The Notebook is a Lie

I knew Alzheimer's meant losing your memory.  I knew there would come a day when my dad would stop recognizing me, and I knew that would be a knife in the heart, but I was mentally prepared for it.  What I didn't know is that I would stop recognizing my dad.

In The Notebook, Allie is in a memory care center, and she doesn't recognize her own husband anymore.  That much is true-to-life.  But Allie still looks beautiful and put together--like herself.  In reality, Alzheimer's causes physical changes along with the mental ones, and the younger a person is when he is diagnosed, the more rapidly the disease progresses.  I learned this the hard way.  Long before my dad got to the point we could no longer care for him at home, he stopped looking like himself.  He rapidly lost weight; his clothes hung off him.  His motor skills started to deteriorate, so he sometimes had food stains on his clothing, or his face.  The glasses he had needed almost his entire life suddenly started to bother him, so he would remove them (and often lose them, another common problem, misplacing things).  He didn't look like my dad anymore, and I didn't know to expect that.  It was hard to see.

Harder than watching the physical changes was standing by helplessly watching his mind being taken away from him.  I remember being at my parents' house the year after my dad was diagnosed, and he asked me to help him with something on his computer.  My dad had built this computer, and dozens of other computers over the years, but he couldn't remember how to increase the font size to print a shipping label.  I told him and showed him and wrote it down in case he needed to to do it again.  He was thankful for my help, but so upset with himself.  He said to me, clearly frustrated, "Everything I touch turns to shit."  He seemed so dejected, someone who had been able to solve difficult technical problems in a blink and now couldn't remember how to use a simple word processing program.  It hurt my heart and I just wanted to make him feel better.  I assured him that no, things were not that bad, and we moved on to something else.

Later after he'd gone to bed, I relayed the story to my mom, and that I'd reassured him he was okay.  My mom shook her head sadly and told me things were indeed that bad.  My dad would try to do something on his computer and end up moving programs around and deleting shortcuts and making a mess of things.  One of his friends, who my dad had helped with computer problems numerous times in years past, would come over and get everything set up right again. Then my dad would try to use the computer again and the cycle would repeat.  For someone who had always been so incredibly sharp mentally, this must have been excruciating.  And there was nothing we could to do help.

In The Notebook, not only does Allie still look beautiful, she has moments of clarity where her memory suddenly comes back (when Noah is reading her their story) and she recognizes her husband.  All is right with the world, if only for a moment.  When my dad was first moved to memory care, he still knew me, or at least knew I was a friendly face. We were asked not to visit the care center for the first week or so, to allow him time to get adjusted. When we were finally able to see him, he was amazed when my family came walking through the door. His eyes got wide and he said, baffled, "How did you find me here?!" I told him we were keeping track of him. He said, shaking his head, "I know--probably a bunch of gabby women." I kept a straight face then, but later when I told the story to my mom, we laughed and laughed.  It was funny, but more than that, it sounded like something my dad would really say.  It was one of the last times I remember him sounding like himself.

As time went on, it was clear my dad no longer knew who I was.  He would still smile and be polite, let me sit with him and ramble on about my kids or school, or sit next to him and watch TV. But I had become a stranger to him.  I wanted SO BADLY for my dad to have one of those flashes of recognition, to suddenly sit up and look me in the eye and say, "Melissa? Is that you?"  I could just see it in my mind's eye.  My eyes would fill with tears and I'd hug him and I'd have my dad back, if only for a moment.  It happened in The Notebook, so maybe it would happen for me.  I'd sit and talk to him for hours, show him photos of us, of himself, but there was nothing.  NOTHING.  Not even a spark.  The Notebook lied to me.  One of my dad's pat sayings the last few years was, "I don't recall that."  It was his polite way of saying that particular memory was gone, along with so many others, and he really had no idea what or who we were talking about. Pretty soon, what he remembered was almost nonexistent in comparison to what he didn't "recall."  We were losing him. 

Despite this, I kept trying to comfort him by bringing him glimpses of his former life.  My husband made me a CD of the music I remember my dad listening to when I was a child, groups like The Cars, The Pointer Sisters, KC and the Sunshine Band. I'd put it on and sit with him, or turn it on for him when I was leaving the care center for the night.  I found videos on YouTube of ham radio field days.  I would sit next to him on his bed and turn up the volume on my phone and we would both listen to the sounds of my childhood, the da-da-dit-dit-dit sound of Morse code, the call signs, the radio static.  I found videos of ham shack tours, men that looked and sounded so much like my dad it took my breath away, and I played those, too.  I played him the sound of the teletype over and over. I found reviews of handheld ham radios and played those.  I played anything I could think of that he might remember.  Never once was there even a glimmer of recognition. Not ONCE.  But I hoped that even if he didn't understand what he was hearing, there was a part of his mind that did, and that it dulled the pain and calmed him.  I think I also did it for selfish reasons; it made me feel less helpless.

In the library where I work, there is, for reasons I cannot explain, a skeleton who is dressed up for different holidays and events, Dewey.  Last month the plan was to put Dewey in the rocking chair, sitting by a (paper) fire, reading cozily.  Someone sent in pajamas for him to wear so he could be extra comfy-looking.  One of my coworkers got Dewey all dressed and then I helped to position him in front of the fire. When I touched Dewey's skeleton legs in the donated pajamas, all of the wind was knocked out of me and I dropped to my knees.  It was just like trying to help adjust my dad in his hospital bed.  He was skeletal those last few months.  There was nothing left of him, inside or outside.  Allie in The Notebook was still full and healthy-looking.  My dad looked more like a concentration camp victim.  Once again, The Notebook lied to me.

At first, I was bitter about this, and angry with Nicholas Sparks for misleading me.  How dare he?!  How many people have been disillusioned because of this story?  The nerve!  But I have come to realize that his book, and the subsequent movie, were a blessing. The idea that one day my dad might have a flash of recognition, might see my face and remember who I am, gave me hope. So I never stopped visiting.  I never stopped talking to him, playing him music, trying to find him new videos to watch.  In fact, I was with him the night he died, playing ham radio videos and holding his hand.  In that regard, The Notebook was truthful.  We never gave up on my dad.  And just like Noah was there until the end, so were we.  Those difficult days and hours the last few months were made that much less painful because at least we were together.  That is how it was for Noah.  Nicholas Sparks got that part exactly right.  I never stopped loving my dad. And I never will.

My dad gripping my hand with both of his one of our last nights together.