March 5, 2010 – NOW WHAT??

(Real-time Entry)

Friday turned out to be an unexpected whirlwind for my mom and me after we received less than desirable news… over and over again.

It all began with a family meeting with Dad’s psychiatrist at Botsford Hospital to bring us up to speed with his treatment and prognosis after 3.5 weeks in the Geri-Psychiatric Ward.  The news wasn’t promising, as Dad hasn’t been reacting predictably to their usual regimen of meds typically used to curb aggression in Alzheimer’s patients.  Apparently, my dad appears to be somewhat of a baffling case for them…

Dad’s psychiatrist suggested that Dad may have another complication in ADDITION to Alzheimer’s!  He introduced us to the concept of Frontotemporal Dementia – otherwise known as FTD or Pick’s Disease.  He explained that a brain affected by Alzheimer’s dies in its entirety yet very slowly, whereas, Frontotemporal Dementia attacks just the frontal and temporal lobes of the brain but kills that part of the brain very aggressively and quickly.  He said that Dad’s newfound aggression, physical violence and inappropriate social behavior could easily be explained by FTD, including the shocking rate at which he seems to be in decline.  The doctor pointed out that within the 3 weeks Dad has been at Botsford they have noticed a drastic reduction in his abilities and recognition; they’ve even noticed a drastic decline in just the past 5-7 days!  He said that 3 weeks ago Dad would eat if he was hungry and food was placed in front of him; he says that now Dad just stares at the food and can’t process what to do with it.  This change has happened within 1-3 weeks!  He pointed out that Alzheimer’s absolutely does NOT act this quickly and that an Alzheimer’s diagnosis alone doesn’t explain the last 5 months of severe decline we’ve astonishingly witnessed.

I suppose the good news is (assuming that this suggested FTD diagnosis is correct) that perhaps Dad’s suffering won’t be prolonged.  At the rate they are witnessing his degeneration, it was loosely suggested that Dad may not live out the year.  Six months was even thrown out when I pressed.  Of course, as usual, “no one can say for sure…”

Well, I say, Halleluiah! – please just take him home!  He is tired and restless and has been preparing spiritually for this part of his trip for a very long time.  He is ready, and he deserves peace.

The obstacle now though is where will he live out his remaining days?  (watch video below)

February 15, 2010 – MELTDOWNS OF THE MIND AND HEART (Psychiatric Ward Experience)

Forgive me if I sound a bit automated with this written recap.  The accompanying video clip will tell you the additional information you need to know.

Unbelievably, it was nearly a week ago that my father was transported by ambulance from Sunrise Assisted Living to Botsford Hospital’s Geriatric Psychiatric Ward for Involuntary Admittance by the State after repeated bouts of aggression and physical violence at the nursing home.  Apparently, this is a new stage he’s at in which you never know when the aggression is going to rear its ugly head.  Our family and friends have never personally witnessed one of these full-blown outbursts.

Dad was initially transported to Botsford last Tuesday afternoon and he wasn’t allowed visitors until Thursday evening when Mom and Frank Jr. went.  Mom then went back on Friday, only to be told that Dad was tranquilized and in isolation and that it had taken 3 security guards to hold him down for the tranquilizer shot.  The next day, I visited Dad at the Psychiatric Ward for my first time and I left with a heavy heart.

The few positive things I can tell you about this experience is that, first and foremost, the point of the hospital admittance is so that Dad can be strictly observed while his meds are tweaked until we discover the magical combination of drugs to return him to a calmer, happier, more peaceful state of mind.  Also, when we visit and explain to him why he is there, he agrees he should be there, he shows a heroic willingness to want to “get better”, and he can’t stand the thought that he might harm anyone (isn’t that SO much more like him?).  Lastly, I had a loving, heartfelt visit with Dad on Sunday – Valentine’s Day.  I will never forget that visit with him.  It melted my heart with love and helped make up for the sadder visit the day before.

However, it is touch and go and today Dad was in isolation again when visiting hours began. Mom and Frank Jr. were there and were allowed to help Dad out of the isolation room, but I am told that it required a wheelchair and that it took nearly half an hour until he was conscious or aware enough to look them in the eye or  respond to them in any way.  Before leaving, Mom gave Dad his first shave in a week while Frank Jr. held him up in a chair.  Mom says she is getting used to all the drama that seems to endlessly come our way… but I somehow just can’t believe it.  Sometimes I can’t believe any of this.

February 10, 2010 – THE BOTTOM OF THE TUNNEL IS FURTHER THAN YOU THINK

(Real time entry)

Okay, I have a pound of material to post but have been putting it off for weeks trying to take a break from the topic of Alzheimer’s to focus on me and my needs. However, after being sick yet AGAIN this week (for the 3rd time this month), I figure I’ll just jump online real fast to update everyone on a bunch of stuff all at once so I can get it off my chest and then everyone will be in the know.

COURT. The case of the “alleged” thieves has been transferred from Plymouth to Wayne County. The boys are still in jail awaiting a Feb 17th date with the Frank Murphy Hall of Justice to hear what the consequences will be if they choose to plead guilty. At least they’re still in jail and have had a very long month.

DAD. I’ve been visiting Dad 1-2 times a week – a combination of trying to step back a bit and simultaneously being sick. From what I can see, I would say that he has good hours and bad hours, no longer consistently good and bad DAYS. I’m not sure there is any method to the madness over there.

After yet another aggressive outburst today from my dad toward another resident (he was calling a woman derogatory names and trying to push her off a couch), the Sunrise Assisted Living psychiatrist made the professional call to send Dad to Botsford Hospital’s Geriatric Psychiatric Ward for 5-7 days of strict observation, monitoring and prescription tweaking. A bed wasn’t scheduled to be open at Botsford until tomorrow, but after yet another outburst this afternoon, the police were summoned to Sunrise. After Dad responded disrespectfully to them, an ambulance transported Dad earlier than planned to Botsford for what is called Involuntary Admittance by the State. Last I heard, he was going to be kept in the ER until a bed opened in the ward.

I can’t even IMAGINE what he is going through. When he was in the hospital for seizures 1.5 years ago he was overwhelmed, scared and utterly confused. My poor, poor Dad…

Of course, Mom and I were horrified to hear this news today and then distraught when we were informed that Dad will only be able to have very limited visitors for ONE hour a day. God help him. He is going to be all alone on this journey.

The upside to all of this is that apparently this course of action happens to approximately 30% of Sunrise’s Alzheimer’s patients (based on the 3rd party information I received today) and there can be amazingly positive results that emerge from the ultimate experience. Hopefully, Dad will emerge transformed, calm and peaceful. This is at least what we pray for him everyday. It seems to be the only thing we can really do.

Saturday, January 16, 2010 – By Guest Blogger Frank Firek, Jr.

My dad had a bad night last night (Friday).  He got upset in the middle of the night and started knocking over tables and throwing glasses in the center of the nursing home.  Sunrise called 911 and the police came.  When my dad saw the uniformed police he settled down as he recognized and respected their uniforms and authority.  (I was told today that he said something like he thought he was in a militay / war zone and was defending himself).  In the meantime, my mom was called at 2:30am and she arrived as the police were leaving.  My dad was calm and sitting down when she got there.  She took him to his bedroom and they laid down together.  He was restless, but they both fell asleep around 4:30 am.  When my mom awoke in the morning, my dad was still sleeping so she let him sleep and went home.

Amy, Frankie, Ashton and I got to the center today around 3:30pm.  My cousin Danny Firek was there and said my dad had been doing okay since he had been there visiting.  My dad was in a good mood but seemed tired, and was even less rational than normal.  He was “seeing” a lot more things that weren’t there than normal.  Like when he got on the floor to look at my shoes and said “It’s not fair that this guy (my left shoe) has 3 pillows and this guy (my right shoe) only has one”.  So we agreed that we would have to work that out with them.

We stayed the afternoon and all had dinner together.  After dinner my dad was falling asleep in his chair in his room so I suggested that he get ready for bed and he agreed.  I gave him his toothbrush with toothpaste on it and let him brush his teeth.  When I went back in to check on him he had the toilet seat up and looked like he was going to rinse his toothbrush in the toilet.  I quickly took it from him and rinsed it in the sink.  I then helped him get undressed for bed.  We took off his fleece sweatshirt and underneath he had on 2 undershirts.  We took off his jeans, then a pair of boxer shorts, then a pair of boxer briefs, and we left on his jockey shorts.  (FYI, my dad doesn’t own any boxers or boxer briefs!  Residents “borrow” from one another’s closets unknowingly).  I then put his pajamas on and put him to bed.  He went right out.  As we were packing up to leave he woke up and we all gave him hugs and kisses and wished him a good night.  By the time we left his room he was snoring.

I sure hope he has a restful night tonight!

Thursday, January 14, 2010 – by Fran Firek

 

GOOD  NEWS!! 

 

A room has become available for Frank at Sunrise of Northville, across the street from me.  Now I will have to travel 2 minutes instead of 25 minutes each way!

 

Move in day is scheduled for Monday.

 

I’ll let everyone know how he’s doing. 

 

Thank you all for your prayers and support.

 

LY, Fran

 

January 12, 2010 – TAKING A TIME OUT

(Real-time entry)

It’s been two weeks since I have stepped foot in my own house as I have been staying at my mom’s since January 31^st (when it was still my mom and dad’s).  What a long, emotional two weeks it has been.  But I finally packed up my things and returned home two days ago on Sunday night to try to get back to my “normal” life.  I had plans the next day to forego a visit with my dad for the first time since he’s been at the nursing home.  I thought these were things I needed to do.  But the transition wasn’t as flawless as I had anticipated.

Home less than an hour, I went to bed early not feeling so great.  My stomach was upset and I just felt crummy in general.  Throughout the night things got progressively worse and I started to think that perhaps I had food poisoning coming on.  I would get hot, then cold, and I was sweating but had no fever.  I became intensely dizzy and, in my coma state of sleep with an over-the-counter sleep aide, I’m not sure if I kept falling back asleep or if I kept passing out.  At one point upon waking up, my hands and arms were tingling and I actually took the time to write my symptoms on a notepad in the dark on my night stand in case someone found me there unconscious.  I considered calling an ambulance, but I was too much in an unfit state of mind to make a rational decision.  I thought I had awoken my roommate and asked her to drive me to the hospital (she had refused, telling me it wasn’t that serious if I didn’t have a fever), but I now realize that I either dreamt or hallucinated that event.  I woke up after noon the next day and, at that point, I could assess with a clearer head that something was still wrong. My vision was wobbly and when it intensified I would get severely dizzy and begin sweating.  I had just decided to somehow get myself to the hospital when my mother called me from out of the blue and then came to my rescue.

She and I spent four hours in the emergency room waiting for a verdict.  After an EKG, blood work and a physical exam, it was determined that I am having a stress-induced anxiety attack with vertigo-like symptoms.  The news made me cry with relief – and then with distress as I realized how everything has gotten the best of me despite my best efforts.  The most ironic part is that they put me on the same anti-anxiety pill that my father is now on at the nursing home to calm his nerves and emotions!  Wow, and I thought I was doing so well! 

It’s funny.  I thought I was dealing with this as best as possible: I’ve been analyzing my emotions instead of locking them away; seeking therapeutic measures to understand the process I am going through as I’m going through it; and documenting my experience as a promise to both myself and my dad in order to help others going through a similar experience.  That last part has even helped give purpose to the tragic events, making me feel like some good can come out of this all.

However, I guess the danger is that much of what I do in my spare time and for work (which lately has been mostly my blog/website and documentary movie in-the-making) is all based on Alzheimer’s – which doesn’t allow me much of a break from the topic of my personal life.  And because I’ve decided to make this personal experience open to the public, I haven’t saved many undisturbed places for myself to go when I need respite.  Between editing my dad’s autobiography for half a year recently, shooting my experiential movie for nearly three years, plus living through this emotional rollercoaster daily, I guess I’m just on overload.  When your eyesight gets wobbly, you start seeing the world through a wormhole and you’re have trouble breathing, I guess it’s time to assess your life.

I think my job now is to focus on some non-Alzheimer’s topics and figure out how to continue on with my life – which of course entails figuring out what “the rest of my life” truly means to me.  That’s a wide open sea, which the rational side of me knows means lots of opportunities, but the emotional side of me sighs and wonders where I’m going to go from here.  An income-producing job and dating probably land somewhere on that list, but there are still a lot of unknowns as I am forced to redefine my life and figure out what paths to take from here.  And there is such an emotional fine line for me to figure out regarding how often to visit my dad and how much to let go. 

Like I’ve said before, you never know how you’re going to react to a diagnosis of Alzheimer’s in your life.  It affects everyone differently in different ways and at a different pace.  This is apparently my current route to travel in order to get to the other side.

NOTE: In order to allow myself the necessary space to recoup so that I can come back clear-headed and healthy, I am inviting GUEST BLOGGERS to participate on this website for the next week.  If you’d like to share your thoughts, experiences, visits with Dad, or any other wisdom on this topic, please feel free to post something.  As I have to officially assign Guest Bloggers, I have only given access to a few people at this point.  If you’re interested, let me know or else simply type your thoughts using COMMENT under someone’s blog entry and it’ll show up on the site as a conversation thread.  Thanks for reading, caring and for participating!  ~Joleen

January 8, 2010 – A TURNING POINT?

(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

January 7, 2010 – EVERY DAY IS A MYSTERY

(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.

January 5, 2010 – THE KITTEN ROARS!

(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.

January 2, 2010 – THE HARDEST ACT OF LOVE

(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.