Dementia Creeps In

Family, Ambushed - Part Three

Though these events happened over ten years ago, the memories stay with me as a reminder of what many others deal with as they try to help and understand the people they love who struggle with dementia.

My brother, Rob, who lives close to my parents’ house, is on an over-due vacation with his family, so I’m back in Delaware, to help Mom at home, and visiting Dad. It’s four months since Dad’s fall and his admission to the Rehab Center. His progress has been slow, and Mom is exhausted. This morning she’s sleeping in while I drive out to rehab to see Dad.

I walk into the center toting one bag full of laundered warm-up pants, polo shirts, pajamas, sandwiches, and cookies, and another carryall holding an electric razor, barber clippers, scissors, aftershave, and a couple of old sheets. I’m on a mission to make today better than yesterday.

Yesterday’s visit was hard. Recently removed head bandages revealed the physical and emotional pain has been coping with. His head and face are badly bruised; the left side of his head, which has been completely shaved, is covered with a huge scar; there are stitches above his right eye from an even more recent fall; and his skin is flaking off his neck, ears, and scalp. My mother and I were sitting with him when an aide came into the room with his meds, and he introduced us to her.

“This is Berna Deane and Frank,” he said smiling, “my mother and father.” At first, we thought he was joking around, but then the more we tried to correct him, the more adamant and agitated he became. He lurched up, suddenly wanting to go to the bathroom. As the aide and I slowly helped him in, he looked in the bathroom mirror and saw himself for the first time since the accident. “Oh my god,” he said, “I look like a mental patient.”

“No, no you don’t,” we said, but he did. I could tell from the look on the aide’s face she thought so too. That wasn’t right. This was Dr. Frank E. South, Ph.D., an internationally known scientist and WWII Ranger who cherishes his dignity. Of course, everybody in these places was somebody, no matter what their situation is now, but this is my father, damn it. I’m going to make sure he can at least recognize who he really is.

So today, I’ve come prepared. I’ve got one old sheet on the floor of his room and one around Dad’s neck. Though my intensity of purpose startles Dad at first, he’s cooperating, sitting up in his wheelchair, while I clip away, giving him a crew cut.

“Have you seen my mother?” he asks. Locks of white hair fall to his shoulders. Grandma’s been buried in Nebraska for years, but right now, that doesn’t matter.

“I think I saw her around somewhere,” I say.

“She’s probably at the bar,” he says.

“Probably so,” I say. Then, like a barber and customer in a small town, we both start to relax to the buzz of the clippers and snip of scissors. He picks up a strand of his hair and looks at it.

“It’s hard for me to remember things exactly,” he says. “I try so hard...”

“Uh huh,” I say, “Me too.”

“Really?” he says and puts the strand of white hair carefully on his sheet-covered knee.

“Yeah,” I say, “People’s names, places, objects -- the words sometimes just won’t come.”

“They hide,” he says.

“We’ve got to be patient, wait for one to peek its head around the corner, and then grab it,” I say, thinking of how, even as a writer, I struggle with language.

My dad nods and smiles. “Right, that’s it. You gotta grab quick,” he says. I brush dead skin and hair off his shoulders and start clipping the fine hair at the base of his neck.

As I finish his haircut, I notice Dad has tensed up again and seems anxious. I show him a notice I’d typed up to let potential caregivers know his family and relationship particulars, and centered in bold the fact that he is a WWII Ranger veteran, has a Ph.D., and was a prominent physiology professor and researcher. I’d also asked the doctors and aides to please call him “Dr. South,” as he was addressed throughout his professional life, to help him remember who he is.

Dad brushes the document to the floor with a disinterested grunt and turns away in his wheelchair, his shoulders scrunched up tight. I tape the notice above his bed and decide to play barber again, this time shaving my dad's face with his electric razor. This he accepts. As his shoulders drop some of their tension, he closes his eyes, smiles, and tilts his head back as I buzz his neck and chin.

“I brought some new polo shirts today that Mom got for you,” I say. “We’ll put one on before we go to lunch.”

“It makes me nervous, Trey,” he says, using my family nickname. It reassures me to hear that he knows who I am, that I’m his son.

“What does?” I ask.

“What do you think? All this fuss, my wedding,” he says.

“Dad, you’re already married...”

“Balls,” he says, irritated. “My mother bought me a shirt.”

I think if I can remind him gently that by mom, I mean my mother, not his; he might calm down and remember. “Your wife is Berna Deane, my mother...” My father pulls my hand with the razor away from his face and fixes me with a fierce look that burned into me every time he caught me lying as a kid.

“Stop it,” he hisses at me. “No more lies. I have to trust you, understand?”

I put the razor down, touching his face. “Yes, I understand. I do. You can trust me. I promise.”

“A man can’t marry his mother. It’s not right.” His point made, he relaxes and laughs, “And the Army would have one hell of a fit.”

I don’t know what to say to that. I understand losing track of things. My brain is unruly and uninterested in the day-to-day world. I forget the time, all the time, always have, and I’m often not sure what day it is. Words, numbers, and names of people and things vanish and reappear at will. But even so, I know who and where I am when I wake up in the morning.

With Dad smiling at me as I put away the razor and help him into his new polo shirt, I realize that that’s no longer the case for my father. For him, confusion has grown in his brain like a hungry jungle choking off every thought he has and everything he sees and feels with a terrifying and unrelenting uncertainty. It has taken complete control and distorts and breaks the past and present into unglued bits that fall away, then reform, shift, and fall away again, just out of sight.

Dad’s mood shifts again as we roll toward the dining room. “You need to get me out of here, Trey,” he says. “This is a mental hospital.”

“It’s only until you’re better,” I say. “A little while longer.”

“Let’s go home now,” he says. “I don’t belong with these people.”

“Soon...”

“Now,” Dad says in his most commanding voice. “Get my things and take me home.”

I step around to the front of the wheelchair and get on one knee to face him. “I’m sorry, Dad, I can’t. Not yet.” He looks at me. His fierce, angry eyes soften with understanding. He pats my hand.

“Don’t worry,” he says. “I understand.” I smile, relieved. He smiles back and says, “We need passports.”

The doctors and therapists tell us that recovery takes time and that with help, Dad has a chance to come back to the rest of us in the real world. But as I see him exhaust himself, chopping through shadows until he finds a clearing where he can rest, where his life finally holds still and makes sense for a minute, whether it’s 1943, 1963, 1983 or some paste-up of time and place that only makes sense to him -- I realize I shouldn’t explain to him that he must be confused. Not every time. It’s just not right.

Dad leans forward, energized. “This piss-ant ship sails on the tide and if we don’t have passports, we’re stuck. You need to get on this right away. We must get back home. I’m good and sick of Europe. How about you?”

“I never liked it that much in the first place,” I say.

“Right, too many Europeans,” he says. “Nothing they say makes sense. You better get a move on and see what can be done about our papers."

I stand to leave. An aide approaches to roll him the rest of the way to the dining room. “Will do,” I say. “Don’t worry, though. We’ll get back home soon.”

The aide is just a few steps away as Dad turns to her and says in an odd French accent, “Mademoiselle, un petit moment.” She stops and he looks back at me with a conspiratorial wink. “I know we will, son,” he says. “I trust you.”

Even though my ADHD-related problems are insignificant compared to his, we develop a father-son confusion connection as the days and visits roll on, bewildered buddies rolling our eyes at the clearly unhinged world around us. We both treasure that trust between us. I believe it gives my dad some strength for his constant struggle to slowly regain his mental footing. But it’s a trust that’s fleeting in our imaginary world, and just by keeping one foot in the real world as his advocate, it’s a trust I will soon betray.

From my memoir, A Chicken in the Wind and How He Grew.

A version of this story was first published in ADDitudemag.com.