Tuesday, November 19, 2013

~Prepare yourself~ A story of a true American Veteran and Hero

~Prepare yourself~ A story of a true American Veteran and Hero

Every year on Memorial Day and Veteran's Day everyone is sidetracked of the real meaning behind the holiday.  Stores have huge sales to which most people flock, forgetting the real meaning of the day. Every day there are more soldiers injured in war zones. Our Veteran Hospitals often offer care that is less than adequate and quite frankly, we often fall short of taking care of those who put their lives on the line for us.

My father served in the Korean War. Many of my relatives served in various wars including the Civil War, World War I & II, the Korean War, Vietnam, Desert Storm, and the Gulf War among many others.  Many of them suffered from war related illnesses and injuries.

I went to school with Chuck Giza. Chuck is one of those guys that you could always count on. He was always polite and never got caught up in the typical school harassment that most kids fall into.

After High School Chuck went into the Army and served for 22 years, some of it was in Saudi Arabia. I would like to share Chuck's story with you. Chuck and his wife Annette write the remaining portion of this post. Annette stands by his side and with their combined faith, they have gotten through things that most of us could never begin to imagine battling on a daily basis. I would like to thank Chuck and Annette for allowing me to share a portion of their story with you.

The story that follows begins with Chuck's first entries on The Caring Bridge. To read his whole story, please visit http://www.caringbridge.org/visit/charlesgiza Annette started the Caring Bridge blog back in 2012 to help keep everyone up to date without countless repeat emails. His condition has declined considerably since then. Chuck and his family remain in our hearts and prayers and I hope that others will do the same.

(The following is Chuck's story in his words, I just typed it for him since he can't. ~ Annette) After serving in the Army for 22 years, I retired on January 1, 2000. I retired with multiple service related health conditions & disabilities. I had some additional symptoms develop as time went on, but they were thought by the doctors to be side effects from medications and from my health issues. We had no idea what was to come. This condition started off slowly with rare and minor slurred speech, occasional stumbling, sudden mood changes, weakness in my legs (which wasn’t unusual due to the wounds and injuries to my legs), and other minor issues. As time went on, about 4 years after my retirement, I noticed a slight increase in these things. Then again around 2006 some symptoms increased just a little more. It was still said to be side effects from some medicines I had to take. After we moved to PA in 2007, my symptoms increased again. I suddenly started falling off and on, not just stumbling. My speech would sometimes be very slurred to the point that my family could not understand me. I would forget things or not hear things at times. Again it was said to be side effects from my medicines and my medical issues from the time I served in Saudi.

In the Spring of 2009 I woke up one morning and could barely talk – just slurring noises, I could barely stand, I was falling, and very dizzy and weak. My wife thought I was having a stroke so she took me to the doctor. After numerous tests and things being ruled out, I was sent to a specialist. This started a 6 -8 month period of numerous doctors, specialists and tests to find out what was wrong while my symptoms did continue to very slowly get worse. Some days I was fine and other days I had some symptoms.

In late summer of 2009 I was given a diagnosis of Ataxia. Ataxia is a condition where the cerebellum in the brain degenerates and surrounds by fluids, therefore affecting all neurological functions and motor skills in the body including balance, speech, gait, swallowing, etc. Ataxia is a progressive illness that there is no cure or treatment for. There are over 200 types of Ataxia, 3 of which they can treat symptoms, but I don’t have one of those 3. Ataxia gets worse as time goes on.

One of the first things I was told by the specialist when he gave me the diagnosis was that it eventually causes the body systems and functions to start shutting down, and the gag reflex to stop working so choking becomes a hazard and a feeding tube becomes necessary later in the illness. They said it could be 6 months or 6 years before mine progressed to that point, there was no way for them to know, but I did start having symptoms years before when it was too early to diagnose this. I was also told it is a terminal illness.

I have been homebound since July of 2011 and VA has been very generous in taking care of my medical needs, including having home health (Registered nurse/ Nurse Aid/PT/OT/Speech therapy) coming to my house since last summer, also providing transportation for doctor appointments and supplying medical equipment and other needs. My speech has progressed to where VA has ordered a speaking device which will talk for me when needed. My mobility limitations have progressed to the point that I can’t walk without assistance and a walker, and even then I am very slow and off balance and I do have frequent falls, so I also have a wheelchair. I have been having progressive vision problems for about a year & I am now told that the Ataxia has affected the muscles around my eyes preventing me from focusing on things. And the past few months I have started to have difficult & labored breathing. The cause of my Ataxia is unknown. The only common thing all of the doctors have mentioned is the chemical exposure while I was in Saudi.

I had a sudden turn for the worse in early January ended up with me being hospitalized for 3 weeks. The results of that hospitalization and the new health challenges ahead are being posted in the first journal entry.  I am at a point of being a Lou Gehrig’s (ALS) patient, but I don’t have Lou Gehrig’s disease.

I AM GOING TO FIGHT IT EVERY STEP OF THE WAY! And I know the Ultimate Physician and that if it is God’s will, He will heal me! That is mine and my family’s hope!

Prepare yourself.....
By Annette Giza — 14 hours ago
"Prepare yourself" is something those in the medical field tell families of patients who aren't doing well, or who were in a bad accident, or who have terminal cancer... those who are hooked up to all sorts of machines and tubes, who aren't expected to make it.....  When you are working in the medical field,  you often hear or even say the words "prepare yourself" to a patients family and loved ones.

Prepare yourself...  Those 2 words make all the difference in the world. They take on a completely different and whole new meaning when they are being said to you, when you are on the receiving end of those words....   Prepare yourself - - - for the worst...

I don't scare easily, at least I don't think so. I think, by the grace of God, that I am a pretty strong woman. I lean on the Lord and He gets me through. I have been through a lot of things in my life that have been scary. Everything from normal things we all face in life, to my children's illnesses, accidents, serious surgeries and complications, blood clots, miscarriages, my back injury, an abusive ex, long distance moves, family members who have lost the battle with fighting cancer,  my husband going to war, my husband jumping out of airplanes, deaths of loved ones, my husbands illness he fights now every day...  and I try to stay strong.

A lot of things in life can be scary, are scary, but I don't think I was ever in my life as scared as when I went to check on Chuck that morning a couple of weeks ago and found him gasping for air and turning purple... That is until we got to the hospital almost right behind the ambulance... They took us right back in to the trauma bay and already had Chuck hooked up to machines, took  X-rays, cut his clothes off of him, had run multiple tests, had numerous tubes & IV's hooked up, had Chuck bagged & on oxygen...  That was even scarier...

Then as Chuck lay there gasping for air, the critical care team doctor came in and looked across the bed at me and said "I'm sorry, prepare yourself, he might not make it"....   What....?  Whoa... back up....  "Prepare myself"...? That had to be the scariest moment of my life...   My mind was screaming no, you're wrong...  but in my heart I knew, I knew how serious it was and I froze. In that moment my body had such fear coursing through me that I literally froze on the spot and felt my heart sink so deep into my stomach that I couldn't breath...  I felt like the doctor had just punched me in the stomach and knocked the air out of me... I felt like everything started moving in slow motion, like I was watching this happen but I was not really there.

The doctor then proceeded to ask about what Chuck "wants",  and other things like does Chuck have advanced directives, a living will, is he a full code, a DNR, medical power of attorney... Then the talk of the ventilator and the possibility that if they had to intubate and put my husband on a ventilator they may not be able to take him back off of it. The doctor again said those 2 words - "prepare yourself", he then said "I know this is hard but it is easier to make these decisions in the light of day then during the middle of the night in an emergency situation."  I answered the questions, we made decisions and gave the answers...  Then the mad dash by the medical personnel to get Chuck to the ICU, the waiting in the ICU family room until they get him settled and hooked up on more machines and meds. Then seeing him like that - suffering so much just to try and breath...   SCARY, very scary!  You can't possibly be prepared for that...

I keep replaying that day in my mind. I keep replaying the few days prior. I keep telling myself "you should have known, " I keep asking myself how did he get so sick over night? I keep asking myself what did I miss? I should have known....  But there was nothing in the days prior. He got that sick literally overnight.

Scared...?  Yes, definitely!  I am afraid to find him like that again. I am afraid to go to sleep because I am afraid he will need me and I won't hear him. I am afraid I will wake up in the morning and he won't.  I am afraid when I hear him start to wheeze - I jump up and check his oxygen and breathing. I am afraid to leave him alone for even a minute. I am afraid every time he eats and starts to choke. I am afraid he is getting pneumonia again every time he starts to cough.  I am afraid that he is going to leave me way too soon...
So, "prepare yourself"...
How...?    How do you do that...?  How do you prepare yourself to lose a loved one...?  to live without them...?   How do you prepare to say goodbye to your spouse...? How do  you prepare to go on without them?  We were supposed to grow old together.. He is only 54 and he has been so sick for a few years now, getting sicker by the week.  I am angry, I want to shake my fist at the heavens and scream WHY???  I want my husband to not be sick.  Sometimes I wonder if it would be better to not know what is going to happen to you or when you are ill and only going to get worse.  We are living each day knowing what is coming and it is very hard, very scary to deal with it...  Even though we know, we can't possibly be prepared.  But then I also think that knowing makes each day that much more precious and makes us grateful for just one more day together....

I have a constant heavy weight on my chest, a deep crushing pain that just won't go away... The pain of knowing that my husband is getting worse. Seeing him get worse, Knowing every day that he has an illness that will result in premature death. An illness that will slowly shut his body down, that IS slowly shutting his body down a little bit more every day. An illness that there is no cure for, no treatment for, nothing they can do for...    If anyone knows a way to deal with that, please, please, tell me. I really need to know how to do this...

I'm not prepared...   I may not know what tomorrow is going to bring, but I do know that those 2 little words  "prepare yourself" will never have the same meaning again....

Chuck's health:

~ His outlook -  Well considering all he is going through, considering all he will go through in the weeks to come, his outlook is good. He often says to me that he will keep fighting and he won't give up. He says that things could be worse, there are others out there who are worse off then he is so he is ok.  He always thanks me for being here and taking care of him, for loving him. He always thanks Jason for being here and taking care of him. He thanks Joe as well. Joe comes over every chance he gets and lends a hand with whatever we need.  Chuck tries to stay positive and is always trying to joke around and not let things get to him - even when he was laying in the ER gasping for air. The trauma nurse that was taking care of him had recently come home from the war. He was training another nurse who was scared when she saw how bad Chuck was. He (trauma nurse) told her to go ahead and get a 5th IV line open so they had enough running in case Chuck's veins started to collapse. Well she was scared to try. She said she hadn't done it on her own yet and she was afraid she would hurt him.  Well there was Chuck laying in the bed barely able to breathe, but he is Chuck and always tries to make other people feel at ease and joke around when he can. So he struggles to lift his arm up to the oxygen bag and mask, pulled it out just a little, just enough to try to say something, and then he looked at her and gasped out "chick - en  shit" and smiled before putting the oxygen back in place and putting his head back down. He was the patient and he made everyone else laugh! That's my husband! Please pray for him to keep his courage and the positive attitude that he has.

~ His over all condition is guarded with additional decline expected. The ataxia is progressing as it is expected to by the doctors. It is just the amount & speed of progression and what parts of his body are effected that are the unknowns until it happens. Though he is not paralyzed, I was recently stunned a little bit when one of the technicians referred to him as a paraplegic now because his legs barely move. He often can't feel any sensation in his legs. He can't tell if they are moving or not. When he tries to move his legs, more often then not, he thinks they are moving but we see that they aren't. He says he is telling them to move but he can't feel if they are moving. The same thing is starting to happen with his hands/arms occasionally. He can't even move himself over in the bed. He can't roll over on his side, he can't scoot over at all, he can't even move his upper body over. He can only raise his head or move one of his arms.  He can't feed himself at all now unless it is something he can pick up with his left hand - like a piece of a sandwich or banana. Often he needs help getting a drink as well. The shakes and tremors are getting worse in his arms and legs. He is constantly shaking and very jumpy. His breathing is often somewhat labored (though not always wheezing and raspy which is a blessing). It is getting harder for him to chew and swallow.  He says he is going to keep fighting, and fight he does. Everything is a fight for him. So when you take a drink, take a bite of food, go to the bathroom, take a shower, get in bed, sit up in bed when you wake up, get up out of bed, put a shoe on, change your clothes, shave, wash your hair, go outside, watch a sunset, breath.....  When you swallow, raise you arm to put food in your mouth, pick up a fork to eat, a glass to drink, comb your hair, reach out to hug your loved one, watch tv, read a book, talk, communicate..... Whenever you do any of these things - think of Chuck and the fight he has every day just to hold his head up, and think of the countless others out there who can't do any of those things either...

So for now we will still take just one day at a time.  We are still praying for a miracle. Please keep praying...  God bless...


I ask that you please remember Chuck and Annette and all of the Veterans who have fought to preserve our freedom and often suffered consequences. Please respect them when you see them. Without them, we may not be here.

Monday, November 4, 2013

No matter what you put in an obituary it never tells the story you want the world to know. Catherine was a mother of four but she was so much more than that. She was like a second mother to me. For the last four years she has lived at Sunrise of Fox Chapel aka Concordia of Fox Chapel. I cannot begin to say enough about the staff there. In the times that we could not be there, the ladies that treated her like family. They laughed with her, listened to her stories and even gave her those extra midnight snacks that she loved so much. They truly took wonderful care of her. For the longest time I spent three days a week helping with her and spending time with her. Sometimes she knew me, sometimes she didn't. As hard as that was, it didn't matter. What I found out through the stages of the disease of Alzheimer's that I would never have known any other way was in many ways a blessing of sorts. I had never really known anything private about her life growing up. Spending time with her as she would sundown, I learned so much. We sang together, we visited her past through the vivid memories she held so dear. Her mother died at a young age and she was most certainly a tom-boy. Every day she would swim across the Allegheny River in Verona. She loved the water so very much. She used to drive the family boat every day to take her father and brother's to work. She would swim to the islands in the Allegheny River and climb the trees and imagine she was on a desert island.

Sometimes she thought I was an old childhood friend and we would re-live roller skating, dancing, singing and enjoying life the way she did so many years ago. We held hands and talked about boys and eventually I learned the romantic love story of Catherine and Vince. All the beloved details of their romance, their engagement and eventual marriage was so beautiful to hear. They were stories none of us had ever been privy to and yet to her, they were present day.

In those hours, days, months and eventually years; I learned who Catherine really was. She was an amazingly strong woman, wife and mother.

As she began to fade and her memories of us also faded we became friends of a different kind. It was never a chore to be with her, not even at the end. Although she became speechless and unable to walk or eat by herself, there were times that she would look at me and give me that special wink she always did with her left eye. We held hands, she so loved the touch of another. To her, that was so special. She would snuggle against you and hold your hands and just be content. She communicated by touch in such a special way.

The night she passed away we went to see her and tell her how much we loved her and that it was time to be with her family in heaven and that when God and his angels came for her, to go with them and know she would always remain in our hearts. It wasn't easy, it still isn't. But even though she only took a breath every 45-60 seconds and was completely comatose, when I told her I loved her and it was time to be with her mother again, I saw that left eye flutter and her glance came down for a moment. It was that moment in time that I was sure she knew who I was and that she would take with her the memories of our times together, at least I hope so.

The holidays will never be the same without her. She always looked forward to me having Thanksgiving dinner here at our home and having all my themed trees & garlands up for her to see. She loved all the decorations; her eyes always lit up like a child on Christmas Morning. Christmas Day we always went to their apartment, so Thanksgiving Day was her day to be mesmerized. It will be hard to not have her with us this year. Our daughter is having the family dinner this year, it is too soon for me to go through it all right now. I will however, think of her as I decorate for Christmas in her honor this year.

Vince is holding up as well as can be. I can't imagine being married for 66 years to the same person but hope to find out. There were good times and bad, but their love never faltered. We are helping him, as a family to make it through this next chapter of his life. He is 92 and plans to live to be 100. I think he can do it although he misses the love of his life so much. He has dementia and has good and bad days but is now in a facility that allows him to come and go but provides meals, housekeeping, trips and so much more. It is a blessing to know there are people there when we can't be.

Catherine, you left a legacy and a beautiful family that will remember you always. Your warmth, your kindness, the many things that made you "you", will always be here. I look forward to the day when we are reunited again. We can dance, sing, swim or whatever you want. It will just be nice to hold your hand once again and tell you how much I love you.

All my love,