Immediately after Hugh woke up from his coma, I felt a deep sense of loss. Yes, my husband was alive but he didn’t act or sound like my husband at all. The vacant look in his eyes changed his face in a frightening way. Everyone celebrated that he survived, and so did I, but I felt conflicted and didn’t know why. As the weeks dragged on, Hugh continued to make slow progress. He attended rehab sessions to relearn the daily activities of living. His personality fluctuated between flat and agitated.
By week seven, I felt frantic inside. Did I lose him completely? Meeting with the manager of Medical Psychology at HealthSouth helped enormously. She told me that it was common for the spouse of someone with TBI to feel a deep sense of grief, as if that person had died. I later learned that the term for this feeling is “ambiguous loss.” Ambiguous loss occurs when someone we love is still with us, yet radically changed. Pauline Boss, an expert on ambiguous loss, explains this as a physical presence with a psychological absence. Ambiguous loss occurs frequently after a TBI or with Alzheimer’s disease, and it can be distressing for family members.
Here are three statements that hint at a sense of ambiguous loss:
“TBI is like having your house robbed. When you walk through the door, you know things are missing but it takes a long time to figure out what. And sometimes those things sneak up on you when you least expect it.”
— Wife of TBI survivor, Laura Cooper Kitchings
“After my dad was hurt, I lost my father and it felt like I lost my mother, too. Everyone said how lucky I was, but I didn’t feel lucky at all.”
— Daughter of TBI Survivor, Mary Rawlins
“The spouse has a harder time moving forward with life and is in a constant high alert pattern to look for something that is off. This is exhausting! We are always wondering: would he have said that or acted that way before? For the life of me, I can't remember.”
— Wife of TBI survivor, Marlene Phelps
Through counseling, both on my own, and with my husband after his TBI, I was able to cope with feelings of ambiguous loss. Here is some of the advice in counseling that helped me:
- Meet each other where you are now.
- Support each other.
- Try new things together.
- Don’t get stuck in the past.
- Cherish old memories while striving to make new ones.
- Look for qualities you love in each other every day.
- Realize that you may have both changed from this traumatic family experience, that life always changes, but you can find peace in the present if you actively seek it out.
Ambiguous loss is important for people to acknowledge and understand. Knowing that these feelings are natural can be a relief to many family members, and sharing ways to come to terms with this loss is important for family members in the TBI community.