December 28, 2009 – THE BOOK IS HERE! THE BOOK IS HERE!!

12/28/2009

(REAL-TIME ENTRY)

I haven’t written in a full week because I wanted to be PRESENT for every little moment of Christmastime.  My camera has been rolling regularly, but to close myself off for hours in the office to type was just too much time with Mom and Dad for me to sacrifice.  There is a fine line of truly living in the moment versus trying to document everything.  I chose to be where I thought I belonged this week.

Dec. 23 was our annual Firek Xmas with Dad’s family: his two local brothers, my six cousins plus their kids, spouses, and my immediate family.  It was meaningful for everyone to have Dad present, and I found it beautiful that everyone wanted to know how to meet him best on his terms: if it was okay to hug him, talk to him, etc.  I told them to walk up to him, give him a big hug like usual, and include something like, “Hi, Uncle Frank, it’s me, Jason!”  Just like when interacting with someone with a physical impairment, I find that the stigma associated with this disease is that if people don’t understand the degradation or aren’t comfortable redefining their interactions, then they’ll probably just ignore the person.  And that’s about the worst thing that could happen.  My dad still loves people, and socializing, and hugging and touching!  Bring it on!  Make him smile!!

The climax of our Dec. 23 celebration was the gift-giving and Mom helping Dad deliver his annual Twas the Night Before Christmas poem to the crowd.  Much like how you can sing along effortlessly to a song on the radio but could never remember all the words on your own, Dad kept in time with the lines as Mom recited them with him.  If she paused, Dad would quickly get stuck and wait for her.  And he wasn’t addressing the crowd like the age-old performer he is; instead, he was looking into Mom’s eyes as if they were playing a game together.  He participated in the gift exchange as much as possible, but I kept an eye on him and realized that he wasn’t as present as the rest of us – but he was still making a special appearance in his own way.  After the hilarious yet over-stimulating White Elephant gift exchange, Mom lovingly passed out a matching gift for each person present.  The reactions were beautiful as people realized that they now held Dad’s long-awaited autobiography in their hands, with a personalized, heartfelt and handwritten note inside the front cover by my mother.  Dad was pretty oblivious to the emotional charge in the air.  He keeps forgetting that his book has arrived and even sometimes that he wrote a book. 

My cousin Danny walked up and asked Uncle Frank if he’d autograph his book; my dad obliged with the help of my mother and the signature shockingly resembled his old penmanship!  Then my Aunt Liz approached Dad for a 2nd autograph and you could see the moment his brain broke from the over-stimulation and over-processing.  His signature continued on for 2-3 lines with the same loop-de-loop, and then he turned to my Mom and said, “I don’t want to… do this anymore.  I’m… I’m not having fun here.”  The look on his face was intense and stern, and I immediately took his arm and guided him gently upstairs to a quiet place by the Christmas tree where his mind could settle.  We sat side-by-side on the couch and I stroked his hand endlessly as he sat there with his eyes closed.  The muffled sounds of the party juxtaposed against our quiet moment of solitude just made my heart ache with the sadness of the moment.  It hit me again like a ton of bricks that my dad is departing our world at his own speed.  And like the social, loving gentleman he is, he still wants to participate in the parts he can.  We just have to be sensitive and protect him from the outside forces – sometimes ones that we ourselves force upon him – at the exact proper balance for his own peace of mind.  And this balancing formula comes with an ever-changing scale.  Each time I realize he isn’t keeping up with us anymore, I cry for two reasons: first, I miss him and want him to be with me; secondly, I realize how much he just selflessly gave of himself trying to keep up and make everyone else happy while he himself suffered.  He keeps teaching me beautiful lessons every day.

Two days later, Christmas Day was upon us and Dad had his 4th or 5th good day in a row!  He is finishing some sentences, sometimes even stringing 3 thoughts together in a row (!!!!), using some large vocabulary, shuffling a deck of cards again, and properly associating people he no longer recognizes with their correct spouse or friend.  He amazes me every day! 

For Christmas, I gave him a gift of Magformers which are like magnetic Lego’s®, and he actually used the word “clever” to describe them!  Later, he called them an “optical illusion” – which they are!!  It’s mind-boggling when he seems more present some days than others.  Mom and I think that maybe the constant flow of visitors into our house to care for Dad since the robbery has re-stimulated him in a way that is allowing him to flourish!  And if that is so, we tell ourselves, then he’ll probably do very well at the nursing home where there will be so many people to interact with daily.

There were two things that killed me emotionally on Christmas Day.  Okay, three.  First, that damned “I’ll Be Home For Christmas” song the radio keep playing and playing!  Then every time Dad opened a gift box containing a sweat suit, he didn’t get the tough implication that this was a new outfit for the nursing home we are about to send him off to!  And the third thing that just completely broke my heart was when he said he was ready for bed.  I SOBBED after my brother Frank and 4 year-old nephew Frankie led Dad into his bedroom.  I SO DIDN’T WANT THIS CHRISTMAS TO END…  Because now that means that the end is so much nearer.  And this was probably the last magical Christmas I’ll ever spend with my dad.  It just breaks your heart.

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2 Responses to “December 28, 2009 – THE BOOK IS HERE! THE BOOK IS HERE!!”

  1. Aunt Kathy said

    I totally understand Jo, but don’t forget that you have so much of life ahead of you – there will be other magical Christmases – just in other ways! Love you dear.

    • Thanks for the reminder! This slow removal of my dad from our life is excruciating at times – but I honestly DO know that I will survive this and will go on to have many more beautiful chapters of my own. You know, there are tests that exist for relatives who want to be checked for an Alzheimer’s gene, but I just honestly am not interested in that. I wouldn’t want a prescribed ending dangling before me causing me to live the rest of my life thinking THIS could be the last Christmas, birthday, vacation, etc. I see how damaging and exhausting that can be to the spirit. I think it’s better to live in the moment and in that way make every day count. Our time here will end soon enough and I personally choose to live emblazened by love and celebration. My blog entries are in their own way a celebration of a beautiful life that amazingly existed. xo!

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