(Real-time Entry)

Two better days in a row now for my dad – plus last night he was given a sleeping pill which seems to have allowed him to finally get some much-needed rest!  Thank God.

You know, this disease is so interesting in that you’re never sure what you’re going to find when you walk into the room with him.  Just two months ago in November, Dad was starting to have trouble with some immediate family members’ names and faces.  The bottom of the pit was when we introduced himself to my mother twice.  And he had begun calling me by my brother Todd’s name on occasion.  Sometimes he’d even ask me in mid-conversation, Where’d that girl go that was just sitting here? The one with the black hair?  Where’s your sister?  Tell me when she gets back because I have something important to tell her…

But magically sometime in December prior to Christmas, he snapped back a few notches and – even despite the confusion and trauma he’s gone through at the nursing home this past week – he still continues to know WITHOUT A DOUBT who I am, my mother, and my brothers!  It’s a miracle and a gift! – albeit a temporary one, I know. Regardless, we’ll TAKE it!  🙂  It’s so exciting for me that Dad is currently funneling through ALL of the different nicknames he has for me, referring to me just last night as “Shmoe” (aka Joe the Shmoe).  When I left the table for a few minutes, I was told that he turned to my cousin and asked, Where’d Shmoe go?  It’s so cute and playful and I am so bloody thankful every single time he does it! 

We’re not sure sometimes if Dad knows every friend and family member who visits with him but it is amazing how, even on days when he doesn’t appear to know someone by name, he still knows what people are associated with that person!  For example, my cousin Karrie didn’t think Dad knew who she was last night when she visited, but Dad kept talking to her about “Bill” (her husband), recounting some real and some made up stories about his interactions with Bill.  When our family friend Joyce visited Dad at our home around Christmastime, Joyce was positive that he no longer knew who she was yet he kept talking to her about “Kathy” (my aunt and Joyce’s best friend)!  On Dad’s first full-day at the nursing home, when we visited him with my Aunt Kathy in tow, Dad called her once by her full name (which pleased her greatly!) and then proceeded to tell “Jack” stories (her husband).  He’s a very smart fellow and it is fascinating to see the brain at work and which parts still connect on some days. 

Probably because Dad’s last two days have been better and less emotional for him, my past two days have come with some emotional relief as well.  On some emotional purging expedition, I even went and cut off my hair!  I literally put my head in my hairdresser’s hands after making it VERY CLEAR that she couldn’t cut it TOO SHORT or else I might risk confusing my dad.  I want him to recognize me for as long as humanly possible…

There were a few good signs yesterday at the nursing home.  First, I think Dad barely cried.  Secondly, when my mom walked into his bedroom after he had awoken from his nap, she found him standing dressed at the foot of the bed not upset.  He said, Oh, hi, honey!  She noticed that he had removed a framed photo from the wall of her and him in Hilton Head with their favorite band, The Headliners, and it was now peacefully resting on the window sill.  I would like to think that this means that the photos I hung the other night are making a difference for him, that he’s noticing them and perhaps they’re part of what’s calming him when he awakes.  Thirdly, when I arrived last night after dinner, Dad was happily sweeping the dining room floor!!!  Sweeping was a chore he did regularly at home.  I believe this is a sign that he has begun to place pride and ownership in his new surroundings and – in perfect Frank Firek style! – he wants to help out and be of assistance.  He is amazing and it always moves my heart to see him in action like the old days!  Of course, he paused when it came time to figure out the dustpan and he was much better at the sweeping aspect itself.  But in a playful way, he purposely banged the broom against chair legs and wheelchair wheels while he was sweeping, and he jokingly said to the ladies sitting in those chairs, Oh, I’m sorry, was I bothering you??  🙂

He has made a new friend at the home.  Her name is Carmen.  The two positive attributes of Carmen is that she giggles non-stop at everything (so Dad thinks he’s pretty funny!) and that she is an opera singer with a beautiful voice.  It’s great to see her sing and Dad dancing around her!  Music and humor are still two big ways into his heart and they always lead him to his happy place!  I’ve seen Dad kiss Carmen on her hand a couple of times but, then again, which lady doesn’t he do that to?  🙂  Last night, he kissed Carmen on the hand and then he immediately turned to my mom and kissed her on her hand!  What an interesting trio!

My mom and my brother Frank Jr. met with the nursing home director yesterday afternoon, one week into Dad’s stay.  The director was describing how many people get dropped off at the home and then have very few visitors throughout their stay.  Then he commented on how incredibly close our family appears to be and how he can tell that Dad’s moods seem to be directly related to us and his interactions with us.  He is pleased that we are there nearly around the clock during Dad’s waking hours to help him with his transition.  He also suggested that Dad’s violent outburst his first night at the nursing home wasn’t as bad as it sounded and that they’ve never witnessed any behavior even close to that from him since.  Then he suggested that we might want to attempt soon to take Dad out for a day trip to someplace familiar!  So, this Sunday, Dad is going to spend the day at Frank and Amy’s playing with his grandkids!!!  We are SO excited!  A week into the transition, with his meds re-adjusted and his good mood back, maybe we’re at a turning point here.  That would be such a blessing and a relief!  There’s nothing worse than watching a loved one in pain.  I’ll take his smile over tears any day!  xo

(Real-time Entry)

As if on a mission, I drove back to the nursing home and explained to Dad (like I had promised myself) that he isn’t crazy, he’s right, he isn’t at home, that it’s understandable he’s confused, that he’s safe, and that he isn’t alone.  This conversation took place just before his bedtime and so he wasn’t able to comprehend it all, probably somewhat based on the Alzheimer’s itself and somewhat based on the fact that nighttime is when his brain power is the lowest. 

My brother Todd was with me and together we lovingly explained to him, Just like you’ve had LOTS of homes in your lifetime (we listed 8-10 childhood homes, Air Force bases and marital homes), now this is your NEW home! (delivered with lots of smiles and excitement!)  He said softly, It is?  He asked why.  I explained to him that he has a disease called Alzheimer’s and it plays tricks on his brain and with his memories and that he needs some extra help throughout his day.  This made him cry.  He said he didn’t understand why he had to be in “this place”.  Todd and I explained that we all have jobs we have to go to during the day and, because we would NEVER leave him alone, we found some wonderful people who can take care of him while we’re at work.   He said Okay through his tears.  Brilliantly, Todd then explained to Dad that, just like a magic trick, if we weren’t here, in just a little while… you never know when… ABRACADABRA – POOF! we’ll appear!  This made Dad laugh simultaneously while crying.  I said, You know what the MOST exciting part is?!  Dad said, What?  I said, You have your VERY OWN bedroom… with a brand new bed – and a DRESSER!!!  He half-chuckled and said that was very generous.  I asked him if he wanted to see his new bed and have Todd and JoJo tuck him in it.  He said okay and followed us in the bedroom while holding our hands.

Through tears and confusion, we got him into bed, tucked him in, and I explained to him one last time, Now, Daddy, remember… when you wake up in the morning, we won’t be here.  You’ll probably get up, get showered, get dressed and maybe even have breakfast and then all of a sudden, POOF! we’ll be here!  He asked what WE were now going to do.  Todd said, Well, I’m going to go home to MY house and get into MY bed.  And Joleen is going to go to HER house and get into HER bed.  And you’re here at YOUR house and we just tucked you into YOUR bed!  🙂  I explained one more time that we wouldn’t be here when he woke up but that it would be okay and we would arrive like a magic trick really soon!  He said, And then what will we do?  And I said, We’ll PLAY A-L-L day!  We’ll spend the whole entire day together and have adventures and do anything we want, and it’ll be GREAT!  With that, we kissed him goodnight, turned out his light, wished him sweet dreams, and walked out praying for the best.

That was 3 nights ago.  Dad has told me numerous times since then how confused and afraid he is, how he doesn’t understand why he’s “here”, and he has asked me if I understand what’s going on.  I keep telling him in a very gentle voice that he has Alzheimer’s and just needs a little extra help with things, like sometimes finding the bathroom or cooking food to eat, and that here he will ALWAYS be safe and taken care of, even when we have to go to work.  He once asked what HIS job is, and I told him it is to stay here, be strong, believe in God, remember we love him, and to try to find peace.

Two days ago after trying to preoccupy him during the day with ‘50s and ‘60s songs from the jukebox, I finally suggested we take a time out and I led him to a quiet room with gauze curtains for a door, a rocking chair, soft lights and a CD player.  I put in an audio CD of Sunday’s church service which he hadn’t attended.  His last church service at his beloved Renaissance Unity Church in Warren was on Christmas Eve, a week before coming here.  In the rocking chair he closed his eyes, and I explained whose voices he was hearing on the CD while he responded softly, Yes, I know, thank you.  I recognize that.  About 5 minutes into the CD, the most amazing thing happened.  My dad opened his eyes, found me sitting next to him, looked me deeply in my eyes, and whispered softly but intensely, THANK YOU.  He closed his eyes again and I held his hand for the next 40 minutes and he went the whole time without crying.  It’s funny, everyone’s been so busy trying to distract him, amuse him, cheer him up and keep him busy, that I think we’ve all mistakenly forgotten to give him access to his faith and the quiet space to go deep into his spirituality.  I hope this is something that calms his mind every day from now on.

That night after dinner, we scrapbooked a photo shadowbox to hang outside Dad’s new bedroom.  We made it in front of him, hung it for him to see, and explained that it will help him find his room.  I told him that this new house didn’t feel like a home yet because it was missing an essential element – pictures on the walls!  He seemed to like that idea and the next day we hung over a dozen framed photos throughout his bedroom.  This way, instead of waking up afraid among four plain white walls, maybe it will seem homier and he’ll recognize some of the images and be reassured.  He awoke yesterday morning and then again yesterday from his afternoon nap and didn’t seem as afraid.  Then, Mom and I put him to bed last night and for the first it was without tears in his eyes.  It was a better day!  However, a checkup phone call at midnight informed us that he was back up, confused and sitting in front of the TV.  My poor Daddy-O is SO tired!  He has had so many sleepless nights back-to-back and yet he can’t sleep!  This must just add to his exhaustion and confusion.  Mom was put on the phone and Dad told her in a very tired, soft, dejected and defeated voice, Frances, I just don’t know what I’m doing here…  She lovingly told him that he had to get some sleep because his grandson Frankie was coming in the morning to play with him and he needed his energy.  He said okay but you could tell he hadn’t budged from that couch.  Mom then told him to go lie back in bed, close his eyes and meditate and think about God.  He said okay and hung up.  A half hour later we were told he was back in bed.

But the poor guy is living a hell on earth.  Every single time he awakes he has to figure out his surroundings all over again.  He has to understand where he is, why he’s there, who these people are, why no familiar faces are around, and sometimes he also starts wondering what he’s done to be stuck here and to deserve this treatment. It’s worse than the movies Ground Hog’s Day or Fifty First Dates.  It truly is a frightening, undignified process that I am positive Frank Firek does not deserve.  No one deserves this.

Based on some very bad advice we received, we had taken Dad OFF of his anti-depressants prior to moving him into the nursing home.  A very BIG MISTAKE we’ve learned!  He is now back on his anti-depressants, plus anti-anxiety meds twice a day, and sleeping pills will be added to the mix today.  We are hoping his tears will fade more and more by the day.  Visitors definitely help pick his spirits up and we hope for a constant flow of familiar faces for him!  Of course, he doesn’t always remember the next day that you had stopped by, but he’s in a world now where he’s forced to live in the moment and enjoyable visits definitely help make his day.

Amazingly, I made it almost through the entire day yesterday without crying (except when Mom and I cleaned out Dad’s bathroom).  I hoped maybe I was on to something new, a new phase of recovery.  But this morning I awoke with dread in my heart and couldn’t drag myself out of the covers for over an hour.  Over coffee, the tears started.  I’m not sobbing today, but a constant flow of slow tears keep finding their way out into the world.  I am grieving, I am tired, and I am so incredibly sad.  Just like my dad has to re-figure out his world every day, I now have to figure out mine, too.

(Real-time Entry)

Events and emotions have swung the entire pendulum over and over again the past few days since putting Dad into a nursing home.

It started out Jan 1 with us feeling horrible and heartbroken as we drove him there and left alone.  Based on much advice we had received from dementia and nursing home professionals, we took Dad to see the “new club” but we never said goodbye when we left, we just kind of slipped out when he was happily preoccupied.  It is this fact that has been burning a hole in my heart ever since.

We left him there around 1:30p and Mom called and spoke to Dad on the phone at 4:30p to see how he was doing.  He was laughing without a concern in the world and didn’t appear to miss us or wonder where we were!  What a RELIEF!  Then, a few hours later we received a phone call at 8p from one of the nursing home directors saying that Frank Firek is the spark this place has been missing for a long time!!  He is so social and funny and kind.  He is socializing with everyone.  We are just really blessed to have him join us!  He is a beautiful spark that is shining throughout the home already.  I think he is going to be just fine.  That phone call allowed us to get to sleep that night and we considered it a true gift from God. 

However, it was another comment the director had made that woke me up crying in the middle of the night and again in the morning.  She recounted for us a conversation that she and Dad had had earlier in the day.  When she asked him if he liked the place and told him that if he did he could stay, he replied, Yeah, I’m gonna live here the rest of my life.  Surprised, she asked him if someone had told him that.  He replied with resignation, No, I just sort of figured it out on my own.  OH GOD!!!!  I feel so HORRIBLE for STRANDING HIM THERE with NO EXPLANATION!  And he STILL figured it out!?!  WHY didn’t we just TELL HIM THE TRUTH so that he didn’t have to feel so ALL ALONE once he realized the cold, hard truth??  How could we DO that to him?!?!  God, he is SO SMART – even now.  That brain is working overtime and he is figuring out some very complex stuff we were told he wouldn’t completely comprehend this far into Alzheimer’s.  He still amazes me.  He is still there.

The next afternoon, Mom and Todd and I went over to the nursing home for our first visit around 4p.  He was dancing to a live singer/guitarist while everyone else in the audience politely sat and listened.  He was doing lovely, peaceful ballet-style movements, moving all about the singer in the open floor space – he even kissed a few ladies in the front row on their hands and the tops of their heads – a total Frank Firek move!  😉  When Dad spotted Todd, he said, Oh HI buddy! and danced his way over to Todd with a smile on his face.  Todd hugged Dad while Dad danced before him and Mom and I waved and said hello to which he nodded, smiled, and peacefully danced back off toward his “stage”.  We all watched in amazement at how well he was assimilating, how peaceful yet happy he appeared, and how he was bringing such life and joy to this place.  PROUD is definitely a word that was in my head and heart as I watched my beloved Daddy-O just being himself.

Moments later, we started getting partial updates from people around the home that last night Dad actually slept through the whole night (yes!!!).  Then, we learned that there had been some trouble prior between the positive phone call we had received and his bedtime.  The books and the professionals and the doctors prepare you for this sort of thing but we just didn’t think Dad was going to experience this side effect of Alzheimer’s.  After all, he is the most kind, loving, patient, non-violent man you’ve ever met!  And he seemed to become more of a pussy cat during his decline these past two years, making the thought of him lashing out absolutely ludicrous.  Well, lash out that night he did!  While sitting quietly at a large dining room table with other residents while winding down for bed, for no apparent reason Frank Firek stood up, lifted his chair to the ceiling screaming, seriously got in a female nurse’s face when she tried to intervene, PUNCHED a male nurse in the face!, and grabbed a second male nurse (the largest man in the room) by the testicles, squeezing and yanking as hard as he could, even ripping the man’s pants!!!  They claim they’ve never seen a resident anywhere behave in such a violent way!  Frank Firek???  You’ve got to be joking!  Todd, Mom and I all thought they were kidding us!  But by the grave looks on their faces you could tell it had been for real. During the altercation, all the residents were evacuated to their rooms and locked down for their own safety!  Dad was eventually led to a couch alone to calm down.  Someone kept briefly checking in with him every now and then and at one point when asked how he was doing he amazingly said, How’s my transition going?  The answer he received was “smooth”.  Dad said, I like smooth.  I thought you were going to kick me out of here.

It’s just amazing how much he is comprehending – WHERE he is, HOW he behaved, the potential CONSEQUENCES of his actions.  When I asked Mom through tears HOW he could of figured it out, did we say or do something in the days leading up to it?… she responded with, Joleen, your dad is a highly intelligent man.  It doesn’t surprise me at all. 

After the singer finished his performance, Dad immediately plopped into a soft wing-back chair and closed his eyes.  Todd knelt next to him, rubbed his arm and started talking softly to him.  To me, my dad seemed confused as to why he was here but so was Todd – almost like it’s supposed to be one world or the other.  I felt like he was over-processing the current experience but, being too tired to figure it out, he just kept closing his eyes.  I don’t know, maybe he was mad at us and was trying to punish us.  Todd thinks that Dad realized where he is, that he missed his chance to take his own life as he had planned, that he is stuck exactly in the middle of where he didn’t want to go, and that he is mad at himself.  That may very well be true.

The next day, on Dad’s second full day at the nursing home, he kept saying comments to my brother Frank during his visit like, I don’t want to be here; why am I here; what did I do wrong; I hate it hear – it’s quiet and there’s nothing to do and I don’t know these people; where are my friends; no one ever visits; I’ve got to find a screwdriver and break out of this place; I’ve got to find a man and hire him to pop my head off! (with a gun motion to the side of his head!).  It is such inexplicable anguish to know that my dad is miserable and that there is nothing any of us can do about it.  If the laws were different, if we could assist him in his final wish of life, we could all be around him holding his hands while he drifted off peacefully to his next stop in the manner he chooses.  I personally don’t see anything wrong with that and I don’t know why there is a law against assisted-suicide.  If we are all God’s children and He gives us free will and He loves us no matter what… then who is this law designed for??  I think everyone should be able to make their own end-of-life decisions and should be able to be surrounded by those they love in their final moments.  I think locking up confused people who will never again benefit society is a truly cruel act and I pray to God that changes will be made on this earth so that other grieving families can experience smoother transitions.

I have vowed to go back to the nursing home and tell my father that he isn’t crazy, to be honest with him finally – like we always have been, to tell him that this is his new house, that it’s okay, that even though he’s scared and can’t remember things that happen or why he’s there, that he just needs to remember ONE thing: that we love him, will always take care of him, will always make sure he’s safe, and that we will visit him every single day and will never leave him alone.  If he can remember that ONE thing, then all he needs to do with the rest is put his trust in God whom Dad has always believed in.  I have to remind Dad that God writes straight with crooked lines and that this problem is not one for us to figure out.  Daddy just has to be encouraged to find peace with his spirituality, to turn off all the noise and the thinking and to just surrender to God.  I think he’ll find the peace he’s so desperately looking for there.

(Real-time Entry)

I’ve been told that when you attend your parent’s funeral, there is a complex flood of emotions that hit in no particular order at no particular time and that everyone reacts differently.  I was witness to that yesterday on the day that we drove Dad to a nursing home and were forced to walk away with one less member of the family in our car.  We all took different paths over the past couple years, but we undoubtedly all showed up in the same place on that day.

It’s an odd feeling to wake up in the morning and have dread already present, making her head feel twenty pounds heavier on your pillow.  Throughout the morning, I kept having to force myself through the motions of showering, brushing my teeth…  I kept having to shake the emotions out of my head like clearing bad thoughts from your mind with your eyes shut tight and your head shaking back and forth at high velocity until another calm comes upon you and you can continue on with what you were doing.  There wasn’t time for breaking down and there definitely wasn’t space – if one of us broke, it could’ve led to a disastrous chain reaction.  It was agonizing that Daddy-O went to bed crying and cried off and on throughout most of his last morning at home.  It always breaks my heart when he cries, but on THIS particular day I was already doing everything I could not to cry myself and it was difficult to continually overcome.

He cried regularly during breakfast and over small conversation, he cried dancing to Christmas music, he even cried while dancing to his beloved oldies.  I realize he went off anti-depressants a few days ago and that that may all just be coming into play for him now, but the timing was eerie, like he almost knew that this was a somber moment in which something big was about to change.  At one point, I urged my mom to take Dad out for a walk in the cold, fresh air as nothing else was getting him to stop crying.  As she was bundling him up he said to her, I know what’s going on here.  You don’t want me around anymore. I’m sure it’s one of his typical comments that had no basis of truth and that we were projecting – but how do you really KNOW???  It felt like we were abandoning him and it was the most heart wrenching experience of my life.  I don’t wish this sort of situation upon ANYONE.

On the drive to the nursing home, I could see tears pooling up in Mom’s eyes as she held Dad’s hand in the backseat.  To save her from herself, I jumped into an old song we used to sing in the car as a family on long drives.  As Zippity Do Da filled the car with energy, I prayed that Dad couldn’t sense the underlying tone of it all.  We sang one song after the other until we became too emotional to process yet another title and then we drove the last few miles in near silence.

We arrived at Sunrise Assisted Living just prior to lunchtime and were led into the Private Dining Room we had reserved.  Mom kept saying how “nice” the new “club” was, how they put a lot of money into their pretty furnishings, how we should start coming here regularly – to which Dad agreed on all accounts.  Many times during that lunch experience I found myself not able to breath, shaking so hard I might drop the item in my hand, excusing myself from the room, and dashing out the front door desperately needing the fresh, cold air to refill my lungs!  I found bizarre solace in a giant red Christmas bulb dangling by a thick red velvet ribbon swinging outside in the wind.  I found I could focus on that and somehow hypnotically return to a place of emptiness where I tricked myself into stopping the tears and then would walk back in the door.  A couple times I didn’t make it through both sets of front doors before having to run back outside to try to recompose myself all over again.  

After lunch Mom said aloud, Well, why don’t we take a tour of the new club!, and Mom walked through the rooms  with her arm locked in Dad’s.  After seeing the main areas, we walked down last remaining hallway and I pressed the code into the keypad to unlock the door to Dad’s new home: the Reminiscence Neighborhood.  Everyone piled into the much-quieter part of the building and as people gravitated toward and eventually into Dad’s new bedroom, I turned up a stereo with a Mary Poppins CD in it, cranked the volume, and danced my fears away with Dad by my side.  It was a joyous balls-out ballet of self-expression!  After a few songs, while we were still smiling and dancing a man announced to us that karaoke was about to begin in the other area of the home near the front door I kept using as my escape.  I escorted Dad there knowing that I could continue to distract myself and transport him to his happy place with the right songs. 

I don’t believe that the nursing home ever saw the likes of Frank Firek before!  We burned up the “dance floor” flailing in any direction we wanted, smiling, singing the words to one another as we danced our father-daughter dance that is so familiar to us by now.  The entire room was properly seated – but for us!  I heard one lady grumpily complain, Why does that man keep standing in front of the TV!  Another woman was very agitated by our uninhibited behavior, apparently uncomfortably anxious that my dad might trip over the microphone cord at any moment.  I reasoned in my head, Oh well, they’ll come to understand the force of Frank Firek soon enough!

My sister-in-law, Amy, and I kept Dad busy with karaoke and dancing for about an hour – he even got one lady up to dance! – while the others ducked behind closed doors to finalize paperwork and other serious things. Sensing that the point must be nearing for us to leave, I stranded Amy with the responsibility of dancing with Dad, frenzied with panic and tears in the hallway out of sight as I watched them and felt inconsolably bad. 

Then, Mom appeared and I was told it was time for us to go.  I totally panicked.  I think I repeated over and over again aloud to the group of workers and family members surrounding me, I can’t do it.  I can’t say goodbye.  I just can’t!  I can’t DO IT!!  Mom joined right in with me, and sobbing together we locked arms and walked out the front door.  I can’t properly explain the complex set of emotions that were at work in my heart and in my head.

I wish I was stronger!  I wish I had had the strength to actually hug him goodbye – my Daddy, my best buddy!!! – tell him that I’ll be back, that I love him… but I couldn’t!  I honestly could NOT bring myself to look at him one more time and hold it together while my heart was being shredded away in my chest!  This is completely different than CHOOSING not to say goodbye– I literally could NOT go bring myself to go through the motions.  My hands were shaking, I felt nauseous, I felt complete and total panic, and every time I realized I was about to pass out I’d then realize that I had actually stopped breathing.  The event entailed literally forcing myself to take each single breath and every single step.

Hours later at home, properly numbed by the sting of Grand Marnier, I watched as Mom dialed the nursing home to get a status report on Dad.  She was transferred, and then she was completely thrown off kilter when a man answered.  She said, Hello, this is Fran Firek, to which the man playfully and calmly replied, This is Frank Firek.  The look on my mom’s face was complete shock and fear!  She instantly composed herself and continued, Well, hi, honey, what are you doing? to which he laughed and replied, I think I’m trying to solve some problem or something!  She asked if he was hungry and he said yes.  She told him it was close to dinner time and asked him what he was having for dinner.  He said, I’m not sure how I would deduce that.  I, I just don’t know.  She said she’d see him real soon and he replied back, I’ll order it for two and have them put it on the deck!  Okay, gotta go!  Bye!  🙂  And he hung up with a smile in his heart!  We were so shocked by the exchange, by the happiness and excitement in his voice, that Mom and I both completely broke down and deliriously sobbed in relief!!!  He was OKAY!!!  He was actually HAPPY!  And, luckily, he didn’t seem to miss us at all! 

But the same can’t be said from this side.  It’s difficult to put him in this undefined category of not living with us anymore but not totally gone either.  I believe the emotions must be somewhat like those during a funeral.  I feel like he’s gone.  But… then I remember that HE’S NOT!  🙂  There are still special pieces and special moments to be captured with him and treasured in my heart.  I just have to sort out which shelf in my heart to place each emotion on.  And then I have to do it again with my head.

(REAL-TIME ENTRY)

The past two days Mom and I have been packing up Dad’s things for the nursing home.  What a surreal event.  She wrote his name in permanent marker on everything from his toothbrush to his loafers.  We ironed name labels into all of his clothing.  She even packed pajamas – something he’s never worn.

I took the advice of my best friend, Jac: Just pretend you’re packing him up for summer camp!  As silly as it sounds, I kept saying that to myself and aloud to Mom during the process.  It helped to somewhat alleviate the burning realization that we’re packing him up for a place from which he’ll never return.  It helped me feel more like we were packing him up for a fun adventure he was going off to have versus the tough reality that he’s leaving us and things will never be the same.  As silly as that all sounds, it actually worked a little.  We got through the ordeal in a very militant checklist sort of way, pushing back the guilt-laden thoughts that have a way of bubbling to the surface when you least want them to.

As New Years Day quickly approaches, signaling the day everything will cease to be the same in our family, I know I have to start focusing on me and the next chapters of my life.  Maybe spirits above interceded to insure that I had no professional projects to report to this past quarter so that I could focus on matters at home and work on my documentary.  Regardless, it’s time to return to the Land of Me whether I want to or not.  I have to get my work priorities in order, work on my dating life, and propel myself in directions I know I need to go.

I hope to travel some of these roads with my mom by my side and keep a watchful eye and caring hand on her as well.  Whether she wants it or not, the next chapter of her life is about to begin as well.  I need to be sure that she is not totally alone as she traverses roads she’s never experienced without my dad before.  Her life partner – HER BEST FRIEND! – is taking a fork in the road after travelling by her side for fifty years and this is going to be the roughest, rockiest patch she’s ever known.

(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.

(REAL-TIME ENTRY)

Yesterday, I was told, Dad slept a L-O-T.  I mean, some of our friends helping out with hours-long shifts at the house said they never even interacted with him because he was always asleep.  It’s days like that when you get worried about him and miss him.

Well… today, Dad was totally ON!  He never dozed off once, never took his midday nap, and was still going strong when I left at 8pm!  There was a constant stream of friends and family members in and out of the house all day, and Dad seemed to know who most everyone was almost all the time.  (Of course, there were still moments, like when his brother Al commented that they had the SAME mother, that totally blew my dad’s mind! 🙂

But today I didn’t just spend the day with my dad… HE spent the day with ME.  He noticeably called me by name: Joleen, Jo, Bubba (one of our nicknames).  It was SO EXCITING to have him back and to playfully interact back and forth!!!

At noon, I accompanied Mom and Dad to Dad’s haircut in Farmington with his long-time friend and barber, Joe.  Joe has been cutting my dad’s hair since 1972. That’s 1972!!  Today, I went as a Peeping Tom with my camera, wanting to capture their camaraderie and peek into yet one more friendship in my dad’s special world.  (Plus, I have a feeling that this may have been Dad’s last haircut with Joe since barber services are offered at the nursing home).  I could instantly tell that their monthly ritual was familiar and comforting to both of them, and I found the exchange between them touching and beautiful.  I mean, really, this is a 40-year-long ritual they’ve had together throughout my entire life

Joe made my dad feel so comfortable and I could tell that Dad was at peace, having fun and highly enjoying his visit with Joe.  I mean, Dad couldn’t find his way around the barber shop to give me a tour – he even tried to walk me into the cellar closet once – but he knew his buddy, and he knew that chair, and he knew this was a day to be treasured.

When it was over, I cried in the car while driving away from the barber shop.  What I had witnessed there was just so beautiful.  It brought to mind the final scene of Driving Miss Daisy.

And then my dad went on to have such a WIDE AWAKE, INTERACTIVE day!  He was constantly up, playfully rambunctious, F-U-N-N-Y as all get out, and my heart skipped a beat when I saw that sparkle back in his beautiful blue eyes!!  It’s amazing but his humor is completely in tact and his timing is still perfect.  I mean, he even rolls his eyes at the exact perfect moment while delivering a sarcastic line.  Granted, his comebacks don’t necessarily pertain literally to the current conversation at hand, but they make sense in that you know exactly what he intended for them to mean.  I tell you, MY DAD IS F-U-N-N-Y!!! 

Now, as I’m preparing myself to go to sleep for the night, I can’t help but look back on this truly magical day as if it was an early one-time-only Christmas present where I truly was given my dad back.  It was SUCH A JOY to interact with him and play his silly games and retell our silly jokes and crack each other up!  WHAT A GIFT TODAY WAS!  It will truly be in my heart forever.

(BACK-STORY)

Since Mom and Dad are now both retired, they decided to take advantage of the situation and the quality time that remains between them.  They planned a 2-month trip and called it their Retirement Vacation.

The social butterflies that they are, with friends from coast to coast, they worked their way by car down to Florida.  The next phase of their Retirement Vacation was to rent our old family home in Hilton Head Island, South Carolina.  I was VERY much looking forward to meeting them in Hilton Head with my brothers, sleeping in my old bedroom, drifting off to sleep with the waves crashing…

But then Mom suggested I fly to Florida to meet her and Dad there instead.  They apparently thought that a couple weeks of quiet, quality time – just the 3 of us! – would be just what the doctor ordered for me.  However, it was only on the plane today, as Michigan got smaller and smaller in my window, that I realized just HOW much this was the most BRILLIANT idea ever!!

It was such a heartwarming relief when their car pulled up at the airport and they got out in shorts and smiles to welcome me.  I started melting in relaxation right then and there in the backseat of their car… then in my room at their condo… and then by the pool in their backyard. I started to feel a calming sensation, something totally new to me, and I happily surrendered in my lounge chair in the sun…

We were at the pool perhaps 20 minutes when Dad decided that he needed a hat to shade his head from the sun.  Charming as always, he asked if we needed anything and then he walked inside.  Ten minutes later, he was back, happily eating licorice, carrying Diet Cokes for us, a newspaper under his arm – but no hat.  Mom asked, “Didn’t you want a hat?” to which he exclaimed, “Oh, that’s a great idea!” and off he went again.  After a few minutes she suggested I go in and help.

He was grabbing a book off the counter, and I suggested, “Hey, Dad, why don’t you grab yourself a hat for the pool?” to which he agreed and walked into the bedroom.  He walked out satisfied, no hat in hand, and said, “Ready?”  I said, “You know what, I’m just gonna grab you a hat so your head doesn’t get sunburned,” to which he said that was probably a great idea.

The rest of the wonderful day, I had a persistent awareness of me and Mom jumping up a lot to help Dad find things.  At one point late in the evening, he was wandering around from room to room looking for something and I whispered to her whether we should help.  She said that sometimes she just lets him look for a while by himself.  And then she admitted that it actually gave him something to do and allowed her a short break.  She added that sometimes he actually finds the item he’s looking for and she doesn’t have to get up after all!  🙂

Me happy to see Mom and Dad at the airport!

Me and Dad chillin' poolside - with his hat!

(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.