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You are more than your name

Anybody who is the primary or even just  frequent caregiver for a loved one with Alzheimer’s will eventually experience the day when he no longer knows your name.

My father is several years into having an Alzheimer’s diagnosis. Like the proverbial frog in boiling water, the symptoms worsen and accumulate so slowly that you don’t really notice how advanced the disease is getting until you’re confronted with something like his having forgotten the name of someone important to him. He has long since forgotten the names of his five kids, including mine.

I stay with my Dad a few times each year so that his wife, his primary caregiver, can escape to a hotel or even get on a plane and take a much-needed vacation. On my last few visits, instead of asking about her by name, he asked “When does my wife come back?” or “When is she coming home?”

At first, with reminders, the forgotten people pop back into his head — magically brought back into existence. But his reality is shrinking, and someday, anything or anyone not there in his immediate present world will no longer exist. When that time comes, the reminders of names will do nothing, and the more distant family members who don’t frequently visit will be permanently gone.

But those who are with him all the time will be the last to be forgotten. For those people who are still fixtures in his life, there’s more to his memory of you than language: in his mind and in his heart, there’s a lot more to you than just your name. A name, after all, is just a word with a lot of associations attached to it.

He might lose our names, but that’s a long way from losing us.

Even if he does not remember your name, he likely remembers, even if subliminally, that you are someone who cares for him. He remembers you love him, that you had a life with him. Even if he doesn’t have access to any of the specific fond memories, you still somehow conjure up fondness. Of course this will also be taken away by the disease, but perhaps it hasn’t happened yet.

Don’t let yourself confuse “Who are you?” with “What’s you name?”.  He might not remember your name, but he just might remember what matters about you being you.

[More posts about Alzheimer’s]