As caring humans, we want to solve problems. Fix things. Fight. Cure. Why wouldn’t we?
As a result of this innate need to fix things, to make progress, to help someone heal — we don’t deal well with unknowns. We can’t fix what we can’t nail down.
The variability of Lewy Body Dementia (LBD) is nothing if not a relentless creator of ambiguity. We can’t know whether we’re coming or going, what will happen next or what crisis will next arise. Is our loved one “with us” today, or “absent, but still here?” Moods change, abilities, speech, comprehension, body functioning and mobility all change — and in many cases in ways we that cannot predict, because of the variability of the condition.
Our loved ones may seem to be the living embodiment of ambiguity. They’re here, and gone. Thinking clearly, and then confused. Eloquent, now gibbering. Walking fine, then unable to rise from a chair.
Again, as caring humans, we don’t like ambiguity. Ambiguity can’t be “fixed.” Understandably, we are especially ill-equipped to deal with variation, vascillation and unpredictability: hallmark symptoms of Lewy Body Dementia.
Any type of dementia brings a great deal of ambiguity and unfathomable loss, both for the person with dementia and for the care partner. Great losses like these typically result in grief, but this grief is not typical, since there is no “departure.”
As care partners, we are losing our loved ones all the time. And sometimes we find them again — for a period. But LBD is a progressive condition, so the loss is always on the horizon: sometimes present, sometimes more distant, but always with us. And because of that, it’s been referred to as “Ambiguous Loss,” a phrase coined by Dr. Pauline Boss, Professor emeritus at the University of Minnesota.
Ambiguous Loss applies to any carer dealing with any dementia. It may have special implications for care partners of a loved one with Lewy Body Dementia because of the variability of the condition, where there is frequently no way to know what condition the person will be in next: rallying, stable, declining, psychotic, or as if nothing is wrong.
Dr. Boss contends that in many cases grief does not ever really provide “closure” and that the often-referenced “five stages of grief” are misleading. A statement she makes will be poignant for many people dealing with Lewy Body Dementia, “with ambiguous loss, there is no closure. The challenge is to learn how to live with the ambiguity.”
A powerful outcome of understanding the concept of ambiguous loss seems to be an increase in our insight. And with that, understanding that to be more effective as carers, and to be more stable emotionally, we have to accept that ambiguity. That is no easy task, but warrants continued attempts.
“We don’t like to accept, but maybe we can be comfortable with what cannot be solved.”
Here’s a great 50-minute podcast by Dr. Boss. She presents a compelling case for acceptance, with ideas on how to move towards it, and speaks broadly about a range of issues from the lack of “closure” in grief, complex grief, and living with unanswered questions.
Strength to you!
Updated July 3, 2016