My mother has dementia
When I tell acquaintances that my mother is in throes of dementia and living in a memory care facility, they typically react with a sort of fatalistic empathy. And, maybe, within themselves, fear of what might be.
I know their caring is as real as I suspect their dread to be. My mom was substantially defined by her intellect and her successful career on the staff of a U.S. senator. It is a cruel fate that a vibrant mind should be subjected to the metaphorical wiping of its hard drive.
We tend — not unkindly by intent, I think — to view people suffering from dementia as less than the whole human they once were.
Dispossessed
They can be seen as the zombies of our time, worthy of sympathy but stripped of their humanity. Those with even the most debilitating diseases can still converse, interact, remember. Those with dementia are dispossessed of reason, memory and, as such, we conclude, their core selves.
Many people I know question whether it even makes sense for someone in dementia to carry on, and insist that, if it were them, they surely would not want to. As with many things, that’s an easy conclusion as a distant thesis and fails in the light of living.
My mom is, simply, still my mom. Beneath the hard-to-penetrate shell of dementia is the person who put herself through college, twice; survived my dad’s premature death and the resultant need to raise a family solo; earned a distinguished career; stayed steady to her faith.
That person, today, intermittently surmounts the entrapment of dementia to engage and remember, even shed new light on the past. Just as often, she careens into abstraction and not always reconcilable derivatives of her past and present realities.
But always, she is there, perhaps in her purest sense. She exists, today, to receive and return love.
Stripped of pretense, social sensitivities and interpersonal tensions, she routinely, emphatically, expresses her love and gratitude for her family (whom, yes, amid the confusion, she still recognizes) and wants only to receive the same from us.
More human than us
She is, in that sense, more purely human than most of us, even her past self.
Studies show that people fear dementia more than every disease but cancer. Among those over 65, dementia leapfrogs even cancer. The erosion of cognition scares us even more than the pain and inevitable lifespan-reducing consequences of most physical illnesses.
I guess we understand, and even prefer, the certitude of a death sentence to the ambiguity of memory loss, dissipated intellectual capacity and wandering in unmarked corridors of our minds. We think that we surrender more of our true selves in cognitive decline than we do with any purely physical ailment, however critical and painful it may be.
We are, after all, human. And maybe with that fallibility comes our simplified perspective of those who, through dementia, have in our view become less than fully that. Maybe we just need to look a little harder. Connect with the person who still is there, versus longing for the one who was. Seek whatever reservoir remains intact behind the dam, accept the meandering overflow.
None of the process has been easy. The Kubler Ross Grief Cycle seems to apply as readily to dementia as it does death. Maybe that’s why we so freely, and wrongly, seem to equate the two.
And from onset, when my mom asked the identity of my sister-in-law, whom she knew well, at the end of a Mother’s Day brunch, to finding the right care to the seemingly endless dirge of emptying and selling her condo, it has been a journey of frequent tristesse. But also a bonus round of close interaction, healing, and saying what needs said, words less important than their emotional conveyance.
Human moments
Humanity prevails. And many moments are their own treasures. The other day, as I was concluding a visit, my mom — who that day had reflected clearly and accurately on her siblings but later told a disconnected story of a young boy in a gold suit, at the front of a parade line — part of the daily yin and yang of her disease — asked me to pour some more soda into her cup.
“Are you sure you haven’t had enough?” I asked.
“Oh, I have,’ she replied, “but I know if you pour more you will stay while I drink it and I’m not ready for you to leave.”