Ambiguous Loss

Bill likes to “go somewhere,” and we have taken short trips to Southeast Park not far from our house. I went up on the path while he stayed behind to ponder.

In the latest book I’ve read on dementia, Loving Someone Who Has Dementia, the author Pauline Boss, PhD, introduced her readers to a term she coined to describe dementia: “ambiguous loss.” Its meaning captures the essence of how caregivers think about their loved ones with dementia. That person is here but not here, present but absent. What’s gone is the psychological person and what’s left is the physical person. The loved one is still real but something is missing. What we knew as a whole person with personality, talents, educational traits, and abilities is no longer here. Logic and understanding are gone along with issues related to health and stability.

As a wife and caregiver, I embrace Boss’s term of ambiguous loss. Bill is still the man I love but not the man I’d known for over 60 years. The last six years of our marriage have challenged me to accept Bill as who he is now, what I’ve been given. And that gift, my husband Bill, is from the Lord, both then and now. I’m thankful that God has trusted me to care – in ways that I had not planned nor wanted. It’s not like I have a new husband, like a second marriage. It’s more like I’m getting to know the man I married in a new and changing-every-day way.

I’m also getting to know myself in a deeper and more insightful way. It’s how I respond and react to Bill that turns the corner on who I truly am inside. That’s the thrust of the memoir I’m slowly writing – what Bill’s dementia has taught me about myself. Most of this is because I am  learning to react to the disease and not to Bill. He is not to blame for his dementia. He did not ask for it, and nothing he did caused it. The dementia, the disease, is the culprit.

Alongside ambiguous loss is a related grief. For when we lose someone by death, we grieve, and people accept that as normal. But with a loved one’s dementia, the losses come gradually, and we want to move on. Closure, however, is a myth. We must grieve each loss while we wait for another. We must accept grief now as well as later. And that is a natural process.

If all this sounds negative, it is not. The positive outlook is hopeful. Grace is given daily and hope is around the corner for us who believe in eternal life. So I end with: Praise Jesus.