Ambiguous Loss: Coping with Hidden Grief After Brain Injury

Caring for a loved one with brain injury can bring about a unique and challenging type of grief known as ambiguous loss. Unlike the more common forms of loss where there is a clear separation, ambiguous loss leaves caregivers and family members struggling with feelings of confusion and uncertainty because their loved one is physically present but emotionally or cognitively changed. Understanding this type of grief can help you cope better with the emotional rollercoaster that follows a brain injury, allowing you to find ways to heal and grow despite the challenges.

What is Ambiguous Loss?

Ambiguous loss happens when someone is physically present but psychologically absent. This can occur after a traumatic brain injury (TBI) when the individual survives, but their personality, cognition, or emotional responses change dramatically (Boss, 2006). The person may look the same, but their behavior, personality, or abilities may be significantly different, leaving family members feeling as if they’ve lost the person they once knew. Boss (2006) describes this type of loss as being especially stressful because there is no resolution, leaving those affected stuck in an ongoing state of grief.

Impact on Families and Caregivers

Family members often experience this ambiguous loss alongside feelings of isolation and frustration, as their grief is often not recognized by society (Thøgersen & Glintborg, 2021). Spouses, parents, and children may struggle with the fact that while their loved one is still physically present, their mental or emotional capacities have changed in ways that make it feel like they’re no longer the same person. This can be even more difficult for children, who might not fully understand the changes their parent has gone through (Kieffer-Kristensen & Johansen, 2013).

A study by Kreutzer et al. (2016) explored the emotional recovery of families after TBI, emphasizing how caregivers often experience both guilt and grief simultaneously. These caregivers may feel burdened by their new roles, but also guilty for the negative emotions they harbor toward their loved one. This emotional ambivalence is a core part of ambiguous loss, and without proper support, it can lead to long-term emotional distress (Landau & Hissett, 2008).

Understanding the Brain Injury Family Intervention (BIFI)

To address the emotional and relational complexities of ambiguous loss, Kreutzer et al. (2016) developed the Brain Injury Family Intervention (BIFI). This structured, five-session intervention helps families manage the ongoing stress, ambiguity, and changes that arise after a TBI. Table 1 below is a detailed breakdown of the core sessions and strategies implemented in BIFI:

Session Key Topics Ambiguous Loss Guidelines
Session 1: Understanding Brain Injury Educating families about brain injury, its causes, and long-term effects. Focus on normalizing the injury’s impacts and challenges. Emphasize that brain injury affects the entire family. Reduce fear and uncertainty by increasing knowledge of TBI.
Session 2: Understanding Recovery Differentiating between emotional and physical recovery. Managing expectations about progress and setbacks. “Temper mastery” – Help families accept what they cannot control. Encourage acceptance of the unpredictable nature of recovery.
Session 3: Problem-Solving and Setting Goals Identifying new roles within the family. Promoting collaborative problem-solving among family members and the survivor. Encourage families to set realistic goals and expectations. Support the redefinition of family roles and relationships post-injury.
Session 4: Managing Stress and Intense Emotions Providing tools for handling stress and intense emotions, such as empathy, validation, and emotional expression. Normalize the feelings of ambivalence, guilt, and grief. Create a safe space for emotions to be expressed without judgment.
Session 5: Planning for the Future Focusing on resilience-building and planning for the future. Addressing how to reestablish hope and routines. Help families revise their sense of attachment. Encourage a future-oriented approach that embraces ambiguity and finds new meaning.

The BIFI provides an adaptable, structured approach to family care post-TBI, addressing both emotional recovery and practical challenges like role shifts, expectations, and future planning. By implementing these steps, families can slowly rebuild their sense of identity, reduce emotional stress, and adapt to their new reality.

Coping with Ambiguous Loss

While ambiguous loss cannot be fully resolved, there are ways to cope. Building resilience through therapy, community support, and family interventions can help. Kreutzer et al. (2016) developed the BIFI to provide families with tools and strategies to manage the emotional and practical challenges they face.

Beyond interventions, Pauline Boss (2006) highlights that accepting ambiguity rather than seeking closure is key. Accepting that your loved one is both “here and not here” helps families live with ongoing loss and uncertainty. Support groups, therapy, and clear communication within the family can also help ease the burden of ambiguous loss.

Finding Meaning in Loss

Though the losses associated with brain injury can feel overwhelming, finding new meaning in life can be a critical step toward emotional recovery. Caregivers are encouraged to focus on resilience rather than being stuck in grief. As Boss (2006) emphasizes, there is no closure with ambiguous loss, but there is an opportunity to adapt, find hope, and embrace new roles and routines.

Ultimately, while ambiguous loss is a difficult and painful experience, families can learn to live with the ambiguity and find ways to move forward. Therapy, support from others, and creating new routines can help rebuild a sense of stability and hope. If you or someone you know is coping with ambiguous loss after a brain injury, reaching out for professional support can make all the difference in managing the complex emotions that come with this type of loss.


References

  • Boss, P. (2006). Loss, trauma, and resilience. W.W. Norton & Company.
  • Kieffer-Kristensen, R., & Johansen, K. L. (2013). Hidden loss: A qualitative explorative study of children living with a parent with acquired brain injury. Brain Injury, 27(6), 583-592. https://doi.org/10.3109/02699052.2013.841995
  • Kreutzer, J. S., Mills, A., & Marwitz, J. H. (2016). Ambiguous loss and emotional recovery after traumatic brain injury. Journal of Family Theory & Review, 8(3), 386-397. https://doi.org/10.1111/jftr.12150
  • Landau, J., & Hissett, J. (2008). Mild traumatic brain injury: Impact on identity and ambiguous loss in the family. Families, Systems & Health, 26(1), 69-85. https://doi.org/10.1037/1091-7527.26.1.69
  • Thøgersen, C. M. S., & Glintborg, C. (2021). Ambiguous loss and disenfranchised grief among spouses of brain injury survivors. Nordic Psychology, 74(1), 16-29. https://doi.org/10.1080/19012276.2020.1862699
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