The End is Truly the Beginning

The title of this last post says it all as Dad has ended his journey on Earth and has begun the life we all dream of in Heaven. Dad took his final breaths surrounded with love from family, friends, and followers of this blog.

Dad went peacefully. After he was given a bath by both Mom and Auntie Lori, he honestly had a smile on his face! For somebody who desired to make others lives better, I would not expect anything less.

Lastly, I need to thank everybody for following his blog. I have no doubt in my mind that your support kept him strong, thus allowing him to bless us with his presence for 2 years. I cannot put into words what this blog has done for him and I know he hoped that it would inspire others as well.

You have all prayed for Dad during this time and I know that he will be watching over every one of you from Heaven.   

--- Sammy

Sorry for the Delay

Hi everybody,

Thank you for being patient. The family has gotten many phone calls and Facebook messages asking how our situation has progressed; we really appreciate the continued love and support! From now on, it is no longer possible for Chuck (Dad) to write his blog posts without aide. Therefore, I (Sam) will be finishing off his final posts. In the past couple weeks, we have gone through many changes. The most significant being a morphine pump connected through my Dad's chest port that will continually release a dose of pain medication. Every week, our hospice nurse has increased that dose in order to make Dad more comfortable. With that comes some challenges for Dad. As you can guess while reading his posts or knowing him personally, his pain tolerance is extremely high (a trait apparently I did not seem worthy to receive!) What makes this next step so challenging has nothing to do with pain, because it is managed, but rather his mental state. My Dad has always been a source of great knowledge for my family yet with the combination of cancer and medicine, his brain function is slowly deteriorating. Subjects that would be routine for him are now becoming more confusing. He knows what he wants to say but it does not come out the way he wants it to. This, for him, is heartbreaking. However, it is important for him to continue increasing his dose of morphine so his pain is controlled. I would rather have his mental state weakened than feel the potential excruciating pain of cancer.
Our family has been coming over more frequently as we do not know when "the day" will come. Luckily, we have always had a pretty tight knit family but for those of you who have not spoken to a family member in a while, be it a couple days, month, or year, find time. Without our family support, this situation would seem nearly impossible. I love my family because Dad taught us to. He knows we will be OK without him because we have each other. Talk about an amazing situation to leave us in! Thanks Dad!
- I love quotes, especially from children's movies because they are so powerful, yet when you see them when you were younger you never realize their actual magnitude. So I like to finish off posts with my inner child-

"Ohana means family, family means nobody gets left behind. Or forgotten" - Lilo from Lilo and Stitch

Not late, just following directions

 Sometimes it is important to follow directions in order to keep someone happy.  In this case it is my oldest son.  When I say oldest I really mean it.  Oldest!  I usually post a birthday greeting on the day of the actual birthday but Matt wanted to keep this birthday on the QT.  His new work associates can find out later.  Well here it is,  HAPPY 31ST BIRTHDAY YESTERDAY!  I hope all went well and the traditional birthday week will continue to be enjoyable.  I love you.  Dad

What's going on?

Quick update as I start my 7th week on hospice.  My nurses have all given me good scores regarding my vital signs so my heart and lungs are keeping pace.  Unfortunately, my liver and kidneys along with the pain are not doing as well.  I can definitely tell my system is getting worse due to the fact I am always tired.  According to the nurses, the combination of increased fatigue and pain will continue until the end, not good. I had another good week from the standpoint of being able to get around.  My major trip of the week was being able to fulfill a promise I made to my oldest grand daughter.  I promised her that I would get her ears pierced for her 5th birthday and that I would be there for the piercing.  So, on Wednesday, I loaded up my transport chair and we headed for the mall.  Allison, Caroline, Owen and Vic were in the audience also.  We picked out some beautiful butterfly earrings and the process began.  I have to give Lillian a ton of credit because after the first one you know all the, "Don't worry, it won't hurt", is all a bunch of #%$^&*#. (fill in the blanks) That second one was going to hurt as much as the first and she still did it anyway. Happy Birthday Lil's, Papa Charlie loves you. Major Mission accomplished and not a moment too soon.  It was decided that Al and the kids had to get back home to Baltimore.  I'm sad to say they are now back home but I understand they had to get back to their lives.  Lillian needed to get organized for school, Caroline needed to get organized for her activities and Owen needed to get organized for more growing and living life in general.  I was blessed being able to have them with me for almost one month.  I was actually allowed to see them grow up, it was great.  It was funny when the kids and Al came over while we were getting a visit from my hospice nurse.  As we were sitting in the living room discussing my case, the door flew open and the excitement began.  Caroline was a bit crabby and was crying.  Lillian ran person to person to say hello with hugs and kisses.  Ramzi starting barking loud and long.  I now had to introduce Allison to the nurse with a little higher volume than we were using before.  The first thing the nurse asked me was, "Does all this bother you?" I laughed and said, "Absolutely not." I told her this was music to my ears and wouldn't have it any other way.  If this is not happening to you, get your family more excited to be together!
The hardest thing I had to do was say good bye to the kids and Allison.  Did I want them here when I pass?  I don't really know.  The more I think about it, the more I'm glad they will not be here.  I want their last memories to be happy ones and we have accomplished that for sure.  God has allowed me to see my grandchildren grow.  He also allowed the kids to bond with Sam and Ali, which was very apparent with how tight they are now.
Every day after the 4-6 weeks I was given by the doctor is supposed to be borrowed time.  Borrowed from who?  The only person who can give you more time on this earth is God.  I've come to the conclusion that if I am going to borrow anything from anybody, it will be time from God.  If He wants to give, I will be more than happy to receive but, when the time comes and the time runs out I'm ready.  Keep Praying!

The day after the Fair

I've starting writing this entry about 3 times now.  I've had to start over because I keep falling asleep.  I guess that is the sign that I had a wonderful day at the State Fair yesterday.  To tell the truth, wonderful is an understatement.  It was everything I dreamed it would be.  Lillian and Caroline were wide eyed and full of energy from the time we got there until the time we left.  The rest of the gang included Allison, Vic and Sam.  We missed Owen who was at home with a sitter and Ali who had to work.  Our plan was to see a few animals, grab some dinner and be out in a couple hours.  I thought this would be a good plan for me and the girls based on my energy level and their attention spans for looking at cows rear ends and unlimited fried anything.  Boy was I wrong! Once we got there, we were all energized.  Thanks Sammy for pushing me around in my transport chair, I could not have done the fair without it.  The girls walked through the cattle barn and loved seeing the cows up close.  They especially loved the fact that the cows had to take baths. Then we went looking for the horses.  The horses are my favorite animal at the fair and I hoped they were available to see.  I knew the girls would love to see the huge draft horses.  We walked for quite awhile until we found the horses and it was worth the walk because we got to see them up close.  The exhibitioner had pulled the horses out of their stalls to get them ready for the 6pm wagon pulling show.  They are huge.  We got to see them get washed and the girls loved that the horses had their hair braided.  What's next, who's hungry, what do you want to eat?  We were ready to go.  We decided to get something to eat and then we were going to see Katie Duesing who was working the trampoline ride.  We eventually found it and Lillian got harnessed up.  She jumped around a little and then found her stride.  With Katie's help Lillian starting going high enough to try a flip, and man did she flip.  She flipped forward and she flipped backwards.  She flipped more than I thought she ever could.  I think we have an athlete on our hands.  We started to leave and go onto our next adventure when Papa Charlie saw the pony rides.  I have to see my grand children on the pony rides before I go.  Both girls said yes so we paid, got them on the ponies and we were ready to go.  Or so we thought.  Caroline decided she didn't want to go without Nana.  So, in order to alleviate an eruption, Nana stepped up and walked next to the pony.  All it took was one time around and Caroline was fine but, Nana stayed walking with her the whole ride anyway.  Nana did find out the reason the workers wear boots instead of flip-flops and we also learned it all cleans off.  Time for more fun, "Let's go on the slide Sammy.  You have to go on it too Nana".  Their wish was my command.  Where is the slide?  After more walking we found it, got our burlap, climbed the stairs and Sam, Nana, Lils and Caroline flew like birds and went down the big yellow monster.  "Can we do it again, can we do it again?"was all I heard.  Just like any good Papa I answered with a loud, "let's get something to eat and come back later, ok?"  We all agreed and started the trek once again for food.  Burgers from the cattleman's grill, roasted corn, Millies Italian sausage or dessert.  What do we get?  We got them all!  After a short rest we decided to go back to the trampoline and Lillian showed her stuff again. After that we all looked at each other and started to think we were done.  I asked the girls and a past promise Papa made was brought to my attention.  The big yellow slide was to be done one more time and this time with a grand daughter's request.  Lillian sat in my lap and asked "Papa could you go with me down the slide?"  I couldn't say no.  I looked at the long run of stairs and told myself just take your time and you will never regret doing it.  I was right, that was the best slide ride I had ever taken in my life.  Whew, let's go home.  CREAM PUFF!!  We almost forgot the cream puffs.  Immediately Sam asked where is the cream puff place.  Unfortunately, I had to tell him he only has to push me across the entire fairgrounds to get there.  No complaints from anyone and we got our dessert.  Now it is time to leave.  All we have to do is walk from the back of the grounds to the front where we parked.  We were almost to the parking lot when Lillian noticed she had not gone on any rides like the Ferris wheel or roller coaster.  Were we lucky that we had to walk right through the mid-way to get to the car.  "12 tickets please " said Allison as she told the girls that they will be allowed 2 rides and we are done.  Ride #1 spinning tea cups, check.  Ride #2 roller coaster , check.  Both Lillian and Caroline had experienced the WI State Fair and I got to do it with them.  Thank God!  Thank God! Thank God!  I am paying physically today for my actions yesterday but, I can also re-live the experience mentally forever.  Keep praying.

This weeks update

I had an unusual week.  The "good day, bad day" scenario played out.  I had a couple of days that I would definitely consider bad.  I was not able to get myself out of bed because of the pain.  Vic did a wonderful job helping to manage the pain and learned as much as me in the process.  It is very important to stay ahead of any discomfort.  If you let it get away from you, you will not catch up and a day in bed will probably be the recipe for the day.  The hospice nurse is stopping in three times a week now and between her and Vic I feel very well taken care of.  We also met with our social worker  this week.  This will be an every two week occurrence and the information he can give us is invaluable. As part of the hospice package, the social worker makes certain you get what you need to be comfortable.  I mentioned we are going to try to make it to the State Fair this week with the grand kids.  I told him if I could handle this physically we would rent a wheel chair and go for the afternoon.  His immediate response was "what kind of chair do you need?". After talking about what would be best for me he ordered a Transport chair that will be delivered to the house in a couple days.  He said if you need something ..."Just Ask!"  My comfort is the goal and they mean it.
Overall it was a good week.  Allison is still here with the kids and I get to see them almost everyday.  Having them here with me has been so great for both them and me.  I thank Allison for staying as long as she can.  My older brother and his family came in from Minn to spend some time with me, which I really appreciate.  Vic's brother and family also stopped by last night. Sam and Ali came by after long nights at work.  What else can you do but have a huge family bon-fire, which we did.  It was a great night and it is something I will do whenever I can because I'm with family and making a smore is not physically demanding.  If God allows me to spend my finals days like this, I'll take it.  Another good week....Check!  Keep praying and I would love to hear from you.

One day at a time

Now that I have had an opportunity to put a couple of weeks together, I am understanding the final phase much better.  There is no secret like a special diet or vitamins or anything at all.  It is very simple. Everyday I will be getting a little worse than the day before.  The amount of decline may be very small but, there will a decline everyday.  When I talk about decline I am talking about a variety of different things.  Here is what has been going on lately.  Everyday I get more fatigued.  I don't need to sleep all the time, I just need to give my body a chance to gain some energy back.  It seems to take longer to recharge everyday.  My temperature is fluctuating more each day which means the amount of sweats I get is increasing.  Let me try to explain the "sweats" I get.  I can be sleeping, awake, moving or stationary and my body will do the same.  Its like someone is pouring water on my head.  I get what they call drenching sweats.  These get worse as each day passes.  My appetite will continue to get worse.  I will continue to lose weight.  These are the easy ones to deal with.  The one item that will be the toughest to deal with is the pain.  I have to keep an eye on pain meds everyday to make certain I am taking enough to stay ahead of the pain.  Unfortunately, I've been told that the actual pain will eventually outrun the benefits of the medication.  This is where Vic has her work cut out for her.  It is going to be her job to keep me as comfortable as possible until it is over.  God bless her!!
So in a nut shell, my decline is happening everyday and I have to accept that fact.  My job, with the help of everyone around me, is to stay as comfortable as possible and to be ready for the end. So far so good.  Oh yeah, time frame?  There is nothing set in stone.  Just accept the fact that I am getting worse not better and we all have to be ready.  Keep praying.