My father isn’t dead. But the man who I knew as my father is no longer with us. His thin frame slumps in a wheelchair in a family-style residence for Alzheimer’s patients tucked into a suburban neighborhood. His watery brown eyes sometimes open, bewildered, attempting to make sense of the chaotic stimuli around him. Devoted staff members stand in the activity room singing “When the Saints go Marching In.” They lean forward, making eye contact, imploring engagement as residents clap their hands and sing along. It is a good home. No smell. Expensive. We have peace of mind, as much as that’s possible.
No, my father isn’t dead yet. Usually he remembers to swallow, and his diapers get changed. He no longer speaks, having reached an infant-like stage, with saliva on his chin that my mother wipes away as she would have done for her children. She feeds him with a spoon. But he is not her baby. He is the love of her life.
I see my mother stroke the translucent skin of her husband’s bony hand, give him a kiss on the head, chat to him about the past and the present as she looks into his face, wondering if occasionally a glimmer of her gets through to a surviving brain cell of his. Then she walks away, out of the home, hearing the security door lock behind her. She goes back to their brick house to live among their things, accumulated over five and a half decades of marriage. On the night table on his side of their king-sized bed she has placed a large framed photo of him smiling.
My father has become one of the ghosts of our times, those from whom we prod even the smallest flicker of emotional response, in order to reassure ourselves that their personalities weren’t just figments of our imaginations, that the people we loved did indeed exist – and that we still do. Dementia offers us a glimpse into the process of dying, peeling away another layer in the mystery of consciousness. In previous eras, many believed a body would die and leave a spirit – maybe in the attic, maybe in a hallway or the cellar – to remind us of his or her presence. Now, in the era of modern medicine, it seems the spirit can go first, leaving the body as its relic, in the living room of the residential home, for all to see.
We, his wife and three children, have lost him gradually, over a decade, bit by bit, synapse by synapse. But there has been no funeral, no formal acknowledgement that his identity exists now only in memory – in our memories, not his. There has been no comforting religious ritual to mark the transition, to frame a grieving period and give his family permission to move on. No friends have sent flowers or donations. Instead, my mother visits every few days, reopening the trauma of her loss, over and over, confronted by the ghost of the man who was her husband, her jitterbug partner, her only lover.
“He looks good,” she tells me in a long distance call to my home across the country. “He’s still so handsome.”
I go to the local gift store to choose a birthday card and take a long time looking for one with a picture that might delight him, since he is beyond processing words, even when read to him. I settle on a large, almost psychedelic butterfly, tropical colors and glitter against a bright turquoise background. It’s something I would have chosen for my son on his first birthday. A few weeks after I mail it, I open an email photo attachment: my mother and the staff around the wheelchair, a birthday cake on the table in front, and the big butterfly card clutched in my Daddy’s hands.
In a 1967 black and white photograph, I lie at age five beside my father at thirty-two, both asleep, under the branches of a red maple in our backyard. My mother had noticed us from the kitchen window as she rinsed some dishes so she grabbed the Instamatic and rushed outside. I was in a one-piece bathing suit, my head resting on my Dad’s warm arm. The photo captures the primal trust I felt, a complete dissolve into something stronger and safer, that a well cared-for child feels in the embrace of a parent.
The writer James Agee struck at the heart of that child-parent dependence in a dream-like passage in his 1938 masterpiece A Death in the Family. In twenty-eight pages that are part poem and part prayer, Agee conjures the experience of a toddler in his crib, fearing the descent of darkness, as his parents’ voices drift upward from the living room downstairs.
I hear my father; I need never fear.
I hear my mother; I shall never be lonely, or want for love.
When I am hungry it is they who provide for me; when I am in dismay it is they who fill me with comfort.
When I am astonished or bewildered, it is they who make the weak ground firm beneath my soul: it is in them that I put my trust.
When I am sick it is they who send for the doctor; when I am well and happy, it is in their eyes that I know best that I am loved; and it is towards the shining of their smiles that I lift up my heart and in their laughter that I know my best delight.
I hear my father and my mother and they are my giants, my king and my queen, beside whom there are no others so wise or worthy or honorable or brave or beautiful in this world.
I need never fear: nor ever shall I lack for loving kindness.
Looking at my father now with Alzheimer’s, I struggle to recapture that early certainty. There he is, my childhood giant and king, a frail, silver-haired man with a vacant stare who has no idea who I am.
My Dad was never feeble in life. He was a lawyer and conversationalist. He took pride in managing his family’s affairs, participating in each key decision that confronted his parents, in-laws and children. He was like a tree trunk, solid and familiar. When I was a child, I thought he knew everything, that he had some special access to the source of all truth. Maybe after I was asleep he would go to a mysterious place and confer with God or whoever else dispensed knowledge and decided what was right and wrong.
When I was in junior high my father and I often stayed up late on school nights deep in discussion, philosophical debates on war and atheism, psychology and capitalism. From my father I would learn to have faith in the rational mind.
By 15, I was drifting away from him; the smell of my sandy-haired 17-year- old boyfriend’s leather football jacket took the place of my father’s Old Spice aftershave. In my late teens my father became my advisor, offering soft-spoken counsel on university choices and career paths. He helped me manage my finances. Dad had come down to human size in my eyes, from a figure of absolute authority to a steady presence, constant as the earth under my feet. It is they who make the weak ground firm beneath my soul.
The man in the wheelchair who used to be my father loved jazz. The soundtrack to my childhood came from Duke Ellington, Dave Brubeck, Paul Desmond and Oscar Peterson. In jazz, my father lived the life not taken, a beatnik in a subterranean bar, pursuing worldly adventures instead of supporting a suburban wife and three children. I cannot hear the voice of Ella Fitzgerald or Cleo Lane without seeing my Dad, at work at the dining table, his pipe in hand, tapping his foot to the sounds from the stereo cassette player.
That man in the wheelchair also jogged daily for 40 years, believing that exercise would be a hedge against mortality. Now the doctors say his heart is strong. It’s impossible to predict how long he will live. Six months? Six years?
His grandmother had Alzheimer’s. His mother had it, as did two of her five siblings. We knew it was out there, but when the confusion started to show up at age 64, it seemed far too soon. A man who had puttered around the lake house, relaxing from his law practice into the Zen-like activity of small fix-it projects, began to abandon repairs, hoping we didn’t notice he could no longer figure out the mechanics of the plumbing or the connections of the wires.
Snorkeling with him in the Red Sea about a year before the official diagnosis, I noticed he was flailing around, agitated, confounded. He couldn’t keep the water out of the curved breathing pipe. He looked lost if I strayed beyond him by a few feet. I let him take hold of my arm in the deep turquoise water beside the reef. “It’s okay, Dad,” I said as our heads popped above the water and I guided him to shore. There in the Sinai, I thought back to how I had tried as a child to keep up with him when he swam to the rock on the opposite shore of the blackish green lake at our summer cabin, grabbing onto his arm when I got tired. By the Red Sea thirty years later, I guided my father out of the water and gently patted a big orange towel against his back.
Now I am over 50 and my father’s decline stalks my consciousness, just out of sight like a shadow that follows me. Do I only have 15 good years left? If so, why aren’t I in more of a hurry to accomplish all the things I have wanted to do? Maybe it is denial. Perhaps it is fear that keeps my siblings and me from taking any genetic tests, though we know Alzheimer’s is a hereditary disease. That fear prompts me to send small donations to every mail-in Alzheimer’s appeal in the hope researchers will come up with a cure in time for me.
My brother has taken over my father’s financial responsibilities. My sister keeps up with the medical side of things. I am thousands of miles away, living with the vague guilt of not putting in my time, of not repaying my Dad for all he has done for me now that this moment of role reversal is upon us. I get updates. One day my sister, who is not prone to emotional drama, breaks down after visiting him. “I can’t take it,” she says to me on the phone. “It’s so depressing to see him like this.” She is crying and we both cry together. A year later my brother is talking to me via Skype. “Those eyes,” he says. “You look into those eyes and you just can’t tell if anything at all is getting through.” It is in their eyes that I know best that I am loved.
Child psychologists say that seeing ourselves reflected back through the eyes of our parents builds our identity. We three are adults now with children of our own. And yet the child in each of us can’t help but feel lost: if he no longer even recognizes us, who are we?
In the beginning my mother would get angry at his mistakes, not realizing that it was the onset of the illness. He grew more dependent on her and she grew more patient, learning to live in the moment. When she realized he was pretending to read the same page of a book or magazine over and over, she enrolled them in a wire sculpting class. She no longer dragged him to movies or plays he couldn’t understand. They went to concerts instead. She took him to a native Indian drumming circle, chanting cross-legged on the floor as their palms patted the drums. She let go of her previous expectations of him. After she won a ballroom dancing course in a silent auction, they swirled around the dance floor like they had always done, since he was 15 and she was 14. Those were their best last days. There are no others so wise or worthy or honorable or brave.
At an annual Alzheimer’s lecture my mother and I attended, the take-away concept was ambiguous loss, a life-altering event that is permanent but ongoing. Divorce, for example, never really ends. Or a medical condition that robs one of a previous way of life. And of course dementia, when the person you love is gone, but not quite. Death, by contrast, is psychologically simpler. The passing of a life is a ritualized, shared, public event. It is acknowledged, not hidden from all except the closest kin. In the case of a physical death, time eases the pain somewhat.
But for Alzheimer’s families the passage of time seems to only deepen the anguish.
There were a few in-between years, when it wasn’t quite clear what my father could do or how he would behave. He went on a guys-only ski trip and a friend had to babysit him on the slopes and never spoke to my parents again. Others stopped inviting them over. Finally, my mother stopped taking him to restaurants. Few friends bothered to come by while she was holed up at home, her husband following her from room to room like a puppy. Eventually, my mother divided their friends into two groups: the good ones who visited, and the others who could not handle being around my father, their own fears of mortality mirrored back to them in his increasingly perplexed facial expressions.
He also fought her. Clinging to his last vestige of autonomy he insisted on driving long after it was safe, and even once snatched the keys out of the ignition when she was driving on the highway. He called her a “fucking bitch” and she told herself it was his disease talking. Eventually he would hit her when she tried to give him a shower. She didn’t tell us, just as she pretended his toilet accidents weren’t very frequent.
“I won’t remember him like this, you know,” my mother tells me over a cup of tea on one of my visits. It’s as if their prior life is a full-length movie which she insists will blot out the documentary short feature of these past few years, once he has actually died.
It has been nine months since I last saw him and things seem to be moving closer to the inevitable. My father now keeps his eyes closed much of the time, as if it is just too much work to use his sense of sight, as if the brain needs to rest, to have all its resources available merely to get the strength up to look at a person talking to him.
“You know, he’s not always like this,” a young geriatric social worker says to me. “When we throw a ball to him, he still reaches out to catch it. He likes playing catch.” I wonder at her use of the term ‘likes’ for what may be a mere physical reflex.
On this day, my father keeps his eyes shut while I ramble on about my son and his cousins and their activities. The professionals say he can hear.
What does he understand? Does a stray word, a name, spark a memory? Does a familiar voice or seeing a family member trigger a comforting emotion amid the agitated confusion? Does it matter? Some say the blessing of Alzheimer’s is that after a certain point the patient isn’t aware of what he has lost. They call it ‘the caregiver’s disease’ since the suffering is borne by those left standing helplessly by.
Surely, memory is the glue of our identity. Our very notion of ourselves is founded on our memories, short term and long term, rolling back over each other in feedback loops of reaction and adaptation to what we experience. As plaque obliterates this memory cache, what is left of who we are? What happens to the soul if there is no self?
A year later, I sit again in the home’s living room, holding my Dad’s hand. He looks at me, seemingly deeply…maybe something…but no. There is no registration of emotion – let alone recognition – which vanished long ago. Is he like a baby concentrating on the colored shapes of a mobile hanging above the crib? Did he stare into my eyes as I laid in my crib and wonder who I was, inside the pillowy package of infant flesh, eager for the day I’d begin to speak? Has he returned to newborn state, but without the capacity to learn?
Staring into my father’s eyes now reminds me of how different it was to position my face in front of my maternal grandmother’s eyes when I was 18 and she was dying of cancer. She couldn’t move anymore, couldn’t talk or eat. But I knew her mind was sharp, that she was there inside. Her eyes clearly communicated that it was a comfort to her to look at me. The woman we had known was here with us until those eyes finally glazed over, opaque, and I knew she had indeed slipped into darkness.
“My darkness, my dear darkness,” is how Agee addresses the unknown future in a monologue describing a child’s reluctant descent into sleep, toward a separation from his parents that seems to him eternal. My darkness, my dear darkness.
Under your shelter all things come and go.
Children are violent and valiant, they run and they shout like the winners of impossible victories, but before long now, even like me, they will be brought into their sleep.
Those who are grown great talk with confidence and are at all times skillful to serve and to protect, but before long now they too, before long, even like me, will be taken in and put to bed.
Soon come those hours when no one wakes. Even the locusts, even the crickets, silent shall be, as frozen brooks,
In your great sheltering.
Agee offers us nightfall, the daily darkness between first star and the dawn, as a metaphor for death. But now, as I ponder the words soon come those hours when no one wakes, I recognize something beyond – or even before – death: that mysterious place my father dwells, between the extinguishing of his identity and the expiration of his physical form. This darkness, which lurks at the edge of all our days, has in the era of longer life and diagnosed dementia, crept into the harsh light of nursing home living rooms. Agee’s darkness, I now understand, describes not only death but also the half-light of mental decline, the uncharted, private, incremental death of the self.
When I was a child I feared death, appalled by the utter absence of consciousness that I tried to glean, lying in bed imagining what it would be like to simply not exist. Death, I sensed, is like general anesthetic. No memory, no reference point, just nothingness. Terrifying in its totality. I would sob into my pillow, grieving the future end of my being. But now I fear more the loss of self-identity, of context, amid an open-ended time when foggy consciousness still persists. More than death, I fear a non-engaged awareness in which I am floating in frustration, bombarded by sights and sounds which refuse to coalesce into something coherent. Death seems a sweet relief compared to the confusion and agitation I have seen in my father’s face.
Agee ascribes a sense of comfort and protection to the approaching darkness that brings sleep, the nightly separation from their parents that young children believe will last forever:
You come to us once each day and never a day rises into brightness but you stand behind it; you are upon us, you overwhelm us, all of each night…before long, before long, all are brought down silent and motionless.
Under your sheltering, your great sheltering, darkness.
And all through that silence you walk, as if none but you had ever breathed, had ever dreamed, had ever been.
We lived for so many years under my father’s sheltering, and now we live beside his shadow, witnessing a perpetually darkening inner landscape, not quite sleep, not quite a return to infancy, not quite death. We are experiencing in slow motion a death in the family.
Nonetheless, we only partially mourn my father, whose hands are still warm to the touch, who is perhaps comforted somewhere in some dark place by the familiar sounds of our voices, who maybe feels something dimly pleasant when we kiss him or give him a hug goodbye. He has become utterly vulnerable. The difference between parent and child has vanished. The space between living and dying has become blurred.
Before long, before long, all are brought down silent and motionless.
And all through that silence you walk, as if none but you had ever breathed, had ever dreamed, had ever been.
My father may not be dead, but he is gone.