On Existential Distress in Dementia

I’ve been consumed with moving this past week. In the process of unpacking I found some of my writing on the downhill side of the moderate stage of my husband’s Alzheimer’s.

What is it like to experience the connections to past memories break apart? I mean the short term memories are one thing, but long term memories are literally your life. For Stu, old memories became intermittently opaque.

One day, no different than the days before, he looked at me, urgency in his eyes.

“I love you so much. I love you so much. I love you so much. I never told you how much I love you.”

I ran to his side.

This was unexpected and not true. He told me often and we never ended a phone call without saying “I love you,” a habit that soon became standard with our kids as well.

“I know you love me. I know you don’t want to leave me.” I put my head on his shoulder and one hand over his heart as I had done so many times before.

“After all the times I messed up. I don’t understand how you could still love me.”

No clue what memories he was trying to access. Putting his career ahead of his family? Recognizing he repeated the mistakes of his parents? Not being a good enough father? husband? man?

I defaulted to our love language which was laughter.

“I don’t know, but I do.” I laughed and kissed his cheek.

He began to cry.

“Oh honey, you are the love of my life. I will love you forever.” Then I reminded him of all the patients he had helped. Of all the doctors he had trained. Of how much joy he had brought to my family.

How he was my hero first, then my soulmate, and when this life was over I would find him on the other side.

He cried some more, and went back to repeating “I love you so much,” until we both fell asleep.

Today, two and a half years after he died, I can’t help but wonder if some deep foreboding feeling of regret, detached from specific circumstance was causing him existential distress.

And I hate that for him. I can only hope that when he woke up after our nap, that feeling was gone.

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