Dementia Has My Grandmother Living In Two Different Realities And I'm Left To Helplessly Watch Both

There's a kind of grief that nobody ever prepares you for. It's the kind that arrives long before someone is actually physically gone. Dementia takes people slowly, while they're still right there in front of you. 

Some days, she'll look me straight in the eyes and tell me about how she's exhausted from running here or there for a husband who has been gone for years. Looking at Gram in her wheelchair, I can see the confusion-filled cloud of dementia that hangs over so many who live in the home.  But lately, she's slipped past the frustrated stage into one of simple contentment most days.

Dementia has my grandmother living in two different realities, and I'm left to helplessly watch both

nygi / Unsplash

Sometimes she's with us, and sometimes she's lost in that world of her own, but the fear of those two worlds colliding has lessened.

This past year, it's been really hard. While there are moments of tenderness and heartbreaking hilarity, continuing to visit and watch mental and physical deterioration isn't easy. And even worse, being powerless to change any of it. It's no longer the way that it was.

She doesn't understand watching baseball anymore, so our biggest shared interest is gone. And at times, I don't want to clean up the room or stop in and find that she's still sleeping, blinds closed, and the room dark in the middle of a sunny summer day.

But recently, an aide commented to me, "It's nice that you still come and visit so much. So many families just disappear."

I hate to admit it, but I know exactly how those people feel. Most times, I just don't want to go. Maybe it's fear. Maybe it's knowing that she is safe and in capable hands without me doing the work.

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Maybe it's the difficulty in seeing a person you love with your heart and not just your eyes, fade into the gathering darkness. It's hard when she's not the person that she used to be.

My grandmother exists in two worlds for me: the reality that we all know and the reality my mind creates, the way I want to remember her

But if being on the outside is rough, being on the inside must be harder, even if her recognition of this has passed, too. We all have times when we feel alone or fear that somehow we'll be forgotten simply because we've changed in a way that others find hard to accept.

But while it's not always fun and it's not always easy, it's also not all about me.

So I go to make sure she's comfortable, to selfishly lessen my guilt, to connect her two worlds when I can and make sure she knows that I'm there — wherever her "there" is on that day.

I go because this is our reality now. I go because deep down she's still the same Gram. I go because love doesn't just disappear, and because she hasn't either, neither will I.

Watching someone you love disappear in pieces is one of the loneliest kinds of loss there is, because the world doesn't always recognize it as loss at all. However, experts argue that it is. And so is the love that keeps you going back anyway because she's still in there somewhere, and so are you.

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Abby Heugel is a freelance writer, editor, and award-winning blogger whose work has been featured in The Huffington Post, Bustle, In the Powder Room, and Erma Bombeck Writers’ Workshop, among others.