Stages

For a while, my father was in an amiable stage. He seemed to enjoy our visits. We walked with him outside. We read Curious George and National Geographic magazines together. We took rides in the car. It was a good stage.

But it's over.

I arrived early and peered through the glass panel in the security door. I saw him immediately, walking the length of the ward. At each half door, he stopped and tried the handle, shaking, twisting, trying to wrench the door open. After a time, he moved on, walking jerkily like a zombie from Invasion of the Body Snatchers.

I stepped inside and pulled the door closed behind me. He looked right at me but didn't see me. I was about to approach him when Reggie, one of the day aides, touched my arm. "Don't maybe interrupt him." His voice was gentle. "He is uneasy all the time. Better to let him fuss for now." Fuss. That was a good description of my father's behavior.

I moved to the key panel, feeling the panic rise as always. What was the code? I punched the numbers, stifling a sob: I didn't get to kiss him! I didn't even get to say my favorite words of all - "Hi Dad."

The unlock tone sounded and I saw my father move with sudden focus. He crouched, lowered his right shoulder, tucked his chin, and sent out a singular jab with his right fist. Like a boxer, I thought, staring. Reggie moved quickly, but could not escape the fist completely. It caught him on the back, just under his ribs. I slipped out, securing the door.

This stage is going to be hard. This stage demands that he be left alone, cut off from us, inside that ward, with only the sounds of dementia to keep him company.

Sometimes I think I will not survive the sadness.

Not Yet.

My father is having trouble with his gait. He doesn't shuffle; rather the toe of his sneaker catches on the floor with each step causing him to lurch. The aide walks next to him, holding on to the wide canvas belt knotted around his waist.

"He's a fall risk," the nurse reported to me this morning. "He should not be walking around without a helmet."

A helmet? I don't know if I could handle seeing my father in a helmet. I watched him stumble.

"Dad!" I shouted at him. He froze in space - I'd scared him. "Dad." I said, softer now and patting the chair next to me. "Dad. Come and sit next to me." The aide maneuvered him to the seat, sliding him close to the table. "I brought a surprise for you." I tore open the small bag of peanut M&Ms and leaned in close. "Don't tell anyone," I said. "It's a secret." I put an M&M in the palm on my hand and held it out.

He stared at it.

"It's candy," I said. "You like it. Try one."

He pressed the M&M with his thumb, mashing it into my skin. "No Dad, it's food. Look. You eat it." I held out another M&M, only this time, I held it to his lips. He sucked it in, chewing with great concentration. "Good?" He nodded. One by one, I handed him a candy and watched him pop it into his mouth.

Behind my father, Mr. Lentin was strapped into a wheelchair, held erect by a thick harness that encircled his torso like a straight jacket. He shook the table that barricaded him in to a corner. He pushed at the table, sliding it this way and that. With every shove, he grunted. His head was encased in an oversized grey helmet that snapped under his chin. He looked like one of those bobbleheads on a taxicab's dashboard.

I'd been distracted by Mr. Lentin's attempt to escape his enclosure. When I looked at my father, I saw he was eating the tab I'd torn away from the bag of candy. I pulled it from his lips. I laughed, and then he laughed, and I saw his silver hair shimmer in the harsh florescent lighting. Even now, he has such beautiful hair.

No. My father does not need a helmet.

Yet.

The Other Guy

The other guy is dying. He'd had a parallel experience to my father's: laborious decline into dementia, a stint in a psych hospital and then, the dementia ward. Like my father, he was combative and aggressive. Like my father, he had a strong and healthy body. The wife was bereft. We'd stood together in the hall, the wife, my mother and I, listening to his sputtering rage. We huddled in the lobby. We compared. We commiserated. We held hands.

Now they've called in hospice. His body is trapped under a belt, his wrists strapped to the bed rails. The medication has reduced him to silence.

"How're you doing, Mr. Hale?" I shout into his room as my father and I pass by. My father walks with a staggered gait, a ghost in orthopedic sneakers. Our elbows are linked; I clench his arm to my side. He is not dying.

How're you doing? What a stupid question.

Don't Pick Up That Phone!

He bit someone. My father bit someone. The man known throughout his professional life as "creampuff bob" bit an aide on the arm. It was an unprovoked bite; he wasn't angry or defensive. Like a shark nibbling on bait, he simply sank his teeth into any arm that presented itself. The aide was taken to the clinic and my father was given a sedative.

The nursing home is required to report violent behavior, so my phone rang soon after nine. "Your father had an event," the nurse started. An event. That's what they call everything. Like they're having a party or something. I wish they didn't call me. I wish I didn't know anything. I prefer my original perception of my father. I prefer thinking about him as funny and inspiring, thought-provoking, challenging and intellectual and witty. I am trying so hard to remember him like that. But then, the phone rings.

Happy Birthday

I arrived at the nursing home with a cupcake and candle, and two pointed party hats. My father was sitting outside in the shade, staring at the parking lot. I crouched in front of him and slid the hat's elastic strap under his chin.
"Dad, guess what? It's my birthday. I'm fifty today." I put on my own matching hat.
He scowled at me, or through me.
"Fifty years ago, you were in the Air Force and Mom's doctor wanted to play golf, so he induced her."
My father's pale eyes found mine. "He did?"
"Yes. There was a tornado that day and everyone was terrified. Do you remember? In Sherman Texas. Perrin Air Force Base."
"I was carry corry carry curry..." his voice stuttered over the repeated sounds.
"You were a captain," I said, placing the cupcake in front of of him. I put the candle into the stiff chocolate frosting and reached for my lighter. When I turned back, he had frosting on his palm and the cupcake was gone.
"Where is the cupcake?"
His pant leg was streaked with frosting.
"Dad. What did you do?" I stood over him. There was a blob of chocolate frosting on his waistband. "Did you put the cupcake into your pocket?"
"Four. Nine. Three and sixteen." He sat still as I felt around his legs and back. The aide came to take him back inside.
"There might be something sticky in his pocket," I said. As they walked away, I snatched off his party hat. It was a ridiculous idea, like dressing your dog for Halloween. I realized, I had stolen some of his dignity. My throat burned with dismay.

I would never, ever do that again.

That Kind of Day

I'm gearing up to visit my father. In order to go into the dementia ward, I have to prepare myself for what I might see. Best case: he's sitting quietly or walking in the main room with the other residents. Worst case: well, it's hard to pick a single scenario. Once, I arrived to find him in a rage hoisting a heavy upholstered chair over his head, intending to throw it through the window. Another time, I found him pinned to the wall, with three security guards jostling to control his flailing fists. At the other extreme, I'm exceedingly distressed when he is slouched in a chair, near catatonic, drooling and non responsive, numb from the anti-agitation medication that he undoubtedly required. There are so many hideous visuals: images that torment me during the night so that my jaw aches when I wake from clenching my teeth.

I start by coaching myself: Today may be different. Today my father might smile upon my arrival and offer me his hand. "Nice to meet you," he'll say. And I'll shake his hand and introduce myself.

I hope today is that kind of day.

Run Away! Run Away!

Before nine this morning I had three phone calls. The nurse from the dementia ward called to report that my father bit someone and would be medicated and in restraints. The head of the agency providing private aides called to inform me that they are terminating our contract in 48 hours due to "failure to meet the unreasonable expectations" of my mother. My mother called to say that the nurses/aides/staff don't know how to handle my father. She was en route to the home at the time, letter of complaint in hand, unaware for the moment of the above developments.

I am running away from home.

Expelled!

The nursing home is threatening to throw my father out. He is acclimated, content and easily managed. He has 24 hour private aides who keep him company and hold his hand while he paces. He has no medical issues, no special needs. So what's the problem? It's my mother!

In her quest to make his last days (more likely, years) pleasant, she has alienated everyone who cares for him.
Don't let him sit in his room
Don't put him in front of the television
Don't give him tuna sandwiches more than once a week
Don't talk to him like that
Don't walk too close/too far from him
Don't feed him
Don't let him go without eating
Don't
Don't
Don't

The nursing staff scatters when my mother arrives, like fish sensing a predator in the water, they flee. The aides who sit with my father ask to be reassigned. The administrator calls ME to express his dismay: "We cannot satisfy your mother." I guess she wrote one too many letter of complaint, left one too many phone messages and emails. Now what?

Now what?

Sniff, Sob

I walked into my father's room with my usual cheery call "Anyone home?" He was standing at the window, fiddling with the lever. He loves levers and latches and knobs. When I was young, he was forever fixing things around the house, puttering with the tools. He loved gadgets and kits. He built a radio and a microwave oven. He built an off-road motorbike and a Bradley GT - a jazzy fiberglass sports car constructed around a VW chassis. His favorite tool now is a Fisher Price toy key ring with giant keys in primary colored plastic.

When I came in, he dropped the plastic key chain and came quickly toward me. I am careful not to touch him without his permission - he is easily startled and often frightened. But this time, he held out his arms for a hug. I wrapped my arms around my father's shoulders and felt his head lower and press into my neck. Then I heard the unmistakable sound of crying. My father was crying.

The aide hovered near the window, giving us privacy. When he saw my anguished expression, he came closer. "He cries a lot now," the aide said. I held him tightly. His whole body sobbed, sobbed against me. The sound was awful! I held my breath, willing him to stop; my heart wrenched with his every moan.

"Mostly he cries when he's happy," the aide said softly.

As if that makes it easier.

My mother's entire life now is devoted to cheering up my father. Yesterday when he was glum, she brought him to the apartment for brisket and a change of scenery. It perked him up and she felt successful. She’ll try to do the same thing today. Truth is, he is much more engaged when he is not parked in that home staring at a wall. She feels it’s her job to keep him perky and happy. And she does, most of the time. I don’t fault her for that. She is showing him a “good time” sort of.

But what about her?

Guilt Fest

I've been lying to my mother. I can't help it. It's a matter of survival. She asks me the same question constantly: "Did you see your father today?" When I say "no" she exhales loud enough to hear it thru the phone. That sound kills me. It's worse than the mother-of-a-teenager sigh, I'm so disappointed in you. I can't stand it.

And so I lie. I lie and tell her I looked in on him at 2 or during lunch or on my way home from work. I tell her that he was fine, sleeping, starting at the tv... It makes her feel good somehow, and he doesn't know who I am. He doesn't react at all when I walk in there. So what's the harm in a little lie?

She says that we cannot abandon my father just because he has brain damage. He deserves better. He does.

I'm dying of guilt.

Anyone reading?

I know you're out there. I see you hovered in the halls of the hospitals, in the doctors' buildings, in the hospitals. We all look the same, families of dementia patients. We are hunched and frowning, embarrassed and confused. Some of us laugh. Some of us grit our teeth so tightly our jaw muscles twitch with tension. We can be found standing outside the building, on the side, out of sight, sobbing. We rarely cry on site. Mostly we stare with wide eyes and pressed lips. I see you. Do you see me??

Fear and Laughing - From the NY Times Magazine

Our worst fear has recently come to pass: the dementia ward of the veterans’ home where my father had been living transferred him to a psychiatric hospital. But when I met my mother there on the day they brought him over, I wasn’t really surprised to see her waving from across the hall with a big smile on her face, about to laugh. We’re a family of laughers. We laugh when we’re happy, when we’re angry and, most of all, when we’re frightened.

“That’s him,” she said, chortling and pointing to the ambulance in the bay. “He just arrived, and he’s mad as a wet hen. But the ambulance driver said he didn’t slug anyone, so that’s an improvement.”

They wheeled my father up. “Hi, Dad.” I touched his hand, which was locked down under a thick restraining belt. His sweat pants were stained with food; the socks on his feet twisted and wrong. He looked at me through the blue eyes I’ve been looking into for 49 years. I smiled at him, and winked. He winked back. He is 75 and in perfect health if you don’t count his brain. He’s had dementia for a few years, but things got worse after an adverse drug reaction.

They pulled the gurney away. “We’ll meet you inside!” I yelled. My father craned his neck and answered: “Two. Four. Seventeen!”

My mother and I followed someone into the admitting office to do the paperwork. “We brought his medical records,” I told the nurse, reaching across the desk to where my mother sat, stalwart. I wiggled my fingers for the papers, but my mother only glared at me.

“Mom. Pass me the records.”

She shook her head.

The nurse moved away, ostensibly to retrieve a form. I leaned toward my mother. “What are you doing?” My mother gripped her purse with two hands. “I don’t want them to have a bad impression of your father,” she said. I reached for her purse. She held tight. I pulled. “We probably shouldn’t have an altercation,” I said, pausing. “It might look bad.”

My mother smiled. Look bad? We were in a mental hospital. Who cared? We both began to laugh, gently at first, and then with increasing gusto. By the time the nurse returned, it took all of our shared strength to stop.

The nurse handed us an information sheet. “This is the number of the telephone on the ward,” she said, pointing with her pencil. “Call this number anytime and ask to speak with your husband,” she explained, looking kindly at my mother.

Later we sat with my father on the ward, trying not to cry. For months, professionals had been saying that he’d probably need to go to the psychiatric hospital. But we’d closed our minds to that possibility. My mother declared she would not survive it. And now here we were.

We sat on either side of him, distracting ourselves with his food tray. I cut up the chicken and put the loaded fork into my father’s hand. My leg bounced off his — something was there. “There’s something in Dad’s pocket,” I informed my mother. “Put your hand in there and pull it out, will you?”

She crossed her eyes. “I’m not doing it. You do it.”

I held my breath and reached in — and then extracted a brightly colored, stuffed bowling pin. I held it up and met my mother’s disbelieving stare. That did it; we collapsed into gales of wrenching laughter again, hiding behind our hands and lowering our heads into our collars. “Stop,” my mother begged with her eyes flooding tears. “Stop, or they won’t let us out!”

I got up and walked away, wiping my eyes. I imagined I looked like every other visitor, splotchy with emotion and bereavement. When I regained my composure, I returned to the table. My mother had stepped into the bathroom; my father was eating his napkin.

Soon it was time to leave him there. As we waited to be escorted through the double-locked doors, the hall phone began to ring. A woman appeared wearing a long purple sweater and opera-length pearls. She picked up the phone and began to speak gibberish with a Slavic accent. She chattered, listened and then hung up. As she walked away, we saw that she was naked from the waist down.

My mother’s eyes widened. “That’s who answers the hall phone?” she blurted.

The security guard appeared and escorted us through the maze of doors and foyers until we met with the cool air. “Call anytime!” my mother squealed, bending at the waist with her arms crossed over herself. By the time we walked across the parking lot, we were laughing so hard our faces were slick with tears.

from the dunkersloot

When I first arrive at the home, I see my father. My father. The look of him makes my chest feel warm. God I love him. Only a few seconds pass before I notice that he is no longer the father I know. This is my father's body, but he is not inside. This man has vacant eyes and a slack expression. This man moves his head in a random manner as if it's slightly out of his control. It hurts my throat to admit that he is not in there. I miss him. I miss his humor and his banter. Today, I asked him if he knew who I was and he responded "certainly." Certainly is a word he used throughout his life. Did you read my report card? Certainly. Do you want a slice of cake? Certainly.

Today, after he admitted his certainty, he said "you're a dunkersloot!"

he recognizes you

I stopped in at the nursing home on my way from work and found my mother standing at the window and dancing to a CD of Mamma Mia; my father was asleep in the chair. My mother talked to him as if he was there: "Wow Robert do you hear that syncopation?" and "Isn't this music great?" I sat on the couch and slumped in my coat. The scene was familiar. My mother spent most of her day in the nursing home, trying to get my father to notice something.

He opened his eyes. "Sing with me!" my mother yelled, waving her hand as if hailing a bus. My father stared at her thru watery eyes for a long time, as if unsure of what he was seeing. She pointed at me. "Lisa is here," she said, still dancing. "Look Robert. Lisa is visiting. Isn't that nice. Look. See? There's Lisa." and on and on and on. Eventually, his eyes roamed to my part of the room. "See!" My mother was gleeful. "See, Lisa? He recognizes you!"

Recognized me?

any response is a good response

I told my father that the article I wrote about him in the New York Times Magazine generated lots of interest in my work, including a potential book contract. "Dad," I said, holding his limp hand, "they want me to write a book about you."

He said, "Fuck it" which, in dementia-speak means, how great.

At least I think that's what it means.

The Boarder

My mother is living with me now. She came to stay when my father was admitted to a specialty hospital near my home. Her home, the house she shared with my father for 39 years, the house where my sisters and I grew up, is eight hours away by car, on Long Island. The specialty hospital is in Baltimore, just over an hour from my home, so it made sense that she would live here during his incarceration. It worked out well. She commuted to the hospital every day, sitting with my father in the psych ward, avoiding the other inmates and getting to know the aides and security guards. At night, we drank wine and she shared the sagas of the staff. The security guard fled the Ivory Coast when his father was imprisoned for selling goats to a dissident. The day aide, named Sunshine, lived with three other families in Baltimore, working twelve hour shifts six days a week. My mother was entranced by their stories. I suppose it took her mind off the reality of my father’s illness, or perhaps she’s just a busybody. I still don’t know.

We have taken to calling her: the Boarder. She likes that.

Let's Complain

Someone said I should write this down, so others in my situation could share and laugh about surviving the nightmare known as dementia. My father was diagnosed with frontal lobe dementia four years ago. It's not Alzheimer's disease. We don't have a book or a clinic. What we have is an endless, mysterious condition that has no cause and no prognosis, no time line and no guild lines. We are on our own.

Long time ago, I had a friend with a terrible cancer. She taught me a game she learned in her cancer support group called Let's Complain. The rules are thus: players take turns listing their complaints. This must be a list of items, not stories, that irk them. No explanations. No defensive postures. Just gripes. The other players can only listen. It's not that easy. Listeners may not offer advice, suggestion or solution. Also, nothing mentioned in Let's Complain can ever be revisited later, as in "whatever happened to...?" The game is a mode of airing out, of carrying on, of, well, complaining. Let's Complain helped my friend voice her petty grievances. "Even dying people have minor daily irritations," she said. She died before we really got into the game.

Let's Complain does not work for me because my father is not dying. In fact he's healthier than he ever was. He is robust. That's a nursing home word. Robust. I hate that word. The staff psychiatrist at the nursing home reported that my father can easily live another ten years. TEN YEARS!

Since complaining won't work, I'll just share and describe. Share and describe how my father picked up a clump of black-dirty snow on our last walk and popped it into his mouth before I could intervene. How he pushed a plastic knife up into his nose - we think, to relieve an itch. Maybe this will help me release some angst. Maybe it will help someone else out there. If so, let me know. I can use all the good news I can get.