Tuesday, March 23, 2010

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?

Thursday, March 11, 2010

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.

Tuesday, March 9, 2010

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.

Sunday, March 7, 2010

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.