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Ambiguous Loss – The Sorrow that Won’t Go Away after a Brain Injury

Brain Injury Blog by Janet Cromer, RN, MA, LMHC

June 16, 2011

Ambiguous Loss- It’s the Sorrow that Doesn’t End

Ambiguous loss is also called “mobile mourning” and “chronic sorrow.” It can affect both the survivor and family member in deep and ongoing ways. Family caregivers may recognize it as that strange feeling that the person who survived the brain injury just is not the same person he/she was before. It’s confusing because you may be grateful that the person lived, but grieve for the person he was before. Ambiguous loss matters because it can make it hard for you to find hope or move on in this “new normal” life.

What does ambiguous mean? It means unresolved or without closure. Consider that when someone dies, our community usually gathers for a funeral or other rituals. Everyone participates to acknowledge the death and support the family. However, when a person lives through a moderate-severe brain injury, his personality, emotions, or behavior may change in ways that are very different. But there is no ritual for a community to rally around the grieving family. When the survivor “looks like nothing happened” on the outside, the situation gets even more confusing. The survivor may be present in the family physically, but absent psychologically because of emotional or cognitive changes. Perhaps he can’t perform his roles in the family as before. His memory may be impaired, so he doesn’t even remember the personal stories families cherish.

Ambiguous loss (AL) has a few features worth understanding:

We all know about the primary losses that happen with brain injury. That includes the brain functions and bodily impairments caused directly by the brain injury. However there are many secondary losses for both the survivor and caregiver. For the survivor, there might be changes in identity, relationships, roles, vocation, and finances. All huge and traumatic.

For the caregiver, the secondary losses may seem more subtle and harder for others to recognize. When my husband Alan had a severe anoxic brain injury, some of my losses included leaving a job I liked very much, giving up relationships with colleagues and clients, and limiting personal freedom since Alan could not be left alone. Most of all, we lost the mutuality that couples take for granted. Alan was rebuilding his sense of who he was, and he didn’t know anything about me beyond what I did to care for him. His ability to empathize and participate in our familiar roles was gone. He just was not the same Alan or same husband.

What can we do to live with ambiguous loss without becoming hopeless or sick? We can try to recognize, learn to cope, and move forward. There are many ways to approach this, so I’ll start with a few key points:

  1. Recognize what’s going on. Underneath that confusion is a long list of the losses, changes, and conflicted thoughts and feelings. Spend some time writing without censoring yourself. Talk to other family members about their observations. Talk to the survivor about what bothers him/her most. Naming a problem or loss does not make it worse. It can bring it into the light so healing can begin.
  2. Find a safe and supportive connection. Consider talking to an experienced therapist, counselor, or spiritual leader. Ask if they know about ambiguous loss in advance. You deserve help from someone who understands the issue. A good support group can lift the burden by talking to others with the same problem and learning how to make meaning and find hope.
  3. Make meaning of the situation. Over time, come to a shared understanding of what’s been lost for each family member. Also focus on what remains and can be built on. Take the time to mourn whenever you feel the need. It is not disloyal to mourn for someone while getting to know the person now present. Perhaps a spiritual practice or faith can offer solace or guidance.
  4. Get to know the survivor as the person he is now. You can gradually rebuild family roles, rituals, and rules to live by. I wrote about how we began in this post.
  5. Incorporate humor and fun whenever possible.
  6. Adopt “both/and” thinking. That means you become comfortable with the paradox instead of needing to think in “all or nothing” ways. I thought, “I’m worried and angry about Alan’s difficult memory problems, and I know the new strategies we’re practicing will help a lot.”
  7. Find hope and new options. The situation may not change completely, but you can choose new sources of hope and new things to hope for. Explore and appreciate all the options open to you to move in a new direction, one small step at a time.

Thank you for reading all the way through this very long article! I consider ambiguous loss to be one of the most important challenges survivors and families can face and master. There are several good resources for more information on this Lash and Associates website. I’ve also followed the work of Dr. Pauline Boss for many years. In future posts, I’ll go into the approaches in more detail.