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Throughout life, we encounter myriad changes, navigate emotions ranging from joy to sorrow and evolve through growth. In these experiences, we encounter the deep emotions of grief and loss. These feelings can be confusing and isolating, making us feel lost in a world we struggle to understand.

When dementia is diagnosed, both the caregiver and the person with dementia are thrust into a world of grief. Suddenly, everything seems distant, unfamiliar and surreal. Both parties are forced to blindly navigate through what may feel like an endless cycle of uncertainty. Psychologists call this experience ambiguous loss, a term coined by Pauline Boss, PhD, in the 1970s. It’s a kind of grief that seems uncertain and never-ending that leaves people feeling like they’re in limbo. Dr. Boss explains there are two types of ambiguous loss: one where the person is physically there but mentally absent, and the other where a person is physically absent but still feels present emotionally. In this article, we’ll explore the latter.

Dementia is a neurological condition where brain neurons deteriorate and die, causing the brain to shrink. Despite these changes being unseen, we watch as our loved one gradually fades away. As the disease advances, the person we once knew seems to disappear. This transformation affects reasoning, decision-making, personality, behavior, and even how they perceive time and space. Our loved one exists in a state between life and the end stages of the disease, caught in a limbo between two worlds.

As caregivers, we witness these changes and face ongoing stress that can affect our mental, physical and spiritual well-being. We may try to hide our grief as we struggle to cope with significant changes and unresolved grief. We ask ourselves where our loved one is and why we can’t recognize them anymore. In this situation it’s crucial to let go of preconceived notions and explore our feelings amidst the challenges of dementia. Dr. Boss explains that ambiguous loss confuses families, preventing closure and freezing the grieving process, leaving families feeling paralyzed. Those dealing with ambiguous loss often describe feeling trapped while torn between grieving and holding onto hope for a return to normalcy. Understanding the impact of ambiguous loss can help navigate these challenges and build resilience. Dr. Boss offers six guidelines to help live well despite uncertainty:

  • Find Meaning: Make sense of what is happening and identify the problem as dementia while embracing spirituality and focusing on personal positive attributes.
  • Regain Control: Acknowledge the dual nature of ambiguous loss, externalize blame and accept what cannot be changed.
  • Reconstruct Identity: Be flexible and embrace each individual’s role in the process.
  • Normalize Ambivalence: Embrace small victories, normalize negative feelings and seek support.
  • Revise Attachment: Accept without detachment and acknowledge the shift in connection.
  • Discover New Hope: Embrace uncertainty and envision the future with optimism.

Grief is a deeply personal journey that morphs and transforms over time. As you journey through the labyrinth of loss, cherish each moment, forge memories and celebrate the small victories amidst the tumultuous sea of ambiguity.