I wish I had known about these books sooner. I wish I had known the term “ambiguous loss” years ago as it so aptly describes the messy, mysterious, and gradual losses associated with dementia.
Ambiguity is a great word. It literally makes me think of deep, soft sand. Being stuck, but still moving. Feeling breathless, but still breathing. It’s an uncomfortable state of being that we weren’t designed to hang out in for too long. We are supposed to move through ambiguity toward a place of understanding and resolution. We can all tolerate ambiguity for a while, as long as there is the promise of closure at the end. We are agreeable to fight the battle until we reach a place where we can look back and say, “Oh, that makes sense to me now.”
But the truth is, Alzheimer’s disease and other dementias do not make sense. And in the context of a person’s personhood, they never will because that is exactly what they reduce. You can’t define a person, describe them, or know them when they are in the free fall of neurodegeneration. You can’t firm up that deep, soft sand beneath them. You can’t give them that full breath of life that restores their air supply. As a caregiver, you can only jump into the ambiguity with them, and feel stuck and helpless all the same.
There are other forms of ambiguous grief that most of us know, hence our sympathies to the dementia caregivers. Divorce, abuse, addiction, estrangement- the feeling of loss even though the person is still present- this is the stuff of loose ends and chaos and unknown timelines. And at the “end”, when the person if finally gone or the situation is technically resolved, will there ever be closure?
The advice? Don’t buy into the concept of closure. Dr. Pauline Boss even goes so far as to say that “closure” is a myth. Closure implies that the end of pain and suffering has been punctuated by healing. That the emotional darkness and trauma of an experience can now be packaged up and put away. Grieving beyond some time-limited expectation will be viewed as “obsessive”. Get your closure, and move on.
This is why Dr. Boss is the boss on the matter. Closure is a myth. Grieving is ugly, messy, and not constrained by a linear concept of time. It’s all the time. It’s whenever. It’s ambiguous. It takes time to become at ease with those opposing thoughts in your mind, “He’s here but not really here.” “She’s gone but not really gone.” And it is ok to live like that. Sometimes that is the only way.