Sunday, January 19, 2014

The Question Everyone Asks Families of People with Alzheimer’s

“Does your father still know you?” Sometimes, “How’s your dad? Does he still know you?” Sometimes, “Does your dad still know your mom?”

I felt awkward every one of the hundreds of times I received this question. And I wasn’t sure how to answer. It was as though people somehow thought the pivotal point in Alzheimer’s disease progression was family recognition. As far as I know, no such pivotal point exists in the commonly accepted seven stages of the disease. Or maybe people don’t realize a person with Alzheimer’s might not recognize you one day and call out your name the next. Or perhaps, the question was simply a springboard for expressions of sympathy. All I know is that like a pregnant woman hearing, “Hey, you got a basketball in there?” for the 47th time, I got tired of the question.

For me, the answer was not yes or no; it was nuanced. And I suppose the whole recognition decline happens differently for different people. My dad’s diagnosis came about 10 years before his death, so he had a long time to lose track of family members. But he never did—in his heart. As he gradually lost vocabulary, sometime in his final year, he lost our names. And sometimes, toward the end of his life, on a bad day, my “Hi, Dad! It’s Jane. I came to visit you,” did not elicit the usual smile. But even on those days, once we had wheeled away from the nurses’ station and gotten knee-to-knee for our visit, he reached out for my hand with his big warm hand, and I sensed his contentment. That’s what I call knowing me.

And when I brought my mother, and she leaned down and kissed his lips, when she caressed his stubbly head and held his hand, he fixed loving eyes on her like a soldier coming home from the war. That’s what I call recognizing my mother. Even on his deathbed when he was barely breathing, he wanted to hold Mom’s hand. When family was with Dad, his sense of “This is right; this is how it’s supposed to be, and I am happy” filled whatever room we were in. Though he didn’t know our names, and sometimes not even our faces, his recognition of his family’s love was palpable.

I don’t know if all people whose loved ones have Alzheimer’s can be confident of a heart connection unto death. As long as I live, I will thank God that our family did receive this gift. Speaking of gifts, another reason the “Does he know you?” question is awkward to receive is that it presupposes that visits will become less gratifying, perhaps even useless. Indeed, different family members might have different levels of sadness and avoidance once the paradigm shifts to unfamiliar one-sided conversations with Dad. This is, however, when family’s visits become precious sacrificial gifts. It’s not about us; it’s about Dad. “Does he know you?” implies dread of the moment when giving to Dad becomes its purest and most joyful.

Perhaps when people asked me, “Does he know you?” I assumed they wanted to know about names and faces and dread, so I didn’t know how to explain. Perhaps I should simply have answered, “Yes.”

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