My father's shadow

The story goes that my parents thought I was going to be a boy, something about how strong I kicked or my heart rate. My name was going to be Jason--Jay's son. I was born with red hair and blue eyes, just like my dad. But I wasn't a Jason. No matter. I still wanted to be just like him. 

I was my father's shadow. I thought he could do anything, build anything, fix anything. I remember at about age 4 being very angry with my mom because I wanted to marry him and she said he was already taken. Can you imagine?! How insensitive of her! ;) Instead, I grew up and married a Jason, who became a son to him. And Jason shadowed my dad, learning wiring and plumbing and patience. And then we had two kids who would squish into my dad's recliner like I used to and shadow him around the house. They would watch him in his workshop, help him fill the backyard bird feeders or fly kites at the beach with him. 

We are all so lucky he was ours to shadow. 

.. .-.. --- ...- . -.-- --- ..- -.. .- -..

(I love you, dad)

 

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.

What I didn't know about Alzheimer's

I knew it robs you of your memory. 

I didn't know it robs you of your strength.

I knew it steals your personality. 

I didn't know it steals your dignity.

I knew it destroys your brain. 

I didn't know it destroys your body.

I knew it leaves you without the power to speak. 

I didn't know it leaves your family powerless.

I knew there wouldn't be much I could do to help.
I didn't know it would make me feel so helpless.

I knew it would be hard to watch my dad succumb to it. 

I didn't know how hard.

It's My Turn

I show up to my parents' house to stay with my dad while my mom has her monthly support group meeting. She meets me at the door.  "You just missed the biggest mess ever.  You're going to need to help your dad finish getting dressed.  Don't worry, he's decent.  I left him putting on his socks."  I go into the bedroom.  My dad is on the edge of the bed with one sock on and no pants.  "Where's your other sock?"  He stares blankly.  "Can't be too far."  We look around, see no evidence of the missing sock.  "Maybe they're both on the same foot!"  Sure enough, he put one sock right over the other.  I take it off and put it on the other foot, then I put his feet through his pant legs.  "Okay, you gotta stand up so we can get your pants on."  My dad slowly rises and pulls his pants up to his waist.  I wait for a moment to see if he can manage the button and zipper, then I do it for him.  It's like dressing one of my children when they were toddlers, except it's my father.  I swallow the lump in my throat, put a smile on my face and lead him to the living room.

We watch TV for a little while, the only activity my dad is able to do, then I tell him we are going to go on an adventure to the bank and Starbucks.  I find his shoes and slip them on his feet and tell him it's time to go.  He looks at me blankly and doesn't move.  "Okay, we're going to head to the bank and then go get a treat at Starbucks!"  I say brightly.  Still nothing.  Finally I give his hands a tug and he stands up.  "It's not that cold out so you don't need a big coat, but we'll get you a jacket."  I put my dad's arms into his coat; he is only slightly more helpful than a mannequin would be, but I get him covered.

We head out to my car and I narrate along the way to fill the silence.  "Oh, look! The cherry trees are just starting to bloom. There goes another dump truck to that area they are clearing."  I open the door and my dad slowly, awkwardly folds himself into the car seat.  I lean over and do his seatbelt for him.  A month ago, he was able to buckle the seatbelt himself; now it is beyond him.  I provide a commentary as we drive to town.  My dad never says a word.

We arrive at the bank and I get him settled in a chair.  When my name is called, the bank employee sees me getting my dad and gets an extra chair ready for him at the desk.  In the few minutes we are there, my dad falls asleep sitting up.  When I am done, I joke, "Uh oh, I bored you to sleep!  Ready to go to Starbucks?"  The bank employee laughs and comments my dad can clearly use a caffeinated pick-me-up.  I smile at his joke, knowing there is no drink, no food, no anything that will help my dad anymore.

I carefully, slowly walk my dad back to the car and buckle him in again.  We arrive at the coffee shop and I hold his arm as we walk, reminding him to step up here, step down there. He doesn't see curbs anymore and I am always so afraid he is going to fall.  At one point he stumbles but catches himself.  He says, in his familiar voice, "I have a bad habit of forgetting to pick my feet up."  It's the first time he's spoken to me all day.

We get inside Starbucks and I list off his food and drink choices.  "There's cookies, donuts, or maybe you'd rather have a milkshake."  He doesn't respond. I try again.  He opens his mouth and tries to speak but the words won't come.  I rescue him.  "How about I surprise you?"  I order our drinks.

We sit quietly, my dad contentedly sipping his Frappuccino.  I fill the silence with more commentary.  I am struck by the fact that my father is now so much like my child.  I dress him, chatter to him, drag him on errands then reward him with a treat.  And I don't mind.  He spent half of his life caring for me.  It's my turn.

The last best day

Monday, January 7th was the kids' first day back at school after more than two weeks off.  My plan was to come home and bring the cat back to bed with me for an hour or so before I started cleaning the kitchen.  At our other house, he used to come to bed with me every morning after Jason got up, but that had not happened since we moved, and also happened less after he got arthritis.  I think the stairs at the new house didn't help, but it is also a pretty big jump to the bed, especially for a cat who may have been having heart problems.  So sometimes I'd carry him up to bed after he stopped coming on his own.  Several times I had brought Niles to bed like that, but he'd usually only stay an hour or less.  But this Monday morning, he stayed with me until it was time to get Bryce from the bus stop at noon, almost three hours, and I am pretty sure he would have stayed a lot longer.  He laid right next to me while I read and napped.  Just before I had to get up, I started petting him again and he rolled over and stuck his feet in the air so I could pet his fluffy belly.  (My mom has always said Niles has the softest fur of any cat she's ever known, and I think she was right.  Bryce would pet him and say, "He is soft as silk."  It was hard to walk by him and not stop to pet him, I think.)  It was pretty much my ideal morning, especially after two weeks of semi-chaos with the kids home.  I really wished I could stay there petting him all day, but I finally got up.  I carried him back downstairs and got him his lunch and then went to get Bryce.

The next day, I volunteered at school all morning.  Wednesday I used my morning to work out.  Thursday I was back at school to volunteer, so no cat snuggling time.  And Friday was when Niles really slowed down, slept all day under a chair and I didn't bother him.  Saturday I brought him up to our bed again, and he slept there most of the day, but not close to me like he had on Monday.  He crawled under the comforter and slept there, and I remember watching it move up and down to check if he was still breathing.  Sunday he slept most of the day and ate very little.  Hayden took her blanket and a bag of books and laid down by him in his current favorite spot, the corner between the couch and end table.  Monday the 14th was the beginning of the end.  I keep going back to Monday the 7th, before we knew something was wrong, when Niles still seemed to be happy and healthy.  It was the last best day.

Breaking

My heart is not broken.  It is breaking over and over and over again.  Every time I hear a click or tap and look over, thinking Niles is walking by.  Every time I see his empty food bowl.  Every time I notice just how empty the house is when I am here alone.  His favorite spot on the corner of the couch.  I used to joke that Niles' job was to pretty up the place, just sitting there looking charming.  And he did.  I smiled every time I would look over and see him sleeping.  There is something so peaceful about a cat curled up on the couch.  Nothing says "home" like a sleeping cat, purring even in his sleep.  Memories of Niles are everywhere.  Thinking of Bryce's toy cat collection (he has four different Niles cats in it).  Niles sleeping on Hayden's bed at night, or sleeping amongst her stuffed animals during the day and blending right in.  Niles responding with a meow when one of us said his name.  Memories everywhere, but Niles nowhere.  Tears everywhere.

In the morning

I am not a morning person. Never have been, not sure I ever will be. At least by choice. But quite often lately I am a morning person because my son forces me to be one. It gives me time alone with him, which is nice. And we see all sorts of things I'd miss if I were asleep. For instance this morning he spotted a hummingbird on the fuschia plant, the first we've seen in weeks. And we saw dozens of tiny birds (finches?) flying in waves from one tree to another, cheerfully twittering as they flew. We also got to see "our" squirrels out busily gathering food and I chased off a rogue cat who was harassing one squirrel. If I hadn't been awake, that rotten cat might have gotten dangerously close to our little puffy-tailed buddy.

Or worse, far worse, the idiotic blue jays woke me up AGAIN far earlier than my boy did. I went outside in my pajamas to chase them off the roof and got to feel the cool morning mist on my skin. After the days and days of dryness we've had, the feeling was almost indescribable. While I cannot be grateful to those idiotic birds for disturbing my rest, I am grateful for the coolness I felt.

I keep reading about the benefits of meditation and most of the examples I've read, the person meditates in the morning, before the rest of the house is awake. That is also a good time to exercise, to get it done and out of the way. But I still can't bring myself to set an alarm and get up any earlier than my kid alarm goes off. Often that is too early for me! Maybe someday. I wonder, though, if being up early, paying attention to nature, training my eyes to new flower buds and my ears to squirrels jumping from branch to branch or the birds making music in the trees, maybe that is almost like meditation. Turning off the endlessly looping to-do list in my head and tuning into the world around me. For now, it is as close to meditation as I am going to get.