Sharing hard-earned wisdom

The relief I felt when Michael took his last breath was overwhelming. I expected a trickle, but it was a wave and I welcomed it. Shamefully. 

I had loved him, truly, but everything changed as his mind began to slip away. Forty-six years of companionship -- we had our challenges, but we were mostly a well-matched team. Eight of those years were a struggle to identify his condition, followed by twelve good-enough years with dementia as a background, then three years that acknowledged his drift towards death. 

As the mind disappears, so does emotional competence, the relevance of boundaries, and the capacity for mutuality. The reciprocity of marriage slowly and capriciously becomes a hierarchy of caregiving. 

The name I gave my role, and eventually entitled my memoir, was Dementia Widow, a woman who is married to a man who is no longer a partner, but still apparent in the role of husband.

I learned that when dementia visits your family, you had better be prepared to do the heavy lifting, to not count on society to provide what you need, to act early and decisively to create the world you need to survive a prolonged dance with an incurable disease.