizing she was wasting her own precious life.