(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.

Advertisements

(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)

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.

Mom and Dad are home and I rushed over today to see them!  When I got there, Mom and Dad were nostalgically flipping through a photo album on the living room couch.  We hugged, I love you’d, and gabbed about their trip.  After a while, Mom excused herself to go into the office to check emails and I continued to flip through the album with Dad.

We got to a picture of our family at Xmas maybe 6 years ago.  Dad asked with a scrunched brow, “Who’s this?”  I said lightheartedly, “That’s us, Daddy – you, Mom, Frank, Todd and me!”  He looked at the photo for quite some time.  Then I turned the page.  But he stopped me, turned the page back, pointed to the picture and said, “But who’s THAT?”

OMG, my dad didn’t even recognize me!!!

Given – I do have black hair now.  I grew up blonde, was blonde in that Xmas picture,  and Dad knew me most of my life (and his) as a blonde.  But I’ve been black for probably five years now. 

OMG, is my dad going to start NOT recognizing me??  Does it really start THIS fast?  You’ve got to be frickin’ kidding.

Crap.  Maybe I should go back blonde to help him out.  Maybe I should wait until me as a brunette is really unrecognizable to him and THEN go back blonde.  If I go blonde right now, maybe THAT would confuse him even more???  Geez, I don’t know how to sort this out…