(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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(REAL-TIME ENTRY)

My eyes are blurry with exhaustion as I type this.  As soon as I’m done, I’m heading to bed to pass out (at 5pm!).  WHAT a whirlwind 24 hours we’ve had!

First off, in order to give my mom some much-needed time and space for unplugging from the constant madness swirling around her, I sent her and Mary (one of her high school best friends who flew up from Florida to support us for a whole week) on a local 24-hour hotel/spa package getaway.  I hooked them up with top-of-the-line service and amenities and prayed that she’d be able to decompress some before Christmas hits next week and then we admit my dad into Sunrise Assisted Living the next week.

However, shortly after their arrival at the hotel as they were just beginning to settle in, the detective investigating our in-home robbery called my mom with the news that the two male punks who worked for us were now both in jail!  (Here she goes again getting sucked back into the harsh realities of her life…)  Following a lead that one of them had sold a huge batch of jewelry to a local pawn shop last month, the detective arrived at the pawn shop to interview the owner – and IN walked one of the guys with more jewelry to pawn!!!  BUSTED!  His roommate was sleeping in the car outside and they both were led away in cuffs!

The upsetting news (besides confirming that these boys had smiled and hugged us daily all the while robbing us under our noses!) was that ALL of our family jewelry was melted down!  The pawn shop owner waited the legal wait period of a mere nine days, then popped out the stones and melted down every last love token of my parents from their 50 years together.

To add insult to injury, the boys got barely ANYTHING for the exchange!  Honest to God, had they just ASKED us for money, I’m sure we would have given them more than that just from the good of our heart!  But, instead, they chose to do THIS TO US???  It makes you want to vomit.

Refusing to leave it there and wanting to warn other families about the potential pitfalls of allowing hired help into your home, I called WDIV (the Detroit NBC affiliate where I used to work as Associate Director) and offered them exclusive coverage of the story – and they said we’d be the lead story at six o’clock!  With my mom in a massage and unreachable, I raced and managed to get the news crew in my parents’ home to tape my interview and meet my father, all before she arrived back home!

(­Click here to watch the WDIV coverage of our story.  NOTE: then scroll down below the video screen, click on the box that reads “Search All Videos” and type Alzheimers, then change “Today” in the next box to “Last 30 Days”, and click on the photo of my parents with the caption “2 Men Accused Of Robbing Alzheimer’s Patient”)

The moment she walked through the door, I told her not to take her coat off – we had to go the police station right away to try to identify more jewelry and they were about to pounce upon the boys’ apartment.  So, with massage oil still in her hair, she and I raced off to the station while she tried to digest that we were going to be on the news in a few hours.  None of the seized jewelry was ours.  My mother requested a silent glare at the two boys behind bars but couldn’t be granted her wish.

Then we raced to Dad’s doctor’s appointment so that his chest X-ray and medical paperwork could get filled out in time for him to enter Sunrise on January 1!  I insisted the doctor also write a few prescriptions for my poor mother who is having the absolute worst week of her entire life and is hanging on by a thread with everything she’s got. 

Thank God for wine.  It really does help the world go ‘round some days.

(REAL-TIME ENTRY)

Following the stomach-turning discovery of unconscionable theft last week at my parents’ home, all of the hired in-home care workers who’ve been helping us with Dad the past number of months were instantly fired.  Only with the help of family members did Mom and I somehow get through the long dramatic week of heartbreak and pre-holiday commitments, including Dad’s final social outings outside of the home.

Today marks the countdown of Dad’s last 18 days at home and the burden is now immense as we no longer can risk inviting strangers into our home.  So, in order to seek help with Dad’s around-the-clock care during his remaining weeks at home, my family sent out a mass plea to loved ones.  To say that our plea was “answered” would be an understatement.  Get ready… The Calvary is coming!!!  🙂

It took me the entire day today to organize ALL of the responses we’ve received into a bulging support schedule!  Aunts, cousins, nieces, neighbors, former neighbors, former employees, plus a massive line of beloved friends (who go back 30, 40, even 60 years!) are about to pounce upon my parents’ home!  I think that the enormous response we’ve gotten beautifully and appropriately reflects the generous, fun, kind, loving, social people my parents have always been.  People really want to help – and there is not shortage of people!  My family is truly blessed in this way.  I can’t even fathom how people who have no support system or financial means struggle along with this horrid disease.

One of my mom’s best friends from high school lives in Florida (my “Aunt” Mary) and even she is coming!  She flies in today for a full week and will be helping with Dad and tending to Mom’s broken heart and full conscience as the certainty of the nursing home edges closer every day.  Only 18 more (hard but special) days remain until my beloved Daddy-O will be escorted by hand out of his very own home and our lives will be forever changed…

Today was Christmas. I bought Dad the game Catch Phrase, which he was so good at on Thanksgiving. I figure it’ll keep him mentally sharp, like how the experts suggest doing crossword puzzles after an Alzheimer’s diagnosis. However, Dad didn’t seem to have time to properly digest and comprehend the gift before someone else was handed another present and the Christmas commotion continued.

It was obvious that Dad wasn’t keeping up with the action today, especially during the gift exchange.  There was just too much going on at once – music, side conversations, tearing paper, a giddy grandchild, brightly-colored gifts, drink refills, video cameras, photography flashes… Understandably, Dad was acting very A.D.D.-like with all the surrounding stimuli. He was on overload trying to compute it all. But I have to hand it to him, he was in pretty good spirits, just a few steps behind everyone and every conversation. A little foggy almost. But we were all together and I kept focusing on that…

At the end of an amazing day with my family, for which I was so thankful, my husband picked a fight with me on the way to our car at midnight and I ended up going to bed sobbing, not understanding why he had to ruin such a nice day. I mean, just when I seemed to finally not be toppled over by my dad’s condition, he toppled me over anyway. I’m severely on edge and my insomnia is a bad as ever…

I had a very nice Thanksgiving with my parents, although, of course, I can’t help but constantly wonder in the background of my head “if this may be our last one together” as a cohesive family.  I mean, how much longer will Dad last??  This thought prevails over every good moment we have.  I’m not sure that it ruins or diminishes the impact of the moment, but it definitely leaves me with a heavy heart and pulls me in many emotional directions constantly.  It’s exhausting, but I can’t turn it off – I’d like to, but I can’t figure out how.

The upbeat moment of the night was when we decided to play a game after dinner.  We attempted a new one for us: Catch Phrase, that electronic box you pass around that gives you a word or phrase to describe without using the word itself.  MY DAD ROCKED!!!  Honestly, I think he was the most effective player of the night!  Somehow, he was able to organize and grab his thoughts in record speed.  I guess we prepared ourselves for the fact that the pressure of a timed game would make Dad stumble and fail.  Boy, were WE surprised!  And impressed!  Go, Daddy-O, go!!!