The War Continues

Just because I have completed telling about my Dad's fight,  doesn't mean my blog is done.  Oh no,  no,  no... I can't let the Monster get away with it! So, I know I've made posts on facebook about creating a page for my blog. I got shut down. Not many folks seemed interested.

Well... I've decided, to heck with it. No one ever started something worth talking about by waiting for people to talk about it. No,  I have to keep the buzz going, I have to kick start this train.  Well,  enough with the babble, I'm creating a blog page on Facebook. As soon as it's done,  I'll post links- so you all can share!  ;) 
Oh and a huge big thank you to all who read this! It makes me oh so happy that I can write down my story and my mind and people actually read it! Thanks!

The Final Round

Once again, this is very difficult to write. My writing process for this blog involves me reliving these moments in my mind. So,  as you can imagine,  reliving it all isn't an easy thing to do. Yet,  here we go. The final round.

August 10, 2005

Daddy was very weak this day. His breathing was getting worse and his anxiety level was spiking. The anxiety was draining all his energy. Not to mention that his morphine breathing treatments were adding to his lethargy, but it was better than seeing him gasp for air.

The hospice nurse, I believe his name was Tom,  was on his way. During his last visit he had convinced Daddy to let him insert a catheder. With his weakening muscles, Daddy was no longer emptying his bladder all the way and this could lead to an infection. Daddy was not happy,  but agreed to do it to avoid infection.

When Tom arrived,  he and the on duty nurse went to work on inserting the catheder. I went into the living room to wait.  I could hear Daddy grumbling at them, they were trying their best to comfort him. I'm pretty sure he was cussing them... they just couldn't understand him. Ha. After a good while,  they both stepped out. "He's resting, that took a lot of energy because he got upset. We couldn't get it in today... I'll come back tomorrow."

Daddy dozed for a while and then it was medicine time. He needed more liquid morphine for his breathing and an Attivan for him being so worked up. He told me he didn't like Tom very much... I could understand why. We laughed about that. The rest of the night was uneventful.

August 11, 2005
The day started out pretty normal. Daddy was really lethargic,  though. He kept complaining about his breathing.  I gave him more morphine to help. R came on duty, she was a welcome sight. Daddy recognised her presence,  but he was not alert like he normally was. As R and I discussed what we could do for him,  she glances at him over my shoulder.

"Oh my God,  Kristen... it's happening." I spin around to look at him. His chest was struggling to rise and his face was turning blue. His eyes were half shut, faintly fluttering. "Get out!  You don't wanna see this... no!  WAIT!  I dont want to tell you what to do! " We both briefly panicked before we caught our heads. This all happened within a moment's time.

R grabbed the nebulizer and put the morphine in it. As it came on I held the mask to his face. His eyes had closed,  but he was still taking slow shallow breaths.  R and I had tears running down our faces. "Can he still hear me? " I asked R.
"Yes. I believe he can." She stood beside him on the other side of the bed.

As I stood beside the head of his bed,  I leaned down at his head. I put my head close and started whispering,  "I love you,  Daddy." I rubbed his arm as I rested my head on his shoulder. I kept repeating,  "I love you, Daddy" as I watched his chest rise, slower and slower. Finally, his chest didn't rise. I turned to R, " Is he...?"
"Yeah..."

At that moment,  I felt it well up inside me... a hysterical cry. I began a sob, when suddenly a calm washed over me. Momma. She was there. She was taking Daddy. I did not see her,  but a child inherently knows their Mother's presence. She was in that room. The peace I felt knowing they were together again... it was like no other feeling. I felt peace. I was heartbroken to lose my hero,  but at peace knowing my parents were together again.  Together,  watching over me.

As quick as I felt her presence, I felt her leave. I felt Daddy leave with her. The room felt as if it had been sucked dry. I walked out with R. We shut the door,  he was no longer there, no need to linger. Now the hard part... phone calls.

The monster may have won the fight, but this is a war. I continue my Daddy's fight. Not in the sense of fighting within my body like my Daddy, but fighting on a larger scale.  Fighting for a cure. I fight in his honor.  I look forward to the day I can look up with a smile and tell him... we won,  the Monster is gone. I await that day with all I am.

Please share and spread awareness. Help me get to that much awaited day.  Thank you! 

Mid Fight Report: Blog Blunders

For reasons,  I do not know... Blogger spazzed on me and I had to repost twelve thirteen and fourteen. Due to this,  my comment from TwystedSam and all record of my wonderful 87 views were LOST!  I'm a sad blogger today. :(

Round Fourteen: Exhaustion

The beginning of August 2005 arrived. I was exhausted,  the nurses were exhausted and Daddy was completely drained. I could tell his will to fight was fading. He had no fight left to give. He was fighting to breathe and that took every ounce of strength he had.To look at him,  it was hard to believe that just over a year earlier he was a fully functioning member of society. From June 04 to Aug 05, the Monster had devoured him. My Daddy was every bit of 300 plus pounds. That August,  he was a skin covered twig. His frame was still big,  but his skin draped over him like a blanket. No muscle tone to speak of. His skin was ashen and thin from lack of nutrition.  He refused any tubes being put in. We had to constantly put one or two drops of water in his mouth to hydrate it, but it couldn't be too much because he couldn't swallow.He was needing liquid moraphine and moraphine breathing treatments to allow him to breathe. He was also on several pain killers to reduce the pain from his deteriorated muscles. Attivan was given to calm his nerves. He would panic when he couldn't catch his breath and it would make it ten times worse.The last few days I felt horrible,  but I was at my breaking point. I only slept a couple of hours at a time. I felt like I was the worst daughter in the world for getting frustrated with his numerous requests. He wasn't pestering me on purpose, I was his caregiver... who he relyed on for everything. But I was exhausted... I had past exhausted into dilerious.I remember just falling in the middle of the kitchen floor, onto my back and staring at the ceiling, with tears rolling down my face. I felt the monster mocking me. Tearing Daddy from my grips despite my best effort. I was so tired,  so exhausted... I could only imagine what it was like for Daddy. I cried and cried... because no matter what I did,  I couldn't save him. I couldn't save my hero.

Round Thirteen: Why I Fight

By mid to late July, the Monster had a tight grip on Daddy. I watched as the Monster left him bedridden and helpless. He could no longer eat solid food and could barely drink water without choking. His only nutrition was from Boost drinks. The Monster had taken from him everything you and I take for granted on a daily basis. Simple things we do without much thought:EatingSwallowingDrinkingWalkingTalkingBrushing your teethWashing yout hairScratching an itchRepositioning yourselfUsing a phone or remoteGiving a hugPetting a dog or catDrivingFishingPlaying a gameAnd finally, it will rob you of the ability to breathe.A slow suffocation.  I watched in horror as the Monster took my hero and left him relying on me and the nurses for every little thing. I wish the Monster was visable, because I'd love nothing more than to punch it in the face! Since it is not possible to actually punch it in the face, awareness is my punch. Awareness in the hopes that it will aid funding. Funding that can go to scientists,  scientists that can find a cure! This fight is personal! The Monster took my hero... I want to destroy it's exsistance! In the words of Team Gleason,  #nowhiteflags ! I will not give up on this... because if I can keep just one daughter from losing HER hero like I lost mine- that's worth it to me!Please help spread the word. Pass this along. Awareness is key. Thank you.

Round Twelve: The Damage

Life had settled back in routine and when R was on shift things were good. We worked well together,  she knew what I was comfortable doing and helping with and what I wasn't. The Monster had taken a lot of Daddy's dignity, I wanted to keep what little he had intact. Tasks such as bathing and changing were not things I did.

Unfortunately,  not all the nurses understood this. One tried changing him in front of me... she got an ear full. Others would talk to him as if he was incompetent or not take time to understand him. The damage was taking toll by the beginning of July. He was completely bedridden and had great difficulty speaking. I was his translator to most everyone. The only other person who was even close to my level of knowing his speech pattern was R.

Even with the speech difficulty, the Monster could not steal my Daddy's sense of humor. As translator, I would listen as Daddy spoke then I would repeat what I thought he said. This was followed by a head nod yes or headshake no. If it was a no,  we would try again. Wash, rinse,  repeat,  until we had it right. It became a game... a game that usually resulted in belly laughs for all involved.

One night in particular comes to mind- R was on duty and dozing in her chair. I was asleep on my matress beside Daddy's bed (I had not slept in my own room since Momma passed.) I was startled awake by hysterical laughter. I sat up to see R laughing so hard she was doubled over and Daddy was laughing so hard tears were rolling down his face.  Confused,  I asked what was so funny. Daddy just shook his head and eye motioned to R. R caught her breath and explained that she was dozing when Daddy woke her. She decided not to wake me and try her hand at playing the guessing game with Daddy. He said something several times and she said, "You want some... HOT SAUCE?!" He busted out laughing and so did she. I don't remember now what it was he actually wanted,  but it most definately wasn't Hot Sauce!

These were the good moments. Unfortunately, those were getting fewer and farther between.

Mid-fight Report: ALS News

ALS Advocacy leads to great things! 

Veterans Benefits

Advanced historic regulations at the Department of Veterans Affairs that designate ALS as a service connected disease. Veterans with ALS and their survivors now have access to full health and disability benefits, regardless of where or when they served in the military and regardless of how soon after discharge they were diagnosed.

24-Month Medicare Waiver

Eliminated the 24-month waiting period that people disabled with ALS had to endure before they could start receiving Medicare benefits. ALS is now one of only two diseases for which the waiting period does not apply, and the waiver for ALS is the only change Congress has made to the waiting period since it was first established.

Presumptive Disability

Orchestrated Social Security rule change under which people with ALS automatically meet the medical eligibility requirements for SSDI and SSI payments. This ruling allows people with ALS to access their benefits months or even years earlier than before.

http://www.alsa.org/advocacy/roadmap.html

Round Eleven: Bait and Switch

After all the haze surrounding Mommas death, life changed dramatically.  Everyone knew that it was time to get help for taking care of Daddy. The "H" word was being brought up. Hospice. For anyone unaware of this term,  Hospice care is for terminal patients. Its sole purpose is to keep the patient as comfortable as possible until the end.

I remember sitting around the table with my aunts and uncles while we set up everything for Daddy. Around the clock nurses and in home hospice care. I tried to be brave,  but I felt like in signing the hospice papers, I was signing Daddy's death sentence. The monster cackled over my shoulder... "He's mine..." Tears roll down my face.

The monster had pulled a bait and switch on us. He broke Mommas heart and distracted us from noticing how much more strength he had syphoned away from Daddy. As Hospice and the ALS association swarmed the house,  bringing in this and that,  it kept sinking in deeper. This is real. The house was filled with equiptment, most of it was terrifying. He now had a hospital bed, an oxygen machine, nebulizer, two wheelchairs, a lift chair, and a long list of medication.

The worst was the Hoyer lift. Daddy took one look and shook his head, "No." It was basically a cherry-picker (engine lift), with a sling attached. There was no way I was gonna trust that thing to lift and move my Daddy. Nope, I'll move him myself as long as I can.

The first nurse arrived,  a young lady not much older than myself. I'll call her "R" for the purpose of the blog. We hit it off immediately.  She took care of Daddy as if he was her own father. She was Daddy's favorite nurse. R was the best nurse we had,  but unfortunately I would find out that the others from this agency would not measure up to her standards.

Mid-Fight Report: ALS News

http://www.alsa.org/news/archive/debbie-matenopoulos.html

Actress Debbie Matenopoulos is scheduled to guest host on The View this Wednesday, July 10. She will use this as an opportunity to raise awareness for ALS. Viewers will even get the option to donate via text while watching the show! Later, Matenopoulos will tour a special center related to ALS treatment. The tour will be documented by a crew from Oprahs network, OWN.

I love seeing ALS awareness spreading! I hope someday this blog will generate awareness to a wide audience.  I'm pretty small potatoes right now... but hopefully one day it will happen!

So,  dont forget to tune in Wednesday! I hope I can,  but its not likely seeing as my reciever broke. :( So... watch for me! Later y'all!

Round Ten: A New Reality

The days to follow are a blur of fragmented memories.  I remember waking up Sunday morning,  feeling like it all should have been a dream. The harsh punch of reality quickly put me into a haze. I know people were at the house... I honestly can't remember who. Sorry. I feel bad admitting that,  but my honest memory looks like a fog. I know I functioned... I walked, I talked,  but that was pure survival skill. My brain was on strike, it was more than I could take.

My next burst of clarity was sitting next to Daddy at Mommas funeral. I remember leaning my head against him as we cried. I also remember my long time friend from childhood singing Amazing Grace for Momma. I remember listening to her angelic voice,  knowing how much Momma adored her singing. I locked eyes with her and I lost it. Next thing I remember is walking out. Holding my teddy bear and walking next to Daddy and his wheelchair... I scanned over the faces in the pews. Somber, sympathizing eyes gazing at me. It was too much. I feel my lip shake and my emotionless face once again disapears into a squinched, tear filled mess. My brain shuts off again.

Last thing I remember clearly about that day was sitting grave side with Daddy. It pours down rain and the bozo funeral directors sat Daddy and I right at the seam of the two tents. So as the preacher drones on about God and Him calling us home, which I had no intrest in hearing at that moment, my attention is caught by the constant drip of water falling between Daddy and I. I know Momma was laughing at me. Here I sat, at her funeral,  and instead of paying attention, I am focusing on this dripping water. Holes in the Floor of Heaven came to mind and I rested my head on Daddys shoulder and let the drips hit me anyway.

Next clear memory I have is my aunt (moms sister) teaching me how to write a check and how to pay bills. Most people get introduced to this gradually over time. I, however,  had to take the crash course. After being introduced to Mr. Checkbook, I remember I had recieved a checkbook cover as a graduation gift from my moms best friend. At the time,  I had no use for it... so I put it away. I ran up to my room and pulled it out of the drawer. For the first time I read the words on the front of it. Tears ran down my face as I read these words of my new reality:

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." -Jeremiah 29:11

Round Nine: Heartbreak pt 2

The quiet room is a small room in the ER that is lined with chairs and one small table. I sit down with my bear and stare blankly at the wall. A lady comes in and asks if there is anyone I can call to come be with me. Anyone I can call... it's like 1am. I ask when I can see Momma,  but she insists I need someone to come be with me. Crap. I left my cell phone. She says I can use the phone on the table.

Numbers... whose number can I remember that wont be mad I woke them up? The only number that came to mind was my Dad's brother and his wife, my uncle and aunt. I dialed and my aunt picked up. Voice shaking, I said, "hey, its Kristen. They brought Momma to the hospital, can you and (their daughter) come up here? " "What? You mean your Dad? " "No... Momma... Daddy is at home,  can you send (my uncle and their son) to be with him, please. I know he's scared and our neighbour is with him right now." I don't remember much after that until my aunt and cousin arrived. 

The medical staff waited for my aunt to get there before they came in to speak with me. The following is how I remember it happening. I look up to see a solemn looking man in a white coat. He blankly looks at me and says..."I'm sorry..." and that's all I heard. I let out a deafening screech and burried my face in the top of my teddy bears head. I hear my aunt say, "Oh my GOD! No!" I feel her kneel in front of me, grasping my hand. As I lift my face, I feel a sudden rage corse through me. My eyes narrow at the doctor. "You... you mean to tell me she has been to doctors ALL THIS WEEK and they DIDN'T KNOW THIS WOULD HAPPEN! YOU MORONS!" I believe I said more,  but I'm not sure.

The nurse or human resources person or whoever she was then asked who my aunt was. She then asks, "Where's her Father?" It felt like time slowed... the monster was there and I was about to find out his name. My aunt looked at me, tears in her eyes, gasping my hand tighter. She turned to the nosy woman and said, "He's at home... he has Lou Gehrigs Disease. " She looks back at me and says, "I'm sorry... I know you didn't know." I think I said its okay... I don't remember. All I remember is my head searching. .. Lou Gehrigs. .. Lou Gehrigs... he, died. It's real. It's really happening. No more nieve hope.

On the way home, my head kept recycling the same two thoughts... Momma's dead and Daddy's dying. I remember car lights and street lights hitting my exhausted eyes. The road and trees passing by quickly, but all my mind kept thinking was... Momma's dead, Daddy's dying. 

"You are alone... all alone, by the way... I'm the monster." His sinister laugh wrapped itself around my shoulders where it would stay, its weight feeling like the world.

Mid-fight Report: ALS News

Wonderful article about life with ALS.

http://tablet.olivesoftware.com/Olive/Tablet/AtlantaJournalConstitution/SharedArticle.aspx?href=AJC%2F2013%2F06%2F30&id=Ar01902