I knew from experience exactly what Maria was describing. My own father had died twelve years earlier after rapidly declining from early-onset Alzheimer’s. He was only sixty-nine. Seeing my father in the nursing home was always painful, but when he stopped recognizing me, visiting him became almost too painful to bear.

There is something primal about the heartbreak that an adult child of an Alzheimer’s or dementia patient experiences when a parent no longer knows them. Even as adults, most of us seek our parents’ approval and attention to some extent. In their presence, we may even revert back to childish feelings and behaviors. (I am very neat and tidy in my own home, for example, but I occasionally find myself flinging my coat aside and leaving my shoes in the middle of the floor in my mother’s house). When a person with whom we formed one of our first and strongest love relationships no longer remembers our name, it deeply hurts. Hearing Maria’s words reminded me of this fact. Her courage to be forthright about her own feelings allowed me to admit to them myself in a new way, even after so many years had passed.

Why did Maria (and I) use the word “admit” in reference to our emotional reaction? When a parent has been reduced to the state of a helpless dependent, grown children naturally take on aspects of the parental role. Often, we become the caretaker, at least to some extent. We understand that it’s terribly sad to see someone we love lose so much of their personality and with it, the connection we once had with them. But we may be unaware or unable to admit to ourselves the full extent of the impact on us when our mother or father can’t remember our face. We might feel like we should not let their lack of recognition “get to us.” After all, we’re grownups. We know intellectually that this is a symptom of the disease, not a personal slight. But that knowledge often fails to protect us from the natural reaction that follows. We may simply feel forgotten.

Coping with a parent’s descent into dementia is a tragic situation on many levels. For grown children, it’s important to remember that we need to allow ourselves to mourn not just the gradual loss of our mom or dad, but also the loss of our role as that parent’s beloved child. It comforted me in my father’s last days to realize that no matter how addled his brain had become, somewhere inside his heart he still felt the love that he had held for me since the day I was born. I know this because a parent’s love for a child is strong enough to transcend anything, even dementia or death.

 

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