The morning my grandmother suffered her life-ending stroke, my grandfather, after trying to rouse his wife of 65 years, went outside and mowed the lawn. On the morning of her funeral, he refused to shower. A few days later, passing by her picture, he stated, "I haven't seen that woman in a while."
He wasn't calloused; he was confused.
My grandfather is among the millions of people who have dementia, and my grandmother was one of the many family caregivers who predecease their sick partners. I am among the growing number of intimate bystanders who know and love someone with dementia. I also happen to work in a skilled nursing facility as the chaplain to many residents with some form of dementia.
Eloquence is irrelevant: dementia sucks really bad. Dementia defies platitudes and niceties; however, it does not defy meaning and life.
The truth is, we are all one tick away from terror and triumph, from exultation and annihilation. In a nanosecond, your carefully calculated savings can be multiplied or drained, your health decimated or restored.
We -- particularly those of us with a measure of privilege -- spend a great deal of time and energy convincing ourselves and everyone else that because we're better informed, better prepared, and generally better than most other folk, then we will avoid diminishment, dependence, death.
A dirty secret: we will make good worm food just like everyone else.
If we live long enough and if we haven't already experienced some disability of body or mind, we most certainly will. We do not choose what form our disabilities will take -- arthritis for some, Alzheimer's for others. Rain pelts the heads of the righteous and the unrighteous.
Human vulnerability is made no more terrifyingly visible than in those people with dementia. My grandfather -- the pilot, the physician, the jazz musician -- now cannot tie his own shoes. This might be you or me, tomorrow or in 20 years.
Confronted by our own mortality and limitation, we who are witnesses to persons with dementia often recoil in shame and embarrassment, yet there is another response. We can embark on the journey toward acceptance, maybe even celebration, both of oneself and of the person with dementia.
The nonlinearity of time that accompanies dementia is the source of much anguish for caregivers who bemoan, "This is not my dad!" The implication being that the person is no longer the caregiver's "real" dad or mom or spouse or friend. The "real" person is the past person. Who, then, is the person before us now? Simply the "ruined" version of the "real" person?
Dementia forces us to grapple with the reality that no one is a fixed entity -- not you, not me, not anyone. (Who among us is the same person we were at 18 as we are now?) If we consult the prophet Jonah or check out Moses' negotiations with God, we must also consider that even the Creator is not static, that even God may change.
What if we begin to conceive of God as abiding, dynamic presence rather than distant, rational ruler? A God who is just as present to the post-dementia person as to the pre-dementia person? A God whose relationship with the person changes as the person changes?
If, eternally speaking, the person is no more or less "real" today than she was 30 years ago, then perhaps the "real" problem is our inability as bystanders to offer our presence to the post-dementia person.
No doubt, opening ourselves to a person with dementia, with their puzzling and sometimes jarring responses to the world, is a herculean task. When I spend time with individuals with advanced Alzheimer's, I can expect no ego-stroking return on investment, no affirmations of a job well done.
Offering one's presence to a person with dementia means letting go of our need for rational interchanges, direct social cues, logical conclusions. It often means letting go of words altogether and entering entirely into the realm of affect and intuition.
My grandfather may not recognize me when I visit, but he can intuit care and love. He can feel my hand holding his and know, in a place beyond words, what this touch means.
In the struggle to understand what it means to be human with dementia, we need the contributions of those who regularly traffic in the spheres of the intuitive and ineffable, who understand the value of someone as transcending linear, hyper-rational formulations of identity. This is why we so desperately need the wisdom of poets and painters, dancers and drummers, sculptors and singers.
We who are people of faith must sit at the knees of our mystics, those teachers of the cloudy realm of unknowing. We need the insight of these prophets -- who point us toward different ways of knowing and experiencing the world, one another, the holy -- every bit as much as we need good doctors, drugs, and living wills.
Eve, a resident on our fourth-floor dementia unit, reaches out both arms toward me as I walk by. (She doesn't know me from Adam.) She takes and squeezes my hands hard. I ask how she is doing, but I can't understand her jumbled response. She then kisses the back of my hands, holding them to her face. "I love you," she declares. She won't remember me once I walk away. In this moment, she is -- and I am -- here. I smile. There's nothing to say.
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