I've never met my Facebook friend Brianne in real life. We only know each other from an online support group for caregivers for loved ones with dementia. But as soon as I heard her story I knew I needed to share it.
The moment I feared most was most beautiful…
...my mother was diagnosed with dementia two and a half years ago.... And from that instant I began trying to prepare for the moment when she wouldn’t know who I was. ... But when that moment finally came, it was profoundly beautiful, and with it, I saw something beyond my mother’s dementia.
It happened over the holidays. Mom was wandering the house one night, and came into the room .... I woke up, as she was turning back out. I followed her to the living room and saw fear, nervousness and sadness all over her face.
“What’s wrong, Mama?” I asked.
“This is my home,” she said, “but I don’t know who you people are.” She was on the verge of tears.
It was The Moment I feared--but… but…in that moment, not an ounce of my consciousness was thinking about me. I was focused entirely on the scared woman in front of me.
“Oh, I see. That must be scary. Well, I can tell you we are all people who love you. We’re all here because we love you. You might not remember, but we love you a whole lot.”
“You do?” she asked, as I watched the fear slip a little.
“Yes indeed. We love you tons, that’s why we’re here.”
This is the first insight: the "theme" of that moment was to respond to the person in front of her--not, primarily, to her own reactions. Brianne was looking forward with dread to an abstract event, but the reality, when it came, was not some disembodied happening, but enmeshed in the particular person before her and the longstanding relations between them.
Next came a stroke of genius:
A sense of ease slipped into the cracks, so I thought I would take a chance.
“Do you remember you have a daughter?”
“Do you remember her name is Brianne?”
“That’s me!” I said, with the warmest smile I could ever find.
And then the fear disappeared and my mama reached out to me for the most amazing hug we have ever shared. She pulled away, looked at me with the sweetest eyes, then hugged me more. I don’t think my mother and I have ever been wrapped in a moment filled with so much love.
Had her mother forgotten who she was? Technically, you could say so. The ability spontaneously to connect the name with the face, or the person she was looking at with the memory of her daughter, was gone. But the bond between beloved mother and beloved daughter was intact.
And that is when it hit me...the place where love resides cannot be touched by any disease. The place where connection flows is beyond any intellectual comprehension, and so a “rational” mind is not necessary to experience it. Those moments of grace like the one I had with my mom are always on offer, just beyond our ideas of what’s wrong.
Alzheimers is still a tragedy, and Brianne doesn't pretend otherwise:
I still have moments of sadness and grief when I think of the mom I might have had if dementia had not come along, but the heaviness it once carried is gone.
I've seen my grandmother and my mother pass through the stages of Alzheimer's, and I've seen how, even when it's very advanced, they will grasp a hand reached out to them. In I'm Still Here: A new philosophy of Alzheimer's care, John Zeisel tells how the sense of touch, which connects us so closely to one another, is one of the last abilities to go. We're sometimes over-hasty to equate the disappearance of reasoning power, spatial awareness, or agility with the disappearance of the person. We don't even try to reach her in other ways.
It's also a failure of imagination: if we don't have access to the person's thoughts through speech, we assume there are no thoughts there. But I remember when my grandmother was in the final stages, confined to a bed in a nursing home. She hadn't said a word, much less a full sentence, in a long, long time. But one day she looked up at the nurse and remarked graciously, "You take care of me every day." She was "still there," all evidence to the contrary.
Brianne also rejects the idea that the person with dementia has somehow "disappeared." It might seem to make sense to talk about "the person she used to be." The experience of missing someone who's still there is real, and it comes up again and again in our online support group. But moments like the one Brianne describes are testimony to the person who is still there, outlasting so many former abilities and skills.
When we look at the disease, we find despair. But the human we love is still present. When we look at what is lost, we find heartbreak. But something more powerful always remains. When we look at what is or is not said, we find confusion and frustration. But beyond all language, life itself will carry us when we cannot carry ourselves.
This is not “looking at the bright side”, I believe this is seeing something more true than dementia.
I think she's absolutely right. And I won't presume to add anything more to Brianne's words. I just wanted them to have as wide an audience as possible.