my answer to a grandson’s quora question

Quora is a site where people ask questions, and others answer. I’m often asked about Alzheimer disease. One day, I found this request in my inbox.

“I know the basics, that it affects your memory and erodes your personality, but what else should I know? Or can you give me more detail? My grandfather has Alzheimers, and I want to know what will happen.”

There was no way to know how old this grandson was. A teen? A twentysomething? Maybe even in his thirties. Whatever his age, I wanted to try, for his sake and for his grandfather’s, to give him an answer that created more possibility for joy than despair.

Here’s what I wrote:

“I don’t believe Alzheimer “erodes your personality.” In fact, I don’t believe most of the negative narrative out there, which doesn’t fit my experience with my own mother who lived with the disease for a decade. If you want to understand more, there’s stacks of information and personal opinion on my blog. Here are some starter links:

• if you think they don’t know think again
• 5 ways we rob people with dementia of their dignity
• let me shine: a dementia rhyme to open minds

I believe the best thing you can do for your grandfather is to continue to love and respect him for the person he is and will always be. If you open your heart and your mind, you may discover depths of unconditional love you might not have thought possible. It will change you forever, for the better.

On the issue of behavioural changes you may see in him, I suggest you take this survey to gain perspective:

How would you behave?

People are not the disease they have. They remain who they are until the end. Don’t let anyone convince you otherwise. If you look, listen and pay close attention, you will always be able to see your grandfather just as I did my mom; like this:

i see you, i love you, i miss you

If you are lucky, you may get to be with him when he leaves this place for another, like I was when my mother did:

dying with my mom

Those are some of the things I think could be useful to you. You and your grandfather will figure out the rest together as you walk this life path hand in hand, heart to heart. Stay by his side; remember that he always knows who you are in the deepest sense from the very core of his being, even when it may seem he doesn’t recognize you at all. You are his legacy. He is your history. Honour that.”

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