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The Shadow Man: Alzheimer’s and the Man Dad Still Is

But before he does, I’m going to put up one heck of a fight. I’m talking about a knock-down, dragged-out, kicking and screaming kinda battle. I am going to pester the physicians and the kind-hearted nurses that take care of him at The Inn (his term for the nursing home he lives in, where he does his slow-dance with Alzheimer’s and vascular dementia,) with all my might to make sure they are on top of his care, that he is given as much stimulation, physical therapy, social interaction and attention they can muster.

In short, I’m going to be a pain.

I’m really sorry about that, but he’s my dad. And I’m not going to give up on him just yet.

I’m going to hang out at The Inn, and strike up random conversations with the people who are on his Caregiver-watch for the day. The nurses, the aides, the housekeeping staff. I am going to do my best to educate them, in every way, about my dad.

When they look at my dad, what they may see is a tired, old man in a wheelchair, with heavy eyes and slouching shoulders who tries his darndest to remember their names, but masks his embarrassment by simply calling everyone, “Dear.”

But this man that they see, is not who I see. No. Not at all.

I’m going to take every chance I get to remind them that my dad was once a vibrant, dynamic and hysterically funny man who kept everyone on their toes. He still has days where this shines through, though those days are becoming less frequent.

I’m going to tell them all about my childhood and bore them to death with the details. I’ll tell them about that time when I would have slumber parties on Saturday nights in junior high, and my dad would rig up his old movie projector in the family room, and comb through his archives of silent monster movies like “The Mummy” and “The Wolfman,” to the shrieking delight of my popcorn-eating pals. He would put on his best “movie voice” to introduce the features, and then leave us all with the parting words said in his most dramatic voice, “Don’t worry, I’m sure you’ll all be safe down here. We have very strong locks on the windows…” My friends would stare at him, wide-eyed, and then we’d all dissolve into nervous laughter after he left.

I’ll also tell them about the times we’d go out to eat at a restaurant as a family. At the end of the meal, when the waitress would come up and ask her predictable question, “Was everything okay with your meal?” my father would steal a quick glance at her name badge and reply without hesitation, “Marie? The food was almost as good as the service!” Then he would smile while she would giggle demurely, with the satisfaction of another well-worn line doing its job. (I must admit, that line has served me well, many times since then.)

I’m going to remind the nurses that at every opportunity I could remember, my father would always sing the praises of my mother, his beautiful bride of 62 years to just about anyone who would listen. I still can recall when I was in sixth grade, when my dad and I would be sitting in the car in our driveway ready to head to weekly mass. My mother was rather notorious for running late, and we’d be waiting for what seemed like hours until we would eventually see the front door open and my mother hurriedly rushing out the door.

My dad would watch her walk down the front steps, his gaze never breaking, as if he was seeing her for the very first time. Then he’d turn to me in the back seat, and say, “Isn’t your mother the most beautiful woman in the world?” I remember I would roll my eyes in embarrassment and respond, “Sure, dad.”

And I will remind his caregivers of the time I came home from college for the weekend during my junior year. My school was only a short hour away, but it felt like I had been gone an eternity. I walked in the door, dirty laundry in tow, and heard the familiar booming voice of my dad, talking animatedly. Instantly I realized he was on the phone, as he had his polite, and charismatic voice on.

I put down my laundry basket and sat down on the couch behind him, and soaked in the sights and sounds of our family room. He had his back to me and didn’t know I was there, as he leaned against our out-of-tune piano with the phone perched on his ear. I listened to his side of the conversation and it became clear to me that he must be talking to a dear, old friend.

I heard him say into the receiver, “Well, Karen, I can understand that must have been quite a shock to you,” followed by, “Well, what a life-lesson that was!” I coughed and he turned in surprise to see me, his face lighting up like a Christmas tree. He motioned to me with his finger up as if to say, “One minute!” Then he spoke again preparing his conversation dismount: “Well, listen, I’m so glad to hear all is well. I wish you all the best.” Then he said his goodbye and hung up the phone.

“Teresa, my love!” he exclaimed brightly, as he bounded over to give me a hug. After I hugged him back, casually I asked him, “Who were you talking to?”

He responded, “Huh? Oh…that was a wrong number.”

True story. My dad befriended a total stranger on the phone who had called the house by mistake, and in the span of only minutes, learned their entire life story.

The funny thing about that moment? I remember just taking it in stride.

That is, after all, my dad.

This past Saturday, I found myself in-between my daughter’s soccer games with some time to kill. My youngest daughter just finished hers and I had a full hour before my older daughter’s game began. My husband was taking the girls to Dunkin Donuts and since I had taken my own car, I thought I’d go visit my dad.

When I stepped off the elevator on the third floor, I found him in his wheelchair, at the nurses station, as they were giving him his morning medication. He looked tired and not quite himself. A bit disheveled. His eyesight is now starting to fade so I put my face up close to him and said brightly, “Hey, Daddy-O!” He smiled politely but it took a minute to register who I was.

Oh. I could tell immediately it was one of those days.

He took my hand and I saw fear in his eyes. “Honey…please…can you tell me where I am?” I looked at him and in an instant I felt myself switch over from being his daughter to feeling like he was my child. “Dad,” I said reassuringly. “You’re at The Inn. This is where you have lived for 7 years. They take such good care of you here!”

He looked at me with great confusion. “Honest?” he said. “Are you telling me the truth?” I rubbed his back as his aide told me, “He’s a little out of sorts this morning.”

We wheeled him over to the dining area so he could have his breakfast. I saw the elevator open and my mother stepped out on her way to visit him, too. She was surprised to see me as we don’t often time our visits together. I walked over to her and whispered, “He’s having a bad day.” She looked at me and instantly knew what I meant.

“Oh. OK.” she said.

We walked over to the table where they wheeled my dad for breakfast. “I’m sure he’ll feel better after he eats,” I reassured her.

My dad took one look at my mom and instead of feeling instantly at ease when he saw her, took her hand and said, “Barbie? Why don’t I live at that house where we used to live?” She replied, “Honey, we moved out of that house a long time ago. You live here, now.”

My dad stared at her, trying to process the information. Then he looked at me, then back at my mom, and said,

“Am I in the middle of a nightmare?”

His words stopped me in my tracks. As heart wrenching as they were to hear, those words were also fascinating to me. What an amazing description of what it must feel like. He actually had that moment of clarity – in the midst of total confusion – that things were not making any sense.

And he was scared.

We just sat there with my dad, as he drank his orange juice and began to eat his scrambled eggs. There wasn’t a lot to say after that, except to just be with him.

My dad’s illness is like a slow-dance into the shadows. He’s still a lovable, sweet man, but more and more frequently, we are seeing days where we lose him into darkness.

But each day is still a gift. After all, he is here with us.

And each day that I see him, whether its a good day and he’s laughing and flirting with the nurses, or it’s a bad day and we sit while smiling politely at each other, I will remember the man he was.

And still is.

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