Hallelujah!!!

My Dad was finally transferred out of Botsford and into his new dwelling at:

Courtyard Manor of Farmington Hills
29750 Farmington Road
Building 1, Room 12
Farmington Hills, MI 48334

(248) 539-0104

He was in the Botsford Hospital Geri-Psych ward for 5 LONG weeks.  It is such a relief to get him out of there!  When he was admitted, he had social skills and interest, you could still usually find a sparkle in his eye, and he had enough energy to want to dance and sing all the time.  Unfortunately, that is not the way he is coming out.

He was supposed to be picked up by ambulance today at 10am and brought to Courtyard Manor.  I was there waiting with my Mom, and around 11am we called the hospital to check on his status.  He had not left yet, so I headed into work.  About 1/2 way to the office my mom called to tell me he was on his way (it figures!).  When I got there, he had already arrived.  (Watch video: AMBULANCE)

When I went inside, he was already in his room.  The on-staff nurse was checking him in when I got into the room.  He was slumped forward and pretty unresponsive.  We tried to engage him in conversations, but mostly, all we could get were some mumbles from him. (Watch video: DAD IN NEW ROOM)

My mom then started to unpack his things, and I stayed with him to massage his shoulders and talk to him.  He has lost soooooo much weight.  I could feel every bone in his shoulders and back.  I told him we needed to start getting some weight back on him and get him back into marathon shape and all he could whisper was “OK”.  He was still pretty unresponsive and sat with his head slumped forward.  I have to be honest, I had a hard time believing that this was really my dad.  I didn’t see any of him in there today and I am very sad.  No one should have to go through this.

My mom told me about a conversation she had with the ambulance drivers before I arrived:

The ambulance drivers told me that everyone at Botsford was hugging him and saying goodbye to him.  The staff told the drivers what a wonderful man Frank is.  They don’t know the half of it.

We got Dad up out of the chair to move when his hospital bed arrived.  My mom took one arm and I took the other, and all he could manage were 1-2″ baby steps.  He was very hunched over, i.e. his spine was almost parallel to the floor.  We asked him to stand up as tall as he could and he only got about 3/4 of the way there, but his head still hung forward.  Once the bed was in, we sat him down again.

My mom sat with him for a while and tried to comfort him.  If you look, you can see in this video that this is very emotional for her as well.  I just hope she continues to have the strength to get through this.  She doesn’t like to ask for help and she usually turns me down when I offer.  So I think we all should probably just insist that she let us take her out and help her get her mind on some other things.  (Watch video: MOM AND DAD)

I left a little before lunch and my Mom stayed with him.  She told me he had a good lunch, used the bathroom, and then went to bed.  It had already been a long, tiring day for him.  On my way back to the office I realized I was hungry so I stopped at Greene’s Hamburgers in Farmington.  Greene’s was a hangout of my Mom & Dad’s when they were in school and dating.  They also had their Surprise 45th Wedding Anniversary Party there just this last August.  Man, it is so hard to believe how much worse my Dad has gotten in just 7 months since that party!!  It takes my breath away just to think of it like that.

My mom said the nurse at the Nursing Home said they may try to reduce some of Dad’s meds to see how he reacts.  I am very interested to see the results of this.  What I would actually like to see is what he would be like if we took him off of all his meds for a week.  I can’t help but wonder how much of his current degradation is drug induced, and not a result of his Alzheimer’s.  But I guess I may never really know the answer to that one.

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(Real-time Entry)

The experience at the psychiatric ward has gotten worse before getting better.

Following a positive and energized week for me last week, I then visited Dad over this past weekend and was throttled by what I saw.  The hospital had him so drugged (in their ongoing effort to subdue his violent outbursts and reduce his hallucinations) that all he could do was mumble unintelligently while strapped into a wheelchair bent over at the waist unable to hold himself up and drooling. My God, how could there be such a horrific change in just 5 days??  I began struggling with what they’re doing to him, I became very angry at the medical and legal systems for thinking this was the best way to treat a sick person, and I began that oh familiar spiral downward…

Saturday’s visit was the worst one so far, partially because I was so unprepared for what I was going to find. Sunday Dad was still unable to use most muscles in his body but he was no longer drooling and was able to utter partial phrases, which I tried to understand by putting my ear to his lips.  At one point, he said I should call my cousin Debbie.  I said, Sure, Dad, I’ll call Debbie.  And why don’t I call cousin Karrie as well?  She sent you a big hug today and I could tell her you sent her a hug back! He said, Just… call all the girls… and tell them. I asked, What do you want me to tell all the girl cousins? He said, Uncle Frank… is dying. Tears welled up in my eyes and my Mom’s.  We were grateful his eyes were closed so he couldn’t see us.  I said softly to Dad, Is that what you think is going on here, Dad? That you’re dying?? He said, Pretty much… that’s what I see… going on. And he fell asleep and we silently cried.

I experienced a couple horrible days following those visits with a lot of tears and an unmotivated heavy heart.  I only started perking back up after Mom reported last night, Wednesday, that when she walked in for her visit, she found Dad walking around with the help of a nurse and he had been talking about the love of his life, Fran, and then he said, And there she is! The doctor had just changed Dad’s antipsychotic medication from Zyprexa to Risperdal (I believe with the other 5 meds remaining the same) and the results seemed nearly instantaneous and unbelievable! (NOTE: It is believed that by altering communication among nerves in the brain and by altering communication through neurotransmitters, this class of atypical antipsychotic drugs can alter irritability, resistant depression and the psychotic state.)

I have to admit, I woke up this morning a LOT easier and faster!  It does seem that when Dad’s having a good day, I have a good day; and when he’s not, it’s very bad news for me.  Interestingly, I am undoubtedly the only family member who is this affected by it all.  I’m also the most emotional person in my immediate family, besides my father.  And I do spend a lot of time and energy mulling over everything so that I can report back on it for my movie and website.

Does this sensation of me being so empathetic to his situation simply make me a dedicated and loving daughter and a good storyteller as a result of our close relationship? Or is it a detrimental effect that is harming me and my health and my life? My God, do I unconsciously believe that I need to suffer along with him?? I need to figure this one out so that I can support him without being dragged down by the awful set of circumstances that is undoubtedly going to continue to be in our lives.  As they say, I need to get a grip.

P.S. Today the 2 in-home care workers who stole from us went before a judge at The Frank Murphy Hall of Justice in Detroit (home of the Wayne County Circuit Court) and pleaded GUILTY to ALL counts!!!  Their trial and sentencing is set for March 19, 2010.  That news, on top of Dad’s turn around, was the perfect platform for my mother to board a plane today for Florida for some much needed rest, relaxation and decompression.  I hope she finds what she needs.

P.P.S. I wrote this blog this morning.  Below is video following my afternoon visit today with Dad.

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.

 
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
 

(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)

My dad is fading away now by the day.  His degradation milestones used to be quarterly, then monthly, lately weekly, but now it’s daily.  The magical sparkle in his charming blue eyes that used to light up my world is now totally gone.  I catch him looking through me sometimes when I speak to him or, worse, he doesn’t look in my direction at all. 

Any more than two people in the room talking now seems to be too much for him.  In those moments, he dips out of what’s happening in the room and gets lost in his own private world.  It’s like I can literally see and feel him floating away from us… 

In those moments of disconnect, I find myself sitting on the arm of his chair, stroking his hand, rubbing his shoulders, scratching his back, somehow lovingly touching him to try to reconnect.  When he looks into my eyes and there is some person-to-person connection, as small as it may be, I feel as if everything is going to be okay.  At least I got him back for the moment!

I am seriously trying to figure out how to measure what’s left of him.  I mean, when he looks at me, is the connection 10-percent of what I used to be able to expect from him when he was my powerful, loving, doting father?  Or is this phase really 20-percent?  Or are we down to 8?

In my desperation, I get in his line of sight and gently grab his hands, trying to have just ONE MORE moment with him, trying to coax him back to a place where we can connect one more time… 

It’s almost pathetic how you start clinging to the small percentage that’s left.  How, out of desperation, you get in his line of sight trying to have just ONE MORE moment with him, trying to coax him back to a place where you can connect one more time.  And then you find yourself actually grateful for that one smile or one more “Oh, hi, Jo!”  God almighty, this is such a cruel, nasty disease on so many levels!  I miss my buddy!  And my poor mother – when she got home yesterday and said hi to Dad, he perked up, reached out to shake her hand and said enthusiastically, “Hi, I’m Frank Firek.  It’s nice to meet you!”  You can almost hear your heart breaking.

So today was Dad’s in-home assessment by the staff of Sunrise Assisted Living.  The purpose of the visit was to determine his needs and level of cognition and to then place him properly on the appropriate floor or ward of the home.  Mom has been very worried that when they came Dad would be having a great day and they wouldn’t know the truth about how bad he really is.  Well, that’s not at ALL what happened today.

Mom said Dad was having a bad day when they arrived; he was really out of it.  When they asked him how many children he had, he didn’t know.  Mom says he didn’t even take a guess.  Next, they asked him for the names of his children.  Again… nothing.  Then they asked him for just ONE name of ONE his children… and Dad couldn’t come up with any of our names.  Mom then tried to connect with him, told him look at the family portrait on the wall and try again.  Nothing.  No one was home.  My mom was all alone.

My mother and I visited Sunrise Assisted Living today.  Under her one condition: that we wouldn’t tell my father.  Agreed.  I mean, it’s not like we’re signing him up for anything; we’re simply doing necessary research in pieces.

The building is a mere half mile drive from my parents’ driveway; its location couldn’t be any more perfect.  The place had a white veranda deck sprinkled with big white Adirondack rocking chairs and lots of wall-length windows.  Inside, white paddle fans stirred the clean air and it truly looked like our home away from home, Hilton Head Island, SC.  If you were to remove the “where” from the formula, it seemed comfortable and homey.

Mom and I met with Sylvia, the Director of Community Relations.  She was a pleasant person, a caring older woman who seems to love her job dearly.  She made us feel comfortable about our discomfort in being there.  She asked about us, our family, our fears, our hopes, our current state of mind.  She said she looked forward to meeting my dad someday – and somehow I believed her. 

She offered us a tour of the first floor.  There are different types of rooms you can choose, from simple to more spacious.  There’s a resident dog and cat – Dad loves dogs.  There is a long list of offered activities, from arts and crafts to visits to the zoo.  We learned that, for an extra fee, we could even personalize his care, like having someone run with him twice a week.  We could almost see him fitting in here – if he absolutely one day had to.

Then we saw the cafeteria.  The hardest part of the visit was the cafeteria.  It was clean, but I wouldn’t call it pleasant – everyone seemed to be eating in silence.  No, I cannot see my ultra-social dad fitting in here.  He’s so much more vibrant than this.

We left with polite goodbyes.  We walked out in silence.  We are not ready for this.  Luckily, he’s not ready for this.

I feel like I’ve been researching Alzheimer’s information for two months straight (and I have!) on top of a full-time job.  I now know that there was a very unfortunate detail overlooked the day my dad was diagnosed with Alzheimer’s: the doctor’s office didn’t give my parents a New Patient Information folder which is standard upon diagnosis.  Not knowing this (and that I could’ve just called the office to get it!), I have taken on all sorts of research from scratch: what to expect with Alzheimer’s, where to find support groups, how long they may live, things you need to know, etc.  So, I’ve been immersed in this overwhelming research project – on top of freaking out and grieving myself! – trying to find out what steps we need to take, an expected timeframe of disease progression, where/when support groups take place in our area, etc.  I took it upon myself because I knew my mother couldn’t handle it right now and that this information would be her salvation.  I still get furious all over again when I allow myself to stew on the fact that the doctor’s office messed up a simple detail which has in turn caused me so much grief!!

Along my travels, I have read SO much information about Alzheimer’s.  However, one publication said something so poignantly that no other did: in the final stage of Alzheimer’s, a patient will ultimately forget how to swallow and then how to breathe – and they will die.  This fact sent me sobbing and over the edge!!!  To try to picture that happening to my dad – oh my god!  That is the hardest morsel to digest so far.  It’s now not just the fact that he’s going to die; it’s how he’s going to die!

According to the Alzheimer’s Association and other research, Alzheimer’s Disease can be broken down into 7 Stages.  Based on this information, I (desperately) calculate that my dad probably entered Stage 2 in the year 2000 when he first started noticing changes.  He probably entered Stage 3 in 2002, which was when he was initially tested and told that he may be entering the very beginning stages of dementia.  He was in Stage 4 when he was retested in 2007, which was when he was diagnosed with Early-Onset Alzheimer’s.  Then, based on this 7-Stage sliding scale, I “predict” that my dad may enter Stage 6 by 2012. 

To me, Stage 6 seems like the final stage in which the person will cease to be the person you’ve always known.  They’ll know their name but not their history; they’ll no longer be able to function on their own for daily activities like dressing, bathing, toileting; they’ll begin hallucinating – and wandering.  According to the published information, the person with Alzheimer’s may survive anywhere from 3 to 20 years.  Well, that’s not very helpful!  God, I just wish someone could tell you WHEN shit was going to happen.  But it’s all such evasive information; I think that’s part of the constant torment!