Eileen shares her experience with her husband, Joe’s, dementia
I was talking to my sister about the PB&J tooth sandwich, and she’d asked how long it had been since Joe was diagnosed with dementia and then she asked me if it was “getting hard” to be with Joe. Here was my response to her questions:
“I guess the answer depends on one’s definition of “hard.” When I am with Joe, I enter his world, his moment. There is no wishing “what if” or “shoulda, coulda, woulda” because 1, it’s wasted effort ( he won’t get better, just worse) and 2, being with him is a continual learning experience for me. So few of us live in any one moment, we are worrying about the “shoulda, coulda, woulda” things instead of enjoying where we are in this very
moment. I also have no expectations for him, and therefore I can be in his moment without any judgment.
His genuine “innocence” while negotiating his world in his way is a continual lesson in “doing the best you can with what you have.” That goes for me, too.
As nasty as his disease is, it has taught me a great deal about how to be here right now and to enjoy the silly things like dentures in PB&J sandwiches and to not mourn what might have, should have been.
Perhaps someone else would have been mortified or would have wanted to “scold” or correct their loved one for not behaving in a way that is, I don’t know, socially acceptable. But to him, it was a logical and reasonable thing to put his teeth in his sandwich, in his moment, in his world. Accepting him for who he is and where he is in his world is what makes this journey with him so amazing, and yes, so challenging.
Sure, it’s unfortunate and tough to accept that we aren’t able to enjoy the life together that we coulda, shoulda woulda had together if he didn’t have Alz. It does not hurt me when he asks who I am after being with him for hours. It’s not sad or hard when it takes a few seconds for the light of recognition in his eyes to shine. It’s then that he shows me his joy seeing me and how he shows me his love when he smiles and caresses my face with his hands when I arrive. I don’t worry that one of these days he won’t ever recognize me again because that’s not savoring the moment we are in right now. Those are the moments I will still have when he doesn’t remember me.
And, yeah, I’m sitting here crying as I write this because it hurts to see him so helpless and dependent on others compared to the man he used to be. And, yes, I mourn what isn’t, the “shoulda, coulda, woulda” for us. But this experience has made me a better person, a stronger person and it truly has taught me patience, great compassion, acceptance and unconditional love in the truest sense of those words. “