I have been an occupational therapist for more than twenty years, providing home visits to seniors for most of my career. More and more, I find that my skill set better serves the caregivers of people with dementia than the patients themselves. One dark winter afternoon, I walked into this tragic situation and found that the most valuable clinical expertise I had to offer was my vast experience with personhood. And that was not nearly enough.
He met me at the door of his childhood home, pushing open a battered and worn screen door on loud, shrilly hinges. The yard was overgrown with flowering weeds and vines, and a large, wooly boxwood spilled over the front porch in desperate need of a trim. Random items sat on the steps- a shattered flowerpot, a leaky bucket, a soggy newspaper disintegrated within its plastic wrapping- telling signs of impartial neglect.
“Thank you for coming,” he said, holding the door open for me but not meeting my eyes. He was in his late thirties, handsome but haggard, and his shoulders sagged beneath his wrinkled grey t-shirt. He was articulate and well mannered, and his boyish sincerity rendered the disorganization instantly forgivable. This man was clearly overwhelmed.
I stepped inside to darkness. The window curtains were drawn. Several floor lamps provided dim light, even as the midday sun shone brightly outside. I moved further into the entryway as the screen door banged shut. That’s when I first heard her moans.
My eyes followed the worn and stained carpet to the top of the stairs where a frail, elderly woman stood wringing her hands.
“Can I come down?” she asked.
I waved to her. She crept timidly along the banister, step over step, until she stood directly in front of me. She tugged on the edges of her dirty sweater, trying to find something useful to do with her hands. She tilted back her head, and said, “The doctor told me something is wrong. Do you see it?”
As she opened her mouth wide, he son rushed up behind me, “Mom, there’s nothing wrong with your mouth. Stop that. She’s here for dad.”
I followed her son into the living room. Piles of boxes and clothing, piled high from floor to ceiling, created the walls of a goat path that zigzagged through the room. We came upon a small space in a clearing against one wall.
I almost didn’t see him.
A pale, malnourished a man lay on a simple cot beneath a window, his cheeks drawn tight and mouth agape. He was draped with a soiled sheet, his lips cracked and caked with dried saliva.
Words stuck like barbs in my throat. “Hello, how are you today?” I asked as more of a courtesy than a conversation starter.
His wife slid up next to me, her frizzy hair matted, teased, and clipped at the top of her head. She glanced nervously at me, and then to her husband, chanting a low, rhythmic hum.
The man on the cot, his face frozen and unblinking, suddenly replied in a weak, raspy voice, “Oh, I’ve been better”. His limbs were contracted, his body a rigid skeleton.
I looked back to their son who continued to stare at the floor, clearly uncomfortable that I was a witness to their lives.
“So, looks like you’ve got your hands full here,” I said to the son.
He nodded, eyes glued to his feet.
His father had just returned home from the hospital where he had been treated for pneumonia and dehydration. His late stage Parkinson’s rendering him completely immobile.
“They sent him home like this,” he said. “He can’t even move.”
Alarms clanged in my head. Thick tension hung in the air. I could think of only one question that wouldn’t cast blame, that wouldn’t paint him into a corner of culpability.
I asked, “Do you have any help here?”
The son threw his hands up in despair, his expression darkened with anger. He answered between clenched teeth, “It’s just me. I’m it. I have a brother who lives in Texas and is married and has a life and doesn’t do shit.”
His mother’s moaning intensified, fidgeting restlessly more as he spoke about the burden of their care and his nonexistent social life.
“I’d like to have a life, too. I’d like to have a girlfriend, to get married. But I go to work and I take care of them. That’s it.” He looked me in the eye now. He removed his ball cap and rubbed his hand across his head.
“I’m doing the best I can. I’m trying, ya know?”
He told me about his demanding work schedule and how he started working the night shift in order to be home during the day. He suppressed his rage like a shaken soda bottle.
The son’s agitation was contagious. His mother approached the cot and teetered nervously over her helpless husband. She cooed repetitively, responding the call to nurture but unable to act.
The son barked, “Mother stop moaning! Just go back upstairs until we’re done.”
She turned to me and opened her mouth again for my inspection. Her son repeated angrily, “Mother, stop! Nothing is wrong with your mouth!”
I tried to calm him. I tried to reassure her. His mother shuffled away, loudly humming and wringing her hands.
“She never stops that. Never. Sometimes when I’m trying to slee she’ll come into my room and hover over me like that. She constantly moans. I can’t take it!”
Before I could respond, he continued. “I came home from work this morning and she had opened every can of cat food, like twenty cans. She thought was making dinner.” He teetered at the edge of tears. “And then I had to clean all that up and still go out and get more cat food.”
The son and I discussed the enormity of care required for his dad. The need for a hospital bed, a clean home, regular feedings, fluids, and changings, assistance at night, frequent medical check-ups. His mother’s needs, too, had long been neglected- understandably so in light of his father’s failure to thrive.
I validated his unspoken complaints, trying to offer him a shred of relief and comfort. I told him I had calls to make.
He grasped his head tightly and dropped his chin to his chest. Fatigue, desperation, and sadness fell as tears down his cheeks. My heart broke for this family as he acknowledged his failure as a hopeless caregiver of parents with chronic diseases.
He is not the failure.