My Dementia Lessons | Three

“If I ever get like that, shoot me.”

I’ve heard people say this after encountering my dad. I find it painful to hear, but I also understand that dementia is very, very terrifying. The very idea of it feels as scary as standing on a high ledge and seeing only darkness below.

My grandmother had Alzheimer’s, but I didn’t think about getting it myself until my dad was diagnosed. Then it was too close to ignore, and I found myself face to face with reality: this could happen to me.

But today I’m much less afraid. I’m not saying a dementia diagnosis won’t upset me. I’m just saying that I’ll be able to brave it.

And here’s the number one reason why:

Loving my dad as he falls deeper and deeper into dementia has taught me that all life is valuable. All of it. Every moment.

Which Father Did I Want?

Sometimes I hear people say of dementia patients, “the person before me is not the person I knew. That person is gone.”

I don’t see it that way because I feel that perspective limits the person with dementia by only valuing one way of being–the way we knew them in the past.

As soon as I opened up to the possibility that there are many ways of being ourselves, I realized that my dad was just living a new way of being him, and that there could be many more ways to come. If I wanted to be present to what these new expressions had to offer, I had to abandon my need for him to be exactly the same as he always was.

And he had never been cryogenically frozen, so I really couldn’t say which Dad-of-the-Past I expected him to be. Was it the dad I knew from the 70s? He was pretty great back then with his reel to reel tape machine, his chess, and his cigars. Was it the laid back artist dad I had as a teenager? Was it the elderly, entertaining dad I saw on Friday nights with my mom and my husband?

Since when did I get to decide who he was? I really don’t have the right to determine that the life he’s living now is less valuable than any other time in his life.

The Self Is Not in Stasis

And by the way, which one of us isn’t changing? If I told you that you could only be one way for the rest of your life, you’d think I was nuts. If I told you that no matter how you changed, I’d hold you to the person you are today, you’d think I was narrow minded and mean.

But we seem to expect this of dementia patients all the time. We can change, but they can’t.

Maybe it’s the rate of change that bothers us. Their trajectory is swift, so we notice it, while ours is slow and often imperceptible. Most of us probably can’t imagine ourselves without our ability to reason, follow directions, and understand complex concepts. What’s the value in that kind of life?

Rethinking Value

People with dementia have helped me understand that I’ve had a narrow view of what it means to lead a meaningful, valuable life. I’ve wrapped value up in a lot of trappings that actually don’t matter at all, including social contribution, impact, and legacy.

When I visit my father, he seems happy simply to be recognized. “Here I am,” he seems to say to me, “don’t shoot me.”